Time for a quick crowdsourcing exercise.
In a few hours Lee Aase of Mayo Clinic (Twitter: @LeeAase) and I will be in a workshop on how public media can help with public health. We'd like your thoughts.
The workshop is at the Paley Center for the Media in Manhattan (they also have a branch in LA), and is funded by a small grant from the Ford Foundation. The issue is to consider, in this time of great pressure for healthcare and significant change as the media world goes digital and social, how public media can help.
Excerpt from the invitation letter (emphasis added):
_____
Research shows that one of the major contributors to health inequities and poor health is insufficient access to health-related information. ...[a panel] concluded that “[i]ntransigent and growing health inequities call for new thinking about the role of public health in creating the conditions in which all people can be healthy.” Among many recommendations, the Panel called for new community partnerships that would increase access to health information and community health-related outreach.
...
This workshop will look at some critical questions that have far-reaching implications for the health care industry, general public, policymakers, private media, and public media.
- Where does the market fail in reporting on health-related problems and solutions and how can public media fill this gap? [market=normal commercial business processes]
- What role should different public media institutions, including social media and applications, play in health reporting?
- What is the proper role of public media in serving as a platform and clearinghouse for health-related information and data?
- What are public media’s special competencies, potential contributions, in health outreach (informational and other)?
- What structural changes are necessary in terms of technology (e.g., bandwidth), partnerships, funding to enable public media entities to play a more productive role in the dissemination, collection, and creation of health information?
Your thoughts on any of those will be appreciated!
Dave,
ReplyDeleteSo glad that you are having this conversation. Let's put the info out there:
1) the market assumes that folks who do not have the information are not economically viable (and individually they may not be, but together, they make up alot of money) and therefore, they don't have a need to get to ther information. There's still minimal presence of Blacks and Latinos in online health communities. Why is that? And we do have internet access?
2) The public media needs to keep it real when reporting the health news.
Before going straight to public media solutions, we should first examine the problem. The problem is much less that good therapies are unknown by today's practitioners, instead that new, profitable, but ineffective therapies are driving out old, proven ones. Talk to Eric Ahlskog of the Mayo Clinic about Parkinson's drugs. Look at antidepressants or hip and knee replacements. When I last was working in orthapedics (1999), the first hip replacement (which was 35 years old) outperformed the average hip replacement. Marketing of medical products and services to patients and providers paid for by insurers drives the economics the wrong way. The problem is that social media tends to be terrible at taking the long view, and the latest's week's worth of tweets, blog posts, and facebook statuses can drive medical decisions that will affect patients for decades. To inform, the experience of any one patient needs to be aggregated with others -- no matter how informed a patient you are, your experience is that of a single patient. Another patient's choices should be driven by the median experience much more than by the experience of the patient in the community who speaks the loudest. Carl Sagan (his birthday is today) once cited a study of the healing power of the waters of Lourdes: of the cancer patients who went to Lourdes, the death rate was higher than the control group. What happened was that those who survived trumpeted the power of the waters, while those who did not remained silent. One can imagine the draw of Lourdes in the age of public media -- those who are failed by a cure often have little energy to tweet about it.
ReplyDeleteThe worst thing that could happen would be for medicine to digress to the state that politics has: parallel play of groups of like-thinking individuals who exclude the arguments of the other side. I don't know what the correct answer will look like, but I do know what the wrong one does: it looks like the way the internet handles politics and gadget reviews. The last thing we need for medicine is a "hot-or-not" for treatments. I suspect that the correct answer is to take steps from the way that traditional medicine is handled towards openness than a radical restructuring. Remember, first do no harm.
Say more about "keep it real"? Do you mean "be honest"?
ReplyDeleteIs there non-minimal presence of blacks & Latinos in online communities outside health? If not, where do they accomplish what Caucasians & Asians do online?
Sorry, got cut off.
ReplyDelete2) con't: When I say "keep it real" - let's talk about diseases that are prevalent in poor communities and let's have forums around such topic. With thoughtful considerations of the populations who don't have access to the health information, it's not enough to just have the conversation -- it's gotta be grassroots style and start door knocking, in projects, favelas, on the bus when you see a young or middle age cat playing on the phone... whatever. Point is - if folks don't have access, then we gotta go to them.
