Oct 21, 2012

Patient data intermediaries

Patient data is a key data source that can give more insight by discovering correlations between various parameters.  Examples could be:
- Disease - Treatment - Outcome
- Patient profile - Disease - Treatment - Outcome
- Environment - Disease
- Lifestyle - Disease
- Disease - Lifestyle - Outcome
and many more...
Getting access to Patient data is the key target for many companies.
New intermediaries build platforms to collect Patient data and to make it available to 3rd parties.  Patient data is no longer that data that is used only by the physician.  It is becoming a key asset for multiple players in the health ecosystem.  This transformation is already happening...

The trigger for this article was that today I watched a recorded presentation on TED by John Wilbanks : you can see it here : john_wilbanks on TED.
Fundamentally, this presenation is a call for people to share there personal health data for the benefit of the community.  It is clear that -through such data- research could gain insight in disease and treatments, and use that insight in the development of new treatments, to the benefit of the patients,being all of us.

While I believe that this is truly important, I am wondering about the need for informed consent provided that anonymity is guaranteed and I looked at some companies who are already collecting Patient data.

Here are a few examples:

Their privacy statement that a physician has to agree with in order to be able to make use of their free EMR cloud application, includes this statement : "Aggregate your health information with that of other users, and share aggregated information in accordance with applicable state and federal law.".
Please note that practicefusion is getting patient medical records through the physicians who sign up for their free eMR solution.  Patients probably don't even know their medical records -without their personal identifiable information -can be sold to 3rd parties.

This is what you can read in their privacy statement:
"If you do not give consent for your Genetic and Self-Reported Information to be used in 23andWe Research, we may still use your Genetic and/or Self-Reported Information for R&D purposes as described above, which may include disclosure of Aggregated Genetic and Self-Reported Information to third-party non-profit and/or commercial research partners who will not publish that information in a peer-reviewed scientific journal."
23 and me recently announced an API they make available to 3rd party developers to access people's data.  Obviously, here consent of the individual is required.  For more details on this API, click here :23andme API
Here is the wording about the consent needed by the 3rd party: "...you must clearly, conspicuously and accurately describe the data you are requesting to collect from end users (such as PII, login information and 23andMe account data) and specifically how you will use and share such information with 23andMe and third parties."

And here is a quote from Patientslikeme:
"Members should expect that every piece of information they submit (even if it is not currently displayed), except for Restricted Data, may be shared with the community, other patients, and Partners. "

It is clear that all of these sites are looking at patient data as their real asset to monetize, yet, they do not require explicit consent to monetize such data as long as they sell this data without personal identifiable data going with it.

And how are these companies doing?  I can't answer this in a very fundamental way as I have only looked at Google trends to compare how they do in terms of searches on the internet.

I was a little bit surprised to see that 23andme is head and shoulders above the others, especially considering that people need to pay for the service.  What this tells me is that 23andme offers something of high perceived value to the people.  Interesting also to realize that Google (yes that company that wants to know everything about us) and Johnson and Johnson are amongst the investors in 23andme.

Which other companies are important to note when it comes to having business models which are based on inter-mediating between Patient data collectors and 3rd parties that want to make use of such Patient data?