Another milestone on the journey forward…

Over three years ago, we started on a journey -- to empower consumers with tools to help make better health decisions and drive better health outcomes. We believed that the simplest, easiest way to start was to give consumers their data in a secure and private way, and allow them to share it from provider to provider, keep it in one place over time, and learn about it in order to make better daily health decisions.  That simple idea was the beginning of HealthVault.

Back then, there were a lot of objections. Consumers don’t want their data. Consumers can’t understand their data. Their data might actually do them harm…blah…blah…blah…

But fortunately, things have shifted. Consumers have made it pretty clear that they want to be involved in their health – as evidenced by looking at social networking sites like PatientsLikeMe, the raw numbers of health Internet Searches, or research reports like The American Public on Health Care: The Missing Perspective , released by the CEG, Accenture and IOM:

· 78% of American favor giving doctors the ability to share access to their medical records if done with their permission.

· 66% said that they see the value in including their own information anonymously in a large database to help researchers.

And I’m happy to say for a number of reasons that consumer products like HealthVault and GoogleHealth continue to gain market traction.

Today marks another milestone – the first Industry-wide initiative to establish a “Declaration of Health Data rights” to support patients’ rights to access and share their own health information – https://healthdatarights.org will go live tonight, along with blog posts and endorsements from thought leaders and organizations across the country.

While we’re making change, and it's great to see so many organizations and thought leaders coming together, it’s important that we not stop here…that we continue to move forward—specifically by ensuring that consumer access to their data is included in the definition of “meaningful use.” While I’m optimistic about what I see -- what’s been laid out seems to focus on driving real outcomes improvement in the health care system -- we will not be successful without further refinements. Consumers cannot just be given access to data in static form, but must be provided with an electronic copy of their data so they can easily share it, use it, add to it -- creating a lifelong health data asset. In the end, consumers are the ones accountable for their own health.

Comments

• Anonymous
  January 01, 2003
  PingBack from http://articles.icmcc.org/2009/06/23/another-milestone-on-the-journey-forward%e2%80%a6/

• Anonymous
  June 23, 2009
  Allow me to point out that the ICMCC Foundation already formulated such a declaration in 2007, which is now on the desk of Dr. Chang (WHO). You can find this Guideline on Patient Record Access here: http://recordaccess.icmcc.org/category/WHO. Lodewijk Bos President ICMCC

• Anonymous
  June 29, 2009
  Peter - it does feel as though we're finally breaking through.  However, full consumer engagement will require more than just access to electronic health information.  We - the industry must step forward with innovative and engaging solutions that make managing one's health at least on the level of managing finances/wealth.  The combination of financial incentives/disincentives along with engaging applications that transform "information" into action - and ultimately positive long term behavior change - that must be the future of "health" care.

• Anonymous
  August 03, 2009
  ".  In the end, consumers are the ones accountable for their own health." and doctors are the gatekeepers who determine where we spend the money not consumers. I am guessing that Peter has never had a family member who has cancer or another serious illness and has never seen just how little control a consumer has over the care they receive or its costs. It is the providers who control this not consumers