Personal Health Records
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this is a report of my summer internship that i had done in Ruby hall clinic(550 beds) Pune.Title of my project is "Feasiablity study of implementation of personal health records in Ruby hall clinic".

this is a report of my summer internship that i had done in Ruby hall clinic(550 beds) Pune.Title of my project is "Feasiablity study of implementation of personal health records in Ruby hall clinic".

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    Personal Health Records Personal Health Records Document Transcript

    • FEASABLITY STUDY OF IMPLEMENTATION OF PERSONAL HEALTH RECORDS IN RUBY HALL CLINIC I .T P a t i Dr. e n t Dr.Satya Prakash Mishra PGDM (Marketing+IT) HRD-09-6066 BIMHRD 2009-11
    • Content Page no. A.Acknowledgement 5 B.Executive summary 6 1.Ruby Hall Clinic 8 1.1. Introduction 8 1.2.Cardiac center 8 1.3.Orthopedic 10 1.4. Neurosurgery 10 1.5.Neurology 11 1.6.Nephrology 11 1.7.Obstetrics and Gynecology 12 1.8.Critical Care Unit 12 1.9.Cancer centre 13 1.10.Neuro-Trauma&Stroke 13 2.The Information Gap In Modern Healthcare 14 3.What is a Personal Health Record ? 15 3.1. What is new about the Personal Health Record? 15 3.2. Who will use the Personal Health Record? 16 3.3. WHY: the Personal Health Record 16 A. Making the Case for PHR 16 4.Vision for PHR 18 5.WHAT – Defining and Characterizing the Personal Health Record 19 5.1.Each person controls his or her own PHR 19 5.2.PHRs contain information from one’s entire lifetime and all health care providers. 19 5.3. PHRs are accessible from any place at any time. 20 5.4. PHRs are private and secure 20 5.5. PHRs are transparent 20 2|Page
    • 5.6. PHRs permit easy exchange of information 20 6.Minimum PHR data set 21 6.1.PHR v/s EMR 21 6.2.Implications for PHR developers 23 6.3.PHR/PHA offering in current market 25 7.Risks and Concerns about PHR 26 8.WHO – Users of Personal Health Records 28 8.1.Potential stakeholders include 28 9. Why personal health records? 30 9.1.Advantage of PHR 30 A. Improve the patient-clinician relationship 31 B. Increase patient safety 31 C. Improve the quality of care 31 D. Improve efficiency and convenience 32 E. Improve privacy safeguards 32 F. Save money 32 9.2.Sample of personal health record 33 10.Decision Support and the Personal Health Record 37 10.1.Foundations of decision Support 37 11.Function of PHR 41 11.1. Identification function 41 11.2. Medical history function 42 11.3. Other Relevant Information Functions 43 11.4. Systems functions 45 11.5. Planning Functions 50 11.6. Optional services 51 12.Personal health record policy areas 57 3|Page
    • 12.1. Key Obstacles 58 12.2. Content 59 12.3. Authorization 60 A. Editing professionally sourced information 64 B. Withholding professionally sourced information 64 C. Appending notes to professionally sourced information 65 D. Correcting professionally sourced 65 E. Sample Authorization to Use or Disclose Health Information 66 12.4 Privacy laws and regulations 69 A. Data Protection Law in India 69 12.5. Managing expectations and liability 73 12.6.Summary of e Risk Guidelines 75 13.Are consumer ready for PHR ? 76 14. Are clinician ready for PHR? 95 15.Creative advertisement. 106 16.Cost of implementing personal health records in ruby hall 123 17.Bibliography. 126 4|Page
    • A.Acknowledgement It gives me great pleasure and satisfaction for the completion of this project. Every successful piece of work has many invisible helping hands with their invaluable support and inspiration .I am really grateful the people who have in what every capacities that I interacted with them have helped me in completion of the project and gave me encouragement during the project. I give my sincere thanks to Mrs.(Dr.)Sujata Malik for giving me a opportunity to do my summer internship project in Ruby Hall Clinic ,Pune and guiding me at every step of my research. I would like to thanks to Mrs.(Dr.)Smita Dixit for their kind support and guidance. And also I would like to give my sincere thanks to all staffs of Ruby Hall Clinic who help me in completing this project. And last but not the least I would like to dedicate this project to my Mother Smt.Kiran Subhash Chandra Mishra whom I owe my existence ,without her support and encouragement.I would not be ,what I am today.Even the tiniest proton of my life belong to her. Dr.Satya Prakash Mishra 5|Page
    • A. Executive summary Project title: “FEASIBILITY STUDY OF IMPLEMENTATION OF PERSONAL HEALTH RECORDS IN RUBY HALL CLINIC” Location: Ruby Hall Clinic,Pune. Duration of project: The duration of project was 60 days from 1st May to 30th June 2010. Project undertaken by : Dr.Satya Prakash Mishra.(B.D.S.,PGDM 2nd Year.) Project guide : Mrs.(Dr.)Sujata Malik. Mrs.(Dr.)Smita Dixit. Project summary: The goal of the project was to capture patients and doctors attitudes toward Personal health records. Questionnaire was the tool for data collection . Patients liked the idea of keeping their medical records online. On the positive side, Patients liked the fact that they could e-mail their records to their doctor. They also liked that once personal health information had been entered, it became part of their permanent record and therefore they did not have to remember it later. They also believed that storing personal health information would give their children access to a more complete family health history .They also mentioned other benefits including the notion that online records are more credible to other professionals and could be used for referrals and when changing doctors. The PHR-like tools helped participants keep track of their medication history, which was especially important for those with a chronic illness. Participants did not express widespread concern 6|Page
    • about privacy and security but did voice frustration with the time and hassle it took to register and log into the system. Although the majority of respondents stated that they were comfortable with hospital accessing their medical record after they had given explicit permission. Respondents overwhelmingly stated that they would prefer to have their hospital host the online medical record tool. Respondents also reported that online medical records could help to improve their health care experiences. A strong majority believed that having access to their online medical records would help to remember their doctors’ instructions after an office visit .They are also agree to pay some amount for this service. They also believed that having their medical records online would give them a greater sense of empowerment regarding their health. Doctor’s survey was also done to understand how doctors would react to this concept. Results revel that only 20% patients come with a organized set of medical records; 42 % are coming with organized but with some records missing.49 % doctors believe that there may be chances for some vital information may missed due to unorganized presentation of medical records. 70 % doctors believe that Digital health records make patient more aware about his health to a great extent. It also helps doctor to guide there patient in a better ways. And also improves doctor’s efficiency. Digital health records reduce the chances of medical errors made by doctors, nurses, and pharmacists. It can also improve the quality of discussion between doctor and patient. It can also play a crucial role during emergency. 89 % doctors would you like to implement digital health records system in ruby hall. Doctors would also like to give prescription via e mail based on digital health records. 7|Page
    • 1. Ruby Hall Clinic 1.1. Introduction Ruby Hall Clinic the largest hospital in the private sector in Pune, It boasts of 550 inpatient beds including 130 for intensive care, with staff strength of 150 consultants, 500 panel doctors and 1400 paramedical staffs. When one trails the journey of 50 years of this institute one is amazed at the phenomenal work done by Dr. K B Grant, the 90 year old patriarch in this achievement .Dr K B Grant, now in his 90th year, was born in Tamil Nadu. He completed his graduation from Wadia College, and then went on to do his MBBS and MD (Medicine) from Grant Medical College, Mumbai. Ruby hall start under Dr .Grant with 3 bed and 1 consulting room in 1959.From 1959 to 1999 Ruby Hall Clinic expanded from 3 bed to 300 beds .In 1999 Ruby Hall Clinic grows from 10 ICU beds to 130 beds from 10 private rooms to 80 private rooms to keep pace with Pune’s population explosion. In 2007 it add an ultramodern cancer unit. Ruby Hall Clinic has put Pune on medical map of india .It had celebrated its golden jubilee on 28th November 2009. It is the first and only hospital in Pune to get NABH and NABL accreditation. Dr. Grant has received "Life Time Achievement Award’’ from many institutions and Universities like Pune University, Symbiosis, and Bharati University. A couple of years back he was awarded "PunyaBhushan" for his outstanding services to the people of Pune . Dr.Grant entered the Limca Book of records for being the oldest physician in 2009. The hospital was awarded “the best hospital to work” in a survey conducted by Economic Times last year. Ruby hall is a multi specialty hospital held in high esteem for the following specialty. 1.2. Cardiac center Ruby hall boast of a state of art , sophisticated cardiac centre which provides comprehensive cardiac care ,the latest on the cutting age of medical science in the field of diagnostic and therapeutic cardiology. Apart from having a all sophisticated equipment and highly trained staff to handle any acute medical or surgical emergency , the cardiac centre of Ruby Hall 8|Page
    • Clinic is India's first private hospital to designed, equipped and staffed solely for the treatment of cardiac condition. It has already gained an all-India reputation for its expertise in this area of medicine. The Cardiac Centre also has the following facilities: Echocardiography & Colour Doppler Studies Cardiac Catheterization laboratory Myocardial Perfusion studies (Nuclear Medicine) Stress Test 24 Hour Ambulatory holter Intensive Coronary care Unit Angiography Ruby Hall Clinic houses the most modern Philips Integris H 5000 systems. Two Cathlabs are fully functional. Around 700 procedures are performed every month. This unit is manned by highly skilled & qualified cardiologists round the clock. More than 75,000 Angiographies have been done so far in the Clinic. Coronary balloon Angioplasty & stent implantation Angiography was started in 1998 with an average of 6 procedure performed daily .stents are being used since October 1994. The department is also geared for arrhythmia studies ,electro physiological studies .RF ablation for cardiac arrhythmias, balloon valvuloplasties for rheumatic mitral stenosis, congenital pulmonary and aortic stenosis ,congenital pulmonary and aortic stenosis.The center also has facilities for rotablator angioplasty (diamond burr),temporary and permanent pacemaker implementation. Cardiac surgery The cardiothoracic department is a full-flagged unit manned by a team of cardiothoracic surgeons. The ultra modern operation theatres are equipped with the latest monitoring equipment, blood gas analyzers, heart-lung machines, ventilators etc. A 19 bedded recovery room complex is adjacent to the theatre. On an average 100 cardiac surgeries are done in a month. Surgeries on congenital heart diseases include CABGs, MICAS & valve replacements . Ruby Hall Clinic is fully equipped to carry out all cardiac surgical procedures, such as valve replacements, repair of diseased rheumatic and congenital valves. The doctors of the hospital have a vast experience in the use of valves and bioprosthetic valves. More than 20,000 CABG procedures have been performed at the hospital in the past 15 years. Since 1991 use of IMA and arterial conduits have become common in CABG operations in Ruby Hall Clinic . 9|Page
    • 1.3. Orthopedic The orthopedic Department, established in 1960 has been one of the best progressive Centers in the region. Catering to Trauma, Spine Surgery, Plastic & Hand Surgery ,Micro vascular Surgery, Pediatrics, arthroscopy & Joint Replacement. Through careful patient selection, several joint replacement surgeries (hip, knee, shoulder & elbow) with 100% success rate(over the past 7 years) have been done. Equally arthroscopic knee& shoulder surgeries are fairly routine with good results. With the backup of a dedicated Orthopedic Theatre, excellent, state-of-the-art instrumentation, laminar airflow, well-trained theatre staff and resident Orthopedic Doctors, the results have been excellent over the past 10 years, with infection/complication rates rivaling the best centers abroad .It is no wonder that complication from other centers in the region opinions at Ruby Hall’s orthopedics Department. 1.4. Neurosurgery The department of Neurosurgery has Neuro imaging and dedicated Neuro O.T. Neuro imaging facility has C.T Scan, M.R.I ,Bone scan and DSA studes. It has started endovascular intervention of Aneurysms and AVMs with GDC coils. Dedicated neuro theatre has laminar air flow providing contamination free atmosphere aiming zero infection rate for planned surgeries. It has dedicated Neuro staff , cavitron surgical aspirator (CUSA),wild microscopic ,`C’arm, neuroendoscope with endoscopic disc excision and with this micro drill system of Aseculp and Stryker which facilitate all microneuro surgical procedure with comfort. Recently it added neuro endoscope to our armamentarium with endoscopic disc excision and with this minimal invasive brain surgery is now possible with low morbidity and mortality. 1.5. Neurology The department provides an array of specialized secondary and tertiary neurological consultative service and has a high success rate. Headed by a most respected senior consultant and the best of staff. Consultations, diagnosis, operations and management of patients with suspected dementia, Alzheimer's disease, amnesia, aphasia, language problems, head injury, visual impairment epilepsy, brain tumor, cord and neuromuscular disorders. Evaluation and treatment of Parkinson disease, tremor and dystonia. 10 | P a g e
    • Fully supported with investigational facilities it was first country to have CT Scan and MRI and the MRI studies include MR angiography ,diffusion and perfusion scan. Routine nerve conduction, EMG, Evoked potential and EEG are available on a regular basis. 'The department is backed by a full fledged trauma intensive care unit for treatment of strokes, head injuries, and comatose patients. 1.6. Critical Care Unit One of India's largest intensive and Coronary Care Complex Today Ruby Hall Clinic has got 132 Intensive Care beds of which 56 beds are for Acute Coronary Care & Critical Care. What is special about this critical care unit? Minimum bed space requirement by international standards is about 120 sq. ft. per patient which is met with continuous supply of piped gases like oxygen, air suction from the central reservoir assures least chances of failure and no time wastage in manual labor of changing the gas cylinders. Very sophisticated 'monitors' have been developed which not only watch but record the trends and warn the attending staff about life threatening incidents in a patient. For patients with severe complex shocks, cardiac output monitoring is performed bedside. Latest generation Hewlett Packard monitors have also been installed for the same purpose along with the central monitoring facility. To give best possible artificial respiratory support a large number of ventilators from Siemens have been installed. When, due to generalized unstable condition, a patient may not be able to be shifted to the kidney unit, facility for bedside hemodialysis is also available in the modern ICU complex . We offer one of the only BM-25 machines for CWH in critically ill patients with renal failure in India. Ruby Hall ICU & CCU also specializes in shifting high risk patients within the departments for the investigations and surgeries with accompanying equipment and personnel. With such facilities, it is no wonder that this unit is a " tertiary referral centre" for other ICUs and hospitals. For this purpose "emergency care ambulance" is available to shift the unstable patients to and from other hospitals. This unit is also recognized for Certificate Course in Critical Care Medicine by Indian Society of Critical Care Medicine and now for post doctoral fellowship (DNB) in Critical Care Medicine. 1.7. Obstetrics and Gynecology IVF - Endoscopy Centre 11 | P a g e
    • The Department of Obstetrics and Gynecology, of Ruby Hall clinic is equipped with all modem diagnostic facilities and can cater to all types of Obstetrics and Gynecological cases. It also runs a regular prenatal course which has become very popular among young pregnant women in Pune. It also offer regular screening of uterine & breast cancer which includes mammography .IT is now expanded its service and takes pride in presenting IVF - Endoscopy surgical Centre which has been design guideline of Sydney –IVF centre .The unique feature of his centre is its world class technology to conduct advance lapro-hysteroscopic surgeries .To conduct endoscopic and IVF training course , a special conference room with the relay from endo OT and IVF is also designed. 1.8. Nephrology Kidney transplant and Renal dialysis unit Ruby hall clinic is one of best centre in the country for treatment of patient with renal disease and end stage renal failure.It has an interegrated program for the management of renal failure including haemodialysis,CAPD ,Aphearasis.the department of nephrology has highly qualified,well trained and experienced nephrologists.the dialysis unit 9 modern haemodialysis machine and a trained nursing staff who treat the patient round the clock.appox. 25 patient receive dialysis per day and unit has done over 50,000 dialysis over 20 years. The institution was the pioneer in renal transplantation,performing the first living related renal transplant and also the first cadaver renal transplant in Pune.It received a certificate for honor for performing the first cadaver transplant in the state of Maharastra outside Mumbai.Till now more then 500 living related and cadever transplant have been performed. 1.9. Cancer centre Ruby hall Clinic has setup high tech cancer centre to provide excellent cancer treatment for its patients. Housed with state of art infrastructure ,the seven storied cancer centre promises holistic cancer treatment. The facility includes Radiation therapy,Chemotherapy,6 operation theatres, day care centre, and research centre along with the support services like conference rooms, coffee shops and pharmacy. The centre lays special emphasis on day care and domiciliary treatment which involve minimum hospitalization .The centre offer beautifully designed surgical as well as 12 | P a g e
