I edited the top portion at 8:14 pm ET, a few minutes after posting, adding the “key difference” paragraph. Sunday morning, added the Klick Pharma item under Income.
Last month in Cambridge I met Twitter friend Bryan Vartabedian MD (Twitter @Doctor_V) at a meeting at Vertex Pharmaceuticals. We’ll cross paths this fall on the conference speaking circuit. Today 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.
- Otoh, 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:
- Where motivations may be suspect, transparency is vital.
- This industry needs a hell of a lot of improvement. It’s disconnected from its consumers. Let’s get to work.
- 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.)
- Blow whistles when we want to, but then let’s TALK about it. No jumping to conclusions.
- 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.
- 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.
Dave, as usual Bryan is way ahead of the crowd in terms of insight and ‘getting it’, i.e., the unfolding paradigm shift – unintended consequences and all. We are gifted that he has embraced this medium and continues to share is wisdom, experience and critical thinking on a regular basis. I also appreciate your thoughtful reply…
Cheers!
Thanks to @doctor_v and yourself for unpacking this provocative discussion. I also appreciate your full disclosure, Dave. Your ‘introductory principles’ prolegomenon & the observations/suggestions that follow deserve a broader conversation…
…preferably when Europe is awake ;)
This is a great conversation…
Thanks Dave and Bryan for getting this discussion started. You’ve given a great deal of food for thought.
Hey Dave,
As you an I have discussed in the past, this situation is nuanced because the deck is stacked against the patient in these situations – everyone else at the meeting/conference is paid to be there via their salary, so they don’t grapple with the regulation question – people are typically not asked to disclose their salary like they are honorariums. Creating a public resource that patients can draw from could help make this discussion moot.
In terms of the right thing to do, it seems to me, it’s going back to the same principle – what would your patients want you to do? If you ask that question every time, a lot of things become very clear. So, as with anything else, we should tap the expertise of the people who will benefit or not from this kind of work and see what they expect in terms of transparency, etc.
Sounds like a fundable project by someone,
Ted
Ted, Happy New Year! As we head out for the evening (in Provincetown!), I stumbled across this posted from twelve weeks ago.
You said “Sounds like a fundable project by someone.” I’d like to get to work on that. Any suggestions? Reply, or drop me a line.
(Next year.:-))
Dave – Beautiful post. I never thought that a simple question could stimulate such derivative dialog. So much here I don’t know where to begin. I think I’ll use this to seed a handful of new posts that will reference this.
With respect to academic physicians and patients, I think there are probably huge differences. And yes, the academic community has the job of remaining as removed from industry as possible (I do think that relationships here can play an important role, however). I think it would be impossible to compare docs to patients. You suggested that patients are consumers. Yes, most are. But as consumers become the producers of media and ‘authorities’ among their disease peers, we have to keep our eyes and ears open to conflict.
Thanks for your post.
Dave, it was easy to reflect your passion back to you when we talked last year about what your focus should be: patient engagement = you. I take credit only for de-fogging the mirror from time to time.
I’m attending a LOT of conferences this fall (9 in 6 weeks) and over & over I am seeing the power of having patients in the room. e-Patient Connections was a wonderful and well-documented example (in blogs, on Twitter, plus the large in-person audience) as will be Health 2.0 SF.
But the one that turned my head around was a smaller meeting here in DC that is getting less attention in the blogosphere/Twittershere, “Online Social Networks and Smoking Cessation: Strategic Research Opportunities.” It was sponsored by The Schroeder Institute for Tobacco Research and Policy Studies, which is part of Legacy (see: http://www.legacyforhealth.org/2616.aspx). About 100 people from many disciplines – academics, activists, counselors, federal agency reps, and (in the “patient” role) ex-smokers.
Prior to the meeting we were all sent a huge briefing book of academic journal articles and the morning’s speakers focused on the theories laid out in those articles, many of which didn’t directly relate to smoking cessation. My favorite, of course, was Nicholas Christakis, author of Connected, who had not only the most interesting data on social networks and smoking cessation, but delivered it in beautiful data visualizations.
