Section 2: Getting the Lay of the Land
Now that you understand more about consumer advocates, where do you start? And what else do you need to know to work effectively with advocates in your community? It is helpful to begin by doing a little research.
Identifying Likely Collaborators
The first step is to identify your community's advocates for health care consumers and patients. You can start simply by asking for recommendations from board members and staff, exploring Web sites for local organizations, and identifying local affiliates of national organizations. Possibilities include organizations that represent specific constituencies, such as AARP, the Area Agency on Aging, and local labor unions. Organizations that focus on the needs of people with specific conditions or diseases, such as the American Diabetes Association, the American Cancer Society, and the American Heart Association, are another good option. It's possible that your community includes organizations such as Citizen Action or the League of Women Voters that are working to reform health care generally, and may be interested in expanding into health care quality. Churches, synagogues, and other faith organizations provider other avenues to pursue because they are community gathering places and often have lay and professional health ministers on staff.
One of the most effective ways to find potential partners is to ask for referrals from people who work with advocates or who serve as members of the groups' boards of directors (e.g., legislators, leaders of provider organizations, your Community Quality Collaborative's other stakeholders) as well as any advocates you already know. Ask them who is active in your community or state and what kinds of populations they represent. In some communities, advocacy groups already have a coalition that they use to pursue shared goals. Partnering with representatives of an existing collaborative can be ideal for your Community Quality Collaborative, which would benefit from the multiple perspectives they can provide.
Some Community Quality Collaboratives may find that identifying advocates who can adequately represent consumers is a challenge. This is often because of socioeconomic factors that may crowd out the need to address health care quality. In the experience of the authors-who have worked at the grassroots level in communities around the country-a market like Memphis, for example, has a large population of people with chronic conditions, but its community of advocates is small and already has a full plate of obligations addressing deep and systemic problems, such as poverty and racial bias. And, because the city of Detroit is experiencing a significant economic downturn, the community's advocates are overwhelmed by issues related to housing and jobs. Situations like these should not discourage you from seeking out people to represent consumers, but they do mean that you will have to exercise some creativity to ensure that consumer groups are adequately represented.
Creativity also is called for in rural areas, many of which cannot support traditional advocacy organizations. However, these areas often have groups such as the Lion's Club or Kiwanis Club or individual leaders who play a similar role in the community. Community Quality Collaboratives that cover geographic areas with rural populations may want to identify people who serve as advocates in their communities even if that is not their official role. For example, a 2004 study by the Society for Public Health Education found that librarians in North Carolina answer more than 10 health-related questions a week.6 In a region with few advocacy groups, librarians could be cultivated to serve as consumer representatives.7
Examples of Consumer Advocacy Organizations to Contact
Consumer advocacy organizations that serve women, children, older adults, minority patients, and labor members, such as:
- The Arc (the world's largest community-based organization of and for people with intellectual and developmental disabilities)
- Area Agency on Aging
- Easter Seals
Faith-based organizations that serve individuals with specific diseases, such as:
Broad-based or policy-focused organizations, such as:
- Citizen Action
- Consumer's Union
- Kiwanis Club
- League of Women Voters
- Lion's Club
- Literacy Council
- Neighborhood Associations
Doing Your Homework: Potential Partners
Once you have identified these possible partner organizations, learn more about them. To determine whether they are a good fit for your Community Quality Collaborative, you will need to find out what these organizations do, what they care about, and how they are funded.
You also need to assess the relative strengths and weaknesses of the individuals who would represent these advocacy organizations in order to determine their fit with your Community Quality Collaborative. As you do in identifying any stakeholder representatives, consider the following:
- Is the advocate ready to engage in the kinds of projects the Community Quality Collaborative will take on? You can assume that the advocates you meet will fall along a broad spectrum with respect to their readiness to engage in the work of the Community Quality Collaborative, with some not at all interested, some unsure but intrigued, some interested but not quite ready, and some highly enthusiastic. While it may be ideal to help move all advocates along that spectrum, the more practical approach is to focus your attention on the “early adopters.”
- Is the advocate able to see beyond his or her personal experience with health care? Is he or she able to use personal experiences constructively to focus on what could be improved? Advocates may be passionate about health care issues because of their personal experiences with the health care system, but it is critical that they can speak for the organization's constituency, not just themselves, and see how their concerns fit into the big picture.
- Will the advocate be able to incorporate the work of the Community Quality Collaborative into their current job responsibilities? Some advocates will be unable to participate in the Community Quality Collaborative because their organization is acutely understaffed. These organizations often will suggest that a volunteer, a retiree, or member of their organization fulfill the role. This person's strengths and weaknesses should be assessed as well to determine whether they are a good fit.
- Does the advocate have good people skills? Can he or she participate effectively in a multi-stakeholder group? In the context of the Community Quality Collaborative, this person may have to deal with a number of people who have very different perspectives and priorities. Does he or she have the skills to engage diplomatically? Will he or she feel comfortable asking other stakeholders to explain jargon or concepts that are unfamiliar?
- Does the advocate have good communication skills? In addition to being able to listen well and absorb information, the advocate needs to be able to support and communicate your Community Quality Collaborative's messages to his/her constituency.
The following worksheet is designed to help you keep track of potential partners. (See Section 6: Resources for a full-page version of this sample form.) As discussed later in this Guide, it is possible that participants in the Community Quality Collaborative will need to leave the group over time, so it will be helpful to Community Quality Collaborative leaders to be able to refer back to this record of your research and your reasons for selecting specific individuals to participate.
Consumer Advocate Contact List
|Name of Organization
Name, Position, Phone, Fax, E-mail Address
|Assessment of Fit with the Community Quality Collaborative
(Include brief rationale)
|Status (Include record of meetings)
Doing Your Homework: Key Issues
In addition to learning about the people, take some time to learn about the major policy issues in your community so that you can better understand the advocates' priorities, their challenges, and the environment in which they operate. This will help you articulate how your Community Quality Collaborative activities relate to the immediate concerns of the advocate and their organization.
- What issues is your community struggling with? Possibilities worth noting include hospital closures, housing shortages and/or foreclosures, access to healthy foods, the employment picture, and constraints on public transportation.
- How do those issues intersect with health care? For example, how does limited access to transportation affect access to care?
- What is the quality profile of your community's health care system? What are the quality improvement priorities in your state or community? These priorities may suggest the inclusion of particular consumer advocacy organizations in your Community Quality Collaborative. To help determine the quality profile of your community, Community Quality Collaboratives can tap information from the HCUPnet (http://hcupnet.ahrq.gov/), the National Healthcare Quality Report (NHQR) (http://www.ahrq.gov/qual/nhqrfact.htm), and the NHQR state snapshots (http://statesnapshots.ahrq.gov/snaps07/index.jsp).
- What health care-related issues are current priorities for the state legislature? The advocates are likely to focus attention on those issues.
- What kinds of projects are foundations and other funders supporting in the community? Those projects can offer insight into the local concerns that others have identified. Knowing who is doing what also can give you a sense of whether some advocates may already be over-extended.
6 Laura A. Linnan, Barbara M. Wildemuth, Claudia Gollop, Peggy Hull, Christie Silbajoris, and Ruth Monnig, “Public Librarians as a Resource for Promoting Health: Results From the Health for Everyone in Libraries Project (HELP) Librarian Survey.” Health Promotion Practice. Vol. 5, No. 2, 182-90. (April 1, 2004)
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