Eliminating Health Disparities Among Minority Women: A Report on Conference Workshop Process and Outcomes

Abstract

A national conference convened in May 2001 explored health disparities among minority women. It included 5 one-hour workshops that randomly assigned each participant to 1 of 4 groups. Groups generated recommendations on conference topics and from these identified priority recommendations. Trained facilitators guided groups through brainstorming and weighted voting processes; individual recommendations were submitted in writing. Participants generated 598 recommendations, 71 of them voted as priorities; these were analyzed to capture participants' “messages.” Central themes focused on access issues and cultural incompetence as deterrents to the elimination of health disparities and on education, funding, and community-based, community-driven research as mechanisms for change. Strategies for change included reinventing or expanding the role of minority communities and changing health care itself and “how” it does its work. The essential element in all recommendations was community leadership and control.

On May 1, 2001, in Galveston, Tex, approximately 250 persons from across the nation, nearly all women of color, convened for 3 days to explore the health care disparities experienced by women of color in the United States. The conference, convened by the second author of this report, was funded by the newly created National Center for Minority Health and Health Disparities, National Institutes of Health, and was one of several conferences responsive to the center's mission. Each conference focused on a specific population; this one focused on women of color.

At the conference, papers were presented on topics drawn from the literature on women of color, particularly those in rural communities (see the editorial by Hargraves1 in this issue). Some papers focused on the most compelling health challenges facing this group of women: cancer, cardiovascular disease, diabetes, AIDS, violence, and infant mortality. Intractable issues concerning access to care were the focus of a paper, as were 2 resources for addressing these challenges and concerns: the spirituality of women of color and the potential of community research. Each paper was presented by an expert in the identified area and was followed by a formal response to the paper.

The presentations were designed to serve as catalysts for workshop sessions convened to generate recommendations by small participant groups. The recommendations were meant to identify policies, interventions, and research that could diminish or eliminate health disparities among minority women.

Because the workshops were intended to create conference outcomes, planning them focused on conference themes, structure, participants, and objectives. The authors of this report assumed primary responsibility for this planning and its subsequent implementation. This article reports on the process and its outcomes.

PROCESS DESIGN

The workshop design was guided by the aims of the conference. While the gathering created the opportunity for shared insights, networking, and reflection, the overriding commitment involved the generation of recommendations that could potentially guide the decision making of a wide variety of constituencies. To that end, we designed a process that would maximize participant input. We also wanted to determine which recommendations were viewed as most compelling by the majority of participants. Finally, we wanted to collect all recommendations in a single data set to determine overriding themes.

We selected brainstorming for the generation of recommendations. Osborn2 is credited with the invention of this method, used as early as 1939. During the intervening half century, a considerable body of literature has emerged reporting its strengths and weaknesses. Criticism tends to focus on the impact of the group process as a deterrent: some group members sit back and let others do the work (free riding), some are too fearful of criticism to speak up (evaluation apprehension), and everyone has to slow down the individual generation of ideas to accommodate taking turns speaking (production blocking).3,4 Convergent thinking has also been reported to be a concern.5

Conversely, the strengths of brainstorming include the likelihood of generating a larger number of ideas, the possibility of one idea's stimulating another, the mutual arousal of creativity in a group, the reward of having one's ideas heard, and the possible competition for good ideas.6 We believed that these advantages significantly outweighed the reported disadvantages. Since groups would convene for the generation of ideas, and since it was anticipated that all participants were committed to the conference goals, creating a structure that would maximize idea generation and create the conditions for every voice to be heard seemed the best approach.

Persons attending the conference came because they already had experience, expertise, or both about the conference theme. Brainstorming was an attractive option because the brief periods of time available for workshop sessions (1 hour) demanded a structure that would prohibit domination by a few voices or extended discussions where only a few ideas would be generated.

Successful brainstorming generates in a myriad of ideas, some contradictory to others. Determining which recommendations were most compelling to most persons became a second focus of the process design. To that end, a procedure was devised that permitted participants to vote on ideas generated in each of the workshop sessions. Weighted voting was used to accommodate our expectation that participants would desire to indicate not only preference but also strength of conviction. Hence, each participant, in each workshop, could cast 10 votes for preferred recommendations and 2 votes for those viewed as least compelling. Thus, the voting procedure served to equalize the voices of the participants, giving even the least verbal a mechanism for stating their preferences.

