Professional societies—created to serve members with common interests—are often faced with balancing societal responsibilities between members and the public. Although these responsibilities can often overlap, sometimes they conflict, causing a disconnect between the needs of the association and the rights of the public.
I recently encountered such a situation when registering as a member of the media for the American Society of Hematology's Annual Meeting last December. Although I was granted press credentials to cover the meeting, the Society denied The Group Room cancer talk radio show (for which I serve as news and editorial director) permission to broadcast from the event.
The Group Room has been nationally syndicated since 1996, and every Sunday afternoon reaches a radio audience of more than half a million listeners as well as countless others who hear the show simulcast on the Internet. It is produced by a not-for-profit organization, Vital Options International, and supported by educational grants from industry sponsors.
Listeners include patients and survivors and their friends and families, medical and health care professionals, cancer advocates, and everyone else “touched” by cancer, either personally or through others. Hosted by Selma Schimmel, the show always includes staff oncologists and a therapist, and all calls are screened by licensed oncology social workers.
AACR has had a four-hour public forum and “meet the experts” session at each of its annual meetings for the last several years, and ASCO has a Web site specifically for patients called PeopleLivingWithCancer.org.
Guests have included a virtual “who's who” of oncology experts throughout the world—and listeners have had the opportunity to speak directly with them about the latest news and information in cancer research, prevention, and treatment.
The show has broadcast live every year since 1998 at ASCO meetings, and has been a fixture at most major cancer conferences in the United States and Europe for the last several years. In 2000 I contacted ASH about registering The Group Room production team for the Society's annual meeting that year in San Francisco.
After being told that any taping or broadcasting was forbidden at the meeting, I asked if television news coverage would be allowed. I was told that it would be, but no one at the Society could explain why this wasn't inconsistent.
So when I asked again for last year's meeting, I wasn't totally surprised that ASH denied The Group Room's request to broadcast live from the convention center in Philadelphia. However, when I then requested a room with two phone lines—so our hematologist guests could call in live to the Los Angeles-based studio from where the show would be produced—I was told that that too would not be possible.
To facilitate the interviews, The Group Room opted to transport the researchers to the show's suburban-Philadelphia radio-station affiliate.
The Problem: Follow-up Calls from the Public
In subsequent discussions with ASH leaders at the meeting, I learned that the underlying cause for the prohibition was that ASH did not want to deal with possible follow-up calls to the organization from the public who may have listened to the show.
When I pointed out that other media reaching the public (as contrasted with scientific and professional publications and journals) posed the same risk, the Society acknowledged that its media policy might require some review.
Other large cancer organizations see the issue differently, considering reaching the public to be an important part of their mission. For example, the American Association for Cancer Research has had a four-hour public forum and “meet the experts” session at each of its annual meetings for the last several years.
“Educating the public is one of our top priorities,” AACR CEO Margaret Foti, PhD, said, explaining that the Association's educational mission is a very broad one, with “preventing and curing cancer through research, education, communication, and collaboration” part of the organization's bylaws.
Advocates Active AACR Members
Dr. Foti added that advocates are active members of AACR; that the organizations sees expanding public information about basic science as both a passion and responsibility; and that AACR is developing a survivor relations program.
ASCO also puts public education front and center, partnering with several patient support organizations and last year launching a related Web site specifically for patients: PatientsLivingWithCancer.org.
“People living with cancer are at the heart of ASCO's mission to improve cancer care and prevention,” said ASCO CEO and Executive Vice President, Charles M. Balch, MD.
Reflected in Theme of ASCO's 2003 Annual Meeting
“That mission involves working collaboratively with patient organizations as well as expanding ASCO's patient educational materials,” Dr. Balch continued. “In fact, to tell you how integral the partnership is between physician and patient—likewise ASCO and the patient community—the theme of this year's Annual Meeting is 'Commitment. Care. Compassion. Honoring People with Cancer.”
As for ASH, a month after the annual meeting, the Executive Committee made some changes in its media policy regarding embargo times and making it possible to reserve rooms with phone lines. The more pertinent issue of whether to provide information to the public and whether professional and medical societies have responsibilities beyond their dues-paying members, however, is still somewhat up in the air.
As Jenifer Hamilton, ASH's Director of Education and Communications, explained, “The ASH Executive Committee has committed to developing a plan to reach out to patients and the general public in a way that is appropriate for ASH. We recognize that many of the patient advocacy groups are already doing an outstanding job in this area, and we don't want to duplicate their efforts. It is a very complex issue for the Society, as we want to make sure this is done right, and in a way that is responsive to the needs of our members as well as the public.
“At this point we cannot say whether this will involve developing our own patient materials or simply developing a mechanism to refer inquiries to the appropriate resources. This will be an evolving effort.”
I hope to be at this year's ASH meeting in San Diego to witness this evolution firsthand.
Check www.oncology-times.com for basic information about OT. Although the articles are available as yet only in the print edition, the Web site does have a Table of Contents list of all articles starting in January 2001.