Patients are the new darling of the medical-industrial complex. If you look around you will see patients advocating for one another. If you click a little closer you’ll find some with relationships to industry.
It makes perfect sense that the manufacturer of a drug or medical device would want the blessings of our nascent cybercelebs. Some want genuine patient input. Some, however, want to curry their favor. Chock up influence of the patient population as evidence of social health’s evolving maturity.
A couple of questions:
- 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.
I predict that patients will ultimately be held to the same standard as other professionals when it comes to disclosure. And this is probably reasonable. With influence comes responsibility.
“My relationship is separate from editorial content and it’s disclosed,” I hear. But even when this is genuinely the case, influence is remarkably complicated.
And if it hasn’t happened already, the issue of patient conflict with pharmaceutical and medical manufacturers should be raised. Patients in positions of influence (and even industry) should consider working to establish a standard beyond the FTC guidelines that all who follow should live by.
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Generally speaking, adequate disclosure is never a bad thing.
I do think we will need to discuss this matter – there are issues to consider, and it’s better to air this out so we can collectively come to some ground on what’s appropriate, and also to establish models to follow.
As far as specific legal regulation – ah that’s a toughie.
Good post – with great questions. I’m sure it’ll ignite a warm little light around the camp.
@PhilBaumann
I agree that disclosure is important. One thing that differentiates patient advocates from physicians is that we actually have to take or use the medications or products. When you rely on something for you own health it tends to keep you very interested in ensuring it is of the highest quality.
I imagine most “epatient” advocates know the history of pharma and how they developed in-depth psychological profiles of providers they wanted to influence and it worked! Or that 95% of all RXs are uploaded and resold to pharma to target market providers.
Although pharma is clearly using the same techniques to target market media “patient advocates” there may also be an opportunity for informed patients to help direct the massive drug company resources into new areas without being co-opted. Many people worked hard to keep pharm reps out of doctors offices but with direct to consumer marketing it will be challenging going forward. IE Can I have the purple pill please? what is it for btw?
The bigger challenge will probably come from the collection and reselling of patient data via online web sites though not the direct to consumer marketing or co-opting of consumer voices.
The RealAge website, for example sells users’ medical information to drug companies and yet it has celebrity endorsements by Dr. Mehmet Oz, a frequent guest on Oprah. Others like PatientsLikeMe use “an innovative for-profit business model.” Basically they sell the health information they gather from member profiles but with certain identifying information removed, to drug makers and others for scientific and marketing research.
Some of the EHR companies like Practice Fusion and Cerner also resell patient data (there is no such thing as de-identified data according to FTC testimony this past week) and Pharma is the biggest purchaser.
Byron – Great point, actually. There is clearly a flip-side to the patient advocate’s relationship w/ pharma that can have positive effects.
Wow, great topic. I would think it would (and should) be headed this way–it already is a bit, with bloggers needing to disclose product affiliations, isn’t it? I’m a huge believer in disclosure.
And with regard to our now-elevated patient status, my oncologist always tells me I have so much more credibility than he does because I’m a patient. I believe that, but only up to a point. Hearing from someone who went through what you went through always carries a lot of weight. But we need to be responsible about what we say. I would never presume to offer medical advice.
Yes, Jackie. I think that as patient advocates draw a larger and more powerful voice they need to be much more responsible with how they communicate and disclose. I’m not suggesting in any way that I’ve seen any irresponsible behavior but I think were just in the early stages of all this.
And then there’s the elephant in the room. Doctors in social – I think we have the very same responsibilities.
Last year on twitter a pharma rep created a fake drug for insomnia along with multiple fake twitter accounts to do some test marketing on response rates and then blogged about it http://blog.kruresearch.com/2009/07/dtc-pharma-twitter-experiment/ and presented it at pharma events. “Look for original Kru research on engaging e-Patients on Twitter”
The consequence? Well he of course he now sponsors epatient conferences including a recent one attended by many epatient advocates.