Because many of the participants were experts in the fields under discussion, we believed that there might be additional recommendations that one or another participant would find important enough to record independently. A form was devised for this purpose and multiple copies were made available to participants, who were asked to submit these sheets in a registration desk basket identified for this purpose.

PROCESS PREPARATION AND IMPLEMENTATION

Since group productivity surpasses individual productivity, mechanisms to maximize brainstorming's advantages became a priority. One such mechanism is the use of group facilitators,7 with highly trained facilitators having an even greater impact.8 Both cited research groups were able to demonstrate that the use of facilitators, particularly highly trained ones, virtually eliminated the impact of the disadvantages. Hence, 2 facilitators were identified for each of the 4 workshop groups and trained in the process by the lead author. Training included not only mastery of the process itself but also exploration of some common behaviors that prohibit effective brainstorming. Three of the 4 groups had the same leaders over time; the fourth group had changes due to scheduling issues. While most of the facilitators participated in group training sessions, some participated in individual training sessions.

During the facilitator training, we decided to collect field notes during the conference on our observations about the process. These focused on our individual perceptions; however, combining these field notes generated data useful in further understanding the process and its outcomes.

To prepare participants for their involvement in the workshops, a description of the process was included in the conference materials. At the beginning of the conference, the lead author presented a brief overview of the process. All participants were randomly assigned to 1 of 4 groups; they remained in this group throughout the conference and met in the same room for all workshops. In addition to the 2 facilitators for each group, a skilled clerical person was also present to assist in posting ideas for voting and for creating immediate computerized data files of all ideas, their votes, and the final priority recommendations.

During the 3 days of the conference, 5 workshop sessions were convened that focused on papers that had just been delivered. In one workshop, all participants focused on the same topic: access to health care. In the others, 2 groups focused on one topic and 2 focused on a second topic. Topics were randomly assigned. Participants were advised that the sessions would be led by trained facilitators who were responsible for maximizing participant input and moving the process to completion using mechanisms of brainstorming and voting.

The workshop hour was divided into time segments for orientation, brainstorming, voting on priority recommendations, and refining the priority recommendations. Because the conference focused on policy, intervention, and research, an effort was made to integrate all 3 aspects into final priority recommendations during the last 10 minutes of the sessions. In general, this time structure provided guidelines without requiring rigid adherence.

During the brainstorming session, all participants were repeatedly invited to offer recommendations. Participants were advised that no idea was wrong or unacceptable. Ideas were to be stated simply and directly and written on easel sheets large enough for all group members to read. When a sheet was filled, it was posted on the wall. Participants were advised that the ideas would not be discussed, evaluated, judged, or criticized during brainstorming. Ideas were to be stated as recommendations without stories or explanations added. It was noted that one idea might stimulate a related one; this was welcomed. Participants were also encouraged to combine ideas or to improve on them with a new item.

When the brainstorming ended, participants were asked to review the sheets listing all the ideas. All participants were given 5 envelopes (1 for each workshop) with adhesive dots (the votes). There were 10 green dots and 2 red dots for each session. Participants were asked to place green dots on items they viewed as the most compelling or important among the ideas generated and red dots on those that were least compelling or important. They were free to place dots wherever they chose, including, for instance, putting all 10 green dots on a single recommendation.

After participants had voted, the facilitators tallied votes, and the top 3 to 5 recommendations were identified and refined as feasible. These became the group's priority recommendations. Thus, each workshop session concluded with 4 group lists of recommendations and 3 to 5 priority recommendations from each group. This same process was repeated 5 times during the 3 days.

All lists and votes tallied were entered into a computer file as they were generated. At the end of each day, these were made into handouts given to all participants the next morning. On the third day, these were provided at the end of the conference. Therefore, all participants had all ideas generated by all groups at the conclusion of the conference.

