Chapter 37: Founding the National Colorectal Cancer Roundtable; Service on the Colorectal Cancer Committee; Perspectives on Bias in Research
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Description
Dr. Levin begins with Chapter by describing how, in the late nineties, he talked with Robert Smith of the NCI about the need to create a forum to discuss activities related to screening. These talks resulted in the creation of the National Colorectal Cancer Roundtable in 1998. Dr. Levin and Dr. Smith co-chaired the Roundtable from 1998 to 2005 (when Dr. Levin stepped down). Dr. Levin talks about the organization and activities of the Roundtable, including the creation of the “Blue Star,” a lapel pin to indicate support for screening, and anti-discrimination support for people with hereditary cancer and for minorities.
Next Dr. Levin talks about his work as chair of the American Cancer Society’s Colorectal Cancer Committee from 2000 to 2008, particularly the Committee’s creation of a set of guidelines for managing patients with average risk for colorectal cancer. He explains the “precedent setting” group of organizations represented on the committee as well as the controversial nature of the guidelines published in 2008 after a year and a half of work. (Critics said that procedures outlined on the guidelines were influenced by the specialties of the individuals on the Committee.) The guidelines are still in existence but are due for revision following a new procedure established by the Institute of Medicine. Dr. Levin explains this procedure, designed to eliminate professional bias from the process. At the end of this Chapter, he explains how attitudes about professional bias in developing guidelines has changed over the past decade.
Identifier
LevinB_06_20130828_C37
Publication Date
8-28-2013
City
Houston, Texas
Interview Session
Topics Covered
The Interview Subject's Story - The AdministratorActivities Outside Institution On Research and Researchers Understanding Cancer, the History of Science, Cancer Research Ethics
Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.
Disciplines
History of Science, Technology, and Medicine | Oncology | Oral History
Transcript
Tacey Ann Rosolowski, PhD:
Okay. I also wanted to ask you about your participation as co-chair of the National Colorectal Cancer Roundtable, and I wasn’t sure what the purpose of that group was and the impact it had.
Bernard Levin, MD:
At about the time, as we were talking yesterday about discussions about public messages, Bob Smith, who is director of cancer screening at the American Cancer Society, and now he’s a senior director, and I had been discussing various types of activities related to colorectal cancer screening, and it was Bob’s idea that the creation of a forum, a roundtable, for individuals interested in colorectal cancer, particularly screening, public awareness, as well as public advocacy for people who had colon cancer and also their management, would be a fruitful idea. He suggested, and I agreed, to be co-chair. We also were able to solicit funding from the American Cancer Society and from the Centers for Disease Control and Prevention. ACS and CDC at that time were neighbors in Atlanta, and there was often a fertile exchange of ideas and even personnel. So that’s how it actually got launched. We had many enthusiastic coworkers, and many people were solicited to becomes members, organizations of various kinds—digestive disease organizations, cancer-related organizations, public advocacy organizations—and many, many accepted the invitation. First, an administrative structure was set up, was supported by American Cancer Society and the CDC. A full-time individual was recruited to actually run the affairs of the Roundtable. And since that time, which dates back to 1998, the Roundtable has met annually. It’s had several changes of leadership, other than Bob Smith, who has remained constant. But I was co-chair from 1998 to 2005, and then Tom Weber took over, and he has recently passed on this chairmanship to Richard Wender. Tom Weber is a surgeon in New York, currently at SUNY Downstate, and he’s head of surgery at the VA Medical Center affiliated with SUNY Downstate. And Richard Wender is professor and chair of the Department of Community Medicine at Thomas Jefferson University. The Roundtable has served as a very significant forum for all sorts of activities related to colorectal cancer and [unclear], the creation of the Blue Star, which was the brainchild of Amy Manela and others, as one example.
Tacey Ann Rosolowski, PhD:
What is the Blue Star?
Bernard Levin, MD:
It’s a small lapel badge that indicates support for colorectal cancer screening and awareness, and it’s used quite widely for this purpose.
Tacey Ann Rosolowski, PhD:
What other kinds of activities related to awareness did the Roundtable spearhead?
Bernard Levin, MD:
Advocacy for individuals who have colorectal cancer, nondiscrimination of individuals who have hereditary colon cancer, stigmatized, advocacy for individuals, minorities with colorectal cancer, Native Americans, African Americans, Asian Americans.
Tacey Ann Rosolowski, PhD:
What form does that advocacy take? I mean, why is it necessary?
Bernard Levin, MD:
Well, it may not be so much now, but there have been obviously been health disparities related to ethnic origin in the United States for many years, related not only to ethnic but also to economic disparities, so the fact that colorectal cancer screening wasn’t as widely available as it is now.
Tacey Ann Rosolowski, PhD:
I see.
Bernard Levin, MD:
Certainly the awareness in minority communities was not as significant as it is now.
Tacey Ann Rosolowski, PhD:
I see. Okay. Until when were you involved with the Roundtable? Are you still involved?
Bernard Levin, MD:
No, I’m not, really. I ended my close relationship with them in 2005. I still have very cordial interactions with them, but I am not actively involved anymore.
Tacey Ann Rosolowski, PhD:
Okay. And have you kept track of kind of what their impact has been since you left?
Bernard Levin, MD:
I think it continues to be significant. I think Tom Weber did a remarkably good job in even further enhancing the influence of the Roundtable, extending its interactions with numerous groups, working with state organizations, working at the community level, at the citywide level. They, together with their current executive director, Mary Doroshenk, have really, I think, been exemplary in their activities.
Tacey Ann Rosolowski, PhD:
I wanted to also ask you about your role as chair of the American Cancer Society’s Colorectal Cancer Committee. When did that take place?
