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Should Patient Engagement Be Regulated?

Last month in Cambridge I met Twitter friend Bryan Vartabedian, M.D. (Twitter @Doctor_V) at a meeting at Vertex Pharmaceuticals. We’ll cross paths this fall on the conference speaking circuit. [Recently] on his blog he raised a rowdy, rough, but valid point: As e-patients (obviously including me) get into the business, should they/we be regulated? He said:

  • Will industry be required to publicly list monies used for sponsorship, travel and swag support of high profile patients in the social sphere?
  • Should high visibility patients who serve as stewards and advocates disavow themselves of contact with pharma just as many academic medical centers have begun?
  • As is often the case, I don’t have an answer. I’m just raising the questions. Smart questions. My short answer:

    • Fine with me if industry discloses those payments. Nothing to hide.
    • On the other hand, I think it’s nuts and counterproductive for consumers in any industry to disconnect.

    Academic medical centers have tons of evidence of influence corrupting the academic processes that are at the core of (supposed) science. For patient advocates I don’t see that there’s currently a problem that would justify adding regulators, the ensuing budget impact, etc.

    Besides, there’s a key difference: Academics are supposed to vet industry. It’s their job in this context. Patients, on the other hand, are the consumers — the ones the industry’s supposed to serve.

    As @Doctor_V suggests, healthcare is changing now that industry recognizes patients are worth engaging with. (I presume I’m one of his “high visibility” patients.) And this turned out to be the right time for some thoughts I’ve been meaning to express about my own work.

    Introductory principles:

    1. Where motivations may be suspect, transparency is vital.
    2. This industry needs a hell of a lot of improvement. It’s disconnected from its consumers. Let’s get to work.
    3. In changing culture, clubbing people tends not to work; co-teaching can. Let’s try open communication about the issues. (Like we’re doing here.)
    4. Blow whistles when we want to, but then let’s TALK about it. No jumping to conclusions.
    5. The dialog this industry needs is extensive, not the stuff of an occasional focus group. A real re-thinking is called for. This will take time, including lots of patient time, and that means funding.
    6. Exquisite irony: the need for funds is often greatest among those with the most knowledge: people with lots of experience as patients. I cited this in my patient-in-chief proposal and a year earlier in my call for a patients’ speakers bureau.

    A walk through intertwined topics:

    Transparency: Yes, concerns about motivation and the risk of corruption are best answered with transparency. Me, I’m in this to change the world. I’ve been openly scouring the ecosystem seeking what startups always seek: a place where I can contribute genuine value and get paid, to stay afloat financially so the whole thing doesn’t collapse.

    How I earn my income: I have a small quarterly retainer from Klick Pharma, an excellent Toronto marketing firm who completely gets patient engagement. (That’s important to me; more in a moment.) Aside from that, at present 98% of my income is from speaker fees. This year I’ve been paid between $0 and $3,000, I’m quoting more for 2011, and I’m told I may reach $7-10,000. Sounds glorious, but it’s not an easy life. While I’ve been building the business (in my modest home) I’ve had bounce charges and late fees. It’s a highly seasonal business: intense now, dry all summer. Some events are great to work with, some take months to pay.

    Like any startup, I’m looking for ways to turn the initial uptake into something sustainable and scaleable. I’ve met some smart people along the way, and some have good ideas.

    And like any startup, it’s a balancing act. I’m trying to earn a reputation, which takes time and judgment; until recently I had no admin help (this is a horrid business logistically, and I’m bad at that); I bust my ass on most speeches, then I give away most of my content, posting it for free on my website (if it was videotaped). Example: at August’s National Quality Colloquium at Harvard, I worked on the speech until 4:30 a.m., got 90 minutes of sleep, then posted the video on my website. (No income.)

    I post the speeches to advance my cause and to market myself.  They’re giveaways: I don’t post one-minute clips, I post the whole speech. I’m grateful to the hosts who let me do this. And, it forces me to come up with new things to say.

    Quality improvement: I avidly seek customer feedback – and I don’t just mean the promoter, I mean the audience. At the Harvard colloquium I was the second-highest-rated keynote, behind Atul Gawande. (He’s next on my list…:-)

    Any good business does that. Too often, healthcare providers don’t. They’re not good businesses, and we all suffer. We must change that.

    Ironically, my blogging has decreased now that I’m in full startup mode. I don’t like that. But to think/read/write, I need to build the business. (My wife’s income has dropped, for economic and medical reasons.)

    Work hard; earn it: I wrestle with presentation software, because I refuse to cause “death by bullets,” where a speaker throws up a crummy slide and talks for five minutes. Yo, people: use the Animations feature! Know your tools!

    The Harvard event’s web broadcast system almost threw me a curve – it doesn’t execute my complex fonts, layouts, and animations, so every build had to be converted to a separate JPEG. Several hours of pre-testing weeks in advance, and slide editing at the end, led to an 89-“slide” PPT for a 30 minute talk.

    Recently I started a talk by saying something I learned from my friend Ted Eytan MD: I told the audience they’re welcome to ignore me or work on their phones because it’s my job to be more interesting than their email. (How cool is Ted?)

    Choosing my cause: Patient Engagement. Last year as I considered going out on my own, I mulled what I’d stand for. It was a risky, pivotal decision in a hot political environment. With wise help from the incredible Susannah Fox, I chose patient engagement. It’s something I know about, something I understand, something where I know I see things that others don’t. It’s an area where there’s real economic value to be harnessed, and where I can teach.

