The ultimate PHR?

I've been interested in the notion of a Personal Health Record for a long time. I was involved in the development of HotHealth, which launched at the end of 2000, a not-so-auspicious year, given the dot com crash! By the time HotHealth was completed , all the potential competitors identified in the pre-market environmental scan were defunct. It certainly wasn't easy to get any traction for HotHealth take-up and yet only recently it has been retired. For a couple of years it was successfully used at the Royal Children's Hospital, cut down and re-branded as BetterDiabetes to support teenagers self-manage their diabetes and communicate with their clinicians, but it wasn't sustained.

This is not an uncommon story for PHRs. It is somewhat comforting to see that the course of those such HealthVault and GoogleHealth have also not been smooth and fabulously successful :-)

Why is the PHR so hard?

In recent years I participated in the development of the ISO Technical Report 14292:2012: Personal health records -- Definition, scope and context. In this my major contribution seemed to be introducing the idea of a health information continuum.

However in the past year or so, my notion of an ideal PHR has moved on a little further again. It has arisen on the premise of a health record platform in which standardised health information persists independently of any one software application and can be accessed by any compliant applications, whether consumer- or clinician-focused. And the record of health information can be contributed to by any number of compliant systems - whether a clinical system, a PHR or smartphone app. The focus is on the data, the health record itself; not the applications. You will have seen a number of my previous posts, including here & here!

So, in this kind of new health data utopia, imagine if all my weights were automatically uploaded to my Weight app on my smartphone wirelessly each morning. Over time I could graph this and track my BMI etc. Useful stuff, and this can be done now - but only into dead-end silos of data within a given app.

And what if a new fandangled weight management application came along that I liked better - perhaps it provided more support to help me lose weight. And I want to lose weight. So I add the new app to my smartphone and, hey presto, it can immediately access all my previous weights - all because the data structure in both apps is identical. Thus the data can be unambiguously understood and computed upon within the second app without any data manipulation. Pretty cool. No more data silos; no more data loss. Simply delete the first app from the system, and elect to keep the data within my smartphone health record.

And as I add apps that suit my lifestyle, health needs, and fitness goals etc, I'm gradually accumulating important health information that is probably not available anywhere else. And consider that only I actually know what medicines I'm taking, including over the counter and herbals. The notion of a current medication list is really not in the remit of any clinician, but the motivated consumer! And so if I add an app to start to manage my medications or immunisations this data could be also used across in yet another compliant chronic disease support app for my diabetes or asthma or...

I can gradually build up a record of health information that is useful to me to manage my health, and that is also potentially useful to share with my healthcare providers.

Do you see the difference to current PHR systems?

I can choose apps that are 'best of breed' and applicable to my need or interest.

I'm not locked in to any one app, a mega app that contains stuff I don't want and will never use, with all the overheads and lack of flexibility.

I can 'plug & play' apps into my health record, able to change my mind if I find features, a user interface or workflow that I like better.

And yet the data remains ready for future use and potentially for sharing with my healthcare providers, if and when I choose. How cool is that?

Keep in mind that if those data structures were the same as being used by my clinician systems, then there is also potential for me to receive data from my clinicians and incorporate it into my PHR; similarly there is also potential for me to send data to my clinician and give them the choice of incorporating this into their systems - maybe my blood glucose records directly obtained from my glucometer, my weight measurements, etc. Maybe, one day, even MY current medicine list!

In this proposed flexible data environment we are avoiding the 'one size fits all', behemoth approach, which doesn't seem to have worked well in many situations, both clinical systems or personal health records. Best of all the data is preserved in the non-proprietary, shared format - the beginnings of a universal health record or, at least, a health record platform fully supporting data exchange.

What do you think?

The health information continuum

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.

Control of the PHR

Pondering my last post further... While our reality is that there are both individual- and clinician-focused PHRs, in any PHR where there is co-located content (i.e. of both individual- and healthcare provider-origins) there needs to be a final, single arbiter of content, quality and control. While the ideal is that this should be as shared and collaborative as possible, my personal feeling is that in the long term, successful PHRs will be those with the individual at the helm, with the clinician/s participating as a key partner.

In addition, a PHR controlled by an individual is more likely to succeed and be used by healthcare providers if there are sound data management processes underlying the PHR to support sound data stewardship for all participants. We can't underestimate the importance of ensuring that provenance of data is transparent, and that contributions to the PHR from external sources such as laboratory reports or discharge summaries remain intact and unedited etc. This is not a technical problem, but requires intelligent PHR design. Both individuals and healthcare providers need to be comfortable with how the individual's data is managed and represented, ensuring protection of the integrity and traceability of externally sourced data, and allowing the individual to annotate or tag data with their own comments or concerns.