Directly after lunch, five ex-smokers took the stage under the title “End User Panel” which I found a bit odd (end user of cigarettes? end user of social network sites? end user of health care?). After all the theory covered in the morning, it was refreshing to hear from people who actually used online social networks to quit smoking and help others to quit. They got more questions than any other speaker, including Christakis, as researchers lined up to gain insights about what worked and what didn’t.
Later in the day we broke up into working groups to discuss what research questions we would tackle if we had unlimited funds (ie, let your imaginations run wild). Each group had its share of academics and front-line advocates, so it made for an interesting exchange of ideas. Example: the PhD who said, “what we really need is a theoretical framework,” and the smoking-cessation counselor who immediately countered, “what we really need is a strategy to stay ahead of the tobacco industry.” Need I say more about the power of having a diversity of perspectives in any discussion of health behavior?
Susannah, THAT is a comment that deserves to be a post of its own.
Re de-fogging my windshield last year: that was no small task. :-) Thanks again.
I’ll add “end user” to the terms “patient” and “consumer.” I get its meaning: in any industry the end user is the ultimate recipient of what everyone else was working on.
btw, Susannah, I’m heartened to hear that the researchers were smart enough to be interested in what worked for the patient / end user!
Legacy is an extraordinary foundation – mission-driven, spending money on research AND advocacy – and yes, they and their guests that day created a learning environment that was open to new insights.
One reason they may be so interested in new insights: the evidence is a bit thin for the use of online social networks in getting a significant portion of the population to stop smoking. It’s clear that this intervention *can* work (for example, for the ex-smokers on the end-user panel) but it’s not clear that it will be a widely adopted tool.
The second day of the event was going to be even more focused on future research and initiatives, but I couldn’t attend. There will be a publication coming out of the event, so stay tuned.
At the CDC social media conference in August there was a lot of talk about “socmed” as a behavior change tool, with some stories of success. Was any of that work cited in the sessions you saw?
Will you make that comment a post on e-patients.net, or should I paste it in (and sign your name to it :-))?
I also had the opportunity to attend this conference and agree that it was extremely refreshing, and useful, to be able to listen to ex-smokers who use online networks. It was great to see how much of a role the online social support played.
Thanks for posting this Susannah!
Again, commenting as an interested but largely uninvolved outsider (but not like Baltimore doc. (:) – I love the idea of having the Society for Participatory Medicine develop voluntary guidelines, and sooner rather than later. Perhaps they could also be the repository of someone’s suggested foundation to support patients’ attending conferences. I for one would donate to such a foundation if it existed and I knew the $$ was going to a good place.
As a pathologist I did not prescribe drugs, but frequently attended our local infectious diseases society meetings with our PhD microbiologist. (And I have been a patient and relative, of course.) The pharma presence there was constant, and their marketing is very subtle, extremely sophisticated and pervasive. I suggest that it is possible for an innocent e-patient or advocate to be swayed without really knowing it has happened – as Dr. V indicates in his post, many, many physicians slid down that slope and even now do not understand that they did. Guidelines established prospectively would support the patients/advocates both in recognizing what’s happening, and being able to say ‘no’ to someone who has a lot of $$ to offer….
So, Bev, you wanna take a stab at some draft guidelines? Start by proposing one or more.
On Doctor_V’s original post, ACOR founder Gilles Frydman has a great comment – he’s been in this and has thought about it longer than anyone I know. Check it out – he points out that advocacy *organizations* already have an issue with industry sponsorships, and he links to a set of guidelines from a European organization.
Indeed, in my short time exploring this I’ve noticed that sometimes an advocacy organization’s real goal becomes keeping the sponsors happy so their jobs stay alive.
Dave, I am by far the least qualified in this august group to dream up guidelines. Gilles’ link seems like a good start.
Bev, now I’ll pull another Ted Eytan on you: give up the idea that “we” are august and you’re least qualified. The whole problem (large part anyway) is that “the you and me” felt we didn’t have anything to contribute.
