The Patient Speakers: More Than a Fly in The Ointment

This week I spent hours on the phone with some of the great minds working within patient advocacy.  I asked them a series of 17 questions.   Designed by the wonderful staff at TMIT (Texas Medical Institute of Technology), these questions are helping to create the nuts and bolts of an online vetted registry of Patient Speakers at a regional, national and international level.

In the midst of this process, I received a twitter mention from @cascadia also known as Sherry Reynolds.  She lead me to an article on the Health Affairs blog entitled:

Patient Advocates: Flies In The Ointment Of Evidence-Based Care ...

by Jessie Gruman.  I must admit I was rather taken aback as I follow Jesse on Twitter and she has always supported patient empowerment in the past.  Jessie Gruman is the president and founder of the Center for Advancing Health.  Its mission statement is: "CFAH conducts research, communicates findings and advocates for policies that support everyone’s ability to benefit from advances in health science."

So, I was feeling rather stabbed in the back by being called a fly, and not just a fly, but also a dead one spoiling a perfectly good ointment.  Jessie had decided to use a slightly incendiary tone in order to promote debate.  For within her post discussing the testimony of patients before the Food and Drug Administration regarding the drug Avastin, was a critique of the power of the individual patient voice in relation to the combined power of evidence based medicine and governmental regulation.  

The patient voice can be a very powerful tool.  Some may see a patient speaker as a Mayfly: here today and gone tomorrow.  They may see us as the current tale of sorrow to be trotted upon the stage and then fall into obscurity.  Or perhaps we are viewed as the buzzing fly.  The persistent drone of patient advocate babble in the background at a meeting or at a conference, not important just a nuisance.  But what does it mean to be called a fly in the ointment?  Well, that’s Biblical.   That means we have disturbed and defiled the sacred anointed oil of medicine with a corpse.

And then I realized the true power Jesse’s title. 

For my fly is Fred, and Helen Haskell’s fly is Lewis, and May Ellen Mannix‘s fly is James, and Leslie Boyd's fly is Mike and we are disturbing the ointment.  We fly throughout the nation as patient speakers trying to change the status quo from a profit-driven model of care to a patient-centered model of care.   And we form a powerful group, that combined can support evidence based medicine by aggregating our shared stories.

But before you can use our knowledge, you must be able to find us.  And once you are able to find us we must be paid based upon our experience, depth knowledge and quality of our speech.

This is a concern Dave DeBronkart, other wise known as e-Patient Dave, has been writing about since January of 2009.  

The New Life of e-Patient Dave: A Call for a Patients Speakers Bureau

That is the reason we are creating a Patient Speakers Bureau.  The decision to create such a resource was made after a conversation I had with TMIT CEO Charles Denham, MD.  He asked me what did I see as a necessary next step in patient advocacy.  I told him we needed a patient speakers bureau.  In the patient advocacy community we have been talking about this need for a number of years.  My frustration at the lack of such a resource reached its pinnacle as I did dishes one Saturday.  I received a phone call from CMS (Centers for Medicaid/Medicare Services) asking which speakers would I recommend for an event in Texas.  I was in my kitchen in Washington, DC doing dishes as my five year old played with toys upon the floor, and I was the resource for CMS to find a speaker in Texas.

I thought there must be a better way.

I knew there were amazing people throughout the country who could speak on a host of patient advocacy topics and do so from the perspective of a patient.   I knew some of them.  And Dave De Bronkart knew some of them.  And Trisha Torrey knew some of them.  And Charles Denham knew some of them.  If you knew Dave, Trisha, Chuck or Me, you could ask us for our lists.  But that is very cumbersome and it feels like we are constantly re-inventing the wheel.  The beauty of an internet resource is that it advocates 24 hours a day.  And try as hard we can to keep going, human advocates must sleep.

Clean and Simple Web Design

I asked the advocates what websites did they use and what feature was the most important.  By far and wide, the advocates were focused on a using a good search function.  They also loved data filtering and aggregation.  They thought the ability to have communication within a community was important as well.

If you have a cause you must be on Twitter.

Which social media sites do patient advocates use?  They listed Facebook, Twitter, Linkedin, Meet-Up, Slideshare, Google +, Blogger, Wordpress and Posterous as important tools in the patient advocate toolbox.  Unlike many speaker bureaus, we are focusing on promoting the speaker with a well-rounded advocacy platform.  The speech is not an end unto itself, but instead a beginning.  Most of these speakers blog and have an astute command of social media that will allow the concepts of the conference echo for weeks, months and years on the world wide web.  Indeed, hiring a speaker from those listed on this portal can increase the digital footprint of a facility often faster than is possible with their in-house social media team.

“I am one person.”

One of the benefits I often attribute to hiring a patient speaker or inviting them to attend a meeting, is the benefit of the one-person view.  Often organizations become so multifaceted and constrained by the will of the group they become handicapped in their ability to present the individual patient view.  I found it very interesting that many of the advocates I interviewed present themselves across every social media platform as themselves, seamlessly blending professional and personal lives.  The only exception was Facebook .  In about half of those interviewed they said their Facebook usage was more for friends and family with far less professional messaging.

