Apr 28 2011

Social Media and Health Priorities

We are in the middle of a social-media revolution, which is rapidly changing the way we access information and engage in public discussion. The change is still incomplete, and all the ramifications are not yet clear – but that change is happening rapidly is clear. Scientific and health care institutions in particular are struggling to deal with these changes, to take advantage of them while not being buried by them.

In the past, to a large extent, scientists would largely talk with each other through journals and meetings, and only when scientific ideas reached a certain threshold would the media and the public take notice. But increasingly social media are allowing for the public to peek at the backroom process of science. Climategate is one example of what can happen when the candid comments of scientists (in this case via e-mail) are leaked to the public. While it seems there was no actual wrongdoing, the e-mails created a scandal that affected the public’s confidence in climate science.

More recently an internal memo among scientists at the Large Hadron Collider (LHC) was leaked, leading to rumors that the Higgs boson had been discovered. But this was a very preliminary interpretation of results, the kind that happens frequently but had yet to be verified. This was just part of the noise of day-to-day research that would normally not filter through to the public attention.

In addition to the reporting of scientific findings, there is also the issue of deciding research priorities. Traditionally such decisions are made in backrooms with scientists and experts carefully evaluating the merits of various research proposals. The process is transparent enough – criteria used, priorities, and decisions are a matter of public record. What we are seeing now, however, is a public increasingly used to full access to information and to participating in two-way conversation through social media. People do not just want to read articles – they want to be able to comment on them and engage with the authors and other readers. They don’t just want to listen in on scientific debate, they want to participate in that debate.

Dr. Roger Chafe and co-authors have recently written a paper discussing this phenomenon – the effect of social media on influencing research priorities. They use the example of the recent controversy over Dr. Zamboni and his liberation procedure for MS (I give an update on the literature on this procedure here). Tremendous public pressure has been brought to bear, especially in Canada, to conduct clinical trials of this procedure in patients with MS. Dr. Zamboni believes that MS is caused by blockages in the veins that drain blood from the brain, and opening up those veins would improve if not cure MS.

This has produced a dilemma for medical researchers. On the one hand, the liberation procedure is based upon highly preliminary evidence and represents a radical new idea that is not backed by basic science. Before a clinical trial would normally be undertaken, more research should be done to verify Dr. Zamboni’s basic claims. This is not just about the efficient use of clinical research resources, but also about research ethics. Before research is performed on humans we have an ethical obligation to make sure that it is more likely to be helpful than harmful, and that the treatment is plausible enough that it is worth the risk and effort of research. There is a certain due diligence that must be done.

However – the liberation procedure genie is now out of the bottle. The MS community is well-aware of Dr. Zamboni’s claims, and there are now anecdotal reports of improvement following the liberation procedure. Many patients with MS don’t want to wait for the due diligence of basic research, they want to take their chances with the procedure – especially those with progressive and treatment-resistant MS. Further, the procedure is becoming available in clinics around the world, so some patients are pursuing the treatment despite the lack of formal research, therefore clinical studies would help inform patients who are seeking the treatment anyway.

There is no easy answer to this dilemma. I feel that the normal process of medical research exists for many good reasons, and should be respected. It may seem cold and calculating – but that is exactly what we want, a rational and detached assessment of the science in order to maximize the use of resources and the benefits to the public. This is preferable to allowing “irrational exuberance” to rule the day.

At the same time, it is quite rational for patients with progressive MS to want to role the dice, even on a speculative new treatment, since the only other option is progressive decline.  But the history of medicine has shown that the vast majority of time desperate patients looking for any chance at a treatment are extremely vulnerable, to charlatans, con-artists, and well-meaning but misguided cranks. Or simply to preliminary science that has yet to be verified. What, then, is the responsibility of the medical community to protect desperate patients from their own desperation?

The specific issue raised by Chafe and others is – who should control research priorities, scientists or the public? It seems that despite what anyone might think, the old days are gone forever. For good or bad, the public now has a front-row seat to the process and wants to participate. In the past public participation was indirect, through their elected representatives, who can set funding priorities, etc. But that is no longer enough.

The scientific and medical establishment has to recognize the current reality. They can fight against it, or they can embrace it. In a separate article Chafe argues that we should embrace it. I completely agree. Scientists and doctors should engage with the social media and with the public through these new venues. Scientists are used to having their own conversations, and this is still vitally important. But in addition they need to get involved with the public conversation – and not just by doling out tiny dribs and drabs of facts and opinions – they need to get their hands dirty and fully engage with the public.