    • chemotherapy Day care centre .The centre offer treatment by means of the latest technology and the overall focus is towards healing and not just treatment . The Radiation unit is the 1st in Asia to provide image guided radiotherapy (IGRT).The centre also Intensity Modulated radiation therapy(IMRT).The cancer centre has introduced distinctive module like the specialty OPDs and Mobile Screening units. Ruby hall clinic has entered with 10 years collaboration with “Siemens” for all technological and product developments being done. This agreement identifies Ruby hall Clinic as a “Siemens beta site ” and is the fifth site in the world and Asia’s only beta site. 1.10. Neuro-Trauma & Stroke Unit The Neuro-Trauma unit is a dedicated 18 bedded unit .each bed is a special Trauma bed with accompanying central oxygen supply, Air supply ,central suctioning and continuous monitoring with specific intracranial monitoring facility for patient .each bed also has advanced ventilatory monitoring facility .this dedicated unit is manned by a neurologist, neurosurgeon ,and consultant intensivists round the clock, supported by highly trained Nursing and Paramedic staff. Ruby hall has also started a national institute of pre hospital care and trauma management in collaboration with Rotary club of Birmingham. Main focus of this institute is  Pre hospital care management.  Trauma care.  Disaster management.  Community educations. 13 | P a g e
    • 2.The Information Gap In Modern Healthcare Information is the currency of modern health care. Knowing one’s family background, history of diagnoses and procedures, test results and medications and diet and exercise habits is essential to managing health, assessing problems, and preventing medical error. Today medical information is scattered among the many health care providers people see throughout their lives. It is stored in individual memories, on scraps of paper and in spreadsheets on personal computers. Some doctors and hospitals keep computerized medical records, but most personal health information is stored in thick paper files that line office walls. These paper-based systems are often disorganized, illegible, prone to error, difficult to transfer from provider to patient or specialist and they usually do not include information contributed by patients. In the paper-based world of medical records, there is no coordinated system, no standardized, private and secure way to integrate anyone’s health information in one place. A visit to a new doctor means new forms to complete, new tests to run and new conversations reviewing personal medical history -- conversations that depend almost entirely on memory alone. People need effective tools to help them manage their health and Health care. The electronic personal health record (PHR) can help solve this problem for patients. PHR is a single, person-centered system designed to track health and support health care activities across one’s entire life experience. It is not limited to a single organization or a single healthcare provider. 14 | P a g e
    • 3.What is a Personal Health Record? The Public health working group describes PHR as: an electronic application through which individuals can access, manage and share their health information, and that of others for whom they are authorized, in a private, secure, and confidential environment .The Personal Health Record (PHR) is an Internet-based set of tools that allows people to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it. PHRs offer an integrated and comprehensive view of health information, including information people generate themselves such as symptoms and medication use, information from doctors such as diagnoses and test results, and information from their pharmacies and insurance companies. Individuals access their PHRs via the Internet, using state-of-the-art security and privacy controls, at any time and from any location. Family members, doctors or school nurses can see portions of a PHR when necessary and emergency room staff can retrieve vital information from it in a crisis. People can use their PHR as a communications hub: to send email to doctors, transfer information to specialists, receive test results and access online self-help tools. PHR connects each of us to the incredible potential of modern health care and gives us control over our own information. 3.1.What is new about the Personal Health Record? The PHR is a single, person-centered system designed to track and support health activities across one’s entire life experience; it is not limited to a single organization or a single healthcare provider. The PHR differs from the electronic medical record (EMR) - a computerized platform for managing detailed medical information collected during a hospital stay or in a doctor’s office. EMRs usually contain a health history, doctors’ notes and laboratory and radiology results and are generally owned by and limited to the information collected by one doctor or hospital. The EMR rarely contains information provided by the patient. Not all doctors use electronic medical records and many different systems exist, so when people change doctors or move to a new city their personal health information does not move with them. Health professionals are now adopting new data standards that will make transfer of clinical data between doctors more common, but even connecting different doctors’ medical record systems will not tie together all the important health information for each patient. An EMR might indicate that a doctor wrote a prescription, but it would not show whether the patient filled the prescription, took the medication or if the treatment 15 | P a g e
    • worked. EMRs can supply information to PHRs, but the PHR will also capture information from many EMRs and directly from patients. 3.2.Who will use the Personal Health Record? The individual person is the primary user of the PHR. That person may allow access to all or part of the PHR to anyone - a doctor, family member, employer, summer camp, or insurance company. Other potential PHR users are “stakeholders” who - when the primary user of the PHR gives his or her permission - can make valuable use of the information being kept in the personal health record. In addition to the individual patient, doctors and hospitals may benefit from having quick, inexpensive access to medical information. Employers and insurers may be better able to evaluate and reward high-quality care by looking at aggregate data. Researchers and advocacy organizations can assess patterns of disease and treatment across the health care system. Public health officials may be able to detect disease outbreaks. The government and society as a whole may see significant gains in efficiency as more medical decisions are based on current and accurate information. All of these benefits can result from individual users’ willingness to share selected health information with the stakeholders mentioned above. 3.3.WHY: the Personal Health Record A. Making the Case for PHR Imagine going to a new doctor and the office requests information regarding insurance, medical problems, medications, allergies and recent lab work. By accessing a PHR, one could print a copy of the necessary information or even transfer a digital copy of the information into the new doctor’s system. After the visit ,the doctor could send an update of new medications and the results of any lab or diagnostic tests directly to the individual’s PHR and alert him or her that new information was available for review. When that individual goes to see a specialist, that same information could be made available, in printed or digital format, for the specialist to access and review. Upon leaving the specialist, any new problems, medications, lab or diagnostic tests from the specialist would transfer directly to the patient’s PHR. If a new school asks for a child’s immunization records prior to admission, a parent could access his or her child’s PHR and print a copy to send in. Finally, in the case of an emergency, emergency room personnel could access an individual’s 16 | P a g e
    • PHR to obtain pertinent medical information reducing the chance of a medical error, increasing the speed and accuracy of the diagnosis and reducing the potential for unnecessary or duplicative tests. 17 | P a g e
    • 4.Vision for PHR : PHR is an Internet-based set of tools that allows people to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it. PHR offers an integrated and comprehensive view of health information, including information people generate themselves such as symptoms and medication use, information from doctors such as diagnoses and test results and information from their pharmacies and insurance companies. Individuals access their PHRs via the Internet, using state-of-the-art security and privacy controls, at any time and from any location. Individual PHR users decide who can see their medical record. Family members, caregivers, doctors or school nurses can see portions of a PHR when necessary and emergency room staff can retrieve vital information from it in a crisis. People can use their PHR as a communications hub: to send e- mail to doctors, transfer information to specialists, receive test results and access online self- help tools. Individuals can manually enter information into their PHR and doctor’s offices, hospitals, labs and pharmacies can auto-populate PHRs by way of interfaces such as electronic transcription or secure messaging. PHR connects each of us to the incredible potential of modern health care and gives us control over our own information. PHR has the potential to save hundreds of hours in time and reduce the cost of health care. By making health information available when it is needed, PHR could help decrease duplicate testing, transfer records more efficiently, reduce adverse drug events and improve preventive care and disease management. PHR is likely to yield considerable cost savings Several studies have already shown that similar technology such as the Electronic Health Record and Ambulatory Computer Physician Order Entry systems contributed to lower costs and improved quality of care by having the necessary medical information available when decisions needed to be made. 18 | P a g e
    • 5. WHAT – Defining and Characterizing the Personal Health Record The PHR has several distinct attributes: 1. Each person controls his or her own PHR. Individuals decide which parts of their PHR can be accessed, by whom and for how long. 2.PHRs contain information from one’s entire lifetime and all health care providers. 3.PHRs are accessible from any place at any time. 4.PHRs are private and secure. 5.PHRs are “transparent.” Individuals can see who entered each piece of data, where it was transferred from and who has viewed it 6.PHRs permit easy exchange of information with other health information Systems and health professionals. 5.1.Each person controls his or her own PHR. Simply put, individual PHR users decide which parts of their PHR can be accessed, by whom and for how long. The person (patient or consumer) owns his or her PHR and can designate others (family, caregivers, clinicians) to manage it for them. Individual users can enter their own information and they may authorize others to add specific types of data into their PHRs. Users or their designee(s) can expect that their PHR remains private, and they can expect that systems that help them manage their PHR will use accepted security measures to prevent any unauthorized access to their data. 5.2. PHRs contain information from one’s entire lifetime and all health care providers. PHR should be a portable record that aggregates and integrates information from multiple health care professionals and systems and from the patient directly .Unlike many electronic medical records that often only contain episodic and illness-related information, PHR contains an ongoing, longitudinal and life-long record of information that bridges both wellness and illness. 19 | P a g e
    • 5.3. PHRs are accessible from any place at any time. Individual users, their providers and other caregivers can access up-to-date health information using the PHR at the point of care or any time they need it – with appropriate permission. Economic or electronic barriers (such as Internet access in emergency rooms) should not preclude the availability of PHR information. 5.4. PHRs are private and secure. One can envision a highly restrictive model in which every access must be authorized in advance, but only a small minority of consumers would find this beneficial. In some cases, people may wish to grant full, unfettered access for providers with whom they have an ongoing relationship. In addition, there should be a "break glass in case of fire" override available for providers who care for patients in emergency situations (EMT, ER, etc.)The confidentiality of these two more permissive modes can be enhanced by allowing consumers to access an "audit trail" that lists who has accessed their record, when and from where. This provides an added deterrent against inappropriate usage by individuals who have access privileges. 5.5. PHRs are transparent Individuals should be able to see who entered each piece of data, where it was transferred from and who has it. Each piece of information that is added to the PHR should be attributable to its source, with all reasonable measures used to verify both the data and its supplier. This feature supports the premises that the individual has total control over his or her PHR and that the PHR is private and secure. 5.6. PHRs permit easy exchange of information In order for PHR to be comprehensive, exchange of information with other health information systems and health professionals is essential. The user should be able to transfer information between their PHR and other online records based within health plans, pharmacies, doctor’s offices and hospital systems. Standards play an essential role in facilitating the secure interaction between PHRs and other systems. A minimum data set could establish the types of information that, where available within other electronic systems, could be accessed by the PHR electronically. The minimum data set might include personal and emergency contact information, physician and insurance information, health 20 | P a g e
    • conditions, medications, allergies, immunization history, certain test results, surgical history, health risks, lifestyle information and advance directives. 21 | P a g e
    • 6.MINIMUM PHR DATA SET As stated above, PHR should allow consumers to integrate their personal health information from multiple sources, including different providers and health care systems, and to leverage that information to better manage their own health and obtain improved quality and consistency of care. In order to facilitate this process, data sources such as pharmacies, doctors’ offices and hospitals, need to capture and store essential information about each patient in a standard format, and be able to exchange that information easily with appropriate permissions. The preliminary data set includes only the data necessary to communicate an accurate health history to new or emergency care providers, as well as the data necessary to help the individual user identify appropriate disease management or other resources. When the elements within the minimum data set are transferred from an existing record to the PHR, deletions and/or edits should be reflected in an audit trail accompanying the data. Similarly, each data element should be associated with a date and time of entry and the identity of the person who entered it. In order to maintain authenticity, only the information source should be able to directly edit the information that becomes part of the data set. Additional mechanisms of user authentication and authorization must be in place for these data to be shared. 6.1.PHR v/s EMR Electronic medical records (EMR) are being used in a small but increasing minority of physician practices. EMRs usually contain a health history, doctors’ notes and laboratory and radiology results and are generally owned by and limited to the information collected by one doctor or hospital. They are essentially electronic versions of the familiar binders of paper notes and test results that are kept by doctors and hospitals, and often include integrated clinical decision support and workflow enhancements. Through the use of information technology, the EMR has made storing, retrieving, displaying and analyzing patient information easier than in paper-based systems. The data in the EMR is primarily intended for medical providers and it rarely contains information provided by patients. Patients have the right to review the information in their medical records, and several institutions have made data from the EMR available to patients through a “patient gateway,” however the EMR is “owned” by the doctor or the institution that creates and maintains it. 22 | P a g e