Following that advice from Ted is entirely how I started speaking up.
What would good guidelines look like to you?
Dave, as I mentioned I think Gilles’ link to the European guidelines provides a perfect template without having to start from scratch. It could be adapted to apply to individual e-patient ‘celebrities’ or advocates also. In addition, below is the Harvard MS website devoted to ‘academic integrity’, of course geared to an AMC but good for general information and food for thought:
http://hms.harvard.edu/public/coi/index.html
> geared to an AMC
For anyone who’s new to this area, “AMC” is an academic medical center, for instance Harvard Medical School.
In Europe (at least in Holland) it’s UMC – university medical center.
Hi Dave
While not related directly to the topic of the post, but more to the extent of your difficulty in being ‘adopted’ as a commercially viable entity, I have the following two comments:
Firstly, I suspect the term ‘patient’ does not do anyone any good as a long term commercial investment. Being a ‘patient’ has the connotation of being ‘ill’ and thereby of being ‘damaged goods’, even if the opposite is true. So it may be worth adopting an ‘ex-patient’ label or something similar, if there is a good alternative. I can’t think of one. The sooner patients are seen as client/consumers the better in my opinion.
Secondly, who stands to win and who stands to lose by the ePatient movement? And which of those two sides has the money and power behind it? Unfortunately the biggest disappointment in 21st century medicine is that economics and politics trump ethics and morality. The ePatient movement threatens the former more than the latter, as I see it.
The Bible saying about a prophet seldom being welcome in his own country sadly comes to mind….
Great thoughts, Martin! Before I sign off for a few hours, I’ll say this:
1. Patient, consumer, ‘end user’ (see my reply to Susannah today) – the underlying issue, to me, is that we’re the recipients of the services, the people whose needs ultimately are or aren’t met by the industry.
That includes me, because I know I couldn’t have diagnosed myself, treated myself, screwed my leg back together, etc. At least, that’s what I’m talking about.
In a business talk somewhere, I also pointed out that the producer-consumer mindset is obsolete now that we patients (or whatever) are now *producing* value in our conversations with each other (and industry).
2. Re threats, I hear you; some people are sure to defend their current turf and income. My choice is simply to move forward.
Thanks for contributing – good to hear from you.
Hi Dave, I agree with you that informed and engaged patients have much to offer industry and care providers.
Would love to hear more of your thoughts about patient speakers bureaus:
-Who would be your primary target audience?
-Would content be focused primarily on patient experience?
-What types of controls would you see being implemented to avoid the risk
of patients sharing experiences that are an “n” of one and not
applicable to the majority of the population (or reproducible)?
-Finally, how do you see patients as paid speakers being able to openly
share their personal experiences and also protect industry from any hint
of “off label” promotion?
Thank you and good luck.
Sunnie
Sunnie’s comment shows a real understanding of the current situation. That’s why we need to come up with real guidelines and a code of practice. See my full comment here.
In particular the issue of “off-label promotion” is just too important to be answered in a short comment. The existence of a complete code of practice would guarantee the independence of the advocacy entities signing it and would legally protect the industry members funding these advocacy efforts. Patients, even the professional ones, must have the ability to speak frankly, without having the fear that what they say will impact their relationship with funders.
Thanks Gilles. Really appreciate the thoughtful conversation.
Gilles, I’m game to make this happen. (Guidelines.) Chase me down in San Francisco – maybe we can whip something together fast.
Could this be a relevant topic for the Patients 2.0 session?
This might be a bit too granular for the Patients 2.0 session, since it’s designed to give voice to all who attend & we don’t yet know who will be there. But the issues raised here are important and I’d love to help keep the conversation rolling. See you in SF!
If y’all haven’t clicked through to see the Code of Practice Gilles mentioned (from Europe), please do: 6 page PDF, Code of practice between patients’ organizations and the healthcare industry.
Examples:
– Sources of funding should be transparent
– Funds for core activities should be received unconditionally
– Funds or sponsorship of projects should be unconditional
– Pt organizations can accept event sponsorship, but not tied to control of the event’s content
etc.
