The final draft version of ISO 251's Technical Report "Personal Health Records — Definition, Scope and Context" has just been sent for formal publication. I was involved in some of the later drafting, especially proposing the notion of a spectrum, or continuum of person-centric health records was. The latest iteration, here:
Healthcare organisations and healthcare systems are accountable for the content of EHRs that they control. Individuals have autonomy over records they choose to keep. However, in between these two strict views of an EHR and a PHR is a continuum of person-centric health records which may have varying degrees of information sharing and/or shared control, access and participation by the individual and their healthcare professionals. Toward the EHR end of the spectrum, some EHRs provide viewing access or annotation by the individual to some or all of the clinician’s EHR notes. Towards the PHR end of the spectrum some PHRs enable individuals to allow varying degrees of participation by authorised clinicians to their health information – from simple viewing of data through to write access to part or all of the PHR.
In the middle of this continuum there exist a growing plethora of person-centric health records that operate under collaborative models, combining content from individuals and healthcare professionals under agreed terms and conditions depending on the purpose of the health record. Control of the record may be shared, or parts controlled primarily by either the individual or the healthcare professional with specified permissions being granted to the other party.
And the final diagram:
Australia's PCEHR is an evolving example of a person-centric health record aiming for that somewhat scary middle zone of shared responsibility and mixed governance - carrying with it enormous potential for changing the delivery of healthcare and surmounting enormous clinical, technical, cultural and social challenges.
What kind of things should we be considering?
How can we make the PCEHR a successful and vital component of modern healthcare delivery? What features and attributes will ensure that we steer clear of the approaches of previous failed projects and, instead, create some positive traction?
I've considered these issues for many years as I've watched the PHR/EHR domain wax and wane and I keep returning to 3 major factors that need to be considered from both the consumer and the clinician points of view:
- Health is personal
- Health is social
- Liquid data
These are the big brush stroke items that need to be front and centre when we are designing person-centric health records. Will post some more thoughts soon.