Chafe argues that there need to be mechanisms by which the public can participate in the process of determining research priorities. This does not mean turning over decision-making to popular opinion. Rather, there needs to be transparent and meaningful involvement of representative of public communities, so that they have a real voice. But this voice will still be tempered by the expertise and perspective brought by professionals who have dedicated their lives to understanding the issues at hand. In other words, if we thoughtfully incorporate public participation in the process, we can avoid being bowled over by chaotic public clamoring when hot issues like the liberation procedure emerge (at least that’s the hope).

Increased public participation also means that the public needs to be better educated. There is the generic problem of rampant scientific illiteracy that needs to be addressed. But further this leads us back to the need for scientists and doctors to engage the public with social media and other means, to educate the public about how science and medicine work, and why we have come to the conclusions that we have. Facts are a good antidote to rumors and myth – not perfect, as it is still easy to beguile with compelling misinformation. But all the more reason why we need to make a huge effort to counteract the misinformation.

12 responses so far

12 thoughts on “Social Media and Health Priorities”

  1. locutusbrg says:

    Although I agree with this post I would like to point out the gray area in jumping on board with this idea. For example a local physician (Rhode Island, US), was discussing a case with a colleague on a very popular social network site. Unfortunately the details of the case allowed a friend of a friend on this very popular social site to determine the identity of the person in the case. This led to the physician being publicly humiliated and losing her privileges at a local hospital. A complaint was filed which may have large financial and legal ramifications for her. This was obviously a poor decision by the MD. To my knowledge the postings were not malicious but rather a discussion about cases in the emergency room. No names were used and the MD stated that she thought she was protecting the identity. HIPPA and the associated federal statues have become so complicated it in itself has become a cottage industry. Not saying it is impossible, but in the litigation happy US, sharing data can be very complicated.

  2. titmouse says:

    We need a “how to use PubMed” pamphlet. Example of the type of advice I imagine:

    Drugs are studied in animals before they are studied in humans. The vast majority of substances that look promising at the animal level actually don’t pan out in humans. So unless you want to go on a thousand wild goose chases, you should just ignore animal studies.

    PubMed query results can be sorted by date. If the most recent studies involve rats, you know the herb, supplement, or drug hasn’t actually been subjected to a good human clinical trial.

  3. RickK says:

    Ahhh, but even information on the failed procedures can be very useful. In titmouse’s example, if a compound has an effect in animals, then assuming it is safe in small doses it can be added an alt-med manufacturer’s list of products. And if it is unsafe in small doses, it can still be marketed as a homeopathic remedy.

    Similarly, in the example of MS liberation – if the whole thing turns out to be a complete failure, there will still be a booming industry of liberation centers operating in the US or Mexico and emotional testimonials of successful liberations posted on NaturalNews.

    The beauty of the socially open communications is that there are so many more medical soundbites to turn into sCAM therapies.

  4. Enzo says:

    This is such a difficult situation. As you say, desperation can quickly lead to irrational and careless decision making. If the public is to be involved in the scientific discussion surrounding an issue, extreme safeguards have to be in place. I just can’t imagine the infrastructure necessary to accomplish that kind of rapport. How do you avoid politicalization of science? For instance, if the lay public had a say in climate science funding and direction, it may have concluded that funding for global warming research should be cut based solely on scandal-mongering news reporting following “climategate.” The same goes for the public demanding unsubstantiated MS therapies that other physicians/researchers may consider unethical to push through prematurely.

    Rather, there needs to be transparent and meaningful involvement of representative of public communities, so that they have a real voice. But this voice will still be tempered by the expertise and perspective brought by professionals…

    We already know you can pretty much find a professional that is willing to support any cause (Dr. Oz for alternative med, for example)…So how do you prevent these people from enforcing the public’s misinformed view points?

    Tricky but surely worth working on a solution.

  5. mr. grieves says:

    There is a difference between the public suggesting research priorities and the public dictating how a particular research question should be investigated. I have no problem with the
    public deciding which general areas of science to direct research dollars – to a certain extent. I have a big problem with the idea that the general public should be able tell researchers how to conduct their research. The second case is what is happening now in Canada with CCSVI. The appropriate scientific studies as justified by the available evidence are being completed (and even the justification for this level of research is pushing it, in my opinion). MS patients, their families and to some extent the public at large are not satisfied with this and of course politicians are now getting into the act demanding large scale clinical trials. We cannot allow the scientific process to be distorted based on which treatments sound the coolest or are picked up as a pet issue by W5.