Individual recommendations were also entered into a computer file and distributed each morning. The final day's individual recommendations included many made as participants were leaving. Hence, this last set was the only one that participants did not receive during the conference. Interestingly, about half of these final recommendations were not about the topic itself but offered ideas on how to improve the conference or urged a reconvening of the group.

On the final day of the conference, after all workshops had been completed, the lead author presented a workshop summary, which included an initial analysis of the priority recommendations. After the conference, the authors convened several times to review outcomes from the 4 data sources (brainstorming ideas and votes, priority recommendations, individual recommendations, and field notes) and to make data analysis decisions. The initial analysis of the priority recommendations was reviewed and revised as needed, and the total data set was analyzed for overriding themes and specific focal concerns. The primary purpose of this article is to report the outcome of these analyses.

FIELD NOTES AND DEBRIEFING

At the conclusion of each workshop, all facilitators recorded field notes of their observations and impressions. The entire facilitator group also participated in a debriefing at the end of each of the 3 days. During workshop sessions, the lead author circulated among the 4 groups, trouble-shooting and clarifying as needed and collecting field note data for later review and discussion. Any practices that appeared to deter progress were discussed in debriefings, and inconsistent or unclear process activities were clarified.

Facilitators shared copies of their individual field notes at the first data analysis meeting after the conference. These were discussed to identify process factors that might shape an understanding of subsequent data analysis. The following discussion highlights some of the information captured in the field notes.

The initial workshop for all groups tended to be the most challenging, since participants were asked to brainstorm rather than discuss. Those who might have hoped that their personal agendas would prevail expressed some initial frustration with the process design. Attempts to dominate the group were addressed as they emerged in an effort to maximize variance of ideas.

Most groups had 20 to 30 members, since not all conference participants elected to attend the workshops. No effort was made to have members introduce themselves until the final session. Hence, the group spirit that eventually emerged over the 3-day period was free of class or status interactions or expectations. Those persons who became most engaged in the process tended to become increasingly enthusiastic and hopeful about its potential. A few persons, overtly frustrated that their ideas did not prevail, elected not to attend subsequent workshops.

While the initial response to the process was guarded and uncertain, as group skill increased, so did enthusiasm for the process. The attempt to edit the priority recommendations led some persons whose recommendations had received fewer votes to try to “shoehorn” their ideas in. This tendency diminished once participants learned that everyone would receive all the data generated at the conference and that all ideas were being shared. As group cohesion increased, which was marked in 3 of the 4 groups, the humor and spirited participation of the group increased.

Field notes indicated that the groups that generated the largest number of ideas were those in which a group identity emerged and was fostered and in which the process itself evoked enthusiastic involvement. Groups were highly heterogeneous; in general, this appeared to enhance creativity. The greatest deterrent to effective brainstorming was resistance to using this approach for generating ideas. This was expressed as the desire of a few members to engage in lengthy statements advocating a specific worldview. Where this occurred, a smaller number of ideas and priority recommendations emerged.

Early in the process, it became apparent that many participants disliked indicating which recommendations they viewed as less compelling or important (“red dot” votes). While all facilitators kept field notes on this concern, no one single reason for disliking this part of the task became apparent. It may simply have been a disinclination to tell anyone in the group that their ideas were not compelling.

Further, all participants were emotionally engaged in the conference concerns in their daily lives, so they may have simply felt that no recommendation that would improve the health care of minority women was less than compelling. Nevertheless, most participants did place their “red dots,” usually with a bit of teasing and interplay among group members. In general, negative votes tended to be spread across the total list. Those few items that did garner several negative votes tended to focus on potentially volatile issues such as same-sex interpersonal violence.

Those facilitators who participated in the comprehensive group training and practice (highly trained) or who had previously been highly trained tended to manifest greater ease in the facilitator role and were able to evoke more constructive group behaviors. While this may have also been simply a function of group composition, the benefits of training were noted in field notes as important.

Field notes enabled all facilitators not only to systematically collect observations about the process, their concerns, and patterns but also to systematically make personal evaluative appraisals that led to improved performance and skills. This in turn aided their groups in meeting their goals, resulting in a rich array of recommendations.

