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".

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Personal Health Records

  2. 2. 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
  3. 3. 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
  4. 4. 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
  5. 5. 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
  6. 6. 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
  7. 7. 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
  8. 8. 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
  9. 9. 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
  10. 10. 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
  11. 11. 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
  12. 12. 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
  13. 13. 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
  14. 14. 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
  15. 15. 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
  16. 16. 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
  17. 17. 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
  18. 18. 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
  19. 19. 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
  20. 20. 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
  21. 21. conditions, medications, allergies, immunization history, certain test results, surgical history, health risks, lifestyle information and advance directives. 21 | P a g e
  22. 22. 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
  23. 23. 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
  24. 24. 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
  25. 25. 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
  26. 26. 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 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
  27. 27. 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
  28. 28. 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
  29. 29. 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
  30. 30. 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
  31. 31. • 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
  32. 32. 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
  33. 33. 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
  34. 34.  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
  35. 35. 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
  36. 36. 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
  37. 37. 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
  38. 38. 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
  39. 39. 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
  40. 40. “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
  41. 41. 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
  42. 42. 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
  43. 43. 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
  44. 44. 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
  45. 45. 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
  46. 46. 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
  47. 47. 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
  48. 48. 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
  49. 49. 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
  50. 50. 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
  51. 51. 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
  52. 52. 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
  53. 53. 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
  54. 54. 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