On May 14, PVI founder Pat Mastors closed the Health 2.0 “HX Refactored” conference by announcing PVI. See the hxr2014 Twitter archive here.
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As regular readers know, I’ve been running a series called Speaker Academy, to share with other patients some of my methods as a voice of the patient. I do this because
- The audience for patient voices has expanded dramatically in the past few years. Conferences and policy meetings need more patient voices.
- Medicine (the profession and the policy world) need to hear from more diverse voices
- Hundreds, if not thousands, of patients and family want to be effective voices in fixing or transforming healthcare. But wanting to do something is a far cry from being effective at it. We need to develop professional skills among patient voices.
And that’s what’s behind the launch today of the new Patient Voice Institute, “gathering and sharing the wisdom of patients.” Check out the rich set of information on the website.
This is a logical next step, a maturing of, the excellent Patients Included initiative started by @LucienEngelen at Radboud University Medical Center in the Netherlands. He’s the crazy Dutch innovator who produced the TEDx conference where I and many other patients gave speeches.
“Never forget that a small group of
thoughtful, committed people
can change the world. Indeed,
it’s the only thing that has.” – MargaretMead
Conceived and brought to life in just a few months by Pat Mastors and Diane Stollenwerk, with copious work by Diane’s colleague Emily Henry, PVI intends to bring professionalism and a reliable brand to the world of incorporating patient voices in medical work.
PVI has my full-throated support and endorsement. Pat, Diane and Emily are joined by these board members:
- Alicia Cole @MizCole2U
- Regina Holliday @ReginaHolliday
- Libby Hoy, founder of @PFCCPartners
- Jean Rexford @JeanRexford
- Patty Skolnik @SkolnikPatty, founder of Citizens for Patient Safety
Much work remains to be done, to develop the resources and training that will make this vision a reality. More later – for now, please spread the word. And read the list of advisors on the website, and everything else on the site!
Dave, thank you for this excellent piece, and your excitement for and support of this group endeavor! It’s our aim with PVI to ensure EVERY forward-thinking, solutions-oriented patient and/or advocate, reads the website and feels there is a place for them AND their voice. Training and professional development for speakers is, of course, an important component of that, but we also want to harness stories, best practices…all the wisdom and experiences of patients and families. We need ALL of us extending our best efforts. PVI won’t try to re-invent any wheels; we plan to support the “wheels” already in place, with infrastructure and organization, building a new community with a culture of inclusion and collaboration.
Hoping all goes well at 5:30 today. Thanks again for the shout-out!