OUTCOME SUMMARY AND DATA OVERVIEW

Four groups of participants, convening 5 times, generated 555 brainstorming ideas; from these, they identified by voting 71 priority recommendations. In one session, 2 groups joined forces, so the actual number of brainstorming sessions was 19. In addition to these data, 43 individual recommendations on the conference theme were submitted, bringing the conference theme item total to 598. An additional 18 individual recommendations focusing specifically on conference reconvening were made. In this report, however, only the 598 items that focused on the conference themes will be discussed.

Data analysis focused on 2 areas of interest: the total data set (598 items) and the priority recommendations (71 items). The former were analyzed to ferret out overriding themes and concerns of conference participants on the basis of frequency of occurrence of specific issues or ideas. The latter were viewed as the high-consensus outcomes, since these recommendations were generated through group voting. In each data set, emergent patterns were identified.

To increase validity, most data analysis activities involved 2 or more persons collaborating on a coding process. All analysis outcomes were submitted to the entire group for discussion and further validation. The lead author took final responsibility for weaving the diverse analysis outcomes into a single report.

The conference goal of generating recommendations on policy, intervention, and research created an initial category structure for analyzing the total data set. Table 1 ▶ displays the distribution of items by focal area. Substantially larger numbers of intervention recommendations emerged. While not all conference participants were researchers or policymakers, all were recipients of care and hence had firsthand experience of the problems associated with the disparities that accompany health care provision. This may have made these recommendations more accessible.

TABLE 1.

—Total Data Set Distribution of Recommendations for Eliminating Health Disparities Among Minority Women, by Goals

Goals	Group Items	Individual Items	Total Items
Policy	123	2	125
Intervention	310	28	338
Research	122	13	135
Total	555	43	598

Nine topics were explored in the conference. As was noted earlier, one topic, access to care, was a focus of all 4 groups for 1 workshop session, and hence larger numbers of ideas were generated on this central theme. All other topics were addressed by only 2 of the 4 groups. Table 2 ▶ indicates the number of brainstorming items generated by topic, subdividing these into the focal areas of policy, intervention, and research.

TABLE 2.

—Distribution of Workshop Recommendations for Eliminating Health Disparities Among Minority Women, by Conference Goals and Workshop Focus

Workshop Focus	Policy Items	Intervention Items	Research Items	Total Items
Cancer	11	49	19	79
Cardiovascular disease	29	20	14	63
Access to care	41	73	4	118
Infant mortality	12	42	18	72
Spirituality	4	25	19	48
Diabetes	10	26	4	40
AIDS	3	21	4	28
Violence	9	45	17	71
Community research	4	9	23	36
Total	123	310	122	555

The variance in the numbers by topic may in part demonstrate areas of interest or expertise; however, it may also involve the timing of the workshops, since morning sessions tended to have higher attendance. Those topics with smaller numbers in some cases had fewer participants generating ideas. This may substantiate the utility of having a larger group to create the conditions for the cross-fertilization of ideas.

The variance in distribution among the 3 focal areas of policy, intervention, and research is more complex. Cardiovascular disease evoked a disproportionately high number of policy items, perhaps indicating that participants realized that the research and intervention issues were less critical for this disease than were the policy issues. Access to care evoked amazingly few research items, arguably because we do not need to do yet more research on a problem that is already overdocumented. This same pattern appears to characterize the items on diabetes.

Conference participants did not view policy-making as the preferred arena for addressing issues of spirituality in health care; however, they saw both research and intervention as appropriate. This same pattern is evident in the items focused on violence. These may be arenas where action within the community is more likely to succeed than policy potentially generated by persons outside the community. AIDS items are few in number; however, it is noteworthy that 75% of the items focused on intervention. One can reasonably ask if the most critical issue here is actual care delivered to the AIDS patients. Not surprisingly, the community research focus elicited research-focused items.

One of the first questions appropriate to the recommendations generated is who has to do the work—that is, who did the conference participants identify as the individuals essential to creating the desired changes? Column 1 of Table 3 ▶ lists the groups of people implicitly or explicitly named in the recommendations. Some of these are the people who craft policy, provide interventions, or do research. Other groups are included, however, most strikingly the community-based persons who are central to all the changes (e.g., lay leaders, spiritual leaders, schoolteachers). Another important group comprises corporate leaders and media representatives, 2 communities with the resources to create the conditions for change.

