Gimme My Damn Data Win – Labs; Will Clinical Trials Be Next

It’s been really interesting over the past few years to watch the discussion about who should get data and when should they get it (see ePatient Dave post).  Lab data has been the perfect case study. 

In the traditional model:

  • We (consumers/members/patients) go to a physician who writes up a lab order.
  • The physician may draw the blood or send you to a hospital lab or you might go to a LabCorp or Quest facility.
  • The lab values are returned to your physician.
  • You may or may not ever hear about your results especially if they’re normal.

This traditional model begs two questions:

  1. What should you do to get access to the results? (see Trisha Torrey post on this)
  2. If the physician doesn’t have time to get to them and call you, should you get them directly? (see KevinMD post on this)

Fortunately, HHS made a decision last month to require lab data be available to patients directly without the physician gatekeeper.  Of course, they have 30-days to comply with the patient request, and it still requires the patient to request it.  But, it’s a start. 

This is like the Open Notes project that made physician notes available to patients. 

“They found that when patients have access to their doctors’ notes, they feel more in control of their health care, better understand their medical issues, and report they are more likely to take their medications as prescribed.”

As we think about patient engagement, this type of transparency is important. 

The next area of discussion might be around clinical trials.  The people over at PatientsLikeMe just published an article discussing this topic and sharing how patients are working around clinical trials to identify themselves.  I’m sure that most pharma companies and clinical trial companies will view this as heresy.  But, it’s a modern day reality in terms of mobile and social technology.  The question is how will this change clinical trials and will it improve results. 

I certainly think that the data coming out of P2P (peer-to-peer) companies like PatientsLikeMe or CureTogether is really interesting. 

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