Where to share your health data

Recently National Public Radio  filed a story about researchers launching an innovative study to determine if ALS patients benefit from the dietary supplement, lunasin. Instead of a lengthy study, costing millions of dollars, the researchers are part of an active online patient community-PatientsLikeMe.

The study they came up with dispensed with many of the standard features of research that make it so expensive, time-consuming and often so hard to recruit patients:

• There's no comparison group taking a placebo; instead the researchers match each patient with three to five people whose disease was on a similar course.

• The researchers could skip safety testing because the supplement is already on the market.

• Most important, they aren't looking for subtle effects, like slower disease progression. That may be vital for a pharmaceutical company seeking approval for a new drug, but isn't necessarily what patients want.

What the article doesn’t mention is that PatientsLikeMe  has been actively involved in research for years. To learn more, download the complete collection of research posters as of Feb. 2016 

Research shows positive outcomes (e.g. new treatments) when health data is shared, particularly when it’s patient driven. Give Up Your Data to Cure Diseases and The Cure For Cancer is Data: Mountains of Data are two examples of the many articles on this topic.

Without belaboring the point, the ability to pool lots of patient information together helps to identify trends, what works, what doesn’t and even what meds that are already on the market that can be used to treat other conditions. Patient driven sites, as demonstrated in the study above, are seeking to address patient concerns and therefore ask questions they want the answers to.

So how can you help to move a step closer to a cure by sharing your data? 

Consider the following:

• Talk to your medical provider about what they would recommend as the best places for data sharing. Have a similar conversation with the local chapter of the condition specific organization (e.g. American Cancer Society)  that is relevant to you.

• Check out Being an E Patient

• Check out the following sites:

- ACOR Association of Cancer Online Resources 

- PatientsLikeMe 

- MyLymeData 

- Shares for Cures:  Part of the new White House Cancer Moonshot,  the SHARE For Cures’ Mission is to empower you to use your health data to advance medical research and save lives. 

• Sync for Science: Helping patients share EHR (electronic health record) data with researchers, S4S is a collaboration among researchers (Harvard Medical School Department of Biomedical Informatics), electronic health record vendors (Allscripts, athenahealth, Cerner, drchrono, eClinicalWorks, Epic, McKesson), and the United States federal government (Office of the National Coordinator for Health IT, Office of Science and Technology Policy, and National Institutes of Health).