TABLE 3.

—Resources for Change in Eliminating Health Disparities Among Minority Women

People	Related Organizations
Neighborhood group leaders	Minority community groups
Community-based lay leaders	Health care delivery systems
Health care providers	Churches and faith-based groups
Policymakers	Junior high and high schools
Schoolteachers	Homeless centers
Social workers	Health insurers
Spiritual leaders	Universities
Corporate leaders	Criminal justice system
Health care insurers	Social and welfare agencies
Government officials	Corporations
Researchers	Research funding agencies
Police and justice officials	Federal government (VA, DHHS, NIH)
Media representatives	Media organizations

Note. VA = Department of Veterans Affairs; DHHS = Department of Health and Human Services; NIH = National Institutes of Health.

A related question involves the organizations in which either change must occur or change can be initiated and financed. Column 2 of Table 3 ▶ lists these organizations, which predictably show a degree of overlap with the persons identified in column 1. Of note here is the complexity and scope of engagement necessary to create change. The conference participants were not so much inclined to create new structures as they were to ask that existing structures function in new ways.

The most substantive analysis of data focused on identifying overriding themes or “messages” that participants repeatedly introduced. It is noteworthy that these themes recurred on the second and third days, despite the fact that they had been identified in previous workshop sessions.

The central themes of the total data set primarily gave emphasis to 1 of 3 areas. The first identified barriers to health care for minority women, focusing on access barriers and cultural insensitivity and incompetence in existing policies, health care provision, and research. The second theme focused on the structural mechanisms needed to address health care disparities. Solutions focused on funding, education, and community-based, community-driven research. Most items indicated that minority communities' desire and intent to solve problems for themselves, on their own terms, was the essential element necessary for eliminating health care disparities. Community leadership and control is listed as a distinct third category in Table 4 ▶ because it was a subtext for the vast majority of items and addresses not so much “what” to do as “how” to do it. In this sense, the changes most sought by this group of participants were changes in worldviews, programs, and locus of control and changes in action, power distribution, and ideas. In analyzing the total data set, it became apparent that many recommendations combined 1 or more of these central content themes.

TABLE 4.

—Content Themes of Conference Workshop Recommendations for Eliminating Health Disparities Among Minority Women

A. Total data set themes

1. Barriers to the elimination of health care disparities

a. Access issues

b. Cultural competence issues

2. Structural mechanisms needed to eliminate health care disparities

a. Education

b. Funding

c. Community-based and community-driven research

3. Essential element in eliminating health care disparities: community leadership and control

B. Priority recommendation themes: emerging strategies

1. Reinvent or expand the role of the minority community.

2. Change health care.

3. Change the “how” of getting things done.

Priority recommendations tended to focus more concretely on potential strategies to eliminate or decrease health care disparities among minority women. Three major strategy categories emerged. The first was the reinvention or expansion of the role of the minority community. The second focused on changes in existing health care, while the third focused more on the “how” of getting things done.

Table 4 ▶ summarizes the content themes emerging from the total data set and the priority recommendations. The remainder of this report provides a discussion of these themes.

TOTAL DATA SET THEME 1: BARRIERS TO THE ELIMINATION OF HEALTH CARE DISPARITIES

While recommendations were theoretically crafted to suggest new or improved behaviors, the message in some items focused on things being done now that prohibit the desired outcomes. Hence, we have described them as recommendations that address barriers to the elimination of health care disparities.

Access Issues

Well over one quarter of the recommendations in the total data set included explicit or implicit references to the need to address and resolve access issues. While this high occurrence emerged in part because this topic was a focus of a workshop session for all 4 groups, it was also expressed in other workshop sessions.