    • Not all doctors use EMRs and those who do are not necessarily using systems that can exchange data with other EMRs or information systems, so when people change doctors their personal health information rarely moves with them in an electronic form. Health professionals and organizations are now adopting data standards that will make electronic transfer of clinical data between doctors more common, but even connecting different doctors’ EMRs will not tie together all the important health information for each patient. An EMR might indicate that a doctor wrote a prescription, but it would not show whether the patient filled the prescription, took the medication or if the treatment worked. By contrast, the PHR facilitates easy access to and portability of one’s medical information. It incorporates lists of allergies, medical problems, medications, doctors and key studies that many patients already compile for themselves. It includes information from many institutions and doctors, covers the patient’s entire lifespan, and is “owned” by the patient. At the individual’s request, data such as immunization history or current medications can be imported from and transmitted to interested parties (doctor, pharmacy) to assist in self management and coordination of care. The PHR depends on EMR. EMRs supply information to PHRs; the PHR captures information from many EMRs and directly from patients. EMR PHR Control of Provider or institution decides Person controls the data within information what is in the EMR. the PHR and decides who can stored in the record access which parts of it. Access Any authorized clinical or support PHR can only be accessed with staff in the doctor’s office or patient’s consent (with possible institution as part of routine exceptions for emergencies). medical practice may access the EMR. Origin of information Primarily from one practice or Cross-institutional. in the record institution. Person’s entries into Rare Common the record Users Professionals in the office or Used by the individual person for institution. self-care and record keeping. May be shared with medical professionals for continuity of 23 | P a g e
    • care. Integration with Provider-centered medical Person-centered self-care decision support tools management. Source of information Important source of person’s data Important source of for other systems for the PHR. person’s data for the EMR. 6.2. Implications for PHR developers: The common data set is neither a minimum data set nor the maximum allowable data set for PHRs. However, it should be the default set of fields that any PHR developer tries to use first to drive any of its functions. This is an important distinction because we do not view PHRs solely as repositories of retrospective health information. Some PHR models are much broader, featuring an array of transactional services (e.g., e- consultations or online prescription refills) or other health management software (e.g. risk assessments, health expense tools). Other PHR models may specialize in a narrower issue (e.g., diabetes). Any of these applications may require additional data fields beyond those in the common data set. Conversely, they also may never need some of the fields in the common data set. The common data set doesn‘t limit these models; it is simply the starting point for identifying data storage and exchange fields. Further, we recommend that rather than creating their own common data field standard, PHR developers should first try working with existing standards emerging for minimum data sets of clinically relevant patient information. Critical criteria for any such common data set should be: •Acceptance by the medical community and consumers. •An HL7-compliant platform for secure data transfers. •A clear upgrade path and incentives that lead to the universal population of common data fields with standardized controlled clinical vocabularies. 24 | P a g e
    • C D SET C D SET PHR C D SET C D SET EHR 1 EHR 2 COMMON DATA SET COMMON DATA SET Each of the arrows marked —common data set“ could represent an independent transaction, providing multiple means by which the patient‘s basic information can be exchanged with proper authorization. Through standardization, the minimum available fields are always the same, which lowers costs for vendors and IT Departments to support interoperability. Each transaction is time-stamped and source-stamped.Vendors can compete on such things as the intelligence they can apply or presentation features they bring to the data, but all accommodate a basic level of information exchange. Final step toward standardized vocabularies is vital to achieve many of the long-term efficiency and likely safety gains from automating the exchange of consistently codified patient data across the healthcare system. For example, in the above diagram, if all of the information exchanged were codified by common Clinical vocabularies, the EHR and PHR applications could conceivably apply intelligence to bundle the information in useful ways, such as bundling related data fields to track progress in specific areas over time. 25 | P a g e
    • By contrast, if all of the information were free text, then the end users of the applications – either the patient or the clinician – would likely have to apply their own time and intelligence to make sense of information, possibly by manually going through each data transaction chronologically. However, because of the widely varying technological sophistication and investment resources among healthcare providers, this final step is likely to evolve at a slower pace. Without some combination of incentives, standards or competitive pressures, it may not evolve meaningfully at all. Although we strongly support the movement toward standardization of clinical languages, we don‘t want the first steps (i.e., common data fields and common secure data transfer protocols) to be held up by the lagging final step (i.e., standardization of code sets and vocabularies). 6.3. PHR/PHA offerings in the current market (Source :American Health Information Management Association) Product Name Format Cost AboutMyHealth Internet Service Free CapMedPHR Software Program Purchase Caregiver All ance Web Services™ Internet Service Purchase CheckUp Software Program Purchase Compiling Your Family Health History Paper-based Purchase Dr. I-Net Internet Service Free DrGlobe.com Internet Service Purchase EMRy STICK Software Program Purchase Follow Me Internet Service Purchase Full Circle Registry Internet Service Purchase GlobalPatientRecord Internet Service Purchase Google Health Internet Service Free 26 | P a g e
    • Handymedical.com Internet Service Purchase Health File Software Program Purchase Health Minder Software Program Purchase Health Profiler Software Program Purchase Health Records Online Internet Service Purchase Healthcare Passport Paper-based Purchase HealtheTracks™ Paper-based/Internet Service Purchase 27 | P a g e
    • 7.RISKS AND CONCERNS ABOUT PHR Although PHR has many potential benefits, but there are also a number of impediments that have hindered its widespread adoption. 1. Worldwide electronic access to one’s personal health information raises both privacy and security concerns. Users may fear embarrassment or discrimination if an unauthorized person sees their health information. The need for robust security will have to be balanced with the need for PHR to be easily accessible; perfect security is incompatible with perfect utility. For security, systems will be needed to authenticate users. Such systems may include technology such as smart cards, hardware tokens or independent agencies that provide digital signatures or certificates to confirm the identity of PHR users. To maintain privacy, people need mechanisms that will allow them to specify what parts of their PHR will be shared with specific providers and institutions. 2. At the same time, emergency room personnel need to be able to access a patient’s PHR when necessary. PHR systems need to allow them to “break the glass” to view the information stored in the PHR when the patient is too incapacitated to provide explicit permission. Such access needs to be audited and reported to the patient or caregiver to make sure it is appropriate. 3. Caregivers can be more effective in helping a loved one manage their care if they have access to a PHR. This is especially important for children, the elderly and others who might be unable to use computer technology or make health care decisions for themselves. PHR systems should permit a patient to grant another person full access to their own PHR in these situations. 4. The person-centered nature of PHR poses some issues for data integrity. The sources of data in the PHR must be identified and the system must include mechanisms for correcting errors or inconsistencies. Patients may inadvertently introduce inaccurate data directly, or create inaccuracies by editing data that comes from elsewhere. Since the PHR may not be complete, it should not be the only tool for transferring data from one doctor to another, although it will certainly help streamline the process of data transfer. PHR data exchange 28 | P a g e
    • standards will need to include ways to identify incomplete or censored data so that recipients will be aware of data limitations. 5. PHR may initially be available to more affluent patients and those affiliated with advanced integrated health systems. Patients with lower incomes and lower levels of literacy, bear a disproportionate burden of disease, but are less likely to have experience with or access to the Internet. In addition, people with lower income and literacy levels are less likely to have access to health care, a regular physician, and overall receive lower quality health care. Finally, poor people and those less educated are less likely use the Internet to search for health information online as compared to affluent. Taken as a whole it is possible that those people who could most benefit from a PHR – i.e., those in the poorest health and with the lowest access to a regular source of health care – may be the least likely to have access to a PHR. Devoting resources to supporting the PHR could potentially divert resources from the underserved only to produce marginal benefits for those who already enjoy good care. Over time, however, experience with the Internet is becoming increasingly common in all strata of society, and inequities in access to and the value of the PHR should become less problematic. 6 .PHR would create new demands on providers even though there is no evidence that indicates this is the case. It is also speculated that more informed people might expect their doctors to assist in interpreting and acting on information that became available from sources other than that physician. 7. The flow of information and the authority to view it raises unresolved questions related to the policies and procedures for PHR use. Transfer of worrisome test results (such as HIV status or pathology reports) directly to the patient may need to be put on hold until the doctor can review them and help the patient interpret them. Psychiatric records may need to be embargoed, as they can be burdensome and counter-therapeutic for the patient to read. Doctors may have acquired and charted sensitive information – for example, provided in confidence by family members – that should not be accessible to the person’s PHR. 29 | P a g e
    • 8.WHO – Users of Personal Health Records The individual person is the primary user of the PHR. That person may allow access to all or part of the PHR to anyone - a doctor, family member, employer, summer camp or insurance company - indefinitely or for a set period of time. Other potential PHR users are “stakeholders” who, when the primary user of the PHR gives permission, can make valuable use of the information kept in the PHR. In addition to the individual user, doctors and hospitals may benefit from having quick, inexpensive access to medical information. Employers and insurers may be better able to evaluate and reward high-quality care by looking at aggregate de-identified data. Researchers and advocacy organizations can use it to assess patterns of disease and treatment across the health care system. Public health officials may be able to detect disease outbreaks. The government and society as a whole may see significant gains in efficiency as more medical decisions are based on current and accurate information. All of these benefits can result from individual users’ willingness to share selected de-identified health information with the stakeholders mentioned above. 8.1.Potential stakeholders include: 1.Care Providers • Primary care providers & Medical specialists • Emergency department staff • Hospital and clinic staffs • Alternative care providers • Employers • Schools • Home health care providers • Nursing homes • Pharmacists • Medical equipment providers • Disease management companies/care management programs • EMT/paramedics • Public health care providers 2.Administrators • Payers • Health Plan administrators • Hospital administrators 30 | P a g e
    • • Employers 3.Researchers and advocates • Patient advocates • Health services researchers • Quality improvement/outcomes researchers • Biomedical researchers 4.Public health professionals • Community health agencies • State, county and federal health agencies 5.Vendors & application developers 6.Employers and employer coalitions 7.Government Agencies 31 | P a g e
    • 9. Why personal health records? Every one of us is touched by the health system from before birth until death. During our lives, we experience both predictable and unpredictable needs for healthcare assistance. Every time we encounter the healthcare system, information about our background, medical history, health status, and insurance is immediately required. In all those files of paper and streams of data, no one has a bigger stake in the information from a particular clinical encounter than the patient who needed it. And, in nearly all circumstances, no one in the that system can know more about the person‘s life than patient. For example, the doctor might see in your chart that you were prescribed a medication. But without asking you, the doctor doesn‘t know whether you actually took the medication, how well it worked, what other remedies you‘re taking, or whether you had side effects And every medical encounter produces its own trail of documentation. Important information is also kept by insurance companies, pharmacy benefit managers, retail pharmacies, hospitals, labs, physical and occupational therapists, alternative medicine facilities, and so on. Historically, these many actors in our health care have not found it worthwhile to manage information collaboratively or to routinely share it with their patients. As a result, health professionals have no way of accessing all of the important information about our health, and we have no way of compiling and managing the information about ourselves. And even motivated patients have no reasonable and efficient way to share information about themselves with their healthcare providers. Institute of Medicine‘s finding that the healthcare system is broken and that an investment in information technology is necessary to help fix it. In our fragmented and pluralistic delivery system, the electronic personal health record is an essential tool for integrating the delivery of healthcare and putting each patient at the center of their care. It can support the shift from episodic and acute care toward continuous healing relationships with physicians and healthcare professionals. It represents a transition from a patient record that is physician-centered, retrospective and incomplete to one that is patient-centered, prospective, interactive and complete. PHRs are early in development. A great deal of study is needed to measure the impact, potential benefits and potential risks of PHRs. 32 | P a g e
    • 9.1.Advantage of PHR : A.Empower patients and their families PHRs give people a better way to -  Verify the accuracy of the information in their medical records at care providers‘ offices.  Gain a deeper understanding of the health issues and decisions they face.  Share in the decision-making process and assume a greater responsibility in their care.  Monitor important data about themselves on a regular basis, such as blood pressure readings, symptoms, medical visits,glucose levels and other periodic information, particularly in managing chronic conditions.  Provide a convenient way to involve friends and family as needed in the care situation.  Remember to schedule appropriate preventive services. B.Improve the patient-clinician relationship Patients with PHRs can  Improve their communication with clinicians.  Engage in continuous relationships with physicians and healthcare teams. Clinicians can:  Better document their communication with patients, potentially reducing their exposure to medical malpractice liability.  Increase the ratio of —quality time“ with patients, spending less of the visit on administrative and information-hunting functions. C.Increase patient safety Information from patient-controlled PHRs can:  Alert doctors and patients to avoid potential drug interactions, contraindications, side effects and allergies.  Alert doctors to missed procedures and lapses in adherence to treatment regimens.  Alert doctors to test results that are misfiled or misplaced. D.Improve the quality of care Information from PHRs can help:  Doctors have a more complete history of the patient to make more accurate diagnoses. 33 | P a g e
