We're all pretty familiar now with the concepts of HealthVault and Google Health as PHRs. Then there is also PatientsLikeMe and PHRs sponsored by diabetes and other chronic condition organisations, and those proposed by your health insurer, and those on your phone that support you managing your weight, diet, fitness, blood pressure, glucose readings... the list goes on. Horses for courses. I spent a reasonable portion of my Easter break commenting on an evolving draft ISO technical report that is attempting to provide an authoritative view on the definition, scope and context of Personal Health Records (PHRs). Given that standards organizations are usually way behind the times, it is good to see that they are attempting to address these issues, but then again, there were over 200 PHR's on the market back in 2000 when I did some market research - 10 years ago. Most are now defunct and we now have a new range of PHRs - most with better business models, not necessarily better functionality!
So after observing the PHR evolution for some time now, my conclusion is that it appears to be getting significantly harder to define the PHR, rather than easier. It's a bit of a mess really - most 'definitions' actually describe what a PHR might or can DO, not being brave enough to define exactly what it IS! This reflects the real difficulty in pinning down the concept of a personal health record as the domain is filled with huge variation in potential solutions: those aimed at supporting individual self management of health conditions, informed consumer decision-making and consumer entered health information; those evolving towards shared records and distributed healthcare in varying levels of collaboration with clinicians; and those providing constrained access for the individual to clinician EHRs - all complicated by varieties of input, control, ownership of content and access rules for individuals and clinicians.
Some describe the individual merely as 'a key stakeholder determining its content and with rights over that content' - I find this problematic. Can the individual only be a stakeholder in a PHR - personally I think of the individual or the consumer or the patient as the absolute focus and the pivot point of a PHR - it is all about them AND it is all for them.
All in all, I think that the number of disparate 'definitions'/descriptions reflects the difficulty that comes from trying to define a concept that is hugely broad in scope and function, and is likely to evolve and increase in complexity over time. And these current definitions and descriptions certainly don't reflect my current simple use of a number of different types of PHRs on my phone.
I am increasingly of the opinion that there are actually two conceptual entities that we should consider in relation to personal health records :
- The first being a 'pure PHR' which are usually self-contained applications where the individual owns, controls and maintains their health information (or delegates the control and maintenance to a trusted individual to operate on their behalf). The 'pure PHR' can be viewed as the counterpoint to the clinician's EHR - authored, managed and owned by the clinician (although with obligations to make that information available to the individual upon request). Thus, the 'pure' PHR could be defined relatively simply, encompassing the opposite end of the spectrum to the clinician's formal EHR.
There are so many examples of these applications.
- Many small self-contained 'best of breed' ones available on PCs or our phones tracking our weight and blood sugar, diet diaries - I have Weightbot, ShapeUp, and bant on my iPhone as examples.
- Some are integrators, offering a number of these applications in one place eg HealthVault. Still, the individual owns and manages it all on one platform.
- Then there are 'the rest' - which, for want of a better term, I will call the 'hybrid health record'. These hybrid health records are proliferating at a great rate, and with many permutations and combinations with respect to the role of the individual and the clinician; how much health information is shared between parties; inclusion of third party content; ownership; who controls what, etc. This group of hybrid records are difficult to clearly define, but have the potential to transform the way we deliver health care in the next decade. This is where I believe that the 'magic' will happen - where we will really begin to make a difference in healthcare!
- At the EHR end of the hybrid spectrum will be EHRs with patient portals which will allow the individual to view some of the content with their clinician's EHR.
- Towards the 'pure' PHR end of the hybrid spectrum will be primarily patient-managed records, allowing clinicians some limited rights or inclusion of their content.
- In the mid range will be health records that may evolve towards what we tend to think of as 'shared health records' or others with collaborative models combining content from individuals and clinicians under agreed terms and conditions.
Just as we have a clear and concise definition/s of the EHR as one that is owned,maintained and controlled by the clinician, in the interests of clarity I'd like to see a similar definition of an equivalent PHR - one that is owned, controlled and maintained by the individual. This definition is supported by the definition by Gartner in their Global Definitions of EHR, PHR, E-Prescribing and Other Terms for Healthcare Providers (2008): “A PHR is a patient-owned and patient-controlled online record of medical information etc etc..." (Note that 'online' is clearly a delivery method and inappropriate for a PHR definition.)
I think that it is possible to define the EHR and 'pure' PHR as clear end points, and then we can allow for the huge variability in between, the domain of the 'hybrid' record. These names I have used may not be right or final but use them to consider distinguish between the concepts for now.
I also like the idea of describing the content scope for a PHR as having:
- breadth - encompassing health, wellness, development, welfare and concerns; plus
- depth - encompassing history of past events, actions and services; tracking and monitoring current health or activities; and goals and plans for future.
What do you think?