Analysis of these items sheds light on where the problem of access is most powerful: 3 focal areas account for about 75% of the access recommendations. The first involved the need to substantively improve existing health care services (e.g., by relating health care to consumers' values and culture). The second theme emphasized improving the structural aspects of care delivery (e.g., enhancing consumer operations by using community members as case managers). The third focus involved creating care environments that are more gender and culture sensitive (e.g., public service announcements in Spanish in Hispanic communities). In these items, as in many others, the strong emphasis on training nonminority providers in cultural sensitivity emerged.

Among the remaining 25% of the access items, some aimed at improving policy, primarily focusing on other related recommendations such as mandating coverage for preventive services. Funding and resource items addressed the uninsured, unserved, or underserved, recommending the allocation of resources, primarily governmental, to provide these persons with adequate care. Research items, few in number in reference to access, focused on the problems associated with quality of care.

Access items involving education fell into 2 groups. The first group aimed at the minority community and the need to create educational programs that improve access, support access, or enable people to negotiate the system. Items in the second group focused on health care providers and their need for cultural sensitivity training—for example, “Train nonminority providers on how to deal with people with respect.” This last example demonstrates the indirectly stated message that culturally incompetent providers are a serious deterrent to women of color accessing care. They prohibit access to care as effectively as bureaucratic red tape, which actually received less attention at the conference.

One of the most interesting categories of access issues was that of innovation—the recommendation to do something new and creative. Examples here included making health care fun and pairing health care with entertainment. These recommendations reflect a potential to create initiatives that are not problem focused but innovative.

Cultural Competence Issues

Cultural incompetence was reported as a major barrier to resolving health disparities. Cultural competence as an educational goal for all health and human service workers, including both students and active practitioners, was repeatedly recommended. The hope that such education would result in greater levels of cultural compassion was the focus of these recommendations.

Many items posited that gender and culture sensitivity and competency (or its absence) can affect health care outcomes and therefore warranted systematic research (and funding). Items called for a heightened respect for women of color by health care workers, noting a preference for culturally competent lay workers. Of particular interest were recommendations that cultural competency and sensitivity should be incorporated into existing and emerging research instruments measuring wellness, quality of life, and patient satisfaction. Implicitly, these recommendations indicate that, in part, disparities are sustained because they are never researched and documented in terms of cultural competency.

Groups grappled overtly with the issue of culture as local, highly variable, and complex. While these recommendations did not achieve priority status, they do provide a snapshot of the kinds of issues the groups addressed. Some recommended further categorizing ethnic groups (e.g., Black subgroups). The use of Native American therapies as integral to care was recommended. These examples demonstrate the diversity of ideas in this challenging area of concern.

TOTAL DATA SET THEME 2: STRUCTURAL MECHANISMS NEEDED TO ELIMINATE HEALTH CARE DISPARITIES

Education

While the focus of this conference was on policy, intervention, and research, the frequency with which the groups focused on education often made it seem a focus in its own right. Almost one fourth of all the recommendations identified education as the primary mechanism needed to eliminate health disparities. These recommendations focused on 1 of 3 overriding themes.

The first emphasis was on the desired scope of education in cultural sensitivity and competency. All age groups were included, with particular attention to the young and to persons being educated as health care workers. Schools at all levels were described as appropriate sites, as were churches and community-based agencies.

The second emphasis was on illness prevention and health promotion. All members of the community and all age groups were identified as needing this education. Often the recommendations pointed to the topic of a given workshop (e.g., “Age and culturally appropriate curriculum at every level that addresses the violence as NOT acceptable…”).

The third emphasis focused on the “how” of education. These recommendations indicated the importance of culturally appropriate educational materials, including awareness of language and traditions as factors. Advertisements, written materials, and the use of media were recommended, with the proviso that these be community based and community appropriate. Making educational materials easily accessible in the community, using sites such as the YMCA, exemplifies this approach. Many recommendations pointed to the need for hands-on educational materials that persons could take for their own use.

Funding

While funding was named only half as often as education in the total data set, its centrality as “part of the solution” was obvious. This may in part be a statement of awareness about the lack of funding for many of the issues under discussion and more specifically for community-based research on health disparities among women of color. Simply put, the conference participants repeatedly noted: “We don't know enough about this yet.”

