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Monday, May 21, 2012

Who Should Represent Patients?

One of the challenges I always have with patient representation in national initiatives is that most organizations that claim to represent patients don't seem to represent me very well.  That's one reason why I was thrilled when Lygeia Ricciardi was named to the (self-proclaimed) role of Consumerista at ONC, because she had the chops, but was also independent of organizational influences.

The challenge for me is that many self-anointed patient/consumer advocacy organizations really don't advocate for what I want.
  • I'm not a privacy advocate.  While concerned about privacy, I'm not fanatical about it, and I'm probably more well-informed about the risks and dangers than most folks.
  • I'm not retired (or even close).
  • There's a lot of other categories that I just don't fit.
Recently, the GAO announced an opening for a patient/consumer advocate on the HIT Policy Committee. Today, I saw this blog post by Andy Oram on O'Reilly Radar: Putting the Patient Back into Healthcare recommending Regina Holliday for the position.  I couldn't have said it better than Andy did.

I confirmed today via telephone that letters of recommendation can be sent via e-mail to

To make life simpler, I've written simplified letter of recommendation which you can send (or edit and send) with a few button clicks.  I strongly recommend customization.  My own letter in support of Regina for this position was similar to what you see below.

-- Keith

P.S. As always, the opinions on this blog represent my own, and not those of my employer or any other organization I might represent.

Update a few short minutes after I posted this:
Ted Eytan submitted a similar letter.
ePatientDave is also willing to serve in that role, and is seeking support (you can STILL use the button below and just alter the text in the body to show your support for Dave).  Either way, patients win!

Click here to open the text below in your e-mail application:

Government Accountability Office
441 G Street NW.
Washington, DC 20548

Dear Sirs and Madams:

I am writing in support of Regina Holliday as a patient advocate on the HIT Policy Committee.  Regina has heard, painted and told hundreds of patient stories and would be an excellent independent voice for patients on the HIT Policy Committee.



  1. Let's go further and recommend both, and more. Given the importance of HIT Policy to those who get medical care -- that is, almost everyone -- a majority of the committee should represent the many diverse patient interests, not just a single voice.

    1. There are three patient advocate representative slots, but only one of them is currently open. There are 20 members.

  2. Thanks for the praise for my posting, Keith. And nice job boiling down the issue to something anybody who cares about their treatment can do. I've tweeted it...