    •  Patients improve their continuity of care with consistent, up-to-date information provided to all clinicians – across time ,between institutions, among multiple physicians and caregivers.  Patients increase their understanding of and engagement with physician recommendations and disease management plans.  Caregivers keep track of the health information of ailing loved ones. E.Improve efficiency and convenience PHR has the potential to help:  Patients avoid bureaucracy in tracking down their information.  Doctors reduce duplicative tests that otherwise would be ordered for lack of up-to- date information.  Patients and clinicians take advantage of asynchronous, secure communications tools rather than play inefficient — “telephone tag ’’. F.Improve privacy safeguards  Patients can authorize specific providers to have access to their PHR, allowing for greater selectivity of information sharing. Information gated by proper user authentication can be more secure than paper files. G.Save money Health systems that have implemented early versions of PHRs expect to  Reduce the number of unnecessary, duplicative tests.  Increase the efficiency of making and responding to requests for information from various providers.  Improve the outcomes of care for people with chronic conditions, who have the greatest need for PHRs.  Reduce the costs of medical malpractice.  Save professional, administrative and patient time. 34 | P a g e
    • 9.2Sample of personal health record:  Personal detail • Name : Kiran mishra • Sex : Female • Age : 54 Yrs • Address : 6,bandichod marg, Dhar (M.P.),454001 • Mob no. : 93000382054. • Person to contact in emergency: Dr.Satya Prakash Mishra(son) (9595938865) • Insurance agent : Hierendra Jain (9425066773) • Family physician : Dr.P.K.Jain (9827285209) • Blood group : B (+ve) • Allergic to : Develop rashes on contact with metal other then gold. • Family history: Father was suffering from diabetes and arthritis . Dies at age of 75 mother dies due to brain hemorrhage at age of 35.  Past medical history:  Minor surgery for ulcer at neck 3 yrs back  Suffering from excessive sweating for 1 yrs (3ys back)  Multiple recurrent boil @ axilla , neck, trunk.  Mild hypothyroidism  Present health condition:  Having hypertension on medication from last 3 yrs.  Current medication :Tab.Telma am -1 OD (from last 6 month) 35 | P a g e
    • Blood pressure 180 160 140 120 100 80 60 40 20 0 Nor mal 2.4.0 10.4. 18.1 25.0 13.0 17.0 23.0 08.0 10.0 value 8 08 2.08 5.09 8.09 8.09 3.09 3.10 4.10 (mm HG) Systole 120 150 140 130 160 136 150 160 160 140 Diastole 80 100 100 90 94 80 80 98 100 90 Systole Diastole 36 | P a g e
    • Blood Sugar 160 140 140 140 123 120 110 108 100 86 93 80 75 80 60 40 20 0 Fasting blood Post meal Random sugar blood sugar Blood sugar 13.11.08 86 108 80 02.06.09 93 123 75 Normal value 110 140 140 13.11.08 02.06.09 Normal value Lipid profile 250 200 150 100 50 0 13.11.08 seru HDL LDL VLDL Trigly HDL 02.06.09 m chole chole chole cerid :chole Normal chole strol strol strol es strol strol 13.11.08 223.5 43 149 30.9 154.5 5.1 02.06.09 149 48 82 14.9 71 3.1 Normal 160 55 185 30 150 5 37 | P a g e
    • Haemogram 80 70 60 50 40 30 20 10 0 Total Haemo Neutro Lymph Monoc Eosino Basoph WBC globin phill ocyte ytes phill ill (10^3) 13.11.08 11.3 10.3 62 30 4 4 0 02.06.09 10.4 7.6 48 45 2 5 0 Normal 14 7 75 40 10 6 1 13.11.08 02.06.09 Normal 38 | P a g e
    • 10.Decision Support and the Personal Health Record 10.1.Foundations of decision Support The idea that computers might help clinicians make decisions – render diagnoses, craft treatment plans, give advice – was among the first exciting uses, or potential uses, for computers in health care. It seemed a small step from the imperative to use information technology for storing patient information to seizing the opportunity presented when intelligent machines could be used to analyze that information. It turned out that a larger step, or many of them, would be needed if users – now including patients, in principle – were to realize the opportunity of computer-assisted diagnosis or any other kind of decision support. Clinical decision support systems or expert systems (for their attempts to emulate human experts) were and for the most part remain inferior to their human counterparts. But competing forces are at work. One force is that human inferential capacity, including the ability to incorporate background knowledge, is difficult to trump. The countervailing force consists in the quotidian limit on human objectivity, memory and recall; there is just too much to remember without bias, preference or the vagaries of cognitive function. Computers are objective and can summon vast amounts of information. Humans try to be objective but can rely on inferential strategies fueled by observations, knowledge about how people behave and understanding of links between and among seemingly unconnected facts. Personal health records (can) incorporate varying degrees or levels of decision support. Most such applications have long been in use in other contexts and are quite basic and hence uncontroversial: Reminder systems: A personal health record can include a feature that reminds a user to take her medicine at noon, or schedule an appointment for next week, or take insulin when monitored blood glucose reaches a certain level. Alarm systems: Closely related to reminder systems, a personal health record can send a signal, make a phone call, send an email or, well, sound an alarm .If any tracked data falls outside an accepted range. Critical care units in hospitals have alarms sounding all the time. 39 | P a g e
    • “Consider this” systems: More complex, but still pretty simple, are computer applications that can offer a number of suggestions in response to information received or to queries. A system might communicate that a patient should consider altering his diet, check whether a medication dose has been missed or see a doctor or nurse. Human Decisions, Computer Output True decision support systems, or clinical expert systems, can do much more than any of these rudimentary applications. They rely on large databases and employ complex inference engines in attempts to render diagnoses or commend various therapies. The literature on ethical issues related to use of clinical decision support systems is well developed and makes clear that an intelligent machine should be regarded as a tool and not a replacement for competent human judgment. Such a stance is cautious and sound. It also elicits a number of questions about appropriate use: What if a clinical expert system is shown to be better than a human – are we then obligated to use it? Answer – maybe, perhaps probably. What if a system is generally pretty good – may a doctor or nurse use one as a decision aid? Answer – probably. May a clinician accept without question the output of a really good system? Answer – probably not; maybe never. And, for our purposes, perhaps the most interesting and difficult question of all: Ought patients use clinical decision support systems – embedded in applications as part of a personal health record – and rely on their advice or recommendations? With what constraints? Relatedly, Who is responsible if something goes wrong? Behind all these questions is a lattice of tradition and presumption about what constitutes medical practice and advice. Humans and only humans practice medicine and nursing, meaning that only trained and licensed health professionals may diagnose and treat human maladies. Morality requires adequate training, continuing education and the judicious exercise of clinical decision making in the practice of nursing or medicine. Morality also requires that clinicians use the tools necessary to do a good job. It follows from this that there is a duty to reserve for humans those tasks for which they are trained and licensed, and to use tools appropriate to those tasks. Unlike a hammer or a scalpel, though, computers extend not our hands, but our brains. Making a diagnosis and giving medical or nursing advice is as simple as a mother’s warning 40 | P a g e
    • and as complex as an internist’s suite of differential diagnoses. So, when does computer output constitute the practice of medicine? Personal Health Tools As patients acquire a greater role in their own care, including the assumption of increased responsibility for controlling health information, personal health records and other patient- driven resources need to be assessed in terms that help make clear when a use is appropriate and when it is not. There is no bright line between (ethically) acceptable use and unacceptable use. There are, however, a number of rough-and-ready rules, or at least guidelines, that can help in this process. We can plot these on three axes: education, scope and consequences. Education: Adequate education or training in the proper use of a personal health record with decision support functions is essential. Patients and providers must be familiar with a device’s intended uses and known limitations. They must understand and appreciate these functions and limitations. They need to be encouraged to question each other and appropriate authorities if there is something they do not understand. Any sense that a device is not functioning properly or that its output is counterintuitive or faulty should trigger a query. Scope: We earlier itemized a number of simple “decision support” systems, rendered here in quote marks because the decisions are, well, pretty simple. The question whether more complex decision support ought to be included as part of a PHR should be answered as a function on the breadth of the kinds of decisions that might be made. “Take your medicine at noon” is simple; “change the dose” is not. As the scope of decision support embedded in PHRs grows broader, additional education is required. It might even be there are kinds of decisions or recommendations no automatic system should give. Consequences: One of the measures of any technology’s suitability is the risk of various bad outcomes. The riskier the technology, the more we should either reduce that risk (by increasing education or limiting scope) or eliminate it – by forbidding its use. One of the ways to reduce the risk of any decision support system is not to take it seriously. In the hands of a human expert – a physician or nurse – we can counsel (or require) the clinician to default to professional judgment. In a PHR, the risks of certain decisions might be so great as to require 41 | P a g e
    • they not be given. This is, of course, going to depend on the consequences of not having the advice or decision in the first place What this amounts to is a demand for more research and experience in the development and use of decision support features for personal health records. Indeed, while the literature on ethics and decision support systems is extensive, it is so far silent on the role of PHRs. Whether any consequence can be mitigated by increased education or throttled scope is an empirical question, and we have ample reason to believe the best way to reduce uncertainty in the use of health .tools is by learning more about how they work, how they are used and how to ensure they do more good than harm. 42 | P a g e
    • 11.FUNCTION OF PHR 11.1 IDENTIFICATION FUNCTION ID Function Description Related Related function data in HL7 category in EHR CCR 1. Manage Capture and maintain demographic that is S.1.4.1 Patient demographic reportable and where appropriate, D.C.1.1.2 Identifying Information trackable over time. Includes but not Information limited to date of birth, gender, ethnicity. 2. Manage contact Capture contact information including DC.1.1.2 Patient Information addresses, phone numbers, email address Identifying of the unique user. Capture contact Information including addresses, phone numbers, email address of the unique information user's emergency contact(s). Capture contact information including addresses, phone numbers, email address of the unique user's next of kin. 3. Medical insurance Provide the group number and other S.3.3.2 Patient relevant information to confirm eligibility S.3.3.3 Insurance Information-of medical care coverage, as /Financial well as the carrier's contact number, information preauthorization requirements 4. Medical care Store contact information for the PHR S.1.3 provider(s) user's health care providers 43 | P a g e
    • 11.2 Medical history function 5. Health summary Provide a one-screen, Printable, bulleted D.C.1.1.5 summary list of all of the information essential function areas that is sortable both chronologically and by category. A key feature of an personal health record is its ability to present, summarize, filter, and facilitate searching through the large amount of data. Much of this data or date range specific and should be presented chronologically. The summary is designed to make it easier for a patients and care provider to get a snap shots of clinically relevant information about the person. 6. Family history Capture the presence and/or absence of a S.3.5.1 Patient history of major diseases among the PHR Health user's close blood relatives. status : Family history 7. Manage problem Store a problem list that includes chronic DC.1.1.3. Patient list. Status: conditions, diagnoses, or symptoms 1 Health (diseases and and functional status, both past and Status: conditions, present. Provide ability to manage Diagnosis/ symptoms) problem lists over time, allowing Problems/ documentation of history information and Conditions tracking the changing character of the problem and its priority. Provide fields to store all pertinent dates, including date of onset, diagnosis, changes and resolution. 8. Manage Store medication lists (including DC.1.1.3. Patient medication prescription and over-the-counter , 2 Health list vitamins and supplements Medications Status: and alternative therapies). Store all Current pertinent dates, including medication start, medications modification, and end dates as well as the 44 | P a g e
    • dose, form, frequency, do-not- substitute status and prescribing provider. Medication lists are not limited to medication orders recorded by providers, but may include patient-reported therapies (preferably from a menu of medications that are codified according to standardized vocabularies. 9. Manage allergy Store known allergens and substances that DC.1.1.3. Patient and have produced adverse reactions in a 3 Health reactions lists list that is managed over time. All pertinent Status: dates, including patient-reported events, Adverse are stored and the description of the Reactions/A allergy and reaction is modifiable over lerts time. The entire allergy history, including reaction, for any allergen is viewable. 10. Manage lab and Store results of the most common clinical DC.1.4.5 Patient test results screening, diagnostic and home- Health monitoring tests in a way that can be easily Status: viewed over time. Flow sheets, graphs, or Laboratory other tools allow patients and care Results providers to view or uncover trends in test data over time. 11. Manage Store data on immunizations in a way that DC.1.14 Patient immunizations list can be easily viewed over time. Health Status: Immunizati ons 12 Manage clinical Store data on clinical visits and outpatient S.3.1 Care encounter list and inpatient procedures, including date, Documenta facility, attending physician, diagnoses and tion: procedures. When feasible, store physician notes and hospital discharge Encounters summaries. 45 | P a g e
    • 11.3 Other Relevant Information Functions ID Function Description Related Related function data in HL7 category in EHR CCR 13 Manage list of Enable the user to add information in free DC.1.1.7. other Therapeutic text about other modalities of treatment 2 modalities(counse used, both past and present. ling, occupational therapy ,alternative, etc) 14 Patient diaries Enable the patient to self-report DC.1.1.7. symptoms or concerns (e.g., pain, anxiety, 2 Sleeplessness ,seizures) in a chronologically sort-able diary. 15 Spiritual affiliation Enable the user to add information in free DC.2.1.4 / considerations about religious/spiritual beliefs that he or she wants care providers to know. 16 Case management Store information about case management DC.1.2.2 programs in which the patient is enrolled. 17 Other concerns Enable the user to add information in free DC.1.1.7. text about any other information he or she 2 wants clinicians or allied health professionals to know. 46 | P a g e
    • 11.4 Systems functions ID Function Description Related Related function data in HL7 category EHR in CCR 1 Manage patient- Enable patients and consumers to self- DC.1.1.7. sourced health report health data. Display health data – 2 data both patient sourced and professionally sourced – in the user interface with consumer-friendly terminology . 2 Map patient data The data entered by patients should map DC.1.1 to standardized to controlled, standardized code sets or codes nomenclature. 3 Use consumer- Display health data – both patient sourced friendly and professionally sourced – in the user terminology interface with consumer-friendly Terminology. 4 Display Enable the consumer a view of DC1.1.7 professionally professionally sourced data (e.g., sourced health information from health care providers, data pharmacies and pharmacy benefit managers, medical or home monitoring devices and insurance companies). 5 Utilize Store health information according to standardized consistent terminologies, data correctness DC.1.1 code sets and and interoperability by complying with I.4.1 nomenclature standards for health care transactions ,vocabularies and code sets. Examples: that PHR applications need to support are a consistent set of terminologies such as: LOINC, SNOMED, ICD-10, RxNorm, and messaging standards such as HL7 and 47 | P a g e
