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Saturday, July 23, 2011

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 AdvocatesFlies 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."
Regina Holliday
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.

Dave deBronkart
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

EDave 1-24

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.
HealthCamp DC 2011 2423
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.
TheWalkingGallery 2167
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.
Press Conference on Drug Safety Legislation
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.
Dr. Charles Denham keynote address to the Cleveland Clinic
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:

Fred Status 1-24

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?  


  1. Thanks Regina - you really captured everyone's thoughts on this. My only addendum might be that the speakers also rate the organizations that we speak at. Sherry Reynolds aka @cascadia

  2. You are just awe-inspiring. Week after week my jaw drops at what you express and how you write it.

    Thank you SO MUCH for picking up the baton and carrying it forward, in addition to all the paintings you're doing and everything else!

    e-Patient Dave

  3. btw, I don't know if you saw it, but Jessie clarified in a tweet that she wasn't at all CALLING us flies, she was claiming we ARE flies - including her:

    "provoke attention to the patient view & start to work for solutions. From a proud fly"

  4. I'd like to get involved with the Patient Advocacy Speakers Bureau. I have Crohn's Disease for 25+ years, been hospitalized over 200 Times, 20 surgeries, written "Confessions of a Professional Hospital Patient" and now operate a Blog at www.hospitalpatient and Vlog at to help people with Chronic Illness. I am quite ill myself these days with a Lung Disorder from the Crohn's Disease medications but ANYTHING I CAN DO to help - please let me know. My Twitter address is @HospitalPatient

  5. Another great post Regina. Your goal of organizing our loose group of advocates into a speakers bureau is laudable. I do see Jesse's point that one ad hoc patient experience, eloquently explained, can topple a tower of scientific evidence that contradicts the Patient's experience. This power must be used wisely, but at times is critical to be heard. Look at the patient evidence of celebrex or phalidamide. This is why patient advocacy is becoming critical in the struggle to improve quality of care, because our experience counts and needs to be heard. All the well tested theories and science does fail us as patients sometimes and we do need to call more attention to these areas. Speaking as a scientist as well as an advocate, there is much we must learn from each other.

    Thanks. Regina. Let me know how I can help.

  6. @Dave. Thank you. I did see Jessie's follow up tweet. I understood her desire provoke debate. I would like to see the scientific aggregation of stories. Just because a story is emotional doesn't make it untrue or with merit. Look at me. I am a patient data access advocate, I want data so I can come to a scientific decision about the best method of care. We need far more transparency so we can make those decisions.

    I was honestly amazed when I first entered the world of medicine at how many decisions are made without any use of a scientific method. You don't hand out ineffective chemotherapy drugs as a placebo to a dying man. It only makes their last days filled with greater misery. We need science, we need speakers and we need a lot more honesty from all parties.

  7. @Michael. Wow! I just read your blog. You are saying some very powerful things. I look forward to more of your input as we get closer and closer to the reality of a speakers portal.

  8. just lost my long comment because wordpress profile was not working ... shame.. if I have time I will come back... @kgapo

  9. Hi Regina. Let me know when/how I can help with this project/resource.

  10. You know I'm in!

    My own speaking opps are ramping up, focused on clinician audiences mostly - change has to be embraced by both sides of the health care delivery system - and also totally committed to delivering value within the ongoing conversation about improving medical care for everyone.

    @Regina, you hit the nail squarely on the head (as always) with your call for real scientific medicine and honesty. The lip-service too usually given to 'patient-centered medicine' too often boils down to lipstick on the proverbial pig: we care about you. Just not enough to actually listen to you.

    And @dave, I owe you a debt of thanks not just for (a) being you, and (b) still being here, but also (c) for introducing me to Regina.

    Queen of the Flies!!

    ~signed, Another Fly

  11. So Sista, whether we be flies, fleas, gnats, bees, we are a critical piece of the puzzle. Always like seeing all sides of the conversation bubbling to the surface, because no matter what I believe information is power, and an empowered patient is critical to a good medical team. It may make it more difficult at times in this very complicated world, but ultimately we need to be apart of the equation. That is why I travel 2000 miles (one way) for good care. Love to you and yours. Keep the dialogue going!

  12. @kgapo, something has been seriously messed up (IMO) in Blogspot's authentication for some time. It keeps denying that my own Gmail login is a valid account! So I've learned that on any Blogspot blog, before I click submit, I copy my composed comment onto the clipboard.

    Ugh. Google makes changes, doesn't tell anyone, and lets us sort it out. THIS, more than anything, is why I think they should provide health information but stay far far away from anything anyone will DEPEND ON to be working at any given moment. They just don't consider it a problem if users find that something doesn't work the same anymore, or doesn't work at all.

  13. give up of posting comment! have spent more than half an hour trying several times, refreshing page, etc.. will mail comment..

  14. Regina, ditto Dave's words about your work. Those who think your paintings are stunning (and they are) should read your blog. The fact that you find time for this project with your painting, speaking, blogging and a 5-year old to care for makes you super-fly!

    If I can help, I'm in.

    Pat Mastors

  15. Great post. I would love to hear more about this project and become involved on any level. I wholeheartedly agree with the analysis of the value of the insight and experience of patient advocates, especially because many of us left our former careers due to the condition faced by ourself or our family member and advocacy is now our *actual* career. I was/am a lawyer and consultant but now my main job is as a patient and educational advocate for my son with a rare disease. I now use those skills from my former career in this one, albeit with a much greater emotional motivation and reward. Tweeting @savingcase

  16. I'm Biddy Bytes at and I am just beginning the uphill process of contacting medical facilities, offering to speak. It's been a natural progression of my own "frequent patient status" as cancer survivor and widow to two husbands who died after illnesses (one long, protracted affair; the other short, 24-hour.) As such, I have boatload of testimonial witness...I'm looking for advice as to how I should proceed in all this. My blog has several medical pieces; I've been on Wall Street Journal this year--4 times--health-related and am featured guest blogger on CNN and NYTimes-aclaimed medical blog you for any advice you can give me.

  17. Please count me in as a speaker. I've got many a presentation to offer, derived from my nightmare with the "rare disease" of neurocysticercosis, misdiagnoses, a U.S. healthcare system ill-equipped to deliver a correct diagnosis, inadequate layperson and doctor knowledge of parasitic infections (in my case, an infection which reached the brain), experiences with homelessness and an amazing fundraiser for me (made successful by social media), etc.

    I have a ton of presentation/speaking experience, having presented/spoken at many a conference, having taught many a course, etc. To date, none of these have focused on my medical nightmare, but I'm anxious to dive in, as I'm now devoting a chunk of my life (as followers of my Twitter account have learned) to social innovation that will reduce the chances of others ever having to experience what I experienced.

    My nightmare is documented in a blog:, which I am continuing to update.

    Let me know what further info I can provide and what I might do to help make the speaker bureau a reality. Also, prior to its establishment, I'd appreciate any advice/guidance regarding getting opportunities to speak about all this.

    Thanks much.


  18. Patient advocacy is not for the faint-of-heart. Requirements to travel, design public speeches with visuals, tweet, blog, etc. eliminate so many who do not have the resources, stamina or skills. Regina, thank you for squarely facing the task ahead with courage and careful strategy. Countless citizens benefit from your effective effort.

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