Bernard Levin, MD:
I was chair from about 2000—somewhere in the early 2000s, until October 2008, when the guidelines, current guidelines for screening were published, and I worked in that capacity directly with Bob Smith, but also an interdisciplinary committee comprised of gastroenterologists, surgeons, primary-care physicians, radiologists who were interested in colorectal cancer screening. And we would have an annual meeting to discuss various aspects of colorectal cancer and particularly awareness and screening policy and other aspects of coverage for such activities.
Tacey Ann Rosolowski, PhD:
Hmm. And you mentioned the guidelines. Was that a primary task that you set yourself?
Bernard Levin, MD:
Yes. We had a group consisting of the representatives of the American Cancer Society, the Multi-Society Task Force, which represented three gastroenterology organizations—American Gastroenterology Association, the American College of Gastroenterology, and the American Society of Gastrointestinal Endoscopy, as well as the American College of Radiology—something of a precedent-setting group because these professional societies had never actually worked together. And after a year and a half or so of deliberations, we were able to come up with a set of guidelines for screening of average-risk individuals, and these guidelines were published in CA, the cancer journal for clinicians, also in Gastroenterology and also with Beth McFarland as the [unclear] in the Journal of American College of Radiology.
Tacey Ann Rosolowski, PhD:
Hmm. And what was the—I’m sorry, go ahead.
Bernard Levin, MD:
Go ahead. The guidelines were not received without substantial controversy. Critics stated that we had been too favorable towards colonoscopy. Others accused us of having undisclosed commercial interests, all sorts of unpleasantries associated with this report. I actually believe that the report was as fair as possible and that we were, indeed, balanced. But at the moment, those are the only guidelines in effect—
Tacey Ann Rosolowski, PhD:
Including today, do you think?
Bernard Levin, MD:
—[unclear] American Cancer Society. The subsequent guidelines were also published by the United States [unclear] Task Force. And the American Cancer Society guidelines are due to be updated sometime in the next eighteen months, and this is to follow a new procedure which I heartily endorse, that’s being developed by the Institute of Medicine, and the concept of developing guidelines that are free of any possible professional obligations or conflicts are essentially embodied in the new Institute of Medicine approach to developing guidelines. I certainly think that this process represents an advance on what we were capable of.
Tacey Ann Rosolowski, PhD:
Can you tell me what is involved in that Institute of Medicine approach?
Bernard Levin, MD:
Yes. It sets up various criteria for the development of guidelines, very rigorous preparation, literature preparation, literature search. The committee itself is comprised of nonspecialists. It’s only people who have, in a sense, no relationship whatsoever to the specialties involved. So it’s great transparency. Conflicts of interest have to be either completely avoided or very explicitly declared, so the composition of the group has to be primarily primary care or general internists. The recommendations have to be very carefully reviewed. After the systematic review, there has to be grading of the recommendations. There has to be a very thorough external review by others, and there also has to be a periodic process for updating. So it’s a formal mechanism that Institute of Medicine has worked on, and the American Cancer Society has endorsed this approach, and I, of course, believe strongly that this will be an improvement.
Tacey Ann Rosolowski, PhD:
Mm-hmm. Now, you said when your group was working on the guidelines in the 2000s, you did the best you could. How have things changed to inspire the Institute of Medicine to create these new protocols, and what were the circumstances in which you feel you were working where you didn’t do some of these things?
Bernard Levin, MD:
Well, the idea that one would have specialists actually deciding on the guidelines that involved their own specialty didn’t seem as foreign then as it might appear now, so the idea that generalists should be looking at the recommended procedures, whatever they are—and this doesn’t only apply to colorectal cancer, it applies to any other clinical situation where screening guidelines are promulgated, that could apply to breast cancer and prostate cancer. Those are obviously very high-profile organs for screening. So I think there was a perception that self-interest motivated individuals who were involved in creation of guidelines, such as radiologists would advocate for their particular type of screening, gastroenterologists for theirs, urologists for theirs, etc. And the attempt now is a reaction to that realization, that it’s best not to have the specialists primarily creating guidelines, but to perhaps use them as secondary reviewers, make sure that the facts related to their particular specialty or intervention are correct.
Tacey Ann Rosolowski, PhD:
What are also some changes in the idea that nonspecialists are capable of understanding the issues at work? I’m asking the question because I talked to Steve Stuyck about the creation of some public education initiatives, and he said at first there was a lot of resistance from specialists who said, you know, it wouldn’t be possible for nonspecialists to accurately represent or understand information related to cancer. Have there been changes in that with respect to developing guidelines and screening too?
Bernard Levin, MD:
Yes, I agree entirely with what Steve said, that the initial reaction of specialists was that the primary-care physician didn’t quite see the whole picture. I think with better training of primary-care physicians, with better understanding of methodology and epidemiology, particularly clinical epidemiology, as part of the training of general internists and primary-care physicians, that kind of attitude really can’t be sustained. I believe that if one relies on evidence, clear evidence, then anyone who is trained to understand the process of how you analyze evidence could be called on to accurately provide appropriate guidance.
Tacey Ann Rosolowski, PhD:
Well, I’m at the end of my questions here, and I’m wondering if there’s anything that you would like to say to conclude our conversation.
Recommended Citation
Levin, Bernard MD and Rosolowski, Tacey A. PhD, "Chapter 37: Founding the National Colorectal Cancer Roundtable; Service on the Colorectal Cancer Committee; Perspectives on Bias in Research" (2013). Interview Chapters. 1373.
https://openworks.mdanderson.org/mchv_interviewchapters/1373
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