Posts Tagged ‘patient advocate’

New Year’s Resolutions for E-patients

January 11th, 2012

By this point in January we are all wearing our Fitbits and logging our every mouthful into Lose It!, but beyond our own quantified self, what resolutions have we made to be better e-patient advocates?  I propose and have made the following 3 resolutions and ask that you join with me or share with me your own.

In 2012 I resolve to:

  1. Courageously and persistently share my e-patient advocacy with my own care team and institution to support (i.e. insist upon) their adoption of new technology and the workflow changes necessary to partner with engaged patients.  (The e-patient version of think global, act local.)
  2.  Improve my research literacy (more in next week’s post) – my facility with the terminology, methodologies, and mathematics required to converse with the scientific community and interpret medical information.
  3.   Schedule time to proactively mentor other emerging e-patients (as well as spend time with my e-patient mentors).  Congratulations to all on the Top 10 Healthcare Influencers to Follow List.

Here’s to you being not only more active in 2012, but more actively engaged!

Think of Joining the Society for Participatory Medicine. @S4PM

Please Vote!!! Patient Advocacy 2.0

August 11th, 2010

Please Vote!!! Patient Advocacy 2.0
I really wanted to call my presentation Patient Advocacy in 3-D. See why.

I am very excited to have the potential to speak at the 18th annual SXSW® Interactive Festival. This unique forum challenges you to envision the future of innovative technology. Featuring five days of compelling presentations from the brightest minds in emerging media and scores of exciting networking events hosted by industry leaders, SXSW Interactive offers an unbeatable line up of special programs showcasing the best new websites, digital projects, wireless applications, video games and startup ideas the community has to offer. From hands-on training to big-picture analysis, SXSW Interactive has become the place to preview of what is unfolding in the world of creative technology. Join us March 2011 for the panels, the parties, the 14th Annual Interactive Awards, SXSW ScreenBurn, the SXSW Trade Show, SXSW Accelerator and, of course, the inspirational experience that only SXSW can deliver.

My presentation would ask and answer: How can we make patient advocacy more like Avatar? Why would we want to?

Thinking about patient participation in healthcare as an immersive 3-D experience instead of a flat 2-D social media experience can transform personal and public advocacy on health and healthcare delivery issues. Patients as makers of healthcare policy, rather than just commenters on the gaps, flaws, and dysfunctions in policy is the next stage of patient advocacy evolution.

• How has the aggregation of patient voices in online communities created platforms for advocacy?
• What is the difference between personal and public advocacy?
• How can we translate online activism into actual policy and systems change?
• What are the barriers, internal and external, to translation of healthcare 2.0 to healthcare 3-D?
• What opportunities are there for patient advocates to influence policy?
Please vote and please join me (fingers crossed) next March in Austin, TX!

Patient Advocacy from the Inside Out

April 12th, 2010

The traditional view of patient advocacy is a group of patients in various stages of a condition – sick, well, wheelchaired, put your youngest and oldest members up front – storming Capitol Hill for photo ops on the steps and protesting outside an office and getting a perfunctory “we support research” from the junior staff before leaving. Surely some long-suffering well-connected heads of patient advocacy organizations and their hand-picked favorite patient are invited to testify at a hearing or opine on a bill as one of 100 in a room at a public session.

If we look closer, though, sometimes patient advocacy has a different look. Sometimes patient advocates are the policymakers themselves. Two recent experiences brought home to me the power of policymakers and key influencers sensitized by their own experiences with facing a life-threatening diagnosis, navigating a dysfunctional health system, and balancing an illness with work, family, and life.

The Honorable Hank Johnson, member of congress from Georgia’s 4th district, gave his support for the HR 3974, the Viral Hepatitis and Liver Cancer Control & Prevention Act at a press conference for the National Viral Hepatitis Roundtable after fighting his own battle with hepatitis C. Mr. Johnson discussed the impact of the legislation not only from an understanding of the statistics, as did his colleague Bill Cassidy, a practicing hepatologist in addition to representing his Louisianan constituency, but from his understanding of the stigma, fear, loss of identity, and perceived lack of productivity and potential.

My second experience in the same week came from a conversation with Billy Tauzin, the soon to retire head of the Pharmaceutical Research and Manufacturers of America. Mr. Tauzin, a former Republican and Democratic member of Congress and instrumental to the passage of Medicare Part D’s drug benefit is credited often as a savvy politician and negotiator. I appreciate how he has put patients’ voices and experiences, including his own, front and center, better connecting the products that the industry produces to the lives they save that anyone else. And he carries this voice and message to places – high-stakes formal and informal negotiations — where it truly matters. His advocacy has an authenticity money cannot buy having originated in a hospital bed, with a dire diagnosis and a medication that restored him to health.

This is not a plea for emotion-based legislation or for everyone to tout their own personal interest above what’s best for the country, but if policymakers are expected to bring their experiences in banking, business, and law to bear on their work, why shouldn’t they bring their experience as patients. While I wish every member of congress good health, I hope that if they do have personal experience with the healthcare system that they channel that into making and supporting relevant, reality-based healthcare policy.

Are Patients the New Black People?

February 19th, 2010

I had a call this morning with the head of a huge initiative in healthcare that invited the patient perspective into the process in the fourth year of the effort, despite the prominence of the term patient-centered in their name.  One of the reasons was that, “patients were hard to find”.  Now I know what she meant – she wanted patients who were able to speak beyond the specifics of their personal experience and had the professional skills and demeanor to go toe to toe with physicians, hospitals, and other business executives.  She wanted qualified patients.

I had a sense of déjà vu.  This felt to me much like the corporate recruiter lamenting that qualified Black candidates were so hard to find.   They then proceed to use the same handful for all board positions or job openings.  Now I see both educated, talented African Americans and articulate patient advocates everywhere I go ( not necessarily in the same places) so I thought I could use the same techniques to offer them to the corporate and policymaking worlds.

The best way to find qualified Black candidates is to (1) ask current Black executives to recommend some and (2) go where African Americans congregate.  Likewise, it seems the way to identify and attract patients willing to speak and serve on behalf of other patients is to (1) ask active patient advocates (and I don’t just mean the CEOs of patient advocacy organizations who may be excellent professional association managers, but may not be able to articulate the visceral experience of someone living with or having survived a condition) and (2) go where patients go – hospitals, doctors offices, and yes, online.

So I’m asking you.  Are you in?  Will you step up yourself or pass this message along to others you know who may be appropriate?  Please send your name and bio or resume to me at if you’d like to be part of the Patient’s Bureau I’m creating to serve as a referral source to conference planners, policy committees, and government agencies so no one can ever again have an excuse not to include the patient perspective.  I’ll also do a follow up post listing those names I am permitted to name so word gets out.

Thank you!