Page 8

noted that his Society's efforts to recruit applicants actively tried to reach beyond the MS field when publicizing the availability of funding. Yet he too conveyed his frustration that the few applications his Society received were of poor quality, even though the Society worked with researchers to help shape their applications.

Dr. Iezzoni of the IOM Committee urged more “beating of the bushes” by funding agencies after she recounted that even though she is an established health services researcher, she had only learned of funding opportunities at the MS Society second-hand through her colleagues and not directly through any of the channels used by the Society. She encouraged funding agencies to be more proactive in recruiting health services researchers from outside the MS field who are studying symptoms (e.g., incontinence) of relevance to MS patients. She also suggested that funding agencies could act as brokers to link up practicing neurologists with health services researchers at nearby universities, to which Dr. Michael Weinrich of the NIH, National Center for Medical Rehabilitation replied that “I think certainly we would be very happy to coordinate with the MS Society or other agencies,” to promote awareness of funding.

The discussion was summarized by Dr. Richard Johnston, who observed that current approaches by funding agencies are not working. The recommendation to encourage more quality of life research (#17) was also discussed by the third breakout group, which described the need for research as “an absolute must.” That breakout group suggested workshops to facilitate the transfer of ideas among biomedical researchers and allied health professionals at international meetings such the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) and the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS).

Patients and Priority Setting

Participants also debated the role of patients in the research priority-setting process. The breakout group agreed with the report's recommendation that patients and caregivers must have a voice in identifying quality of life research needs through various venues and forums. Dr. Reingold raised the broader question of whether patients should participate more generally in priority-setting across all types of MS research. Several participants described their experience in other health fields where patients successfully contributed to prioritizing research, in part, by lending urgency and direction to the discussion. Others pointed to the pitfalls. As both researcher and patient, Dr. Iezzoni observed that patients are heterogeneous and do not speak with one voice. Some emphasize research on a cure, while others are more concerned about their quality of life, often depending on age and severity of symptoms. A recent study of patients, conducted in Denmark and soon to be published, has borne this out, according to Dr. Clausen of the Danish MS Society. Some workshop participants were concerned about the hazards of having patients advise on scientific priorities in which they lack expertise. Finally, Dr. Claman commented on the unfairness of asking patients to prioritize when experts themselves are similarly divided.

The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement