Will Comparative Effectiveness Research Really Make a Difference If the Public Doesn’t Want It?

Not long ago I was lucky to be invited to a New England Healthcare Institute discussion entitled “From Evidence to Practice:  Making Comparative Effectiveness Research Findings Work for Providers and Patients “ in Washington, DC.

How to disseminate and implement Comparative Effectiveness Research (CER) so that patient care is really improved was the first topic tackled by the expert panel and the moderator, Clifford Goodman of The Lewin Group.

The target audiences for CER findings include: patients, disabled patients, providers, policy makers, health plans, medical device companies, pharmaceutical companies, hospital administrators, academic researchers, community physicians, professional societies, and regulators.

Michael McGinnis, MD, of the Institute of Medicine, offered clusters as a way to organize these different targets:  Cluster 1 (patients, providers, policy makers), Cluster 2 (control levers like payers, purchasers, system managers, professional societies, regulators) and Cluster 3 (researchers and those concerned with methodology).

Seth Frazier, Vice President of Transformation at Geisinger, was the first of many to point out the gap between the academic literature of CER and what patients and providers need at the point of care.  He noted that providers need actionable recommendations that can be integrated into the flow of the clinic and hospital and that much of the evidence-based medicine product is not usable in this practical way.   This observation reminded me of the gap between the public and the health care experts that Drew Altman of the Kaiser Family Foundation documented so effectively and the Kristen Carmen Health Affairs survey that said patients regard evidence-based medicine as a barrier to what they want.

Aanand D. Nail, MD of the Michael E. DeBakey VA Medical Center, spoke about this gap by making the observation that CER is provider-centric and that it should be patient-centric in order to reach the key audience.  He likened it to redesigning the user interface and admitted that he did not understand computers, but the computer user interface was simple enough that he could function.  Jean Slutsky of AHRQ said that patients do not understand the language of CER and that a uniform vocabulary was needed to make sure the different groups could communicate with each other.

Lyn Paget of the Foundation for Informed Medical Decision Making offered a way to decrease the gap between CER experts and the public by describing FIMDM’s two-pronged approach of scientific evidence and focus groups of patients who have experienced the disease.  Goodman mused that this window into the patient experience could be informed by patient stories, focus groups, and the evidence itself.

The only panel member to mention social media in passing was Kathleen Buto of Johnson & Johnson.  I was surprised that the panel did not talk about the many Health 2.0 tools that patients are using to share knowledge and even conduct their own research without the help of the CER experts.  Inclusion of PatientsLikeMe, DiabetesMine, Sophia’s Garden, or CureTogether would have emphasized the point that the Internet would be an excellent window into patients and an ideal dissemination tool for CER.  Perhaps they should have invited Clay Shirky (NYU professor and author of Here Comes Everybody and Cognitive Surplus) to be the expert to talk about how amateurs are now able to perform functions using professional tools, or Craig Newmark of CraigsList to talk about how newspapers are having trouble with their business model.

Dan Leonard of the National Pharmaceutical Council and a former TV journalist did make the important point that communication in the real world is using a shrinking platform.  The 90-second TV segment is being replaced by an even shorter sound bite or Tweet.  (It was perhaps revealing when the panel did not know that Twitter is 140 character long messages; they said it was 120 character long).

McGinnis of the IOM offered a useful classification of four dimensions of translation of CER findings:  quality of the study, applicability of the study, limitations of the study, and clinical decision to be made by the doctor and patient.  The discussion added two more useful dimensions:  the political context and the accountability of the CER community.

The last two additions to the McGinnis classification were needed because of the discussion around the public outcry over the mammogram recommendations.  Sam Nussbaum of WellPoint was not surprised by the public uproar because we had been telling women for two decades to make sure they scheduled their mammograms.  Many used this discussion to emphasize the point that the public will never understand the levels of uncertainty in science and that need for a redesigned user interface.

Paget said the entire mammogram affair was “a cry for shared decision making.”  A very helpful discussion ensued where it was noted that shared decision making is different in screening settings, surgical settings, emergency settings, primary prevention settings, and end of life settings.

Kay Dickersin of the US Cochrane Center noted that the health care community does not hold its members accountable when they neglect what is best for the patient and lobby for their own special interest.

Two stories nicely captured the challenge of bridging the gap between the CER community and the public.  Steve Pearson of the Institute for Clinical and Economic Review described a seizure medication study that was zeroing in on how many seizures a child had a week.  A parent of one of the subjects noted that the drug that prevented the most seizures also made her child “a zombie” who could not stay awake in school.  The study would have been better if the patients and their families were involved as early as possible to identify questions that matter to the patient, not the researcher.  Nussbaum described a Mayo Clinic Proceedings study of 56,000 children where the conventional wisdom that the asthma patients needed to use their inhaled steroids more to avoid ER visits and admissions was upset by the finding that oral therapies were better at avoiding ER visits.  What the providers considered a second line therapy was moved to a front line therapy in the real world.

I came away from the conference excited about both the challenges and potential of CER.  It looks like the consolidation of health care providers, hospitals, health plans, pharma, and medical device companies will create a real need for aggregators that can make sure that the shared decision making tools are shared throughout American and not just in the islands of excellence like the Mayo Clinic, Intermountain, Geisinger, and other leaders in the field.

8 replies »

  1. Ken–
    You write that “Many used this discussion to emphasize the point that the public will never understand the levels of uncertainty in science . . . ”
    The shared decision-making materials that Lyn Paget talks about are very effective in helping a patient realize the uncertainty, and that in many cases, there is no “right answer.” Often, decision-making is all about understanding the odds–the risk of death, the risk of
    side effects, and deciding which odds you like better.
    Ultimately, we must educate the public about the levels of uncertainty in science. I realize that confronting the ambiguity makes people uncomfortable, but it’s the only way thatthey can understand medicine. For decades we’ve taught people that the doctor knows best–and we’ve suggested that anything can be cured if the the doctor is good enough. He should KNOW what to do.
    This suggests that if somone dies that means that someone made a mistake.
    I agree with Lyn–the mammogram controversy cries out for shared decision-making. For too long, we’ve told women that if they just have annual mammograms, they’ll be safe. This just isn’t true. And, in the case of mammograms, we now know that they can do more harm than good (when detection of pseudo-disease leads to a mastectormy or lumpectomy.)
    The last two stories you tell serve as a reminder that patients (or in this case the parents of patients) often have information that the doctor doesn’t have–about the effects and side-effects of treatment, and how their own children react to the treatment. If we let patients know that doctors are often uncertain, patients will be more likely to share their observations with the doctor, realizing that he can’t “know everything.”
    Finally, shared decision-making is available only in those islands of excellent because, sadly, too many doctors don’t want to hear about shared decision-making.
    Insurers are enthusiastic about the product (the pamphlets and videos). Many doctors are not. It is not just that they (or staff) are not paid for the time it takes to engage the patient in the process. Many are concerned that too many patients will decide against elective tests and surgeries. (And reserach shows that they are correct. Patients tend to be less enthusiastic about surgery than surgeons. Patients are the ones who will risk the side effects, suffer through the rehab, etc.)
    A couple of years ago, I was invited to speak to the Massachusetts Medical Assocation, and I chose to talk about “shared decision-making.” An organizer of the conference told me: “Our doctors don’t want to hear about THAT!” She was right.
    We are going to need more incentives if we want doctors to adopt shared decision-making. The state of Washington has passesd legislation that makes it quite difficult to sue for malpractice if the doctor has taken the patient through the shared decision-making protocol, using approved materials. That, in addition to paying for the time, would be a good start.

  2. “The public is ready for CER.”
    “The public has not the foggiest idea about CER. Don, what do you reccomend for acne?”
    Don’t patients submit to CER when they visit a doctor? I always hear how docs are trained to use and use science based evidence to administer healthcare. I always hear how docs think chiropractors are quacks because they don’t think Chiros use science based methods, or at least ones docs understand. I agree the public doesn’t have the foggiest because it’s hidden in the doc”s assessment and treatment, but just mention that the government, or a research study “showed” what treatment works best and the public thinks they’re being pushed closer to the grave by some conspiracy. I think too many docs use CER, except that for those CER means, “Committed to Earnings Revenue”.

  3. The public has not the foggiest idea about CER. Don, what do you reccomend for acne?

  4. Thank you, Kent Bottles for the excellent review of the recent CER discussion.
    I’m delighted that you came away with excitement for the challenges and the potential of CER.
    My critique of the piece is with the implied notion in its heading that “the public” doesn’t want CER. I strongly differ.
    You cite the recent Kristen Carmen Health Affairs article which reports on a survey of consumers on CER. While I don’t doubt that the survey was a quality survey, the interpretation of results seemed to be less than evidence-based. Let me provide an example from the article:
    • Consumers believe that more costly care is better. A sizeable number of survey participants (33 percent) agreed with the statement “medical treatments that work the best usually cost more than treatments that don’t work as well.”
    Alternative viewpoint: Most people have learned from experience that for many things they purchase you generally do “get what you pay for”. Ask a workman about his tools and you will learn that the sweet taste of low price sours quickly as a low quality purchase fails. You would think that such “pay more to get good quality” logic would also apply to something as critical to your life as medical care.
    However, the survey reports that only a third of responders agreed with that “get what you pay for” concept in medical care. Why did Carmen highlight that third of responders and not the two thirds who did not embrace the notion? And, why did you choose to carry forward that question in the title to your blog piece?
    If it is just to get more people to read it, I can understand. But the choice does not give justice to the majority of the public who are now ready to get more engaged in their health care decisions.
    Over the past few years, tens of millions of people have turned to our patient decision aids for support in making treatment decisions with their doctors. We currently have 158 decision aids that are based on the best comparative effectiveness research available to us. As the research base expands there is no doubt that millions more consumers will benefit from it through decision tools like ours, those of the Foundation for Informed Medical Decision Making and others.
    The public is ready for CER.

  5. There needs to be CER studying the impact of CPOE and other EMR devices on deaths, injuries, and hazzards. In the meantime, report all such incidents (and there are many) to MedWatch of the FDA using online form 3500A,

  6. Translation? Hell, Kent, I never even see the originals. This reminds me of the evidence-based research studies, too. As with them, my question is, when have doctors ever tried to share evidence-based research with patients? All I ever get is their version of the best-results. Even with new or incompletely tested procedures, all the patients usually hear is that it’s new or incompletely tested or that the insurance company “doesn’t cover it, yet.”
    If I’m wrong–if there are patients out there with a different perspective on CER and other evidence-based testing, I’d love to hear it.