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Objective 1: Experts in the topic areas of 1) reproductive health, 2) health promotion/secondary conditions, 3) psychosocial health, and 4) access to health care for women with disabilities, will produce white papers presenting the state of the science in research, clinical and community interventions, and consumer education, with recommendations for funded research priorities.

A total of 34 nationally recognized authorities in the health of women with disabilities (see Appendix A), including 13 university-based researchers and clinicians, 5 representatives of private organizations, and 9 representatives of federal agencies, participated in the development of the white papers. Within this group, 13 had PhDs, 7 had MDs, 15 were women with disabilities, and 6 had a minority background.

Working groups were established for each of the four priority areas, and each met monthly from January 2002 until May 2002. Because the topic of health promotion/secondary conditions was so expansive, that working group broke into subgroups to prepare portions of the paper examining physical activity, diet, smoking, and various secondary conditions. After the hiatus due to the illness of the project director, work on the papers resumed in fall 2002.

A background paper was prepared explaining the circumstances surrounding the rise in interest in the health of women with disabilities and a description of some of the early researchers in this area. There is also a brief description of the three major funding agencies that have made an investment in this line of research to date: National Institutes of Health, National Institute on Disability and Rehabilitation Research, and Centers for Disease Control and Prevention (see Appendix B).

Development of white papers on the topics of health promotion, secondary conditions, psychosocial health, reproductive health, and access to health care, was completed in May 2003. The papers were made available to the participants by posting them on a website specially created for the symposium (www.crowdbcm.net). The format was designed using html, a computer language that enables the linking features of websites, so that information could be accessed vertically as well as horizontally through three levels of detail. The first level presented only the major points of each paper in the form of common language highlights. Each highlight linked to the next level of detail, which presented more background information on that topic, also in non-technical language. From the first and second levels of detail, one could link to the third level of detail, which was a full academic review of the topic with references. Levels one and two have been maintained on the website (see Appendices C-G). The third level of each paper has been taken down from the website and is being prepared for publication in an academic medical journal.

In addition to the white papers, we prepared a registry of past and current research on the health of women with disabilities (using samples or analyses only of women) with the assistance of members of the working groups (see Appendix H). This registry lists 97 funded research projects from 1991 to the present, in 17 topic areas: abuse/violence (6), aging (9), breast cancer (2), cardiovascular disease (2), economic outcomes (1), general (17), girls with disabilities (2), health promotion (14), health services (2), menopause (6), mental health (5), osteoporosis (9), parenting (1), physical activity (10), reproductive health (5), secondary conditions (2), and sexuality (4).

An unexpected bonus was the contribution of a personal essay by one of the symposium participants, “Personal Perspectives on Giving In, Giving Out, and Giving Back” by Linda Gonzales (see Appendix I). This first person account offers an intimate and passionate look at the dilemma of women with disabilities who are struggling with new physical, psychological, social, and spiritual problems as they age. It is posted on the website.

Objective 2: White papers will be disseminated widely to researchers, women with disabilities, health care professionals, educators, and public health administrators for comment on the priorities for funded research.

The decision was made by members of the working groups to make the first and second levels of the papers available for comment in a variety of formats after the completion of the symposium. This information is currently available on the website, www.crowdbcm.net.

Objective 3: Representatives of researchers in the health of women with disabilities, women with disabilities, and federal and private funding agencies will convene to discuss and develop recommendations for research priorities in these areas.

The symposium was held June 20-21, 2003. Twenty-two of the participants were able to attend the symposium in person. A list of participants in the symposium as well as all who contributed to the preparation of the white papers can be found in Appendix A. See Appendix J for the schedule of events during the symposium. The format used was small group and whole group discussion of each white paper topic over the course of two full days.

Objective 4: A document summarizing the recommended research priorities will be produced and distributed nationally to researchers, consumers, health care providers, public health policy makers, and federal and private funding agencies.

Members of the working groups prepared some recommendations for further research before the convening of the symposium, but decided that a more efficient strategy would be to ask participants in the symposium to discuss each topic in depth in break out groups and arrive at a list of research recommendations that could be discussed and prioritized by the group as a whole. A list of the recommendations generated and drafted at the symposium in each topic area can be found in Appendix K. The refinement of this list and final prioritization are still in progress. The final summary document of the symposium is in preparation. Completion is expected in the next 90 days.

2. Fulfillment of Evaluation Criteria.

A. Six white papers were prepared and disseminated, comments were received from the field, and a summary was sent to participants prior to the convening of the conference.

Five white papers were prepared and disseminated after a reconsideration of the organization of topics within each paper (see Appendices C-G). The decision was made by members of the working groups to make the first and second levels of the papers available for comment in a variety of formats after the completion of the symposium. This information is currently available on the website www.crowdbcm.net.

B. The conference was implemented according to plan and time schedule.

The symposium was implemented according to plan, but a major setback in scheduling occurred when the project director became seriously ill and was hospitalized one month before the scheduled event. Several months were lost during her recovery, but work resumed in the fall of 2002 with the white papers posted on the website ready for review one month prior to the symposium. Other than the one-year time shift, the symposium was conducted exactly as envisioned in the original proposal.