    • NCPDP. Enable version control to ensure maintenance of utilized standards. Version control allows for multiple sets/versions of the same terminology to exist and be distinctly recognized over time. Terminology versioning supports retrospective analysis and research, as well as interoperability with systems that comply with different releases of the s standard. 6 Data interchange Support the ability to send data from PHR I.5.1 standards to external institutionally owned electronic medical record systems, in standard HL-7 data interchange formats, and operate seamlessly with complementary systems (EHRs and entities authorized to interact with EHRs and PHRs) by adherence to key interoperability standards. Interoperable PHR applications require infrastructure components that adhere to standards for connectivity, information structures, and semantics ("interoperability standards"). Ensure common-field compatibility with emerging standards for minimum datasets for clinical information transfer (e.g., Continuity of Care Record). 7 Secure data Exchange of PHR information requires I.1.5 exchange appropriate security and privacy I.1.6 considerations, including data obfuscation and both destination and source authentication when necessary. For example, it might be necessary to encrypt data sent to remote destinations. This function requires that there is an overall coordination regarding what information is exchanged and how the exchange will occur, between PHR and entities with which it engages in electronic data 48 | P a g e
    • interchange. The policies applied at different locations must be consistent or compatible with each other in order to ensure that the information is protected when it crosses entity boundaries within the PHR or external to the PHR. Route electronically-exchanged PHR data only to/from known, registered, and authenticated destinations/sources (according to applicable healthcare- specific rules and relevant standards). 8 Audit trail Ensure that all data entries in the PHR are transparently time-, date- and source- I.2.2 stamped. Provide audit trail capabilities for I.1.4 resource access and usage indicating the author, the modification (where pertinent), and the date/time at which a record was created, modified, viewed, extracted, or deleted. Audit trails extend to information exchange. Audit functionality includes the ability to generate audit reports and to interactively view change history of PHR data. 9 Append notes Enable users of the PHR to append comments to data entries. For example, the PHR user would not be able to alter the data from a professional source, but should be able to append his or her own comments to it. The PHR should be transparent to the patient as to whether or not the PHR offers any notification capability to the physician of any patient- appended comments. In the absence of any such notification mechanism, the PHR should make clear that any such appended comments will not be seen by any physicians through the PHR. If there is such a notification system, then 49 | P a g e
    • the patient must designate which clinician should see the comment. All transactions must be tracked in an audit trail, including a —status“ as to whether the designated physician has viewed the comment, and included in the patient‘s record in the clinician-controlled EHR. 10 Unique Store key identifying information and link D.C.1.1.1 identification it to a unique user record. The user I.1.1 and identity is authenticated in each session of authentication of the PHR. Both users and application are Users subject to authentication. The PHR must provide mechanisms for users and applications to be authenticated. Will users have to be authenticated when they attempt to use the application, the applications must authenticate themselves before accessing or contributing information to PHR. 11 Terms and Capture user opt-in agreement to the DC.1.5.1 conditions terms and conditions of the PHR service I.1.2 opt-in and explicit authorizations to other people authorizations or entities to view and/or contribute data to the PHR. 12 Secure access To enforce security, adhere to the rules I.1.3 established to control access and protect the privacy of PHR information. Security measures assist in preventing unauthorized use of data and protect against loss, tampering and destruction. Verify and enforce access control to PHR information and functions for end-users, applications, sites, etc., to prevent unauthorized use of a resource, including the prevention or use of a resource in an 50 | P a g e
    • unauthorized manner. 13 Privacy policy and Capture user opt-in consent to a fully I .1.8 enforcement transparent privacy policy. Privacy rule enforcement decreases unauthorized access and promotes the level of HER confidentiality. Although not all PHR providers are believed to be covered entities under HIPAA, all PHRs products should be built to conform with HIPAA. Capture user consent to any use of data, including aggregate data. 14 Caregiver proxy Provide the ability for a user to set up a access separate login for with "read" and/or "write" access authorization. 15 Reliability Ensure that the system is available 24/7 with 99.9 percent reliability and response time adequate to integrate into clinical workflows. 16 Durability of data Retain and ensure availability all health record information according to I.2.1 organizational standards ,legal requirements and in accordance with the terms and conditions. 17 Printer-friendly Each page of the PHR will have a printer- format friendly format. 51 | P a g e
    • 11.5 Planning Functions ID Function Description Related Related function data in HL7 category in EHR CCR 18 Manage advance Capture the user's advanced directive as DC.1.5.2 Advance directive form well as the date and circumstances under Directives which the directives are provided, and the location of any paper records of advanced directives as appropriate. 19 Goals, next steps Enable the user or anyone the user has DC.1.1.7. Care Plan or disease authorized to add in free text information 2 Recommen management about personal health goals, next steps or dation Plan. a specific disease management plan. 11.6 Optional services ID Function Description Related Related data data Functions category in HL7 in CCR EHR 1 Patient education Provide reliable patient education DC.2.2.1. self-care content information to answer a health question, 6 consensus follow up from a clinical visit, identify DC.2.7.2 guidelines treatment options, or other health S.3.7.2 information needs. The information may be linked directly from entries in the and health record, or may be accessed through other means such as an index or key word searching. Receive, validate and routinely integrate updates of patient 52 | P a g e
    • education material from trusted sources to ensure timeliness and accuracy. 2 Clinician-directed Enable those authorized by the PHR user DC.3.2.4 links to identify and create electronic links to S.3.7.2 to patient any educational or support resources for educations self- patients, families, and caregivers that are care content and most pertinent for a given health concern, consensus condition, or diagnosis which are guidelines appropriate for the patient. The provider and or patient is presented with a library of educational materials and where appropriate, given the opportunity to document patient/caregiver comprehension. The materials can be printed or electronically communicated to the patient. 3 Secure patient - Enable encrypted, password-protected DC.3.2.3 provider electronic communication between messaging patients and clinicians. The message exchanges should be archived in the PHR and easily integrated into the patient's EHR by the clinician. 4 Doctor's notes Clinical documents and notes may be DC.1.1.6 and created in a narrative form and made other narrative available through the patient's PHR. The information from documents may also be structured clinicians documents that result in the capture of coded data. 5 Standardized Provide a standardized primary care office primary visit intake questionnaire that patients fill primary care visit out through their PHR accounts and send questionnaires electronically into the doctor's office before their. Another care visit intake example would be to allow patients to view and add notes, symptoms, reasons for visit, etc., to a Continuity of Care 53 | P a g e
    • Record as part of a transfer process from one clinician to another. 6 Standardized Provide a standardized intake specialists visit questionnaire for high-volume specialties intake that require a predictable set of questionnaires information from all patients. (Examples could be glucose readings for people with diabetes or blood pressure readings for people with hypertension. Request that patients fill out the questionnaire through their PHR accounts and send electronically into the doctor's office before a specialist visit. 7 Appointment Enable the patient to request an S.1.6 scheduling and appointment with current health care reminders providers from a menu of possible times and dates. Create a secure mechanism to electronically notify the patient about the status of the request. 8 Guidelines-based Identify appropriate screening DC.2.5.1 reminders tests/exams, and other preventive services DC.2.5.2 in support of routine preventive S.3.7.3 and wellness patient care standards. Upon each session, the patient is presented with due or overdue activities based on protocols for preventive care and wellness. Examples include but are not limited to, routine immunizations (adult and well baby care), age and sex appropriate screening exams (such as PAP smears). External means of delivering notification are optimal, such as sending an email to patients notifying them that they have a secure message waiting in the PHR, which they can access by logging in. Receive and validate formatted inbound communications to facilitate updating of 54 | P a g e
    • patient reminder guidelines from external sources such as Immunization Registries. 9 Individually Provide the ability for the patient's DC.2.5.2 programmable clinician to individually configure and reminders generate automated notifications and reminders to patients regarding activities that are due or overdue, and capture these communications in a PHR archive as well as the clinician's EHR. Examples include but are not limited to time sensitive patient and provider notification of: follow-up appointments, laboratory tests, immunizations or examinations. The notifications can be customized in terms of timing, repetitions and administration reports. E.g. a Pap test reminder might be sent to the patient a 2 months prior to the test being due, repeated at 3 month intervals, and then reported to the administrator or clinician when 9 months overdue. Note: This function is not mutually exclusive with #45. The guidelines-based reminders could be set as defaults, with individually programmability an option that lets clinicians override the default settings. 10. Adherence Enable the patient's physician, with DC.2.2.1. messaging for patient's consent, to enroll in an 6 specific automated, secure messaging program medications based on evidence-based guidelines for specific medication adherence. 11. Adherence Enable the patient's physician, with DC.2.2.1. messaging patient's consent, to enroll in an 6 for specific automated, secure messaging program conditions based on evidence-based guidelines for 55 | P a g e
    • managing a specific chronic condition, such as diabetes. 12. Structured care Provide for structured care plans, DC.1.2.1- plans guidelines, and protocols that may be site- 2 specific or based on industry-wide standards. They may need to be managed across one or more providers. Tracking of implementation or approval dates, modifications and relevancy to specific domains or context is provided. Guidelines or protocols may contain goals or targets for the patient, specific guidance to the providers, suggested orders, and nursing interventions, among other items. 13. Patient-specific When a patient is scheduled for a test, DC.1.2.3 instructions procedure, or discharge, specific instructions about diet, clothing, transportation assistance, convalescence, follow-up with physician, etc. may be generated and recorded, including the timing relative to the scheduled event. 14 Longitudinal Enable the patient to store baseline DC.1.1.5 tracking comparison sets and subsequent results in a way that can be tracked or graphed over time. Example: Enable a patient to enter/graphing tools data that graphs multiple data points over time, such as weight, exercise and meals. 15. Monitoring device Provide mechanisms to allow consumers DC.3.2.5 data to connect various computer-based S.3.1.4 physiologic monitoring devices to their home computer via standard hardware interfaces (e.g., fire well, USB, rs232, etc.) and download monitoring data. This data should then be able to be displayed in table format, in graphical formats, and 56 | P a g e
    • sent to institutionally owned systems if appropriate. Support communication and presentation of data captured from remote monitoring devices, such as glucometers. Support remote health care services such as telehealth and remote device monitoring by integrating records and data collected by these means into the patient's PHR for care management and public health reporting purposes. 16. Drug interactions Provide consumers with ability to check a DC.2.3.1. checking specific drug against his or her current 1 medication list to check for drug-drug, drug-allergy interactions 17. Formulary and Provide ability for the patient to look up a DC.1.3.1 generic specific prescription medication to availability lookup determine under what tier it is covered in the patient's pharmacy benefit. For all current medications in the patient's record, provide indications of the availability of therapeutic equivalent generic medications, if any. 18 Rx refill requests Enable the patient to request a DC.3.2.2 prescription refill through secure messaging that gets routed to appropriate desks. 19 Electronic EOB Provide the financial data from medical and prescription services typically delivered in Explanation of Benefits, such as information about co-pays, co- insurance, amounts covered by insurance benefit, payment status and dispute information. 20 Account tracking Provide current balances for health-related tools, accounts or thresholds including but not 57 | P a g e
    • such as limited to deductibles, out-of-pocket or co- deductibles, insurance limits, flexible spending OOP max, flex accounts, health savings accounts. spending accounts., etc 21 Cost transparency Provide regional fee information for tools common medical services and medications based on reliable aggregate data, usual and customary fee scales. 22 Cost modeling Provide the ability for consumers to model S.3.2.3 tools their anticipated care utilization needs and estimate their out-of-pocket costs and potential savings from tax-sheltered accounts. 23 Other data Provide mechanisms for incorporating DC.1.1.7. storage external clinical documentation, such as 1 capabilities image documents, and other clinically relevant data are available. Data incorporated through these mechanisms is presented alongside locally captured documentation and notes wherever appropriate. 24 Scanned paper Provide the ability to upload and store DC.1.1.7. documents. securely in the PHR scanned paper 1 documents 25 Scanned images Provide the ability to upload and store DC.1.1.7. Patient securely in the PHR scanned medical 1 Health images. Status: Procedur es/ Imaging 26 Clinical trial Support the identification and notification DC.2.2.1. 58 | P a g e
    • recruitment (via secure messaging with appropriate 5 opt-ins) of people who match the recruitment criteria of clinical trials. 27 Aggregate data Support clinical health state monitoring of DC.2.6.1 analysis aggregate patient data for use in I.2.4 identifying health risks from the environment and/or population. 12.Personal health record policy areas 12.1. Key Obstacles There are essentially two types of sources for personal health data in the PHR: patient- sourced and professionally sourced. From the perspective of a person who receives care from multiple unconnected providers, the table below summarizes key obstacles in assembling both types of data into a PHR. Type of data Key Obstacles •How to earn the patient‘s trust in a third- Patient-sourced: party PHR system? Information entered directly by the person •How to motivate the patient to enter who owns the PHR or that person‘s information accurately and consistently? information to clinicians who are not caregiver or proxy. •How to transfer patient-sourced connected to the PHR system? •How to get clinicians to acceptun structured patient-sourced information due to concerns over its time burden, liability, accuracy, etc.? Professionally sourced: Information that comes from professional • How to authenticate the patient‘s identity healthcare entities such as: and track the patient‘s authorizations across 59 | P a g e
