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.