Personal health records - basic concepts and models

Trusted eHealth and eWelfare space – Personal Health Record basic models and concepts Antto Seppälä Espoo 03.02.2010

Citizen centric healthcare
Current healthcare systems are facing challenges around the world. Healthcare systems are threatened by rising costs, increased demand, chronic diseases, uneven quality, etc.
Healthcare systems are still pretty much organization centric and based on pretty static care processes and disease treatment.
Change is needed – citizen centric care
From organization centric healthcare to consumer / citizen centric care
From a single disease treatment to more complete health and wellness care
Preventive care and proactive services
Interoperable network of services and information sources, shared data and care management
Specialization and decentralization of care
Extended communication and co-operation for guaranteeing comprehensive care services.
Different stakeholders need real-time reliable and secure information

Citizen centric healthcare
- 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
Citizen empowerment* = Citizens are encouraged to take an active part in their own health management
Citizens need to be able to take healthcare out of provider network to their homes and embed it into their lives
This should include the whole range of activities:
-ranging from life style and self health management,
-to improving the lives of patients and citizens
-as well as managing serious disease conditions
Information empowers the citizen -> informed citizens take better care of their health
Healthcare information is very fragmented
Low availability of patient data
Data is incomplete and typically episodic, focusing on treatment of a disease
Most of the current information systems and data are created for healthcare organizations needs and workflows
*Source: eHealth ERA "Report on Priority Topic Cluster Two and recommendations"

Personal health record
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.
PHRs basic function is to help citizens to create an integrated and complete view of their health information.
Common characteristics of personal health record :
PHR is an electronic health information storage
PHR focuses on citizen own personal health
Lifelong resource of health information needed by individuals to make health decisions
Individuals own and manage the information in the PHR
Usually PHR includes clinical information from different healthcare providers but it also might include users own observations and entries
PHR is maintained in a secure and private environment, with the individual determining rights of access
The PHR is separate from and does not replace the legal record of any provider
- 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.

Personal health record
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
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)
Markle Foundation has defined critical attributes for PHR solutions:
1. Each person controls his or her own PHR
2. PHRs contain information from one’s entire lifetime including information from all healthcare 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 across the health care system

PHR models
Three models of PHR:
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).
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.
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.
Tang, PC, et al, Personal Health Records: Definitions, Benefits, and Strategies for overcoming Barriers to
Adoption, Am Med Inform Assoc. 2006

Functionalities of PHR
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
Give patients an easy access to their own health data
Help patients to control and manage their own data and share it
Enable communication between a patient and a healthcare provider
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.)
Enable patient to refer documents from healthcare providers (e.g. instructions, prescriptions)
Track patients healthcare services (e.g. appointments, vaccinations)
Find information on health and wellness topics
Provide tools for home monitoring for chronic diseases
Enable citizens to manage their complete wellness
etc.

Information content
PHR tries to combine information from different information systems and devices, so it must be able to operate beyond organizational and technological boundaries
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
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
Advanced PHR is usually considered to include at least:
Citizens’ personal information
Different results and reports
Clinical summary and history
Medication information
Clinical encounters
PHR can also include self-reported information including physiological information, allergies, risk factors, diets, exercise, etc
PHR should be able to handle also information from different medical devices and sensors

PHR Implementations
A lot of different vendors for PHR solutions
Major corporations and nonprofit organizations are developing their own PHR systems
Microsoft HealthVault
Google Health
Veterans Health Administration MyHealtheVet ( www.myhealthevet.va.gov )
AHIMA’s MyPHR lists a lot of PHR solutions http://www.myphr.com/

Thanks! Comments or questions? [email_address]

Personal health records - basic concepts and models

by Iiro Jantunen on Feb 08, 2010

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