    • • Individual clinicians and small practices multiple data custodians? • Larger group practices •How to create custom interfaces to • Integrated delivery networks (IDNs) exchange data with multiple custodians? • Hospitals •How to integrate information into a PHR • Insurers when multiple data sources store and? • PBMs or drug clearinghouses •How to forge data-sharing agreements codify it differently with multiple custodians? • Retail pharmacies • Labs and lab clearinghouses • Health data warehouses Left unaddressed, any one of these obstacles is sufficient to derail significant scalability of connecting patients electronically to their clinicians and to the other custodians of their health data. 12.2. Content Content“ is so broad a term that it could constitute everything in a PHR: branding, navigation and user interface, functions and features, icons and images, text and links, and much more. Solid execution of each of these is important in any software or Web site. In this section, however, we focus on the information in a PHR. The reason for this narrow scope is simple: The value of the PHR is ultimately proportionate to the value of the information that it holds. The first stakeholder in determining the value of the information in a that person person‘s PHR is, of course. Ultimately, however, other players in the healthcare system will need to place a value on information in the PHR in order to sustain its long-run viability. Purpose of this first section is to recommend policies that will accelerate the ability to collect valuable information in the PHR. In later sections we discuss the implications and policies around the sharing of this information The case for data field commonality We agree that the PHR must ultimately transmit and accept structured data in order to become a commonly accepted vehicle for information exchange between individuals and clinicians. PHRs are unlikely to be embraced by either health professionals or the public if they transmit and display an overload of unstructured data. 60 | P a g e
    • It is recommend that the establishment of a common data set as the basis of PHR communication with other information sources across the healthcare system. An initial goal should be to establish a common data set to enable PHRs to exchange data with EHRs – and with other PHRs – on a bi-directional and vendor-neutral basis for the core health information repository functions of the PHR, such as the patient‘s identifying information (e.g., name, address, race/ethnicity, preferred primary language, religious affiliation), insurance information (e.g., health plan group ID number), health status (e.g., conditions, medications, allergies) and other clinically relevant information (e.g., care plans). (See Functions Developing a common structure of information depends on three steps: 1. Establishing a set of common data fields. (In other words, what will PHRs and EHRs talk about?) 2. Establishing a secure protocol for electronic information exchange. (How will the PHR and EHR talk?) 3. Establishing common clinical vocabularies. (What —“language” will the PHR and EHR use?) 12.3: Authorization The term —authorization“ in this section covers policies that determine who gets to do what in the PHR. Specifically, who has permission to view, contribute to, or alter which pieces of data, and when? Authorization issues are straightforward when the PHR is maintained by one person and never seen by anyone else. If, however, the PHR is used for information-sharing, particularly between patients and theirhealthcare professionals, then policies for authorization become more complex. Because of the variance of PHR models, there are no —one- size-fits-all“ answers. Authorization begins with consent A key characteristic of the PHR is that the patient or consumer controls the data within it. Although PHR models may offer varying degrees of consumer control over data-sharing functions, we believe that all PHRs should begin with a fundamental principle of control: 61 | P a g e
    • PHRs a revoluntary. That is, the relationship between a PHR supplier and an individual consumer should be based on the consumer‘s discretion to enter into it, and to continue it. Compared to other online relationships between consumers and entities, the stakes are much higher in the relationship between the PHR supplier and the consumer. In the financial industry, for example, mistakes can be corrected in form of a re appropriation of money. In the enterprise of managing a person‘s health data, however, there may be no acceptable way to compensate for the mishandling or unauthorized use of the information. It is therefore critical that this voluntary relationship be shaped by the value of transparency. Core recommendation is that PHR suppliers adopt policies of transparency and full disclosure for privacy, security, data exchange, terms and conditions of service. Further, the business model and data-mining and data-portability policies must be clearly disclosed hand-in-hand with marketing materials describing services The ASTM International specification E 2211-02 covers important points of transparency and disclosure in the relationship between the consumer and a PHR supplier Beyond executing a legal agreement, the process by which the consumer agrees to terms and conditions and data policies is a critical step to set appropriate expectations in a relationship of trust. Although necessary, the legal text to which the consumer agrees is only one means of setting appropriate expectations – and generally not the most accessible or effective means of doing so. It‘s well-established that people don‘t read legal agreements, even if they know they should. PHR suppliers can help by: • Putting their agreements and policies in as plain a language as possible. • Supplementing the agreements with bulleted summary statements. For example: “This service WILL...” This service will NOT...” “You WILL be able to ...” “You will NOT be able to ...” 62 | P a g e
    • “You AGREE to ...” “We AGREE to ...” “We do NOT AGREE to ... ,” • Testing their marketing and disclosure materials with the target audience in realistic settings to make sure the materials communicate accurately and effectively. • When feasible, training nurses and other medical professionals to explain the basic policies to patients. (This recommendation is applicable to institutional gateway model PHRs and may not apply to current aggregator models.) Levels of authorization The above section describes control of what goes into the PHR. Now we switch to the individual‘s controls on who has access to his information. For example, —Patient needed to share information with multiple clinicians to manage his diabetes. The default policy of a PHR is that the consumer controls the access: No one may access the information – either personally identifiable information or de-identified aggregate information – without the consumer‘s authorization. There are three basic levels of permission possible in a PHR • Read-only: Authorized person may not add or alter any information. • Read-write: Authorized person may view existing information and add new information. • Read-write-edit: Authorized person may view and edit existing information, and add new information. If his PHR supports multiple levels of permissions, then patient should be able to specify the level for anyone to whom he authorizes access, and the amount of time that the access is granted. The simplest way to do this is for Paul to provide his own user name and password to his caregiver. However, this method has limitations. If multiple people use the same username and password, then audit trails will not be able to distinguish between their separate actions. It‘s also a security risk (for example, if the caregiver writes down the 63 | P a g e
    • password on a slip of paper and leaves it on a shared desk space). It would be better if patient can authorize a caregiver by setting up a guest username and password for time- defined access tied to specific permission levels. Providing a guest user name and password may be appropriate for granting access to caregivers or perhaps case managers. But it is likely not the most practical means when Patient wants to share information routinely with his medical professionals. Medical professionals have an obligation to keep their own records. They generally don‘t have time to go hunting around in each patient‘s PHR, and many are disinclined to do so out of concern for medical malpractice lawsuit exposure. It is recommend that PHRs evolve toward capabilities to generate time- and date-stamped —reports,“ rather than open access through guest passwords, for the sharing of information between patients and clinicians. This will enable both parties to have an auditable record of the information transactions between them. Clinicians can take each PHR-generated report and add it to the patient chart. Ideally, this is a person-to-person electronic transaction of structured information through a secure socket layer. If, however, the clinician keeps a paper chart, then each PHR report can be printed and placed in the patient file. sample issue: Patient‘s ability to modify, withhold or correct professionally sourced data.This issue may apply when a patient accepts professionally sourced data into a PHR and then shares it with a different medical professional. What ability should the patient have to alter, append notes to, and withhold professionally sourced data before it‘s transferred to a new medical professional? For example, Patient initially choose to withhold information about her post-partum depression from OB-GYN-2 Complexity of this issue is that on one hand, the exchange of information such as a past depressive episodes poses privacy concerns for patient. On the other hand, getting that information into the hands of the new doctor could lead to better – and conceivably life- saving – treatment by putting vital emotional health issues front and center. Another dichotomy: A significant subset of patients might not trust an application that doesn‘t give them complete control over the information, but clinicians might not trust an application that enables patients to change professionally sourced information. 64 | P a g e
    • It is widely recognized that some patients do withhold information about their past, usually by simply not mentioning facts to their current medical professionals. In some cases, such withheld information may be irrelevant to their current care (e.g., why does a podiatrist need to know about a long-past abortion?) In other cases, it's vitally relevant (e.g., post-partum depression, or past adverse reactions to medications). Patients aren‘t always in a good position to know which portions of their medical history are relevant to their current care. Overall, however, the patient‘s wish to withhold information from certain clinicians is largely a social issue that cannot be resolved by building a perfect PHR. In an effort to find some practical middle ground, we propose the following: A. Editing professionally sourced information: When technically feasible, it‘s reasonable and appropriate for a PHR system to prevent patients from altering professionally sourced information. (E.g., Samantha would not be able to change the depression diagnosis as entered by OB-GYN-1 to something else, such as —stress.“) Our reasoning is there needs to be a baseline of acceptance among medical professionals in the PHR concept. If the patient can change a professionally sourced data entry, it undermines the fundamental trustworthiness of the applications. B. With holding professionally sourced information: It‘s reasonable to allow the patient an ability to withhold specific data fields when generating a report for healthcare providers.(E.g patient clicks on a checkbox next to the data entry of her depression diagnosis to exclude it from a report she generates for OB-GYN-2.) Our reasoning is the PHR cannot change the fact that some patients will want to withhold information, nor will it change the fact that clinicians should assume that they are not getting the complete medical record from any source, including the patient. This is no different from the current system, in which physicians ask patients for information directly and through questionnaires and rely on the patient‘s discretion in disclosing information about them selves .The PHR should not replace the patient-clinician interaction in which the clinician tries to fill in the blanks of missing information. We believe it‘s better to encourage patients to maintain the most complete record possible by providing them control over the release of their data in as granular a way as practical. We realize that in some cases, it may be very difficult to provide such granular control that a patient could easily withhold the full trail of a complicated medical situation. 65 | P a g e
    • C.Appending notes to professionally sourced information: It‘s desirable, when feasible, to enable patients to append their own comments to entries of professionally sourced data. (E.g., patient could not alter the data from a professional source, but could be able to append her own comments to it.) The PHR should be transparent to the patient as to whether it offers any notification capability to the physician of any patient-appended comments. In the absence of any such notification mechanism, the PHR should make clear that any such appended comments will not be seen by any physicians through the PHR, and that patients should not rely on their own appended notes to correct erroneous data at its source, which is where it needs to be corrected. If there is such a notification system, then the patient should be forced to designate which clinicians should see the comment, and actively send the comment to those specific clinicians. All transactions should be tracked in an audit trail, including a —status“ as to whether the designated physicians have viewed the comment, and included in the patient‘s record in the clinician-controlled EHR. D.Correcting professionally sourced data: PHRs that should provide instructions on how the patient can correct or dispute professionally sourced information. This policy does not suggest that the PHR must necessarily be the vehicle for such disputes. However, it is important that patients have an idea of how to contact the source of information they believe to be inaccurate. Sample issue: Release of lab results : In some models, particularly institutional gateway model PHRs, lab results are delivered online. In a system that can release lab results directly into a patient‘s PHR, should physicians be allowed to control the timing or manner of patient access to abnormal, complex, or worrisome findings? Some argue that the physician should have the chance to look at lab results in advance, prior to talking with and (presumably) helping the patient to interpret the results. Another point of view is that timely release of lab information to patients provides better service and even safety, for example, if a patient needs to take results to another doctor before the initial ordering physician calls with the results. In the status quo, delays in lab findings are a frustration to many patients. Some large integrated delivery networks with PHRs have determined that it‘s most efficient to release in real time lab results that are within normal ranges as established by the lab (with exceptions such as CT scans 66 | P a g e
    • and all pathology reports, which are embargoed to give clinicians time to contact the patient.) For lab and other test results that are out of normal ranges as set by the lab, system wide embargoes may be an appropriate way to deal with the issue. The embargo is designed to give the ordering physician time to review the results and then contact the patient. State and local laws and restrictions need to be examined, particularly with regard to HIV, STD's and mental health conditions. It is believe that best-practices in the online release of lab results include the setting of a default policy for timely release of findings within normal ranges whenever practical. At the same time, we believe it is desirable to enable clinicians the ability to configure the release rules on a case-by-case basis, should they choose to do so. Some systems today allow the physician to set lab result release rules on a patient-by-patient basis. This may be the ideal, although it may not be practical in many cases, and in the event of such physician configurability, there needs to be a clear default policy. It is very important to set the patient's expectations in accordance with the policy. If the physician overrides the default policy, then it's appropriate to communicate this with the patient. E. Sample Authorization to Use or Disclose Health Information Patient Name:___________________________________________________________ Date of Birth:____________________________________________________________ 1. I authorize the disclosure of the above named individual's health information as described below. 2. The following individual(s) or organization(s) are authorized to make the disclosure: 3. The type of information to be disclosed is as follows (check the appropriate boxes and include other information where indicated) problem list medication list list of allergies immunization records most recent history 67 | P a g e
    • most recent discharge summary lab results (please describe the dates or types of lab tests you would like disclosed): x-ray and imaging reports (please describe the dates or types of x-rays or images you would like disclosed): consultation reports from (please supply doctors' names): entire record other (please describe): Information related to treatment for any sexually transmitted disease, including HIV or AIDs * Information related to treatment for mental health-related illnesses* Information related to treatment for substance abuse* *Must be checked for that specific information to be released. 4. The information identified above may be used by or disclosed to the following individuals or organization(s): Name: Address: 5. This information for which I'm authorizing disclosure will be used for the following purpose: my personal records sharing with other health care providers as needed other (please describe): 6. I understand that I have a right to revoke this authorization at any time. I understand 68 | P a g e
