Up at 5AM: The 5AM Solutions Blog

Share and Share Alike - Is It Simpler To Get Kids, Scientists, or Patients to Share?

Posted on Thu, May 12, 2011 @ 01:27 PM

Here at 5AM, we think a lot about trying to connect people with their health information – be it uniting a patient with her own records, or easing the exchange of information among and between doctors, or connecting researchers with genomic and clinical data to accelerate discovery. We think and work on meaningful use, and so-called health IT, and healthcare reform, bringing science and medicine closer (whether you call it translational research or bed-to-bedside), and we've got a lot of company – there’s a lot of recent attention and investment in these things.

Amidst all the policy and technical concerns (both of which can sometimes be considerable), there remains a fundamental problem – sometimes people don’t want to be connected with health information – they don’t want to share it, and they don’t want to receive it either.

Here’s an example on my mind lately, one that covers several overlapping topics. As we’re supporting a client in putting up a web app that will share clinical study information (including genomic data) with researchers, we’re helping our client deal with PHI issues that occur where the rubber meets the road. If researchers are interested in general survival rates, how can this information be displayed in a way that doesn’t reveal PHI? If we’re sharing array data with researchers, how do we construct an appropriate consent form for patients in our clinical study, with an equally appropriate data usage form for the researchers using the data? If we believe that sharing information helps speed results, how do we encourage people to give openly and take (or receive) with care?

For this group, it comes down to two basic questions.

1. How do we protect patients and still encourage them to provide information for the greater good? People share personal information – and personal health information – widely on social networks. We can and do share our weight on Twitter, training mileage on Facebook, blood pressure results on MySpace (well, not really). Personal Genome Project participants are letting it all hang out, genomically-speaking. Balancing openness with respect for the meaning of personal health information is tricky, and expressing complex concepts takes time and care – especially when our tolerance and perception of complex concepts like “personal” are changing frequently. “Express yourself” is the tack this client will take – they’ll express the details, risks, and benefits to their patients in several different ways, believing that through thoughtful education, their patients will opt to share information to support the research effort – with resulting treatments that may help the patients themselves.

2. How do we enable sharing openly – how do we encourage our researchers to share? This client, a research funder, can make sharing a requirement of each study it funds. The NIH, and especially the NCI through its caBIG® program, struggles to provide tools and a guiding spirit of sharing, using both carrots and sticks, to some good success. But outside that forum, the caveat that data supporting scientific papers “should be shared” is, frankly, weak. As Andrew Vickers, Associate Attending Research Methodologist at Memorial Sloan-Kettering, puts it, “The only way to overcome scientists’ reluctance [to share data] would be for journals to refuse to publish research papers unless they could confirm that the raw data were available somewhere (e.g. a repository).” You may recall Vickers from his thought-provoking (incendiary?) opinion piece in the New York Times, “Cancer Data? Sorry, Can’t Have It.” That piece was published in 2008. Have attitudes changed, or are we still clinging to our data – and is that to our collective detriment?

And while it’s easy to praise patients who share data as altruists with the greater good in mind, and condemn researchers who horde their data as selfish hoarders, how do we measure the violation of a person’s health privacy, or the violation of another person’s discovery? After all, patients stand to benefit from their sharing, and researchers do share their results, so our judgments take place in the grey world.

Our society both honors and demonizes selfishness while it diefies and dismisses altruism - we're all living in the grey. At 5AM, we work to provide technologies that can make safe access of health information simpler, so we’ve obviously got a corporate bias toward openness. As a PGP applicant, I obviously lean in the open direction too, but I understand those who are reluctant or scared of that kind of broad sharing. And the ironist in me likes to think of a day when a scientist does discover the “selfish gene,” but is unable to share the data because the affected cohort (unsurprisingly) didn’t check the box on the consent form that would allow sharing of their data.

Write to me (lpower at) and let me know your thoughts on the matter - I'll do a follow-up post with your responses.

Also, check out the Scientific Data Sharing Project, which posted the Vickers interview quoted above.

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