Provision of healthcare has traditionally been quite a paternalistic process. We clinicians have acted as stewards on behalf of our patients. Interestingly in my discussions with consumers even in recent years, many are happy for this status quo to continue, not feeling confident or competent to control or manage their health information. Yet ironically these are the same people who operate their own financial affairs, bank online, shop online, email, tweet and blog. Transitioning the control of health information back to the individual may not be as easy as we anticipate. Most groups anticipate that the consumer will be willing to take over as soon as we make their health information available to them. I think that the reality might be more challenging and not without controversy. It will require education processes to support the transition for both the individual and the healthcare provider.

We can pull out that old chestnut and as clinicians declare that data in a health record can't be relied upon unless it has been entered by a clinician, however once you look at any amount of EHR data you will realise that clinician-entered data is not necessarily synonymous with quality. In counterpoint there are an increasing number of clinicians who can tell stories where their patients were able to correct their data when viewing a share computer monitory in a consultation.

I will vote optimistically and promote the case for individual's to control their PHRs. Individuals are best positioned to act as the central integrator for the broadest range of healthcare providers who participate in their care, and I view the adding their own data as a bonus. The broader, the deeper, the richer an individual's health information is, potentially the better the care that can be provided for them.

The sum is greater than the (isolated EHR) parts, let's not undervalue that – encourage individual-controlled PHRs, but always with sound data stewardship as the highest priority.

Defining the PHR – take II

Following on from my April post regarding thoughts about Person Health Records, I've been working with Professor Dipak Kalra to clarify the definitions and purpose of PHRs. This work is intended to be part of a much larger document which describes PHRs and provides examples. It is not an easy task - PHRs are difficult critters to pin down and most definitions are more a description, but here is my next take on trying to do so...

Personal Health Records are by their very nature hard to define and in order to tease out the breadth and depth of PHRs, it may be helpful to consider PHRs and clinical EHRs being positioned at two opposing ends of a spectrum of health records (see diagram). We could attempt to define a PHR as the direct counterpoint to an Electronic Health Record, but in practice the lines of demarcation are most often not clear nor desirable, except when viewed in terms of who has control over the health record and the content within.

While EHRs have traditionally been defined as “logical representations of information regarding or relevant to the health of a subject of care”, they have existed primarily for the purposes of the healthcare provider providing care to an individual. Information from EHRs may be made available to the subject of care or their authorised representative, upon request to the clinician who is acting as a steward of the health information. In some countries this is supported by specific legislation.

PHRs are also “logical representation of information regarding or relevant to the health of a subject of care”, however in the strictest sense these health records are primarily managed and controlled by the individual who is subject of care, or their authorised representative. The individual has rights over the clinical content held within a PHR, including the ability to delegate those rights to others, especially in the case of minors, the elderly or the disabled. The individual, or their authorised representative, is the key stake-holder determining that the content of the PHR is relevant and appropriate. Simplest examples include self-contained mobile phone applications that track a personal diet or exercise history – individual controlled and accessed only by the individual themselves.

However, in between these two strictest views of an EHR and a PHR is a continuum of person-centric health records with varying degrees of control, access and participation by the individual and their healthcare providers. 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. Conversely, at the other end of the continuum, 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 range of this continuum exist a growing plethora of person-centric health records that operate under collaborative models, combining content from individuals and healthcare providers 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 provider with specified permissions being granted to the other party.  For example a shared antenatal record may be either primarily a PHR, under auspice of the individual, permitting authorised health care providers to contribute content or directly edit part of all of the record itself, or it may be an extension of an organisations EHR, permitting the individual to view or directly contribute content to some or all of the record. The exact nature of the sharing of responsibilities and participations by each party needs to be specified in the terms and conditions of the health record.

Intent of health information with a PHR may be purely for use by the individual themselves or it may be used to share with healthcare providers and others, such as family members.

Ownership of the PHR can be complicated – requiring differentiation between moral ownership of the health information content and technical/legal stewardship for storing and securing the data. Storage of health information upon a PHR platform that is managed by a third party requires a formal relationship between the two parties so that individuals can assert their rights, as must the third party uphold their responsibilities.

