Personal health records - basic concepts and models


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Personal health records - basic concepts and models
Antto Seppälä, University of Tampere

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Personal health records - basic concepts and models

  1. 1. Trusted eHealth and eWelfare space – Personal Health Record basic models and concepts Antto Seppälä Espoo 03.02.2010
  2. 2. Citizen centric healthcare <ul><li>Current healthcare systems are facing challenges around the world. Healthcare systems are threatened by rising costs, increased demand, chronic diseases, uneven quality, etc. </li></ul><ul><li>Healthcare systems are still pretty much organization centric and based on pretty static care processes and disease treatment. </li></ul><ul><li>Change is needed – citizen centric care </li></ul><ul><ul><ul><li>From organization centric healthcare to consumer / citizen centric care </li></ul></ul></ul><ul><ul><ul><li>From a single disease treatment to more complete health and wellness care </li></ul></ul></ul><ul><ul><ul><li>Preventive care and proactive services </li></ul></ul></ul><ul><ul><ul><li>Interoperable network of services and information sources, shared data and care management </li></ul></ul></ul><ul><ul><ul><li>Specialization and decentralization of care </li></ul></ul></ul><ul><ul><ul><li>Extended communication and co-operation for guaranteeing comprehensive care services. </li></ul></ul></ul><ul><ul><ul><li>Different stakeholders need real-time reliable and secure information </li></ul></ul></ul>
  3. 3. Citizen centric healthcare <ul><li>- In personal health settings, the number of actors involved in health services are dramatically growing with an increasing number of actor types or principals -> need for interoperable care management and citizen empowerment </li></ul><ul><li>Citizen empowerment* = Citizens are encouraged to take an active part in their own health management </li></ul><ul><li>Citizens need to be able to take healthcare out of provider network to their homes and embed it into their lives </li></ul><ul><li>This should include the whole range of activities: </li></ul><ul><ul><ul><li>-ranging from life style and self health management, </li></ul></ul></ul><ul><ul><ul><li>-to improving the lives of patients and citizens </li></ul></ul></ul><ul><ul><ul><li>-as well as managing serious disease conditions </li></ul></ul></ul><ul><li>Information empowers the citizen -> informed citizens take better care of their health </li></ul><ul><li>Healthcare information is very fragmented </li></ul><ul><li>Low availability of patient data </li></ul><ul><li>Data is incomplete and typically episodic, focusing on treatment of a disease </li></ul><ul><li>Most of the current information systems and data are created for healthcare organizations needs and workflows </li></ul><ul><li>*Source: eHealth ERA &quot;Report on Priority Topic Cluster Two and recommendations&quot; </li></ul>
  4. 4. Personal health record <ul><li>The word “record” suggests that PHR might only be a repository of past health information, but usually PHR is thought to contain a lot more than that. </li></ul><ul><li>PHRs basic function is to help citizens to create an integrated and complete view of their health information. </li></ul><ul><li>Common characteristics of personal health record : </li></ul><ul><ul><li>PHR is an electronic health information storage </li></ul></ul><ul><ul><li>PHR focuses on citizen own personal health </li></ul></ul><ul><ul><li>Lifelong resource of health information needed by individuals to make health decisions </li></ul></ul><ul><ul><li>Individuals own and manage the information in the PHR </li></ul></ul><ul><ul><li>Usually PHR includes clinical information from different healthcare providers but it also might include users own observations and entries </li></ul></ul><ul><ul><li>PHR is maintained in a secure and private environment, with the individual determining rights of access </li></ul></ul><ul><ul><li>The PHR is separate from and does not replace the legal record of any provider </li></ul></ul><ul><li>- PHR is a set of tools that help citizens to collect, access, coordinate, share and store their lifelong personal wellness and health information. PHR might also include decision support tools to help citizens to manage her own health. </li></ul>