    • that if I revoke this authorization, I must do so in writing and present my written revocation to the health information management department. I understand that the revocation will not apply to information that has already been released in response to this authorization. I understand that the revocation will not apply to my insurance company when the law provides my insurer with the right to contest a claim under my policy. 7. This authorization will expire in (insert date or event): If I fail to specify an expiration date or event, this authorization will expire six months from the date on which it was signed. 8. I understand that once the above information is disclosed, it may be re disclosed by the recipient and the information may not be protected by federal privacy laws or regulations. 9. I understand authorizing the use or disclosure of the information identified above is voluntary. I need not sign this form to ensure healthcare treatment. ____________________________________________ Signature of patient or legal representative _____________________ Date If signed by legal representative, relationship to patient ______________________________________ ____________________________________________ Signature of witness ____________________ Date Distribution of copies: Original to provider; copy to patient; copy to accompany use or 69 | P a g e
    • disclosure 12.4Privacy laws and regulations A. Data Protection Law in India : The Information Technology Amendment Act, 2008 has set the ball rolling in addressing the lacuna of data protection laws in the country. The provisions are however not adequate to meet the needs of the corporate India. The Article tries to analyze the protection accorded to data and information residing in the computer systems in the country. Data is defined as unprocessed information . Information, on the other hand, is defined as the data that have been organized and communicated in a coherent and meaningful manner. Data is converted into information and information is converted into knowledge. In the cyber world all such information is stored in the computers. The information may include financial details, health information, business proposals, intellectual property and sensitive data. Till recently there was no specific provision to address the issue of Data Protection. However, the IT Amendment Act 2008 has set the ball rolling in addressing this issue. The IT Act, 2000 and the 2008 Amendment The Government had in the year 2006 introduced a separate Bill called the Personal Protection Act to specifically address the issue of data protection. However the Act has not seen the light of the day. But now, the issue of data protection has been addressed in IT Amendment Act, 2008 through Sections 43A and 72A. Section 43A reads as follows: Compensation for failure to protect data Where a body corporate, possessing, dealing or handling any sensitive personal data or information in a computer resource which it owns, controls or operates, is negligent in implementing and maintaining reasonable security practices and procedures and thereby 70 | P a g e
    • causes wrongful loss or wrongful gain to any person, such body corporate shall be liable to pay damages by way of compensation, to the person so affected. Explanation: For the purposes of this section (i) body corporate means any company and includes a firm, sole proprietorship or other association of individuals engaged in commercial or professional activities (ii) reasonable security practices and procedures means security practices and procedures designed to protect such information from unauthorized access, damage, use, modification, disclosure or impairment, as may be specified in an agreement between the parties or as may be specified in any law for the time being in force and in the absence of such agreement or any law, such reasonable security practices and procedures, as may be prescribed by the Central Government in consultation with such professional bodies or associations as it may deem fit. (iii) sensitive personal data or information means such personal information as may be prescribed by the Central Government in consultation with such professional bodies or associations as it may deem fit. Reasonable security practices and procedures The IT Act now requires corporate to maintain reasonable security practices, and procedures as to sensitive personal data or information, but does not define the phrase reasonable security practices, and procedures. As understood from the section Reasonable Security Practice and Procedures is to be determined in the following order: - As defined between the parties by mutual agreement or - As specified in any law for the time being in force or - To be specified by the Central Government in consultation with such professional bodies or associations as it may deem fit. However till date there is no law specifying security practice nor has the Central government defined the security practices to be implemented in order to securing vital data. 71 | P a g e
    • In the absence of such defined security practices and procedures, it is open for the parties to enter into agreements and lay down their own methods of protecting their sensitive information. Section 43A not only provides the freedom for doing so but also penalizes any breach of such contractual obligations. Thus till a frame work of security practices is defined, the companies can enter into their own contracts and lay down minimum standards for protecting data. For this purpose, depending upon the industry, compliance with business requirements such as ISO 27001, DPA, Basel II, HIPAA etc. may be enforced by means of agreements between the parties. And failure on the part of any party to maintain such contractual obligation can lead to legal consequences by virtue of this section. It is to be noted that there is no upper limit for compensation that can be claimed by the affected party in such circumstances. Breach of confidentiality and privacy The IT Act 2000, under Section 72 protects private information that is obtained by agencies by virtue of powers conferred under the Act and enforces a criminal liability with imprisonment for 2 years and fine of RS 1 lakh or both. This applied to the Certifying Authorities as well who obtained information from subscribers. Section 72A, which has been newly added addresses the issue of data vandalism occurring in breach of contractual agreements. Section 72A reads as follows: Punishment for Disclosure of information in breach of lawful contract Save as otherwise provided in this Act or any other law for the time being in force, (i) any person including an intermediary who; (ii) while providing services under the terms of lawful contract; (iii) has secured access to any material containing personal information about another person; (iv) with the intent to cause or knowing that he is likely to cause wrongful loss or wrongful gain; (v) discloses; 72 | P a g e
    • (vi) without the consent of the person concerned, or in breach of a lawful contract; (vii) such material to any other person; and (viii) shall be punished with imprisonment for a term which may extend to three years, or with a fine which may extend to five lakh rupees, or with both. Extraterritorial applicability of the Data Protection Laws The Data Protection Act of UK as well as HIPAA of US ensures that their data protection obligations reach beyond its shores whenever data is sent out for processing to other countries. However, in the Indian context the above mentioned provisions do not speak of the extraterritorial applicability of the law. Section 75 of the IT Act speaks about the extraterritorial applicability of the Act. According to this Section, the provisions of the IT Act shall apply to any offence or contravention committed by any person irrespective of his nationality, provided the act or conduct constituting the offence or contravention involves a computer, computer system or computer network in India. Section 75 is framed from the angle of addressing the issue of cyber crime. The section does not address the issue of data protection. The sections 43A and 72A which are now introduced to protect data also does not address the territorial applicability of these provisions. Therefore it can be safely concluded that when data is transferred outside the territories of India it gets no legal protection. Conclusion In the current scenario the data protection provisions do not extend beyond the territories of India. Within the territory of India, Sections 43A and 72A provides protection for the data. And even data outsourced to India gets protection under these sections. But when data is send outside the territories of India, one cannot seek protection under these sections. India has no jurisdiction in such cases and there is no obligation cast on the countries to which India sends sensitive personal information for processing to have an acceptable data protection mechanism. 73 | P a g e
    • 12.5. Managing expectations and liability To articulate a vision of patients and clinicians working together with the aid of connected PHRs and EHRs. In this vision, the PHR helps speed the shift in communication modes away from telephone and fax machines to computer-aided information sharing – improving speed, sharing timely and relevant information and assembling written communication in one place where the patient can access it. It envisions that these changes increasingly provide opportunities for clinicians to educate and empower patients to take control of their own health, ultimately resulting in healthier patients. It is recognize that fulfilling this vision will require more than the successful navigation through technical barriers, such as common data fields and code sets, authentication and privacy standards, data authorization and exchange protocols. And it will require more than a lowering of financial barriers to support necessary investment, maintenance and incentives. Clearly, to reap the benefits of electronic connectivity, there must be shifts in attitudes and expectations that both patients and clinicians traditionally bring to their relationship. There are of course many factors that shape attitudes and expectations across the massively complex healthcare system. In this chapter, we focus on only a few. Our purpose is to identify a manageable number of policy approaches that we believe can help frame the PHR discussion constructively . Policies to set appropriate expectations The PHR does not change the fundamental roles of the patient or clinician. It may, however, catalyze changes in their relationship. For example, PHRs that include electronic communications between patients and clinicians could expand clinician responsibilities between visits but might also lessen the burden of telephone tag, speed communication, and avoid errors related to missed communication (e.g., non-notification of important test results). If patients can input data from home, then the patient-doctor relationship could become less visit-based as the doctor is able to access and provide guidance on important self- monitoring information (e.g., glucometer readings) between visits. Additionally, some clinicians express concern that if a PHR enables patients' and clinicians' timely, shared, electronic access to lab results and other information, it‘s possible it will encourage a class of electronically super-empowered patients who 74 | P a g e
    • become more demanding in making sure the information in their record is —complete“ to their satisfaction and that they are getting the best care (or at least what they believe to be the best care). Each example raises questions about the expectations on both ends of the PHR-enabled information sharing. Will patients‘ electronic access cause disruption to the clinical workflow? If a patient sends a message, how soon is the clinician expected to reply? If a patient‘s home- monitoring data in a PHR shows a dangerous trend, is the doctor liable for failing to act on it? The ideal electronic information exchange has clear, accessible policies to answer such questions and set appropriate expectations for both patients and clinicians. Policies must be established locally. Among the factors to consider: the capabilities of the software being used, the needs and capacity of the people who use it, and, of course, the resources and objectives of the institution that pays for it. Policy references One starting reference is the —eRisk Guidelines“ developed in 2002 by the eRisk Working Group for Healthcare, a consortium of professional liability carriers, medical societies and state board representatives. Although the guidelines are specific to patient-clinician electronic messaging and online consultations, they offer practical advice on setting appropriate expectations and limiting liability in any type of electronic information sharing between patients and clinicians. 75 | P a g e
    • 12.6Summary of e Risk Guidelines e Risk Clinicians possibly decrease their liability if Clinicians possibly increase their liability if they: they: Obtain up-front patient consent to policies for Interact with patients online without ever appropriate uses and limitations of the establishing a previous doctor-patient technology, such as avoiding electronic means relationship. (Clinicians should not accept of communication for emergencies, setting money for online-only services in the absence appropriate expectations for response times of a prior, face-to-face encounter.) using extra consideration for highly sensitive medical topics. (Informed consent to the policies should be obtained from the patient for any remunerated services.) Publish the policies and make them part of Communicate online with a patient who is the legal documentation and medical record outside a state in which the clinician holds a when appropriate. license. Keep a record of online communication and Make a diagnosis or treat a new condition other information exchanges as part of the based solely on information obtained online. patient‘s chart (either electronic or paper). Understand that online consultations or Fail to identify exactly who conducted the services, particularly those that are fee-based, communication with the patient (e.g., doctor carry the same legal rules, ethical guidelines does not review advice that a subordinate and professional etiquette and obligations for sends to a patient in the doctor‘s name). patient care and follow-up as face-to-face, written and telephone consultations. Inform patients upfront about any fees and the fact that they might not be covered by insurance. Inform patients that online consultations are based only upon information made available by the patient during or before the online consultation, including referral to the 76 | P a g e
    • patient‘s chart when appropriate, and therefore may not be an adequate substitute for an office visit. Consider developing selection criteria for electronic correspondence to eliminate patients unlikely or unwilling to adhere to the terms of use. Take reasonable steps to properly authenticate and protect the privacy of patients. 77 | P a g e
    • 13.Are consumer ready for PHR ? Most people have simply not thought about the potential benefit of having their own medical health records online. So to investigate the public‘s attitudes and readiness to adopt electronic PHRs, I conducted a original research studies with 75 patient of Ruby hall clinic. The key findings are:  80 % respondents are having chronic illness.  70 % patient keep their medical reports(always or some times ).  92 % have personal computer with internet and 73% use internet daily.  60 % think that past records are important for present diagnosis.  In most of cases and 37 % think it is important for some cases.  52 % patients some time miss dome instruction given by doctors.  46% seeks internet for any health related information.  69% rate information given on net as good.  80% patient tries for second opinion(some time).  86% patient are fully agree that better informed patient can do a better care of health.  61% are partially agree that when ever you give your past medical history file to doctor he analyse it thoroughly.  59 % are willingness to transfer medical records via email to other consultants.  91% are willingness to have secured digital form of health record.  74% supported hospital as a most trusted authority for digital health record.  70% are ready to upload all their health care records through secured digital health records on hospital website.  62% are willing to bear for extra expenditure on digital health records.  50% are willingness to share all medical reports and 32 % are ready to share some of there records with hospital for research purpose. 78 | P a g e
    • Survey Form For Implementation of Personal Health Record System In Ruby Hall Clinic Personal Information Name:....................................................................................................................... Age : ............. Any chronic illness : a. Present b. Absent Address : .......................................................................................................... Mob . No. : ....................................................... Email id : ................................................................................................................ Questionnaire 1.what do you think about role of physical exercise or yoga in persons health condition ? a. extremely important b .important, but not so much c. Not important 2. Do you engage in some physical exercise or breathing exercise now ? a. Yes regularly b. Irregularly c. Never 3.Have you been keeping all your past health record ? a . Always b . Sometime c . Never 4.Do you manage to carry all your health records when you go to meet your doctor ? a Always b. Some time c. Never 5.How many doctors have you consulted till today ? a. Less then 5 b. 5-10 c. > 10 6 .For how long do you keep your past medical record ? a. All past visit b. Last 5- 10 visit c. Never store 79 | P a g e