  6. titmouse says:

    Maybe we should crowdsource a technical project –e.g., the design of a suspension bridge, an electromagnetic crane, or a small submarine. Members of Oprah’s audience preferred. We might thank them for their participation by entering their names into a raffle for something shiny. Then we build a scale model of thing and film it as it fails in some amusing way.

  7. leonardo says:

    I would argue the opposite: all this social media business actually stifles good quality research (the internet is around since 1992; so what’s new?). But I have no proof as you have no proof either.
    And on the topic of sending out (into the world) preliminary ‘promising’ results for incurable diseases: I think it only gives false hope to desperate patients and people close to them, but this may not be a bad thing per se.

  8. BillyJoe7 says:

    The elephant in the room:
    Why is it not illegal to use treatments with no evidence (from well controlled clinical trials) of effectiveness?

    If this were the case, we wouldn’t be continually side-tracked by quack remedies such as the removal of blockages in the veins of patients with MS.

    The general public has no expertise and hence should play no role in deciding what should receive research dollars. Research dollars are too precious to be wasted on hypotheses that someone has pulled out of their ass.

  9. tyro says:

    I don’t know of any of the actual doctors here descend to watching “Grey’s Anatomy” on tv but the wife & I watch it together. There has been a subplot where two doctors are running tests for an Alzheimer’s treatment when suddenly the wife of a college becomes ill and wants the drug. They’re at in impasse: they can’t get her into the trial and it would compromise their results if they just gave her the treatment, what to do?! Much anxiety ensues till a spot opens up and they get her in, only to rig the tests to make sure she gets the drug and not a placebo (which is handily labeled on the IV bag).

    I don’t know much about medicine beyond what I read here and in some pop science books but some things were so obviously wrong that even my wife laughed – labeling the IV bags meant no double-blind, doctors talking about the treatment in front of patients would make it easily guessable, other fun stuff like that.

    We’ve talked about how doctors can get so convinced that their drugs or treatment is working that they work with it for years only to learn that it wasn’t helping and probably hurt their patients. In the tv show it seems to be a given that it’s working we see plenty of early evidence. The wife knows this is BS else Alzheimers would have been cured decades ago so we’re both secretly hoping that it does turn out to be negative and they have an episode or two where they look critically at why they believed it was a miracle treatment. But nah, probably not 🙂

    The bigger question I had was whether or not patients in need would be able to get some sort of compassionate exemption and start taking these meds themselves once there was some promising (but not definitive) results.

    In “The Emperor of All Maladies”, there’s a discussion about how many cancer treatments took a lot longer than necessary to evaluate because so many people would refuse to risk getting a placebo and were instead opting for the new treatment. Sometimes drugs, sometimes surgery like radical mastectomy. Is that option still available to patients or has something changed and it’s now harder to get access to drugs under development? Are there some exceptions, are drugs routinely allowed or locked down when they’ve moved on to human trials?

  10. Pberg says:

    There is a cutoff necessary between how much society can sustain. In France no-working/working ratio is approaching 8:1 and projected to reach 6:1 by 2020 as more people go in retirement.

    Since the oldest people use up the most resources one can seriously question the sense of extending lifespan.

  11. maxillo says:

    Many years ago claimed that a doctor was unquestionable, and the patient followed diligently and without question what was prescribed.
    Since many years things had already changed. The patient wanted to know what the doctor prescribed before acting. Today the patient wants to interact and participate in all matters that concern himself more or less directly. If you want to undergo a rhinoplasty (in italian: rinoplastica), you want to consult your doctor first and then the more people that have made that procedure by the same doctor. This is a reality, is the new reality and I think that we will not step back luckily.

  12. maxillo says:

    Message to Blog Administrator.

    Hello Administrator, I’m maxillo user, I have posted a message here in your Blog. I ask you if it is possible to insert the link for “rinoplastica” word, so I could get some benefits from your Blog for the site that I manage. I would be very gratefull for this favor.
    If you accept my request, the link would be so:
    Your article talk about Dr. Zamboni, who is an italian doctor, so the link it is not inappropriate, I think.
    Bes regards

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