    Ethics: Having returned from the brink, I choose to use my life to do good, and there’s no way someone could persuade me to “go whore.” (Nobody’s invited me to, btw. And yes I’m aware of the subtle seduction of funding, etc etc. Remember, I was a full-bore hippie.)

    Waking up to what engagement is: In a recent talk I said “Here’s what patient-centered isn’t: ‘Dear patients, we were thinking about you while we designed this.’” It’s like the joke today on NPR that the NFL’s new women’s products must have been designed by guys thinking “They’ll probably like this.”

    This is so hard for some people to grok. But some people are getting it: patient engagement means engaging with patients. For real. Talking with them, working with them.

    Good example: Prometheus Labs is now the marketer of Proleukin, the high dosage interleukin-2 that saved my life. Last week they brought together 70 patients for a first-ever interleukin summit. The company listened. Like, really listened well. They engaged us in real discussion.

    We got paid varying amounts for 1-3 days of our time. Less than $1k per family.

    Now think about Novartis’s (excellent) new DVD, “Becoming Christopher,” presented at e-Patient Connections this week. It’s about today’s unprecedented situation where cystic fibrosis patients are turning 18 (that never used to happen) and the unprecedented social challenges. (Teens don’t like visiting kiddie doctors, and CF docs tend not be experienced at issues like sex.) I loved everything about the DVD except that it apparently hadn’t occurred to them yet to share it with patients(!) – the rave reviews were all from docs. (I’m sure they’ll correct me if I got that wrong.)

    And that was despite having cited that CF has “A close-knit, savvy patient community.” They’re worth noting, but not (yet) worth engaging. Don’t you just wonder what patients think about the accuracy of this DVD, which is being shown to their doctors?

    See? We have work to do. And we can get there.

    btw, the Proleukin summit was very well run. Every aspect of its production and planning was well thought out and competent.

    Proof of concept: Startups with an idea often seek “proof of concept.” There are phenomenal examples of patient-industry partnership (including funding) in the diabetes community. Amy Tenderich’s Diabetes Mine and Kerri Sparling’s Six Until Me come to mind. (Others, pipe up!)

    Pro bono and promotional: I donate my time to some events, when I believe they’re competently pursuing something that’s worth pursuing and when I can afford to. I also speak for free at events that are good for my visibility. August’s National Quality Colloquium was one such place; BlogWorldExpo this month is another.

    e-Patient Connections  meets both criteria: good visibility, and Kevin’s doing a damn good job of trying to teach the industry to jack in (connect) to the e-patient world, to partner with it/us symbiotically. I donated my time there, because I think Kevin Kruse is the most on-target business conference producer I’ve met, by a long shot, and I want his new conference to grow.

    Avoid no-value-added conference producers. Some conferences are (frankly) incredibly naive about the business of being a speaker. Some offer only travel expenses, some not even that. (Yes, some conferences ask us to come at our own expense so they can sell tickets.) I’m sure that’s because they’re accustomed to inviting speakers who have day jobs in the industry, for whom this is just a field trip. They make a business of getting free content from speakers, and selling it for $895 a seat.

    Last month someone whined to me that he couldn’t pay me because it costs so much to promote the conference: he had to spend the money on promoting my presence, not paying for it.

    Let’s rate the conferences! Hey, why don’t we start a Digg-style conference rating site? Heck, if we’re starting to rate doctors, why shouldn’t attendees rate the people who sell event tickets? The Twitter stream suggests Kruse would get a whole bunch of green thumbs up.

    Ethics and “buyability”: On the whore issue, I never fear speaking the truth as I see it. When Kru (Kevin’s company) posted the research item that Cascadia notes just before his 2009 conference, my response was to title my speech “Engage Authentically,” and to make the business case for straight speaking.

    Later at some pharma marketing conference I said “You guys ought to raise HELL back home about when people in your company pull scurvy tactics. In my career in marketing I can’t imagine being responsible for my company’s image when some fool gets caught doing sleaze. Is that necessary?? I mean, hello, there’s genuine value in saving lives!” At Kruse’s conference last year I shouted out “I love you!” to Novartis, who was marketing interleukin at that time.

    The brightest star on the horizon:

    I’m ecstatic that some conferences – e.g. Health 2.0 and IHI – are starting to help patients attend even if they’re not speaking.  Just so there can be patients present in the discussions. I expect some fits and starts as that gets tried. But it’s sure the right thing to do.


    Again from @Doctor_V:  “Chock up influence of the patient population as evidence of social health’s evolving maturity.”

    I love that social media (like this!) let anyone open a discussion like this. Game on.

    p.s. The “patient in chief” and patients’ speakers bureau are still valid ideas, and still not implemented… I’ll know we’re really crossing the hump when those happen.

    *This blog post was originally published at e-Patient Dave*

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    One Response to “Should Patient Engagement Be Regulated?”

    1. Dave,
      This is a great topic, but I’m not sure I agree on the distinction you make between academic (physicians) who “are supposed to vet industry” and patients/consumers – that “industry’s supposed to serve.”

      I think some doctors are prone to taking stuff from industry, and so are some high (and low) profile patients. I don’t think either group is morally superior, or inferior, to the other –

      So the same rules of transparency should apply. This is especially true if we advocate a collaborative patient-doctor-on-equal-terms model for health care.

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