    • 7.Do you think it is important to keep all your past record for better diagnosis of present condition? a. Yes for most of case b. Yes for some case c. No relation 8.Who takes care of your past medical records? a. My self b. Spouse c. Other 9. Do you understand all instructions given to you by your doctor ? a. Yes understood all instruction . b. Some times i miss some instruction c. Forget all instructions 10. Do you try to learn about your disease condition from other sources ? a. Yes always b .some time c. Never 11. Which source do you feel is most authentic and fast to get information on health issues? a. Books/news paper/magazine. b. Friends and relative c. Internet 12. How do you rate information given on internet ? a. Excellent b. Good c. Poor 13. Do you show your report to other consultants for second opinion ? a. Yes always b. Some times c. Never 14. “ Your past illness has major influence on your current condition” .How much do you agree with this statement. a. Fully agree b. Partially agree c. Do not agree 15. Are you able to understand your medical report results? a. Yes b. Partially c. Not at all 16. Do you want to understand your medical report? 80 | P a g e
    • a. Yes b. Partially c. No need to understand 17. Do you have personal computer or laptop with internet at home? a. Yes b. No 18. How often do you use internet ? a. Daily b. Some time in a week c. Never 19.Do you think if a patient is better informed about his health condition , he/she would be able to take care of his health in a better way? a. Yes fully agree b. Partially agree c. Not at all agree 20. Do you think when ever you give your past medical history file to your doctor he analyses all your report thoroughly ? a. Yes b. Partially c. Never think 21. Do you think a person who is more informed about his health condition would be able to talk to his doctor in a more meaningful way and would be in a better position to understand all the instruction of doctor and also the reports? a. Yes fully agree b. Partially agree c. Not at all agree 22. Would you like to transfer your medical records to other consultant via email? a. Yes. b. No 23. Would you like to have your medical records in secured digital form? a. Yes b. No 24.Whom would you trust most to keep your record in digital form ? a. Hospital portal b. Insurer portal c. Other healthcare portal 81 | P a g e
    • 25. Suppose your hospital starts giving a digital health record of all interested patient through a unique id and pass word in secured form would you like to use this service ? a. Yes all records b. Some records c. No not interested 26.For keeping your health records in digital form hospital will charge you some money ,would you like to bear this extra expenditure on your health ? a. Yes b. No c. Can’t say 27. (If yes) How would you like to make payment for this digital health ? a. Annually b. Once in a lifetime c. Can’t say 28. Are you willing to share all your past medical reports to your hospital for research purpose ? a. Yes all report b. Some report c .No not interested 82 | P a g e
    • 1.Gender of respondents. 1= male 2 2= female 35% 1 65% 2. Presence of Chronic illness 1. Present. 2. Absent. 2 20% 1 80% 83 | P a g e
    • 3.Role of physical exercise in persons health condition. 1= Extremely important 2 3 7% 1% 2= Important but not so much 1 3= No importance 92% 4.Engage in physical exercise. 1= yes regularly 3 1 2=Irregularly 23% 34% 3=Never 2 43% 84 | P a g e
    • 5. Keeping of past health record. 1= Always 3 1 2=Sometimes 31% 35% 3=Never 2 34% 6. How often you manage to carry medical records to doctor. 1=Always 1 2=Sometimes 3 15% 34% 3=Never 2 51% 85 | P a g e
    • 7. No. of doctors consulted till today 1= < 5 2= 5-10 3 1 32% 40% 3=>10 2 28% 8.How long keep record. 1 = All past visit 2 = Last 5- 10 visit 3 1 26% 38% 3 =Never store 2 36% 86 | P a g e
    • 9. Importance of past records in present diagnosis 1=Yes for most cases 3 2 3% 2=Yes for some cases 37% 1 3=No relation 60% 10. Who take care of Records 1=My self 2=Spouse 3 34% 1 3=Other 53% 2 13% 87 | P a g e
    • 11. Understanding of instruction given by doctor 1=Yes understood all 3 instruction 1% 1 2= Some time miss some 2 47% instruction 52% 3= forget all instruction 12. Learning about health condition from other sources 1=Always 3 16% 1 2=Sometimes 41% 3=Never 2 43% 88 | P a g e
    • 13.source of information 1= Books /News- paper/Magazine 3 1 46% 20% 2= Friends & Relatives 2 3= Internet 34% 14.How you rate of information available on internet. 1= Excellent 3 7% 2= Good 1 24% 3= Poor 2 69% 89 | P a g e
    • 15. Consult for second opinion 1=Always 3 1 17% 3% 2=Sometimes 2 3=Never 80% 16. Past illness impact present health condition. 1= Fully agree 3 18% 2= Partially agree 1 32% 3 =Do not agree 2 50% 90 | P a g e
    • 17. Personal computer with internet 1 = Yes 2 8% 2= No 1 92% 18. Frequency of using internet 1 = Daily 3 2 24% 3% 2 = Some times in a week 3 = Never 1 73% 91 | P a g e
    • 19. Better informed patient can do better care of health. 1 = Fully agree 2 3 14% 0% 2 = Some times in a week 3= Not agree 1 86% 20. When ever you give your past medical history file to doctor he analyse it thoroughly. 1 = Yes 3 2 = Partially agree 4% 1 35% 3 = Never think 2 61% 92 | P a g e
    • 21. Better informed patient able communicate in more meaning full ways with doctor. 1 = Fully agree 2 3 15% 1% 2 = Partially agree 3=Not agree 1 84% 22. Willingness to transfer medical records via email to other consultants. 1 = Yes 2 = No 2 41% 1 59% 93 | P a g e
    • 23. Willingness to have secured digital form of health record. 1 = Yes 2 9% 2 = No 1 91% 25. Most trusted authority for digital health record. 1 = Hospital portal 3 2 12% 2 = Insurer portal 14% 3=Other healthcare portal 1 74% 94 | P a g e
    • 26. Hospital as a service provider, through secured digital records what data you want to upload. 1 = Yes all record 3 1% 2 = Some records 2 29% 3 = Not interested 1 70% 27. Willingness for extra expenditure on digital health records. 1 = Yes 3 2 = No 18% 2 1 3 = Can’t say 20% 62% 95 | P a g e
    • 28.How would you like to payment for personal health records. 1 = Annually 3 20% 2 = Once in lifetime 1 3 = Can’t say 2 55% 25% 29. Willingness to share medical reports with hospital for research purpose. 1=Yes all report 3 18% 2 = Some reports 1 50% 2 3=Not interested 32% 96 | P a g e
    • 14. Are clinician ready for PHR? Doctors are using information technology but not primarily for reasons directly related to patient care. To gauge how doctors feel about personal health records, I took survey of 45 doctors of Ruby Hall Clinic. Salient point of research are:  76 % of doctor's are greater then 45yrs.  71 % doctor's use internet daily.  Experience of doctor’s about presentation of records by patients only 20 % records are organized; 42 % are organized but with some records missing; 38 % unorganized compilation of records.  49 % doctors believe that there may be chances for some vital information may missed due to unorganized presentation of medical records.  70 % doctors believe that Digital health records make patient more aware about his to a great extent .  digital health records helps doctor to guide there patient in a better ways ; 51 % doctor believe to a great extent ; 41% says to some extent  Digital health records improves doctors efficiency ;55 % says to a great extent ;38 % says to some extent.  Digital health records reduce the chances of medical errors made by doctors ,nurses , and pharmacists ;51 % says to a great extent ;46 % says to some extent  Digital health records improves the quality of discussion between doctor and patient; 47 % says to a great extent ; 51 % says to some extent.  Digital health records play crucial role during emergency ;67 % says to a great extent; 27 % says to some extent..  89 % Would you like to implement digital health records system in ruby hall  67 % Would you like to give prescription via e mail based digital health records (if hospital will pay for you for this service)?. 97 | P a g e
    • Survey Form For Implementation Of Personal Health Record System In Ruby Hall Clinic Personal Information Name :................................................................................................................... Age : ...................... Range : a.<30 b.30-45 c. > 45 Sex : a. Male b. Female 1. How often do you use internet ? a. Daily b. Some time in a week c. Never 2.For the patients with chronic illness what is your experience about presentation of their medical records. a. Organized in most of the cases. b. Organized but with some records missing. c. Unorganized compilation of records. 3.Do you think that due to unorganized presentation of records ,there are chances that some vital information might be missed out while making diagnosis. a. Yes in most of the cases. b. Yes in some of the cases. c. No it is not possible . 4. Do you think that conversion of medical records in to digital format will make job easier for doctor to make proper diagnosis? a. Yes it will help doctors significantly. b. Yes it will help doctor to some extent. c. It hardly makes any difference. 5.According to you, will digital health records help a patient becoming more aware about the his / her present health condition . a. To a great extent . b. To some extent. c. It will not help. 98 | P a g e
    • 6.If yes, will this awareness help a patient in taking appropriate care of his/her health condition as prescribed by doctor . a. To a great extent b. To Some extent. c. Not agree 7.Will digital health records help you to guide your patient in a better way. a . To a great extent b. To some extent. c. Not agree. 8.Do you think digital health record will reduce the chances of medical error by doctors , nurses , pharmacists? a. To a great extent b. To some extent. c. Not agree. 9.Do you think implementation of digital health record will improve doctor’s efficiency? a. To a great extent b. To some extent. c. Not agree. 10.Do you think implementation of digital health record will change the quality of discussion between a doctor and his patient? a. To a great extent b. To some extent. c. Not agree. 11.Do you think digital health record will play a crucial role during emergency situations ? a. To a great extent b. To some extent. c. Not agree. 12.Would you like to implement this system in our hospital ? a. Yes b. No c. can’t say. 13. How comfortable are you in using this digital health record while giving prescription to your patient . a. Most comfortable b .Comfortable c. Some what comfortable d. Not comfortable . e. Unwilling to use 14. Would you like to give prescription to your patient via internet based on digital health records?( hospital will pay for you for this service) a. yes b. no ( signature of doctor) 99 | P a g e
    • 1.Age of doctor's 1 = <30 yrs 3 76% 2 = 30-45 yrs 2 1 3 = > 45 yrs 11% 13% 2.Gender of doctors. 1= male 2 27% 2=female 1 73% 100 | P a g e
    • 3. Use internet by doctor's 1= daily 1 71% 2=some times in a week 3= never 2 27% 3 2% 4. Experience of doctor's about presentation of medical records by patient 1 = organized in most of the cases 2 2 = organized but with some 42% records missing 1 3 20% 3 = unorganized compilation 38% of records 101 | P a g e
    • 5. Chances for some vital information may missed due to unorganized presentation of medical records. 1 = most of cases 1 2=some of the cases 49% 2 3 = not possible 44% 3 7% 6. Digital health records makes job easier for doctor to make accurate diagnosis. 1 = help doctor significantly 1 2 = help to some extent 69% 2 3 = hardly makes any 3 29% difference 2% 102 | P a g e
    • 7. Digital health records make patient more aware about his /her health condition. 1= to a great extent 3 2 8% 2= to some extent 22% 3= will not help 1 70% 8. Will awareness in patient helps him in taking appropriate care of his health as prescribe by doctor 1 = to a great extent 3 9% 1 2 = to some extent 53% 3 = not agree 2 38% 103 | P a g e
    • 9. Will digital health records helps doctor to guide there patient in a better ways 1= great extent 3 8% 2= to some extent 1 2 51% 3= it will not help 41% 10. Digital health records reduce the chances of medical errors made by doctors ,nurses , and pharmacists 1 = to a great extent 3 3% 2 = to some extent 2 1 46% 51% 3 =not agree 104 | P a g e
    • 11. Digital health records improves doctors efficiency 1 = to a great extent 1 2 = to some extent 55% 3 = not agree 2 38% 3 7% 12. Digital health records improves the quality of discussion between doctor and patient. 1 = to a great extent 3 1 2% 47% 2 = to some extent 2 3 = not agree 51% 105 | P a g e
    • 13. Digital health records play crucial role during emergency 1 = to a great extent 1 2 = to some extent 67% 3 = not agree 2 27% 3 6% 14. Would you like to implement digital health records system in ruby hall 1= yes 1 89% 2= no 3= can’t say 2 2% 3 9% 106 | P a g e
    • 15. How comfortable would you be in using digital health records while giving prescription to your patient 1 = most comfortable 1 38% 2 = comfortable 3= some what comfortable 2 5 3 40% 2% 20% 4 = not comfortable 5 = unwilling to use 16. Would you like to give prescription via email based digital health records (hospital will pay for you for this service) 1.Yes 1 2.No 67% 2 33% 107 | P a g e
    • 15.Creative advertisement For creating awareness of personal health records .i had created 15 magazine style advertisement .then with the help of power point presentation I show this ad in my class of 38 strength and ask to rank this ads on 4-point scale with 1 being the “very pervasive” and 4 being “not at all pervasive”.so result are not very accurte as only one seection of people ad check this ad, but we can do survey in hospital for the same. 4 5% 1 3 32% 1. Very pervasive. 42% 2. Pervasive. 2 3. Some what pervasive. 21% 4. Not at all pervasive. 108 | P a g e
    • 3 2 26% 26% 1. Very pervasive. 2. Pervasive. 2 3. Some what Pervasive. 48% 4. Not at all pervasive 109 | P a g e
    • 1 4 5% 2 26% 21% 1.Very pervasive. 2.Pervasive. 3 3.Some what pervasive. 48% 4.Not at all pervasive 110 | P a g e
    • 1 5% 4 1.Very pervasive. 2 26% 21% 2.Pervasive. 3.Some what pervasive. 3 4.Not at all pervasive 48% 111 | P a g e
    • 1 4 16% 1.Very pervasive. 21% 2.Pervasive. 3 3.Some what pervasive. 5% 2 58% 4.Not at all pervasive 112 | P a g e
    • 1 16% 4 1.Very pervasive. 26% 2.Pervasive. 3 2 3.Some what pervasive. 16% 42% 4.Not at all pervasive 113 | P a g e
    • 1 1.Very pervasive. 32% 2.Pervasive. 2 3.Some what pervasive. 68% 4.Not at all pervasive 114 | P a g e
    • 4 1 26% 27% 1.Very pervasive. 2.Pervasive. 3 2 26% 21% 3.Some what pervasive. 4.Not at all pervasive 115 | P a g e
    • 4 5% 1 1.Very pervasive. 16% 3 2.Pervasive. 26% 3.Some what pervasive. 2 53% 4.Not at all pervasive 116 | P a g e
    • 3 1 1.Very pervasive. 26% 42% 2.Pervasive. 2 32% 3.Some what pervasive. 4.Not at all pervasive 117 | P a g e
    • 1 1.Very pervasive. 4 5% 2 42% 2.Pervasive. 27% 3.Some what pervasive. 3 26% 4.Not at all pervasive 118 | P a g e
    • 1 5% 4 2 1.Very pervasive. 32% 26% 2.Pervasive. 3 3.Some what pervasive. 37% 4.Not at all pervasive 119 | P a g e
    • 4 10% 1 1.Very pervasive. 3 16% 16% 2.Pervasive. 2 3.Some what pervasive. 58% 4.Not at all pervasive 120 | P a g e
    • 4 10% 1 1.Very pervasive. 21% 2.Pervasive. 3 2 37% 3.Some what pervasive. 32% 4.Not at all pervasive ` 121 | P a g e
    • 4 10% 1 37% 1.Very pervasive. 3 32% 2.Pervasive. 2 3.Some what pervasive. 21% 4.Not at all pervasive 122 | P a g e
    • 16.COST OF IMPLEMENTING PERSONAL HEALTH RECORDS IN RUBY HALL WORKING CAPITAL TOTAL SALARY SALARY TOTAL @ PER PER ANNUAL MONTH MONTH SALARY NO.OF DOCTOR (MBBS)FOR TAKING CASE HISORY 5 9000 45000 540000 NO.OF NURSES REQ. 2 5000 10000 120000 MARKETING MANAGER 2 10000 20000 240000 DATA ENTRY PERSON 2 5000 10000 120000 SENIOR CONSULTANT AS DEPT. HEAD (M.D.) 1 20000 20000 240000 IN HOUSE MARKETING EXPENSES (FOR CREATING AWARENESS) 100000 MISCELLENOUS (TELEPHONE + INTERNET+STATIONARY+OTHER) 10000 120000 3*(2 CALL CENTER PERSON SHIFT)=6 7000 42000 504000 TOTAL EXPENSES 1,984,000 COST OF DATA STORING DEVICE(USB OR PENDRIVE) 150 TOTAL EXPENCES 3968000 FIXED COST COST OF SOFTWARE + TRAINING 2,000,000 123 | P a g e
    • Expected income statement YEAR 1 YEAR 2 YEAR 3 YEAR 4 TOTAL ADMISSION 31980 20% 6396 7035.6 7739.16 8513.076 TOTAL OPD 129880 10% 12988 14286.8 15715.48 17287.028 TARGET NO OF PATIENT 19384 21322.4 23454.64 25800.104 REVENUE GENERATE @ 500 9692000 10,661,200 11,727,320 12,900,052 EXPENDITURE COST OF DATA STORING DEVICE(PEN DRIVE/USB) 150/UNIT 2907600 3198360 3518196 3870015.6 WORKING CAPITAL 1984000 2182400 2400640 2640704 TOTAL EXPENDITURE 4891600 5380760 5918836 6510719.6 TOTAL INCOME 4800400 5,280,440 5,808,484 6,389,332 COST PER CUSTOMER 252 252 252 252 EARNING PER CUSTOMER 248 248 248 248 PER DAY TARGET (330 WORKING DAY) 58.7 64.6 71.1 78.2 ADMISSION 19.4 21.3 23.5 25.8 OPD 39.4 43.3 47.6 52.4 NO. OF CASES A DOCTOR NEED TO HANDLE PER DAY (APPOX.) 12 13 14 16 124 | P a g e
    • OTHER SOURSES OF INCOME 1.REFILLING OF RECORDS 30-50 Rs./TIMES 2.ADVERTISEMENT ON WEBSITE 125 | P a g e
    • Bibliography: 1.Mayo clinic.com 2.Project health design. 3.Health on net foundation( www.honcode.com) . 4.www.indlawnews.com 5.www.healthezen.com 6.Markel foundation connecting for health . 7.The Robertwood Johnson foundation. 8.Various publications of Ruby hall clinic. 9.www.Imagebazaar.com 126 | P a g e