Disease Management & the Open Data Movement

In yesterday’s edition, the Disease Management Care Blog doffed a hat to Weng et. al and promised to tackle the implications of using disease management data bases for research. Here's a naive tackle for your consideration.

First off, note that biomedical “research” is any “systematic investigation designed to contribute to generalizable knowledge.” Pursuit of that knowledge is good. It makes life better for all of us and our children. What’s more, it doesn’t necessarily exclude a profit for the individuals assuming risk in sponsoring the research and taking the findings to market. That being said, the market does operate under a well described public interest that demands several attributes of research including 1) truth, 2) transparency 3) likelihood that the any benefit will become accessible by those who need it.

Even a cursory literature search using the terms “disease management” will yield up a host of studies with research findings that spell profit for the sponsoring companies. However, in my opinion, that’s a problem. While everyone knows classic not-for profit “academic” biomedical research is not free of its own problems, the published disease management literature has more than its fair share of incredulity from the market. The necessary attributes mentioned above are often lacking: many readers don’t believe the findings, criticize the underlying research methodologies and despair over its commercialized health insurer pedigree. There is an undeserved but real perception that pursuit of profits over populations is driving much of the conduct of disease management research.

So this blog has a partially thought-out proposal for the Disease Management Community :

Create or join the Open Data movement. Have courage and make the underlying important research data from any published studies or marketing materials freely available to everyone without restriction.

This is more than a doubling down of the NIH decision to “ask” its funded researchers to make their reports available on line. By becoming Open Data, the disease management industry would replicate and possibly exceed SHARe.

Naïve suggestion unlikely to ever see the light of day? You bet, but I offer up the following points that should mitigate some doubts about the wisdom of an Open Data paradigm:

• The doubts about the value of disease management are long standing and profound. This calls for a dramatic break-through approach.

• While the proprietary data have value, instances of that translating that value into a meaningful competitive advantage with a measurable ROI are few. Better to make the data available to researchers worldwide and build the next iterations of the industry on translational insights obtained in the public domain. The scientists out there are better at it anyway.
  

• The traditional research journals that have served as platforms for disseminating research findings have a short term problem and a long term problem:

• A) Over the short term, they have become part of the problem by allowing flawed research findings to get past their reviewers and editors. They are being out hustled by enterprising scientists who knowingly or unknowingly spin data and text. The market knows it.

• B) Over the long term, the arrival of change “Singularity” will not only make print media obsolete. In an online world, the authors’ interpretation of their research findings will no longer serve as the sole arbiter of truth. Instead it’ll only be the first. Given the ready availability of terrabyte data bases and easy to use analytic tools, the market is going to expect to take the data for its own test drive. I believe this will eventually include lay people but I note that SHARe is starting out by restricting access to qualified scientists. Better to anticipate this and start planning implementing now.

• Believe the mainstream academic journals are biased against disease management? See the point above.

• While disease management organizations and their share holders may fret over the possibility that their data could be used against them, a) the truth always seems to come out anyway and b) the industry is well established and is arguably not so vulnerable anymore. The "value chain" has become well established and will remain intact.

There may be implications for Regional Health Information Exchanges and on-line Personal Health Information platforms. Check out Vince Kuraitis’ astute discussions in his latest posts and feel free to add your thoughts about the fit of that piece in this big puzzle. The topic is also complicated by credentialing the scientists, protecting patient confidentiality, de-identifying the data, deciding which data to post, possibly getting an IRRB involved, being HIPAA compliant and extending legal protections to well-meaning researchers.

For your consideration. Kaiser didn’t necessary economically benefit on a short term basis from the study by Weng et al, but they got some great press. More importantly, they further established themselves as a public resource that exists to serve the interests of the common man thanks to their extensive data bases. The argument is true for Kaiser and more so for the disease management industry and is a real key to long term success.