Guest post by SPM member Francie Grace.

Here’s a last minute Important item for your Monday To Do list. Spotted in a reminder tweet Friday from former U.S. Chief Data Scientist D.J. Patil (@dpatil):

https://platform.twitter.com/widgets.js

Patients and the public at large are among those being asked to comment on a pathfinding blueprint for how health data should be handled — an issue close to our hearts (and every other body part, for that matter).

Apologies for the super-short notice, but this is an important chance for all of us to comment, however briefly, on the National Institutes for Health strategic plan for how to create, use, re-use, allow access to, and protect the vast amounts of health data now being created every minute of every day.

The deadline to fill out the government comment form is “by April 2” [11:59 pm ET] so please take a few minutes to read the NIH plan (it’s in reasonably plain English, don’t be intimidated), and get your e-patient views on the record where you can help move the world forward:

A brief glance suggests …

  • it would be useful for the draft NIH document to add specific language about mechanisms for patients, scientists and healthcare providers to flag errors for timely correction.
  • I also think there should be language stating that there will be patient representatives on the policy-making data usage committees.
  • And it’d be great to see something about getting the latest information into the hands of patients and clinicians much, much faster (instead of the notorious 17-year gap now standing between research insights and information available to MDs and patients making decisions about treatments and prevention).

Any other suggestions? We know SPMers have great ideas, so please find time to take a look and add yours. The way we collect, compile, analyze, protect, disseminate, store, correct, use and reuse data is going to absolutely define us and our world, so please let your voices be heard.

 

 

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