The content scope for a PHR varies according to purpose, and is broader than most conventional EHRs. In the maximal scope a PHR may have a breadth that encompasses health, wellness, development, welfare and concerns; plus a chronological depth which embraces history of past events, actions and services; tracking and monitoring of current health or activities; and goals and plans for the future. Some PHRs will have a very general, summary focus; others may be activity-driven eg a diabetes management record within a Diabetes community portal or an personal fitness and exercise record. An individual may choose to have one single summary PHR or multiple activity driven PHRs, or a combination of both.

Acknowledgement: Prof Dipak Kalra, CHIME, University College London

Defining the PHR

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?

PHRs: still a powerful grassroots approach to eHealth

In 1999 four clinicians and an ex-CIO gathered around my kitchen table and week by week we hatched a plan for a Personal Health Record (PHR) which we hoped could revolutionise healthcare. At that time a PHR was not at all mainstream. Very few clinicians we spoke to thought it was a good idea at all. Many held a very paternalistic view that patients were not capable to handle their health information, and that a PHR would not ever be trusted as a useful resource (- for some reason a verbal a history was acceptable but a patient entered record of some sort was not)! Patients were also pretty passive and had to be convinced that they could be supported to manage their health information in a similar way that they managed their finances! In January 2000, those last heady days of the dot-com era we started development in earnest, then rode the rollercoaster and navigated the fallout of the dot-com crash. HotHealth was launched in November 2000. My clinical colleagues were still not very enthusiastic about the concept. The business model was not easy. Large companies, health insurers, hospitals, pharmaceutical companies - everyone could see how a PHR would be 'useful', but none would commit. The funding dried up and it/we were acquired by listed company in 2002.

In the US, there were a fair number of PHRs in 2000, maybe even as many as 50. DrKoop.com (now apparently HealthCentral) was the clear leader at the time; WebMD is probably the only significant one remaining. Our annual market research for competitors showed a huge turnover - PHRs were appearing and disappearing at a great rate!

But the evidence was starting to come in and support the concept - Kate Lorig's work at Stanford on supported self-management in arthritis was working well on paper and face-to-face. We applied some of these principles to HotHealth plus health summaries, prevention plans, wellness promotion, quality health information etc - the kinds of features we are used to seeing in PHRs now.

Well, HotHealth still exists and has had some modest success, mostly in the spin off of a PHR for older children and teenagers with insulin dependent diabetes which ran between 2003 and 2005 - Betterdiabetes - but it never blossomed as I had hoped. Was it the timing? Was it the business model? Was Australia too small a market. Yes to all of these, and much more - it was harder than we anticipated.

In 2005 I was asked to write a commentary in Australian Health Review - "The patient’s memory stick may complement electronic health records"(PDF of full text). Re-reading it now, I can't help but be disappointed that not a lot has really changed in terms of integration and data exchange between clinicians and patients. We have made some small progress, but I thought the revolution would have happened by now.

Amusingly I think that my final paragraph in that commentary, written back in September 2005, still stands true.

"A grassroots push by consumers wishing to hold, own and manage their own health information has the potential to make relatively quick, inexpensive and significant changes to the way healthcare is delivered, to support and encourage consumer input to their own health information record, and kick-start electronic health record development in Australia. And eventually when our individual PHRs evolve to amalgamate and integrate with the HealthConnect* implementation, we will all be beneficiaries of an integrated and interoperable health system, meeting the needs of all participants in a timely manner, and most importantly enhancing health outcomes, and minimising risk."

It's just been a longer journey that I first thought!

Reflecting today, I think that those four words in bold - "grassroots push by consumers" - are important. Health care consumers are now better educated and equipped than ever before to decide what it is that they want from eHealth. Let's complement the top-down national program approach with a powerful, bottom-up, consumer-driven kickstart to eHealth!

More than just requesting our data in a readable format, more than collecting a heap of printed pages or folders of pdfs, we should be requesting our data be in a format that we can do something with, data that we can actually re-use. Think of all the little bits of health information that have been created and left behind after each consultation with your family doctor and at each hospital visit. And of course don't forget your dentist and physio, your naturopath who also prescribes for you nor the doctor you saw only once while on holiday in some far off place. Think of what we could do with all that data; if we could only aggregate all of these snippets of information together. The PHR is the most likely place for our fragmented data to come together; the result being a broader, deeper and richer record than could be achieved by any one provider!

I still firmly believe that Personal Health Records have the potential to transform the way we deliver health care. It may take longer than we all anticipate but the PHR is a very powerful grassroots approach to eHealth. Be patient;-)

*HealthConnect was Australia's eHealth program at the time - now totally MIA and no evidence of it exists online!