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AACR Scientist?Survivor Program's Double Arrow Cuts Both Ways

Rosenthal, Eric T.

doi: 10.1097/01.COT.0000292597.50977.f4
Advocacy Insight

It was a grand experiment, with moments nearly worthy of its own reality television show…or perhaps The Twilight Zone.

Take 50 cancer survivors and advocates from as far as Estonia and Nigeria.

Place them in a Bethesda-based conference hotel with an ad-hoc faculty of 31 distinguished cancer researchers and other experts, as well as a sprinkling of professional society staff, and one observer of the cancer scene.

Provide them with plenty of food, and an ambitious and intense, highly structured syllabus during a non-stop five-day period.

Title the experiment, “The Inaugural Scientist↔Survivor Program Educational Workshop—Forging Partnerships to Accelerate Progress Against Cancer.”

Mix, wait, and see what happens in the process, especially when the process becomes every bit as important as the content itself.

The experiment was the next step in the American Association for Cancer Research's ever-evolving advocacy program, which officially began when the Scientist↔Survivor Program made its debut at the Association's 1999 annual meeting.

That program, which has been covered in this column before, went from being a small subset of a massive international meeting to its own stand-alone self-contained entity; and what was to occur during those five days was quite unexpected, especially to the faculty of scientists who found themselves as much student as mentor, making the program's interactive double-arrow logo a much more meaningful metaphor.

For purposes of full-disclosure, I was initially invited as a reporter, but as events unraveled and took on a life of their own, I occasionally found myself in a role that transcended the traditional fly-on-the-wall status, as I became a part of what was to evolve eventually.

I seriously doubt that when AACR CEO Margaret Foti, PhD, sat down with Gwen Darien, Director of AACR's Survivor and Patient Advocacy Program; and the Workshop's Organizing Chair, Michael A. Caligiuri, MD; and Co-Chairs Ethan Dmitrovsky, MD, Kathleen W. Scotto, PhD, Ngina Lythott, DrPH, and G. Bonnie Feldman, the group anticipated that the inaugural educational program would have moments reminiscent of a 1960s sensitivity-training course, revealing raw emotions as much as intellectual insights.

But it did, and here's a glimpse of what happened.

We arrived on a Saturday afternoon in June, and were obliged to stay until the following Wednesday—a time when many of the scientists were on deadline with grants due by the end of the month.

Still, they made the commitment, as did the survivors and advocates, to attend the full session, even though many had to sacrifice vacation or personal days to do so.

For the first day and a half, everyone was polite and well mannered, as the program unfolded.

Presentations were made on such topics as the Introduction to Cancer Biology and Cancer Research, Cancer Drug Discovery and Development, and Translational Research, by such speakers as Dr. Caligiuri, Director of Ohio State University's Comprehensive Cancer Center; William G. Nelson V, MD, PhD, Professor of Oncology, Urology, Pharmacology, Medicine, Pathology and Radiation Oncology at Johns Hopkins University School of Medicine, as well as Chair of AACR's Science Policy and Legislative Affairs Committee; Lynn M. Matrisian, PhD, Professor and Chair of the Department of Cancer Biology at Vanderbilt University School of Medicine and AACR's Immediate Past President; Richard Pazdur, MD, Director of the FDA's Office of Oncology Drug Products; Anna D. Barker, PhD, Deputy Director for Advanced Technologies and Strategic Partnerships at the NCI; and William N. Hait, MD, PhD, Director of the Cancer Institute of New Jersey.

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Tectonics Shifting

But somehow, by the third day, the tectonics of the playing field began shifting as a distinct minority of advocates' tones and manners transformed to something less than friendly, if not hostile, while the researchers maintained their polite, and now increasingly politically correct, demeanors, some figuratively taking punches with their hands tied behind their backs while carefully walking on eggshells.

Figure. E

Figure. E

Both Monday and Tuesday had their emotional highs and lows.

David P. Carbone, MD, PhD, Professor of Medicine and Cancer Biology at Vanderbilt University, unexpectedly dispensed with more than half of his scientific talk on the Impact of New Technologies on Cancer Therapy to share his highly personal story as a cancer patient and survivor.

His revelations regarding dealing with lymphoma while handling a marital crisis and raising four young children drew sympathy and applause from scientists and survivors alike, as well as an empathetic embrace from one overwhelmed advocate.

Lectures and panel discussions continued that day on Cancer Genetics and Genomics, and Survivorship, and featured, among others, Kenneth G. Buetow, PhD, Director of the NCI Center for Bioinformatics and Project Leader for NCI's Cancer Biomedical Informatics Grid (CaBIG); Ms. Feldman, Founder of the Brain Tumor Society; Lowell E. Schnipper, MD, the Theodore W. and Evelyn G. Berenson Professor of Medicine at Harvard Medical School and Chief of the Division of Hematology/Oncology at Beth Israel Deaconess Medical Center.