I do not look for them; they find me.

I asked the speakers if any of them had experience with other speaker bureaus.  Most responded that they had little experience with such sites.  Some had visited the Washington Speakers Bureau, NAMI, Alzheimer’s Association and SpeakerGram.  Most of the advocates had never used such sites and relied exclusively on word of mouth to promote their speaking advocacy.

If we build it, will they learn?

I asked about any thoughts the advocates had on continuing education on patient topics and in patient speaking.  I also asked in what format should we teach such topics.  The advocate pool said text based information was a must, interspersed short video and audio clips.  They also said a webinar element both live and archived was important.  The stressed the need for small group interaction and self-directed learning.

We also queried the groups about two planned courses: “A Crash Course in n Public Speaking” and “Narrowing your Speaker Topic.”   Those surveyed said they would be very interested in such courses and would like other concepts as well.  They were interested in learning about their audiences, understanding national patient advocacy strategy, and wanted to see great speeches.  Requests were made to learn how to better harness presentation tools like Power Point, Keynote, and Prezzi.   Most responders thought a best speeches segment and  “What not to do" presented in a short video format would be well received.

Now Playing in Theaters Near You

We wanted to get a gauge on which organizations were currently inviting patient speakers and found out that there was a wide range of venues.  Many of the advocates had spoken before RWJ Foundation, IHI, HIMSS, HealthCamp, and Health 2.0.  They had spoken before hospitals, Quality Care Organizations, Beacon Communities, Legislatures, White House Initiatives, Medical Insurers, Therapy Groups, Medical Schools, Data Users Groups, Social Service Agencies, Venders and Medical Conferences.

Patient speakers were beginning to show up at many venues.  And like any good fly on the wall they were listening for more opportunities to spread the word, often handing out piles of business cards at each engagement.  They also were utilizing their social media contacts to disseminate the information gathered at each venue to spread across the many silos of thought and culture.

From Honoraria to Invoicing for Oratory

As patient advocates are viewed as more than a one-off story, their stature changes to that of a professional patient speaker.  Within this transition, a speaker goes from speaking without recompense, to speaking while receiving honoraria, to a point that their participation has become so valuable that they are working under a speakers/lecturers contract.  Many speakers are doing their advocacy speaking with little business support; I asked our pool if they would be interested in guidance and help within the world of invoicing and contracts.  Almost uniformly the survey respondent requested help.   Many wished to know current appropriate pay scales, and asked questions about tax liability.  Suggestions on bookkeeping, fee negotiation and how to deal with delinquent payment were also very much on the mind of many of the advocates.

On Ratings and Rankings

We asked speakers to consider what would be the most important elements of their speaker profile.  Several of the speakers said they were not interested in a linear format of information, but said the key elements were: Name, 3 Topics, Contact now, Photo, testimonials/Patient Story, audio/video, slideshare, website/social media, location, Bio/short CV, honoraria/speaker fee, contact email/phone and a yelp-like ranking system populated by organizations that had hired said speakers.

The group cautioned against video only, as video is blocked at many facilities.  Likewise some recommended imbedding a Twitter feed vs. a hot button link to twitter as social media sites are blocked at many institutions.  They strongly encouraged the ability to rank speakers.  Some speakers encouraged designing this site to work on smart phone platforms as many of those researching speakers may have to use their personal devices to view blocked video.

Playing “Ring Around the Rosy” on the Landing Page

I asked those surveyed if we could feature speakers on the landing page how should that be done.  This question had very divided answers.  Some thought it should be completely random, some randomized with priority, some based on audience interest using analytics, and others thought it should be based on trending interest. 

"Speak what we feel, not what we ought to say" -William Shakespeare

I asked how should these speakers be marketed and how should we promote the site.  The advocates responded overwhelmingly that they would market themselves and the others in the portal using the tools of social media, during their own speeches and while networking at conferences.  They said they would like it if TMIT would help promote, but they would use their passion, connections and grass-roots activism to promote as well.

As far as creating awareness for the site itself, they recommended a press release, emailing all contacts, partner with consumer organizations and populate the site with an exclusive list of vetted speakers.  They also recommended using technology to create widgets to imbed on sites that support our mission, tag and link back through our blogs and enable a comments section.

What shall we name the Baby?

Like any good parent who has been thinking of the upcoming birth of their child, we have been concentrating in the design and care of our site.  But it also must have a name.  We could call it many names, but the most popular were along the lines of Patient Speakers, Patient Speakers Bureau, and The Patient Voice. 

It was great to talk with so many wonderful folks during this process.  And I would be very interested read your thoughts in the comment section.  I think we are on the brink of cultural shift on how we view patient participation within medical care on a local and national policy scale.  I am glad I met Chuck Denham and the other great folks at TMIT who are realizing a dream that many of us have been hoping for these past years.   I am glad this portal can be part of that, and am proud to be a speaker as well as the “painting fly” upon the wall.


Yes, Dave wrote his post for the need for this portal back on January 24th 2009.  And that same day my husband posted this:





I cannot help but wonder how different our lives would be if this portal was around five years ago instead.  Would Fred have seen birthdays four and five as well?