Don't give up on the Personal Health Record

In just a few days HealthCampBoston takes place (Tuesday April 21, 2009). This is happening in conjunction with SocialPharmer at the New England Research and Development campus of Microsoft. This is set to be a massive event and a great pre-cursor to Health 2.0 Meets Ix on April 22-23.

Over one hundred people have signed up for the HealthCampBoston-SocialPharmer event.

In the prelude to this e-Patient Dave's experience in importing his medical claims records to Google Health got picked up by the Boston Globe. This has sparked a fascinating debate. You need to read Dave's post.

At the recent Web 2.0 Expo I had time to sit with Jay Parkinson MD and he also ended up commenting on e-Patient Dave's experience. Jay penned a powerful analysis in the Business Insider of what Dave had written about. John Grohol at e-patients.net described Jay's assessment as "Hitting one out of the park". However, I don't share Jay's conclusion.

Google Health and Microsoft HealthVault are still in the early stages of their evolution. I don't think it is time to give up on the idea. Indeed I think it just serves to confirm that we have to put the patient at the centre of the system and not bet on the Health Care Industry successfully building Electronic Medical Records and Health Information Exchanges in order to efficiently move garbage data about as around the industry outside of our purview.

If we can't trust claims information let's at least focus in on the information we can believe.

How about the medications we are taking, which could be pulled from our prescription records. This is an area where accurate data might actually save our life by avoiding damaging drug interactions.

The moves that the Continua Alliance is taking and Microsoft's device standards for HealthVault are a push in the right direction. I believe consumer accessible telemedicine devices are the next consumer wave. The data these devices collect belongs in our Personal Health Records where we can choose who we want to share that information with.

So Google, Microsoft and Dossia - Don't get dispirited. There will be bumps in the road. Let's tackle the simple stuff first and get value from collecting and sharing basic vital sign, prescription information and family history data that could prove of value to the medical community.

Keeping an open data approach to PHR's will provide the basic for a flourishing ecosystem that will be able to increasingly make sense of the complex data that will eventually feed from EMRs inside the health care industry.

If anything e-Patient Dave and Jay Parkinson's commentary just serves to underline the enormous benefits that are there to be grasped if we put the PHR and the consumer - us - at the center of the Health Care puzzle. The consumer/patient is the one common denominator. Patient Self-Management is not knew and it yields real, positive results. It is just that up to now we, the patients, have been working in the dark with snippets of information of uncertain value.

Rising medical costs are going to drive active consumer engagement and this is going to lead to more patient self-management not less. To my mind this means that the EMRs and Health Information Exchanges that are being planned in order to grab a piece of stimulus cash will be handling an ever smaller part of the patient management puzzle. Outside of chronic disease management, an increasing proportion of health management information is going to be managed outside of these EMR platforms. If the industry doesn't recognize the potential value of the un-tethered PHR then they will be faced with the prospect of operating with less and less of a full picture about the patient. That potentially leads us down a path of practicing more, not less, defensive medicine which will continue to drive medical spending higher.

The patient is at the center of this puzzle.

We are the common denominator.

To the Health Care Industry - Get over it! Give us, the consumers/patients, the tools to help us help ourselves. After all we are the ones that spend 100% of the time living with our diseases and ailments.

Join the discussion in Boston

If you are in the Boston area on Tuesday and are interested in this topic - come along to HealthCampBoston. you can grab a ticket by clicking the link below.

If you can't make it then check out this blog. We will be running CoverItLive to track the action from the day's events. If you are on Twitter, or other social networking sites then follow the #HCBos tag to keep tuned in.