A second funding emphasis related specifically to educational programs. The above discussion concerning education was often framed within the context of funds needed to meet educational goals, both for the community members and for the provider groups. Related to this were recommendations for funding prevention programs and health promotion, both implicitly involving education as a primary intervention.

Finally, funding recommendations repeatedly alluded to the need for more research in virtually all topics of concern. While not all of the 122 items focused on research included the need for funding, it is implicit in all of them. Indeed, if the resources were there, enterprising researchers would have found them.

These recommendations tend to point out that most of the problems addressed by the conference papers require significant research funding investments, and these do not exist at adequate levels at this time. Some recommendations also spoke to the “type” of research funded (e.g., ethnographic, qualitative, longitudinal, or applied research), the participants noting that these research approaches might better generate unavailable but useful information.

Community-Based and Community-Driven Research

The comments made above about research funding link up directly with items in this category. They differ, however, in that they emphasize not so much the funding of the research as the type of research needed. A clear message from the participants was that research is needed, but it needs to be conducted either by members of the community or in close partnership with them. Many recommendations emphasized the need for minority communities to be involved in every phase of the research, with particular emphasis given to finding concrete, specific ways to bring research findings back to the community for their education and use. Several recommendations made research funding contingent on these requirements.

Some recommendations focused on achieving the goal described above by increasing researchers' skills in community-based participatory research methods, getting more people of color involved in clinical trials, or training researchers of color to conduct clinical trials in communities of color. Some focused on the need to have more women of color do this research, and some noted that research was needed quite specifically on “the role of women in seeking health care.”

A second significant research focus addressed research design and methods, positing that they needed to be sensitive to culture. These in part mirror the funding recommendations, emphasizing the use of methods that are qualitative, participatory, and longitudinal and requesting that respect be awarded to these methods. Related to this, some recommendations called for measures that were valid, reliable, and appropriate for the culture or capable of capturing the impact of discrimination—in short, “Deal with racism.”

Some of the recommendations gave emphasis to a web of inclusion (e.g., using multidisciplinary teams, involving churches in community-assessment data gathering and outcomes, or community partnering with colleges and universities). In these, the focus appeared to be on enhancing the research by acknowledging often unacknowledged sources of variance.

TOTAL DATA SET THEME 3: THE ESSENTIAL ELEMENT IN ELIMINATING HEALTH CARE DISPARITIES IS COMMUNITY LEADERSHIP AND CONTROL

As a review of all data makes apparent, the conference participants viewed community leadership and control as the essential element in eliminating health disparities among women of color. Participants were clear that community-driven, community-based policy, interventions, and research were the essential elements in creating intelligent and viable initiatives.

One of the most interesting findings in this data set involves inclusiveness of language. While the conference focused on women of color, recommendations generally concentrated not so much on women and their needs (though some were quite specific, particularly in addressing infant mortality) as on the needs of the entire community.

In the United States, women are the primary health care consumers and negotiate the systems on behalf of their families. Hence, while these recommendations might have stated “what we women need,” it is a striking commentary on the roles played by women of color that instead they usually state “what our communities need.” Certainly, if communities see the fruits of these recommendations, women will benefit. Nonetheless, the pattern is noteworthy.

PRIORITY RECOMMENDATION THEMES: EMERGING STRATEGIES

An analysis of the 71 priority recommendations demonstrates that conference participants focused on 3 overriding strategy themes that call for specific changes. The first focused on reinventing and expanding the role of the minority community, the second on changing health care, and the third on changing “how” things get done. Many examples reflect the creativity of the participants. The following discussion amplifies the participants' messages about these strategies.

Strategy 1: Reinvent or Expand the Role of the Minority Community

This theme was a persistently recurrent one, present explicitly or implicitly in over 65% of the recommendations. Emphasis was given to building on the strengths of minority communities, and many strategies addressed increasing the number of minorities in various leadership and provider roles. In the latter case, focusing on the young and working with schools were emphasized. Acknowledging the role of the churches and faith-based groups in minority communities, and using these resources as a starting point for a variety of negotiations, was also emphasized.