Cascadia, I love open debate but don’t like slanderous statements. No employee of Kru Research has ever been a pharma rep. The research to which you referred was presented at one conference. As for our legitimate difference of opinion, trying to understand the ways in which patients want or don’t want to engage with life science industry and others is a service to both sides.
Hi Kevin – I didn’t realize being a pharma rep was something negative? It was the result of info on your web sit and a simple google search – Kevin Kru Pharma . IEI used the term “rep” means to represent an industry.
Kevin Kruse Named Executive Director of the Society of …
Sep 23, 2010 … Free Online Library: Kevin Kruse Named Executive Director of the Society of Pharmaceutical and Biotech Trainers
PharmaVoice magazine named Kevin as one of the “Top 100 Most Inspiring People in the Life Science Industry.
Transparency is the key to resolving the inherent conflict.
When I say ‘inherent conflict,’ I mean that there’s no bottom-line benefit to being a patient, or to taking on the added charge of advocating for patient rights / empowerment from this first-person perspective. The E-patients who take on this task typically have to rely on support from many quarters, including industry.
‘Have a compelling story to tell about your patient experiences that would benefit the broader healthcare community? Good for you! Now simply compound the familial and financial stress you already have from your illness and self-fund your efforts at sharing your message.’
If a pharma company wants to let prospective patients know about a new trial, or an electronic medical records provider wants to advocate for a unified record that could empower more informed care, and they have a patient advocate who can tell a real, personal story about the benefit that they experienced (or didn’t if their provider didn’t know about / have whatever it was), as long as the financial arrangements are above-board, I don’t see a problem with that.
Just because the truth of someone’s experience provides a commercial benefit to someone else doesn’t make that experience any less truthful. And sometimes (most times) there has to be a financially-interested party to support the dissemination of the idea.
Should industry disclose support for any and all ‘lobbying’ efforts, even those with e-patients? Yes, I think that’s reasonable.
Should e-patients shun industry support for advocacy? This answer gets a little dicey, but in general, no. While this position could support pseudo-e-patients whose sole purpose is to be a PR mouthpiece, wrapped in justification of patient-experience, for the benefit of a corporate client (the influence of this, however, could be checked by industry disclosures), I think that there is a greater good to be realized from giving voice and a forum to genuine patient advocates.
All great points. My fear is the scenario you outlined – e-patients who evolve as PR mouthpieces ‘wrapped in the justification of the patient experience’ and all shades of grey. God knows there are plenty of physicians who have tripped into this category.
I don’t have any kind of solution for its prevention except transparency. This too isn’t perfect.
In reading some of the replies, “lobbying” is a strong word if used in the political sense. Pharma is inherently a statistical beast. They only respond to measurable markets if there is sustainability and ROI. Social media is experimental territory for them and it’s not surprising that the public may view pharma courting e-patients as predatory. But they’ve absorbed real costs to develop drugs and are trying to ensure (and yes in many cases create) demand. No other private entity has stepped up to the plate to sponsor e-patients, on a national and international scale.
If you want regulation, then be prepared for pharma to step down as the cost to experiment may be too high to sustain.
Egads…more regulation? These are great questions being raised, and I don’t have an answer, either–though disclosure seems a no-brainer. I’ll also suggest that there are those of us out there who will be watching closely the “e-patients” (real or fake) who are aligned with pharma and any other industry and possibly abusing their status toward unsavory agendas. And, we’ll call them out.
But, I’ve got to hold on to the belief that these folks are trying to do in whatever way possible what’s best for all patients by shaking things up, even when it means cozying up to industry.
Think of them as velvet harpoons
Daphne
I love this, Daphne. You’re at once nutty and succinct….
Excellent question – and yes, this becomes relevant now that industry has FINALLY recognized patients as a player worth talking about.
(I couldn’t help but think I just might be one of the high visibility patients you cite…)
Answering this led to a huge post of my own. Here’s 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.
…and here’s my post, about my own business.