As Bev said (before I dissed her :-)), the whole document is a good start.
Sunnie, it’s great to meet you. Are you on Twitter?
Dear Dave,
Great Post. You made some really great points. I agree completely re the need for a speaker’s bureau. I also agree that complete transparency is a must as an e-patient speaker. I disagree with the comment that at some point we stop being “patients.” We are all patients, and some of us are e-. But this is the role we must all take up in points throughout our life and as Empowered Patient Speakers we try help the audience connect with their inner patient. I love it when I speak and then hear that lunch conversation haas circled around each individual’s medical journey. This isn’t an us vs. them situation. This is about changing how people think about patients and their role in society.
Thanks, Dave
Hey Dave, great idea for a HealthCamp SF Bay session, too. I’ll introduce it there, more with the goal of funding this activity ethically rather than limiting it…
I won’t be at HC SF Bay – not arriving until afternoon. If you do have that session, take notes!
Dave, I also put this comment over on Dr. V’s blog… I believe patient bloggers/activists ARE already regulated but most just don’t know it. The FTC passed legislation that applies to bloggers and other endorsers which require full disclosure. This sent ripples through the pro-blogger community last year but didn’t register on the radar of patient bloggers who receive income. Probably because there aren’t many of them.
See FTC details here: http://www.ftc.gov/opa/2009/10/endortest.shtm
Kevin, I remember that FTC rule (it’s a regulation, not legislation, right?) … but rereading it, the relevant portion seems to be this: “the post of a blogger who receives cash or in-kind payment to review a product is considered an endorsement. Thus, bloggers who make an endorsement must disclose the material connections they share with the seller of the product or service.”
If I don’t review products (and certainly don’t get compensated for it), that doesn’t affect me, right? Or did I miss something?
Well, I’m no expert of course and I think it is in the interpretation. I will tell you that many bloggers who get free books from publishers and write a review of it now feel they need to disclose they were “given” or “compensated” with the book.
So, hypothetically of course, if someone was treated with Interleukin, and publicly expresses love for the product and company, and receives a modest fee from the company at some point, would FTC regs apply? I think when the fee comes AFTER the “endorsement” of course not. If fee comes during a treatment, an argument could be made that while the fee wasn’t directly tied to the endorsement, it’s related. (I wouldn’t make that argument, I’m just saying). After all, the crack-down on Pharma Physician Advisory Board payments was largely because it was viewed as a non-direct way to compensate them and motivate them.
Interesting…
And let me say, Kevin, that this discussion clearly belongs on the agenda for the 2011 edition of the e-Patient Connections conference. :) Both ends of the connection need it!
And let’s engage some FDA people, now (here) and there.
btw, as an indication of how much ucky fun this business is, logistically, I just spent a 100 minute meeting on travel logistics for the next five weeks.
Great post, and great commentary. Looking forward to continuing the conversation this week at Health 2.0 – I will definitely have the contributions here in mind as I attend both the Patients 2.0 session as well as other sessions/conversations with peers.
I agree with the concept of a speaker’s bureau, at the same time recognizing that there would be ample training and support needed to help people in speaking both to their own experiences as well as a broader perspective that may be more generalizable. Perhaps something that the to-be-hired consumer e-health lead within Office of the National Coordinator’s Office of Policy and Planning should be considering.
Late to the party here… because I’ve been on the road doing all those things Dave talks about. Leaving today for Oakland, CA – then San Diego, Las Vegas, and Sarasota, FL – some great outreach opportunities.
Loving the fact that this is such a collaborative conversation, too.
Like Dave, I am having to find my way – in effect, ‘invent’ a career that allows me to spread my message and support myself at the same time. I am more than happy to be transparent, because I believe that good leadership comes in part from setting a good example.
Unlike Dave, I have no regular sponsors. Until August, for 4+ years, the bulk of my income came from hosting my weekly radio show, sponsored by my local medical university. I left my host position because I had the opportunity to speak on a schedule that requires me to be away for so long that I couldn’t keep up with both. (Susannah – I hear you on having to be at so many conferences!)