Perhaps the strongest message, however, was the need for health care providers to be educated in cultural diversity, cultural sensitivity, and cultural competency. Multiple strategies were identified (e.g., compulsory education for health care providers in underserved areas). While some strategies emphasized the impact such training could have on the well-being of the patient, more often they were framed as a response to a perceived deficiency in health care providers, one that was frustrating and prohibitive.

What is clear in all of these strategies is that the solutions emerge not “out there” in the usual and customary halls of power and influence, but of necessity must emerge from the minority communities. In addition, to come full circle, the voices of these communities would be the best venue for expressing intention and the best yardstick for measuring outcome. Put simply, all proposed change must be grounded in the minority community.

Strategy 2: Change Health Care

As stated, this theme does not look particularly innovative; we have been changing health care a good deal. The point made in these recommendations, however, is more complex and less commonplace. The only recommendation to appear twice in the 71 priority recommendations was a call for universal health care insurance, policies, and practices. Recognition of the role of women was reflected in recommendations that focused on making health care more family focused, more patient friendly, more community based, and more cognizant of a woman's right to choose.

The conference participants were more likely to focus on interventions that were educational or preventive in nature, giving strong emphasis to health promotion, teaching children health habits, and providing holistic health care. In these recommendations, the participants were essentially calling for a redefinition of health and health care more compatible with the needs and desires of the minority community. The site of care was also a focal point; placing the care in the community was the overriding message.

Educational programs focused on educating the young, providing appropriate educational resources, using various media (and media personalities) to “get the story out,” and creating an array of educational partnerships (e.g., “Researchers partner with historically Black colleges and universities and other educational institutions of color to capture federal funding opportunities.”). Education involved both educating persons about minorities (e.g., insurers, government officials) and educating the minority community members about their communities.

Strategy 3: Change the “How” of Getting Things Done

Strategies with this theme focused on specific policies, practices, interventions, and research approaches, suggesting not that they be increased, decreased, or altered in their essential nature but that they simply be done differently. By way of example, several recommendations focused on the need to plan, implement, conduct, and evaluate programs of care in close partnership with the community.

A preferred strategy in some recommendations was the inclusion of contingency provisions in funding policies: “You can get money only if you. . . .” Underlying many of these strategies was the recognition that many changes have been given lip service for a long time and will be implemented only when a persuasive incentive is provided—in many cases, funding or its loss.

The creative use of media and media personalities to create and market health education programs, to attract participants to health programs, to emphasize lifestyle issues, and to image cultural sensitivity was also the focus of some of these recommendations. In most of these cases, the emphasis was on improved marketing practices and accessing media personalities important to minority communities to provide information and motivation.

Creating new partnerships was another strategy designed to do things a new way (e.g., “Bring health insurers to the discussion table on database issues of care.”). In some cases, webs of partnership were recommended (e.g., “Establish coalition between health care providers, faith-based organizations, academia, and the community.”).

These “how to” strategies were generated primarily by women of color and describe “how” such women would like to see things done. They therefore may differ somewhat from usual and customary practices, may actually identify innovative approaches not yet explored, and may be the tools needed to address the vexing problems explored in this conference. They may simply have never been tried through fears that, because they are not usual and customary, their implementation could create more difficulty than is at first apparent.

SUMMARY

Any attempt to summarize this quantity of rich and diverse data is of course doomed to fail to some degree. Nevertheless, discerning patterns and themes can be useful in ascertaining the overall messages delivered by this engaged and committed group of conference participants.

In reviewing all these data, the final message of the participants, as we have understood it, is as follows: The health care disparities among women of color are for us simply one aspect of the larger issue of health care disparities among people of color. Perhaps because we are women, therefore, our solutions involve all of us, the whole community. The biggest challenge we face in resolving this issue is the cultural insensitivity and incompetence of existing educational and health care delivery structures. Their values, funding patterns, research, care programs, and underlying discriminatory practices are our main deterrent in accessing the care we seek. We want to eliminate health disparities for people of color, and we recognize that we will need educational programs, funding, and programs of research to do this. We would actually prefer to promote health and prevent disease. We know most of all that we need to do it on our terms, in our communities, under our leadership and control. That is what we recommend!