Research Ethics (and Conferences)
on October 24, 2009
Conference Talk
Just after the Health 2.0 conference, conversation shifted to upcoming conferences. Notes were compared on twitter and email. "What conference are you going to next?" "Are you going to [name of specific conference]?"
People state the usual reasons for attending (or not) various conferences. "My day job won't pay for it and it's too expensive, so I'm going to have to skip [name of specific conference]". People compare notes on whether or not there are discounted ways to get into particular conferences. Comparisons are made between conferences in terms of relative value. "Too bad you can't make it to [name of specific conference], but you should really try to get to [name of specific conference] next month".
One of the conferences mentioned was the e-Patient Connections Conference 2009. Based on the title and marketing, it sounded promising. I had also heard it was expensive and that no one had figured out how to get a complimentary pass as a patient or advocate. I wondered how "patient-centered" it could really be if patients couldn't afford to attend.
(If you are going to use the term 'patient' or 'e-patient'/'ePatient' in the title of your conference, count on some extra scrutiny from patients and advocates.)
Are There Ethical Guidelines for Marketing Research?
Based on the post describing research that was done leading up to the conference, I have some question about ethical guidelines for marketing research. Are there any? Although this effort was casually described as an 'experiment,' it was research involving real human beings, and the (marketing) research was deceitful in nature.
In social science research, this kind of project is not possible because it is not ethical. Any research, whether it is qualitative or quantitative, must go through a human subjects review to ensure that no humans are physically or psychologically harmed. Research subjects must always agree to participate in advance. If anything resembling deceit is used during the research project, participants must be debriefed immediately afterward.
For many years now, market research has posed a threat to the survival of social science research. How many times have you been asked to 'take a survey' in your lifetime? How many times have you participated in a real study sponsored by a University or a trusted name like the Pew Internet and American Life Project? Personally, I have been asked to respond to hundreds (if not thousands) of 'surveys', but only a handful of legitimate scientific research projects in my lifetime. People are so used to being inundated by market researchers that they refuse to participate in legitimate studies that have undergone human subjects review.
Now that I've been asked a number of times if I am attending the e-Patient Connections conference, I am officially and publicly saying, no I am choosing not to attend the conference. The reality is I simply couldn't afford to if I wanted to, but my underlying concern is not wanting to support research I personally and professionally consider unethical, research that purports to be about e-patients/empowered patients. I'm afraid these terms will eventually be stripped of their original meaning.
Comments
I had some of the same concerns
But I'm a "n00b" in ePatient land as far as the semantics go. I'm definitely not a n00b in real-life ePatient-ism. So, I figured there were things I didn't know. When I saw the cost to go to the ePatient Connections conference, I was floored. Very few patients have that kind of money. Frankly, the HealthCamps seem to be the "real deal", and I hope to eventually make it to one of those.
The problem with semantics and terminology is that it gets "marketed" and no longer becomes personal. Patients are personal, but lately I've been feeling like a piece of meat to be touted, quoted, and frankly "used" instead of being a real person. It's just as bad as when I was a "nobody". I speak of me, the ePatient more than me, personally.
I don't know what is worse, the derision when I was called a cyberchondriac or the pimping now. Can you tell I'm having mixed feelings about where I personally stand right now? ;)
Thanks for speaking up, Cindy. I appreciate it.
Robin
Thanks, Robin
This has been turning into an interesting conversation on twitter. Not everyone had made the connection between Kru Research in general (and particularly this 'experiment') and the e-Patients Connections conference.
A fellow tweep (i.e., a person on twitter) shared a web site with me...on the site I found some internet research guidelines. <-- That is the link, the actual pdf document is available on that page.
Another tweep pointed out language that indicates their intention to continue with this method of inquiry. Ikes.
facts about the conference
Hi Cindy,
I think your major issue is the research project so I’ll write a separate article in response to the concerns some have had over that experiment, but I wanted make sure your readers had additional data regarding the conference.
You use the adjective “expensive” – the academic/gov’t rate was $1,195. For the full rate, we have over 50 partner discount codes that brought the price to $1,695. The average price actually paid per attendee was between those two numbers. I don’t know if it’s “expensive” or “cheap.” Less expensive than TEDMed, more expensive than a Camp.
You mention that “no one had figured out how to get a complimentary pass as a patient or advocate.” Over 20% of all attendees were there with a complimentary pass I paid for myself. These included patients, students, professionals who had recently lost their jobs, journalists and others. I know of no other conference that gives away this many complimentary passes.
You expressed concerned that it wouldn’t be “patient centered.” I’m not really sure what that means. Over 10% of all speakers were patients, which again I think compares favorably to other conferences. But the target audience for the conference was NOT patients, and I never claimed it was. It’s for people who are trying to CONNECT with e-patients, and it’s for CONNECTING healthcare communicators who work in different industries. That has been clearly stated on the website.
The premise of the conference is that we can learn from each other. For example, let’s say you have the goal of reaching patients so their voices can be heard in the debate over health reform. Maybe you could reach these patients by building a community on Facebook, the way Lisa Tate at WomenHeart does? Maybe you could reach patients using YouTube, the way the Lee Aase at Mayo Clinic does? Maybe you could reach them on Twitter the way Marc Monseau at J&J does? Maybe you could partner with a patient blogger to reach their readers, like Kerri Sparling at sixuntilme.com? And I know all of them could learn tips from how you have marketed Open Health.
Thanks,
- Kevin
Thanks for Providing Additional Information!
Hi Kevin,
Thank you so much for responding. I do look forward to reading your post about about the experiment. You are correct; that is my main concern.
Regarding the patient-centeredness and affordability of the conference, this is a general observation of many conferences and this 'criticism' is definitely not directed at the e-Patients Connections conference alone. The Health 2.0 conference is similarly (prohibitively) expensive to consumers and advocates. I don't know the exact percentage, but Health 2.0 also provides complimentary passes to a portion of participants.
In that sense, e-Patients Connections and Health 2.0 are ahead of the game, arguably pioneers of sorts when it comes to patient inclusion in conferences. The downside to doing something new is that it's difficult for patients to figure out if and how to attend conferences when cost is an issue. I've seen people complain (on Twitter) about both conferences being too expensive. For the Health 2.0 conference, I told people that volunteering is an option and provided contact information. (I probably annoy the Health 2.0 staff by doing things like this, but they put up with me!). For the e-Patients Connections conference, I saw similar discussions and heard about the experience of one person who tried to find out how to attend without success.
I think it is clear that the conference was not "for" patients, nor did it need to be. This also goes back to the cumulative issue of conferences that are somehow about patients, yet not for patients. A few months back, Dr. Val received some heat over the conference she hosted in DC in July. At that point, I had already met and interacted with Dr. Val a few times and knew she truly cares about patients. She was caught off guard by any perception of the conference not being 'patient-friendly' enough. I explained to her that it wasn't her conference, per se, but the growing number of conferences talking about patients, yet not actively including them. Her conference just happened to come along after a string of conferences about patients...and had 'patient' in the title. Her target audience was doctors. There's nothing wrong with that.
I see parallels with the July conference and the October e-Patients Connections conference. Both came at the tail end of a series of conferences that dealt, in one way or another, with patients. They both had 'patient' in the title. It's a combination of bad timing and overly-sensitive patients and advocates. Health care reform continues to be debated and conferences continue to be held...but patients are feeling excluded from most of the action.
This is not anyone's fault. I wonder if there is a way, moving forward (based on lessons learned), for conferences to be a little more transparent about how patients are encouraged to participate (either through complimentary passes or some kind of virtual participation)? Let's figure out how to get patients more actively involved.
Cindy