C. A least 80% of the invitees attended the conference.

Of the 34 participants in the preparation of the white papers, 22 attended the symposium in person, one of whom participated via teleconference call, yielding a 65% attendance rate.

D. In response to a questionnaire asking about satisfaction with the content, quality, and timely distribution of pre-conference materials, logistical arrangements, conference content, opportunity to participate, and perceptions of the quality and potential impact of the summary document, attendees rated the conference an average of 4 or better on a scale of 1 to 5 with 5 being excellent.

Evaluations received from 18 participants (see Appendix L) showed strong enthusiasm for the value of convening the symposium and the quality and potential impact of the results, with mean ratings of 4.71 for each on a scale of 1 (low) to 5 (high). They found the quality and usefulness of the pre-conference materials to be more than satisfactory (3.61; 4.06), but some wanted more detail (2.72). Although timeliness was understandably rated low (2.76), half the respondents checked the second response, “late, but still useful.” The manner in which the symposium was conducted was rated well above average on logistics (4.11), facilitation (4.06), topics covered (4.56), and opportunities to participate (4.28).

The respondents were generous in their comments. There were mixed responses about the website. One participant said, “I thought that having a website with all of the materials on it was an excellent way to prepare for the meeting. The format allowed for me to review information on my own timelines, print out hard copies of those areas I was most interested in etc.”; but another felt the website was somewhat confusing to navigate with the different "levels." One participant wrote, “I understand why the materials were all at a different level (depth and scope), but these differences did make it difficult to determine what responses back to CROWD were needed.” Ratings of the level of detail in the white papers ranged from 1 to 5, with some noting that it was somewhat uneven among the various sections. One participant remarked that the reproductive health paper lacked focus while the secondary conditions paper had too much and was poorly presented.

There was general appreciation of the depth and breadth of expertise and representativeness among the participants. One participant who was a consumer and a service provider commented on the value of her perspective in shaping research priorities “because we are acutely aware of the strengths and deficits of various instruments, resources and tools produced by research for the clinic and or community health settings that frequently escape the purview of researchers.” There was a call for more medical expertise; one evaluation lamented the failure to include Dr. Kristi Kirschner of Chicago. Several participants remarked that some of the representatives of federal agencies were out of tune with the issues and tended to talk down to the participants, but felt it was good for them to listen to the discussions. One participant wished there were representation from the African American and the lesbian communities; although individuals from each of these populations were involved in the working groups but were unable to attend the symposium.

There were many compliments on the handling of the symposium, including the organization of the topics and flow of conversation to assure all participants gave input. Although one individual remarked that the facilitation may have been a little uneven, another liked the fact that everyone had a hand in setting priorities. One participant commented, “There was good energy in the sessions, and a strong sense of a common, very important mission.”

One of the representatives of NIH observed that many of the attendees had more experience with CDC and NIDRR than NIH. She suggested that “the attendees that think they would like to apply to NIH would benefit from some initial information that would encourage them to speak with NIH attendees. An opportunity on the first day to informally speak with reps from each department/agency may help stimulate more questions.”

E. The summary document was produced and disseminated according to plan and time schedule.

The summary document, listing recommendations for research developed at the symposium, is still in preparation. It will contain a summary of the materials presented in the appendices attached to this final report. The purpose of this project was to bring together researchers and representative women with disabilities to review the state of the science in the health of women with disabilities, identify important research questions that have not been addressed, and transmit this information in a meaningful way to persons who have the authority to designate priorities for research funding. Dissemination will be via hard and electronic copy announced to individuals, agencies, and organizations that have the power and authority to implement the recommended research priorities. Efforts will also be made to distribute the results of this project to those who, by the nature of their work and personal concerns, have an interest in the setting of research priorities by federal and private funding agencies.

3. Impact of the Project.

The impact of the work on this project can be determined on several dimensions, including short-term and long-term effects, and individual and national changes. Prior to this planning activity, there was very little communication among the few researchers who had received federal funding to examine the health of women with disabilities. Despite two national research conferences on this topic (1994 and 1999) and various project director meetings by specific funding agencies, there was little progress toward the establishment of national research priorities or any organized effort to advance the state of knowledge or health service delivery to improve the health of women with disabilities. As a result of the CROWD symposium, researchers from across the country, representative disabled women, and policy makers from federal funding agencies were able to work together over a two-year period and meet face to face to discuss what is known and what needs to be known in order to develop a plan to reach these goals.

Based on the evaluation comments, the immediate impact on the individuals involved in these activities has been substantial. There was general agreement on the extraordinary value of such an effort to take stock and plan a course for the future. In addition to their own personal gain, participants expressed enthusiasm for continuing their work in this area and passing along new insights to their students and colleagues.

Participants also expressed considerable enthusiasm for the potential long-term national impact of these activities. The recommendations that have resulted from this project will serve as the seeds for new and expanded funding channels for research and training in a wide variety of disability- and health-related topics. We look forward to the day when collaborations and communications initiated through this symposium will result in print and web-based information that will be easily available to consumers, clinicians, researchers, and educators so they may be empowered to do all within their power to improve the health of women with disabilities.

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