I take no money from pharma or any industry professionals except conference organizers. Period. I have been asked by a handful, but know that the minute I engage with them, I lose my credibility with patients who trust me to be objective.
I get speaking fees, I have written a book, I have an online presence that pays me, I write a newspaper column, and I run a website that matches patients to advocates, for which the advocates pay me to participate. AND, most important to this point, I have a wonderful husband who understands that supporting my work (and paying most of the bills) is his contribution to improving the ability of patients to find better and safer care from the healthcare system.
My biggest beef? Those organizations who want to include us e-patients, who pay their “professional” speakers (or give them a platform because they are sponsors), but don’t pay us patients to speak or pay our travel expenses. We don’t have corporations with travel budgets, and our time to prepare is just as valuable as anyone else’s. For the right opportunities (e.g. Health 2.0) that pay my expenses – I’m there when I can be. For the others who won’t at least pay expenses? They aren’t serious about helping patients – only helping themselves.
I do find one irony in this conversation – the concept of “patient engagement.” Among the group that is participating in this conversation are many highly engaged people who are willing to include us patients. I still maintain that in most conferences, in most meetings, in most settings where the future of healthcare is being discussed, we high profile patients (Dave, Regina, Gilles, me and others) still need to get in peoples’ faces to get ourselves invited to the conversation. To them we remain invisible. At the point when someone I have never heard from before contacts me to speak or write, THAT is when I know we are beginning to make some inroads.
Dave and I have had conversations about a patient speaker’s bureau. I’m totally supportive. I have registered a URL to help it happen. But until I get past these next few weeks (practicing what I have just preached) there is no time to even think about it.
OK – on my way to the airport. Stay safe everyone. I’ll check in on the conversation as I can.
Dave, Thanks for sharing your purpose! It’s sounds like you may agree with me in my saying…Its not hard to put in those hours when you know you are changing the world. It’s so much more than a paycheck (Although paychecks do help the bills get paid ;-) I just wrote a post about my first ever opportunity to tell my story to a room full of healthcare providers…It is coming up on the 29th of this month. http://neelysmiracle.com/2010/10/working-to-change-the-world-one-doctor-at-a-time/
Thank you for helping me have the confidence to push forward.
What an incredible story, Christy. You sure are a “mama lion” e-patient. Keep it up!
Having worked on issues of “family and/or consumer involvement” or “meaningful participation” in mental health care for many years I am so happy to see an organized and aggressive approach happening in what looks like mainly “physical” healthcare issues. The concepts of course overlap, but there are subtle differences. However, on this issue of consumers being regulated…NO, not your average consumers demanding to be full and meaningful partners in their OWN lives and health matters. However, when an average consumer decides to turn “pro” as you have Dave….I believe that regulations may not be the answer but accountability…in many ways. What are you saying…on behalf of WHO? If you speak for yourself, no need to regulate. When you begin a large scale loud speaking for OTHERS, I assume “we” are the others and I want to be a full and meaningful participant in what you are saying. That could be done with an advisory board for you? To “keep it real” so to speak. Taking money changes everything. Not sure if this is making sense to anyone but me :) Maybe I’ll review and revise in a bit….thanks Dave.
Hi Wendy – nice to meet you!
I don’t know if I’d call it “an organized approach” :–) … I myself have never been in any meeting planning such an approach. I’m just doing what I do, trying to find a way to make ends meet.
I do make a point of being very careful what I say, knowing that I can’t possibly know what this vast field looks like to other people.
To understand what I do and don’t say in my talks, you can review the videos on my Speaking page.
I often say that I don’t claim anyone else should think like me or want what I want for myself. I do assert that patients have a right to know what their options are, and that patients can help heal healthcare. (That’s the slogan at the top of http://e-patients.net)
See what you think in the videos…
This comment is to let subscribers know that I’ll be posting an update to this, a year later. A lot has happened, and the outlook has evolved.
If you want, you can start by reviewing my post five months later: 2011 Major Projects: Opportunities and Challenges.”