If you’re reading this and you haven’t clicked through to Dave’s response – go now. Lots of derivative thinking there that could drive a full-day seminar.
See, I go to sleep and all this interesting stuff happens.
Great post, comments, response from @epatientdave
@andrewspong
and on a weekend to boot. at least now I know that “rep” is a negative term.
Bryan,
these are of course excellent questions. Dave has already answered as only he could. But my take is a bit different and I would like to offer an idea.
1. We are seeing the rise of a small groups of social media centered professional patients, Dave being probably the most famous currently. Dave’s success, aside from being fed by his famous intellect, is greatly facilitated by (a) social media, mainly blogs and Twitter and (b) the fact that the concept of active and equal involvement in their care has now moved from pioneering grassroots to mainstream, requiring its professionalization. It’s clearly in its infancy and for the most part, it is a very good thing. Therefore it should be encouraged. Even though, as for every other professional activity, it has to generate its own biases, a fact we should start acknowledging (A small example: cancer survivors like Dave have an obvious bias towards successful outcomes and cannot adequately represent the plight of all those whose treatments have failed and passed away).
If you want to regulate the work of these professional patient celebs will you also want to regulate their main activity, their daily involvement in social and mass media? Will each @ePatientDave’s tweet require a 90 characters disclaimer? I certainly hope not.
2. Why stop at individual patient celebs? While the interactions between pharma and medical device manufacturers with health care professionals are regulated, they stand in stark contrast with the lack of regulation of their interactions with advocacy organizations. This lack of guidance is becoming a real problem, both for the industry and for the organizations. As founder of ACOR I would like to be able to rely on a clear set of guidelines for our interactions with industry and its various proxies, mainly advertising and PR firms. And I am sure the industry would like to be able to rely on verifiable milestones to make sure the funding they provide as educational and patient advocacy grants is used in line with the proposals they received originally. This set of guidelines could certainly be adapted and tailored for the interaction of individual professional patients with the industry.
Look at what a European organization, ECPC (The “Nothing About Us Without Us” organization), has already done. Their code of practice between patients’ organizations and the healthcare industry could certainly be adapted for the US environment and serve as basis for what follows.
3. The Society for Participatory Medicine (SPM) could/should probably be the entity that would champion, generate and maintain these guidelines and code of practice/conduct/ethics. It could also act as an accreditation agency for both advocacy organizations and individual professional patients, in a role similar to the Medical education agency.
Note on my personal potential conflict of interest: although I am a co-founder of the SPM and a former president, I no longer have any relationship with it. I just think this would be a natural activity for the organization promoting vibrant patient activity at every level of the health care system.
Amazing stuff. This comment alone almost necessitates its own dialog. Point 1 is spot on. We’re early but the professionalization of the patient will come with its own baggage that has to be addressed. And I have to admit that I’m bothered by the bias inherent in the social health echochamber. Recognition of this tendency is the first critical step to keeping it from soiling a really good thing.
Thanks for your insightful comments.
Fabulous contribution, Gilles! (Bryan, you poked a magic button here.) That point about advocacy organizations, especially, is right on target – wish I’d noticed it.
I love the idea of SPM perhaps taking the role you describe. Bandwidth! Need leaders with bandwidth! Not so sure about the accreditation role because of the work involved but maybe someone knows how to make that work.
Thanks again, Gilles.
Ah, bandwidth!
It shouldn’t be a problem because this work cannot and should certainly not be done AT ALL by Society board members. Just imagine the immediate conflict of interest if the SPM represented by you, introduces guidelines prepared by you, about how to deal with potential conflict of interests of famous e-patients receiving funding from any industry member
SPM should significantly raise the level of funding it requires and act as a professional organization with employees, some of which in charge of this important activity.
Dr. V, great that you raised this issue. I believe patient bloggers/activists ARE already regulated but most just don’t know it. The FTC passed legislation that applies to bloggers and others requiring 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. See FTC details here: http://www.ftc.gov/opa/2009/10/endortest.shtm
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