  5. 5. Personal health record <ul><li>PHR systems are quite different from typical health information systems, because they are created for the patients, and not for the healthcare organizations and their workflows </li></ul><ul><li>PHR systems are designed to support citizen empowerment and help citizens to track and manage health activities through their lifetime (although the citizen is the primary user of the PHR, other stakeholders might also benefit from the use of PHR systems) </li></ul><ul><li>Markle Foundation has defined critical attributes for PHR solutions: </li></ul><ul><li>1. Each person controls his or her own PHR </li></ul><ul><li>2. PHRs contain information from one’s entire lifetime including information from all healthcare providers </li></ul><ul><li>3. PHRs are accessible from any place at any time </li></ul><ul><li>4. PHRs are private and secure </li></ul><ul><li>5. PHRs are transparent. Individuals can see who entered each piece of data, where it was transferred from and who has viewed it </li></ul><ul><li>6. PHRs permit easy exchange of information across the health care system </li></ul>
  6. 6. PHR models <ul><li>Three models of PHR: </li></ul><ul><ul><ul><li>Free-standing PHR : paper- or PC-based solutions or enabled by internet application. Content is created by and controlled by the user. Manual data entry and updates (problems with accuracy and completeness). </li></ul></ul></ul><ul><ul><ul><li>Tethered / Provider system PHR : The tethered PHR is a patient facing extension of the clinician-controlled EHR through web portal. Patient data is controlled by health care provider. </li></ul></ul></ul><ul><ul><ul><li>Interconnected PHR : Patients information comes from various sources (e.g. EHR, insurance claims, pharmacy data…). More complete view of health information. Consumer also contributes information. </li></ul></ul></ul><ul><ul><ul><li>Tang, PC, et al, Personal Health Records: Definitions, Benefits, and Strategies for overcoming Barriers to </li></ul></ul></ul><ul><ul><ul><li>Adoption, Am Med Inform Assoc. 2006 </li></ul></ul></ul>
  7. 7. Functionalities of PHR <ul><li>PHRs may vary a lot in use, use contexts and users. The characteristics of users differ from healthy individuals to chronically ill individuals, and their needs and skills might be totally different </li></ul><ul><li>Give patients an easy access to their own health data </li></ul><ul><li>Help patients to control and manage their own data and share it </li></ul><ul><li>Enable communication between a patient and a healthcare provider </li></ul><ul><li>Include functionalities for citizens’ personal health data management and decision support (e.g. disease management tools, reminders of health activities, health risk assessment and etc.) </li></ul><ul><li>Enable patient to refer documents from healthcare providers (e.g. instructions, prescriptions) </li></ul><ul><li>Track patients healthcare services (e.g. appointments, vaccinations) </li></ul><ul><li>Find information on health and wellness topics </li></ul><ul><li>Provide tools for home monitoring for chronic diseases </li></ul><ul><li>Enable citizens to manage their complete wellness </li></ul><ul><li>etc. </li></ul>
  8. 8. Information content <ul><li>PHR tries to combine information from different information systems and devices, so it must be able to operate beyond organizational and technological boundaries </li></ul><ul><li>Information in PHR is life-long and cross-institutional which means that the information comes from multiple sources and it might also include persons own entries </li></ul><ul><li>Some information in PHR can be common to all users, but most of the information and its depth will vary according to personal preferences and health conditions </li></ul><ul><li>Advanced PHR is usually considered to include at least: </li></ul><ul><ul><li>Citizens’ personal information </li></ul></ul><ul><ul><li>Different results and reports </li></ul></ul><ul><ul><li>Clinical summary and history </li></ul></ul><ul><ul><li>Medication information </li></ul></ul><ul><ul><li>Clinical encounters </li></ul></ul><ul><ul><li>PHR can also include self-reported information including physiological information, allergies, risk factors, diets, exercise, etc </li></ul></ul><ul><li>PHR should be able to handle also information from different medical devices and sensors </li></ul>
  9. 9. PHR Implementations <ul><li>A lot of different vendors for PHR solutions </li></ul><ul><li>Major corporations and nonprofit organizations are developing their own PHR systems </li></ul><ul><ul><li>Microsoft HealthVault </li></ul></ul><ul><ul><li>Google Health </li></ul></ul><ul><ul><li>Veterans Health Administration MyHealtheVet ( ) </li></ul></ul><ul><ul><li>AHIMA’s MyPHR lists a lot of PHR solutions </li></ul></ul>
  10. 10. Thanks! Comments or questions? [email_address]