Then, by mid-morning Monday, polite decorum began to dissipate as certain survivors began baring teeth and challenging scientists not to speak among themselves; to make talks directly relevant to survivor needs; to abandon basic research funding in favor of increased access programs; to advocate and lobby, despite holding government positions; and to watch their words when referring to patients.

The tension continued during the next day's presentations and discussions on Challenges and Controversies in Clinical Research; Research Funding, Public Policy and Advocacy; and Team Science, which included Drs. Dmitrovsky and Nelson and Yves A. De Clerck, MD, of Children's Hospital, Los Angeles, Philip S. Schein, MD, Schein Group; and Doug Ulman, Director of Survivorship for the Lance Armstrong Foundation and Chair of the NCI Director's Consumer Liaison Group (of which I am a member).

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‘Failing Therapy’

One distinguished physician scientist was chastised when he mentioned in passing that “the patient failed therapy.” His talk was interrupted and he was read the riot act, and then told that the correct phrasing should be the “therapy failed the patient.”

Obviously upset, the oncologist apologized, but then still received a continued, unnecessary tongue lashing lecture on how “words matter.”

Other researchers were threatened that they would be “messed with,” and asked heatedly why they were discussing the concept of “team science” when survivors were not mentioned as part of the particular team.

Although only a small number of survivors were demonstrably rude, the effect caused discomfort and embarrassment among most of the workshop participants, increasing fear that this behavior might lead to greater misunderstandings and stifle rather than foster partnerships.

The dynamics of the moment caused some participants to slip out of the plenary sessions to examine and discuss what was happening, and what could be done to undue the damage.

Some scientists were disturbed that a few advocates seemed to hold them in contempt, thinking they were working in government or academia for the money, and perhaps holding back on some scientific findings.

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Mutually Exclusive?

Another underlying disconnect was that a few survivors considered the development of molecularly based medicine mutually exclusive from dealing with health disparities, as if government money should—and could—be shifted by the scientists themselves from discovery to delivery.

The display of raw emotions was especially unnerving.

Peggy Devine, a breast cancer survivor, research microbiologist, and Executive Director of the Cancer Information and Support Network, said she had been at many meetings with some of the other survivors and hadn't witnessed the rudeness before.

“I think many of us coming into this meeting assumed it was a safe environment, and felt free to speak. It may have been that those who carry their frustration around with them everywhere felt a little more comfortable here, and things just came out,” she surmised.

Another observation was related to the difference between the survivors whose cancer experience was behind them, and those who were currently undergoing treatment for metastases or recurrences, for whom time and progress were a little more immediate.

Kathy Scotto, PhD, Senior Associate Dean of Research and Professor of Pharmacology at the University of Medicine and Dentistry of New Jersey, Robert Wood Johnson Medical Center, Cancer Institute of New Jersey, said she switched from more basic science to translational drug-resistance research years ago because she had met patients and wanted her work to be of more direct value for them.

“I don't think all advocates understand the impact they can have on a personal level by just telling us their stories,” she said. “It may also have been that their expectations of us went beyond our abilities.

“We also have our frustrations, and I was touched by what happened on a human level. Yes, it was painful and unexpected, and we have to be careful that there are certain things you don't say to people. But we also have to get past the distrust. I felt betrayed and shocked that I was distrusted, especially since I thought we were all on the same team.”

The disparity between what was being portrayed by some as two separate teams brought this reporter to the microphone when one advocate was venting heated anger at a speaker who had stepped in at the last minute to speak for a colleague who had taken ill.

Perhaps because I was not officially on either of the teams, and would be writing about the experience anyway, I announced I'd give the audience a bit of a sneak preview of this column, by noting that the meeting had some of the rudest moments I'd encountered at a professional workshop, making it an uncomfortable experience for all involved.

I pointed out the faculty consisted not only of celebrated researchers and physicians, but dedicated teachers who, like the majority of appreciative advocates, had given up their personal time to strengthen understanding and collaborative efforts.

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Unequal Dynamics

The dynamics of the meeting had turned decidedly unequal, with some survivors venting rage and criticisms with immunity and impunity, while the scientists had to listen quietly, constrained by professionalism and sensitivity to not wanting to offend.

The remarks were met with applause and approval voiced by both scientists and survivors, who were relieved the tension had been broken.

The remaining sessions went more smoothly and, at the concluding workshop where future action plans were shared, highly emotional and positive testimonials were provided by both researchers and advocates, most of whom sincerely welcomed the human face expressed by those on the other end of the event's double-arrow logo.

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Achieved: Emotional as Well as Intellectual Partnership

Dr. Scotto, one of the Workshop's co-chairs, also noted by the end of the encounter session on the last day that the researchers and advocates had made progress in working together toward a common goal.

“We achieved it, but not through the pathway we had anticipated,” she observed. “It's now more than just an intellectual partnership, it's an emotional partnership that turned out to be stronger.”

© 2005 Lippincott Williams & Wilkins, Inc.
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