3) Haven't figured out what that means yet...
4) Special Competencies? it's public, so everyone is entitled to it. we may get a lot of junk, but we will reach critical mass, we just gotta go to them physically.
5) I think we need to develop a position that is similar to a social worker, but for health. Someone who goes to people's houses and teach them about health information. Teachers do it! They visit their student's houses and community to build a stronger relationship, to create vested interest and show value of the work they are doing in the classroom. For whatever reason, the health community takes advantage of our "human right to save ourselves" and expects us to go to them.
Thanks, Dave!
Great contribution, Peter. Thanks. I'm already thinking along similar lines re market forces - for instance Christensen points out that perversely in healthcare innnovation *increases* costs. (One hospital gets the newest scanner and everyone else has to get one too.) This is guaranteed until someone innovates a new *business model*.
ReplyDeleteWondering, will this evolve faster if citizens have broader access to info on outcomes and costs? Is it POSSIBLE for public media to play a role in that?
Dave,
ReplyDeleteFirst, I am not 100% certain how you are defining "public media". Do your mean government insitutions and publicly-funded institutions? There are lots of hybrids in the mix. Anyway, I'm going to focus on goverment sources in my comments.
IMO, government publications should focus on providing accurate and well-documented primary sources of data. I like the quote from today's Boston Globe about a new iPhone app for T riders. The app is built on data made available from the state transportation agency (as of last week, the Mass Dept of Transportation). Here's the quote: "The beauty of releasing the data is it frees us from having to develop the applications ourselves,’’ said Chris Dempsey, an assistant secretary in the Massachusetts Executive Office of Transportation. “That’s expensive and something that we’re not very good at.’’
http://www.boston.com/business/technology/articles/2009/11/09/iphone_app_has_public_transit_down_to_a_t/
There are lots of examples of providing base data in healthcare at the federal and state levels. E.g., AHRQ funds and collects tons of data. Certainly more could be done to promote the availability of the data and facilitate further analysis of the underlying data. But, progress is being made, esp. through the data.gov initiatives.
I have more to say, but not enough time right now. Key points, public media should focus on compiling credible data, promoting the existence of the data, and making the data publicly available for no cost and in an open, well-documented format. In addition, there should be guidelines to private media to reference the underlying data sets.
Final comment: over time, the sophistication of the "primary data" provided by public media will grow, which will enable development of better tools and information resources.
Obviously, some public health bulletins and publications that promote health literacy need to be part of the mix, too. But, I think the greatest need is in serving as the "platform and clearinghouse" for health information/data.
Look forward to reading more about the workshop.
Cheers,
Janice
Hey Dave,
ReplyDeletePerhaps, but I am interested in the online health inequity aspect and how public media can help bridge that gap. I agree with Peter, the worse that can happen is politicizing and exclusion -- and with the internet that would be very difficult to accomplish, yet it's occurring. Folks in appalachia aren't weighing in on discussions, think we can do a healthca.mp where we teach online health literacy?
Perhaps, do a model like this? I need to talk to a whole mess of WOMEN who are talking about this already. Excuse me, while I pick up the phone ;)...
In case anyone didn't spot it in Janice's comment above, look - from today's Boston Globe:
ReplyDelete"The beauty of releasing the data is it frees us from having to develop the applications ourselves,’’ said Chris Dempsey, an assistant secretary in the Massachusetts Executive Office of Transportation. “That’s expensive and something that we’re not very good at.’’
This echos what I said in Toronto and many blog posts the past year about liberating the data so we can enable innovation and mash-ups. So true!
pnschmidt, your comments about the market driving *profitable* change instead of necessarily *improving* care will be quoted. Thanks much.
ReplyDeleteAlso remember the This American Life episode about healthcare. If there is one opthamologist in town, s/he does cataract surgery when a paient hits 20/400. If there are two, they probably drop to 20/200. Three, and you get surgery at 20/80. The problem is, the more providers there are, the more likely another provider will do the surgery a little bit earlier and steal the revenue -- and patient satisfaction. I've seen this in orthopaedics: joint replacements are done when the patient can't jog any more, rather than when s/he can't walk, as the revision surgery is 15 years away.
