The Children’s Hospital Informatics Program (CHIP), developers of Indivo, hosted PCHRI 2007, an invitation only conference over the last two days. The event brought together about 100 leading players in the Personal Health Record (PHR) market to discuss where the market is today, what challenges lie ahead, and what we might see in the future.

Over the past year the PHR market has certainly seen a significant pick-up in activity. Microsoft rolled out HealthVault, the big employer-led Dossia initiative adopted the Indivo platform, Kaiser-Permanente released their PHR to its 8.5 million members, Aetna released a hosted PHR and let us not forget Google, who has yet to release anything but continues to generate a lot of buzz in the market. Given this backdrop, the PCHRI conference was full of updates, announcements, outlines of strategies (Dossia in particular which I’ll do a separate post on), and discussions on what is needed to move the PHR ball further forward in 2008. Following are some highlights.

Personal Health System
Discussion is moving beyond just what a PHR is to what a Personal Health System (PHS) may look like. This is being driven in large part by the actions of Microsoft and Dossia who are both looking to provide a personal health platform (PHP) upon which a wide variety of applications may sit, including PHRs. As a corollary to this, Aetna said it will allow users of its PHR to move their records/data into HealthVault or Dossia and New York Presbyterian and CapMed are currently working with Microsoft to insure interoperability between their PHRs and HealthVault.

Role of Standards
Standards are not perceived as a problem for PHRs. There are plenty out there in the market today, the PHR community simply needs to agree on one and move forward. Ah, but therein lies the trick – getting them all to agree. This point will become irrelevant as the PHP players define the standards for their platforms. And for those platforms, Open Source is not important, but Open Standards and Open APIs (application programming interfaces) are critical.

Regulations & Policies
Virtually unanimous agreement that this market is too immature for any strict, prescriptive policies or regulations. Rather, participants saw a need for a light policy framework to provide the market with the flexibility needed to try new approaches and value propositions to meet consumer needs while still providing some government oversight.

Elephants
A couple of elephants remain in the room, one quite visible, the second less so. The visible elephant is privacy as this remains the number one issue for consumers. What Aetna found, however, in their focus groups is that once consumers started using the PHR, their privacy concerns diminished. Another interesting revelation is that consumers are quite willing to relinquish privacy concerns, via voluntary disclosure, if they thought that it would contribute to a greater common good. This finding came from the folks at PatientsLikeMe who stated that among their members, over 70% have volunteered information about themselves on the site that is index-able and searchable by Google. (Today’s WSJ Health Blog also released some interesting survey findings on this issue.)

Despite these positive privacy trends it was clear that the PHR industry as a whole has not done a thing to allay consumer privacy concerns and current privacy policies remain confusing, fragmented and all too often misleading. As with the comment above on standards, hopefully the future platform/system plays in the personal health market will drive a higher level of privacy policy standardization and compliance.

The invisible elephant is the lack of digital data and when it is available, delivering it to consumers in a format and context that they can readily understand and take action upon. Widespread agreement that a model that relies on the consumer to manually populate a PHR with data will not see broad adoption (ironically, this is what is most commonly found today among untethered PHRs). Therefore, automating this process is critical. SharedHealth, the Tennessee Health Information Exchange (HIE) did a demonstration project for CMS earlier this year moving large EMR data sets to a PHR. The biggest challenge (manually intensive and expensive) was converting EMR data into terms the consumer will understand within their PHR. This elephant will be in the room for quite some time as there were no easy answers presented at this conference as to how to address this issue.

Data Usage
There are quite a few stakeholders circling the PHR market hoping to get access to this potentially rich treasure trove of data. The pharmaceutical industry is looking to access this data to perform a wide variety of research tasks from identifying potential candidates for clinical trials to finding genetic markers for diseases in new drug development. Amgen stated that they have been attempting to use de-identified EMR data for oncology research but are finding it arduous and expensive. Amgen reflected on a breast cancer research program where they found that the critical data fields of interest in the EMR data sets were filled out only 20% of the time and that does not account for “dirty” data. Ultimately this was a worthless endeavor for them. Amgen sees strong potential in the PHR market for providing such data and openly stated it is willing to invest to make it happen.

And it is not only the private sector looking to get its hands on PHR data – Uncle Sam wants it as well. The Center for Disease Control (CDC) for example is interested in gaining access to provide them with a better picture of population health and bio-surveillance.

As this event was focused on Personally Controlled Health Record, there was general agreement that such data sharing was acceptable provided that the PHR solution offered sufficient granularity to allow the consumer to selectively share data (most PHRs today do not) and that it was up to the consumer to decide whether or not to share such data, not the PHR provider.

Going in the opposite direction was PatientsLikeMe. They stated that they have every intention of sharing their customers’ data with pharmaceutical companies – as it is core to their revenue/business model. They believe that pharmaceutical companies are in the best position to help those on PatientsLikeMe with new drug therapies and thus should be welcomed, not spurned. Of course, many at the event who come from the physician side of the fence looked at this idea with a jaundiced eye.

Some Final Data Points

• Aetna’s PHR, which was released on Feb 14, 2007 now has over 800,000 users. Strongest adoption is among chronic care patients.
• The Veteran’s Administration’s PHR now has over 500,000 users.
• CapMed has over 600,000 of its PHR in the market today.
• WebMD is supporting over 200 private PHR portals for payers and employers.
• Dossia is on track with roll-out to early adopters by end of 2007.
• Of the 39 BC/BS plans nationwide, 67% have gone live with a PHR or will do so in the near future.

There is always an afterglow coming from one of these conferences and this one is no different. Beyond the glow though, it is hard to argue that PHRs are still a technology not yet ready for prime time. This is clearly changing and quite rapidly. No longer does this market resemble Sisyphus slowly rolling a ball up a hill. This ball is starting to roll down and is picking up momentum. That’s not to say it won’t hit some speed bumps along the way, but if 2007 is any harbinger, 2008 will be an even more dynamic year for the PHR market.