ReplyDeleteOne of the most amazing things that we see now days is the dramtic increase in the placebo effect in clinical trials: in my field, Parkinson's disease, they will typically start every patient on placebo in a "wash in" period to see the change from placebo to drug. Given the scarcity of paradigm-changing new drugs on the market, this psychological thrill of being in a trial is a sign that these patients -- who tend to be the most informed and connected -- are not realistic about their expectations. The realist would understand that there is a 50% chance they are going to be on placebo, and a 90%-plus chance that the study drug will offer no major benefit over existing therapies. Still, the increase in the placebo effect over the past 10 years is well documented.
Given that the placebo effect is a genuine and measurable benefit, maybe blissful ignorance does have its upside!
Fabulous contributions, Peter. I'd never seen that the placebo effect is increasing, nor that it happens more (if I understand correctly) with informed / engaged patients.
ReplyDeleteOf course I want to also find out how to take the "active ingredient" in the placebo effect, and harness that! But that's a separate subject.
btw, I didn't know about that This American Life episode. That's blogworthy all by itself.
ReplyDeleteIndeed, a costly ($ and life-wise) dysfunction in the market.
"Given the scarcity of paradigm-changing new drugs on the market, this psychological thrill of being in a trial is a sign that these patients -- who tend to be the most informed and connected -- are not realistic about their expectations."
ReplyDeleteInteresting observation. Is the "90%-plus chance that the study drug will offer no major benefit over existing therapies" just relating to Parkinson's Disease?
I'll search out the American Life episode (albeit that is more relevant to private medicine than UK' NHS - however, I should probably look around for information on that).
It's generally true that at least 90% of human trials (phase I, II, or III) will not result in a drug that provides a meaningful benefit, not just for Parkinson's disease. I'd say 90% is a conservative estimate. It's hard to assess accurately as much of the data published is hard to independently analyze. For more on this, read: http://bit.ly/3Tukr8 -- this should link to a New York Review of Books piece by Marcia Angell, former editor of the NEJM. she writes, "It is simply no longer possible to believe much of the clinical research that is published...."
ReplyDeletePeter, you obviously didn't spot my post on e-patients.net, A quote I won't soon forget. :)) (It's the Angell thing.) Or Richard Smith, BMJ editor, in his essay in the new Journal of Participatory Medicine, saying “most of what appears in peer reviewed journals is scientifically weak.” Zowie.
ReplyDeleteBUT, Smith's talking about the weakness of the peer review process, not the placebo effect. If you can give me a link to info on the increasing placebo effect it would be terrific.
No rush, though - today's meeting is over.
Great to meet you, btw. You sound like someone who could be reviewing articles for JoPM - seriously. As Smith's article says, we're looking for a new model of how to arrive at reliable conclusions.
Seriously. Help.
I'd be happy to help with JoPM -- I did a big participatory medicine project with Kaiser Permanente in the early 2000s, and covered the area as an investment banker before coming back to the light. My bio is on
ReplyDeletehttp://www.parkinson.org/Page.aspx?pid=659 You can DM me on twitter to connect.
Nice to see a front page Crain's Chicago Business article this morning on a Urban Doc who practices with solely Medicare/Medicad patients "One Man Safety Net". This got me thinking "Americore" focuses on getting young teachers to the underserverd - perhaps a similiar program for medical providers?
ReplyDeleteDanielleB--there are several such programs, most of which offer some sort of medical scholarship in exchange for a commitment to serve in a rural or underserved community later. My uncle did one such program for dentistry.
ReplyDeleteHi Dave
ReplyDeleteHere is a brilliant article about how the placebo response is getting more marked by @stevesilberman (definitely worth a follow)
http://www.wired.com/medtech/drugs/magazine/17-09/ff_placebo_effect?currentPage=all
But he writes that part of the reason this might be happening is that drug trials are moving to developing countries where participants might have higher expectations of any medical treatment.
Hope you enjoy.
PS I love the comments from medicineforthemasses about overcoming the digital divide. That to me is the biggest challenge for those of us working in poorer communities.
ReplyDelete