Section 1: Understanding Consumer Advocates
Although you may have heard and used the term “consumer advocates” before, you may not be quite sure who they are and how they operate. This section offers a brief overview of advocacy groups and their interests and constraints.
Research and focus groups with the general public in the Robert Wood Johnson Foundation's 14 Aligning Forces for Quality communities in 2007 found that language is important in a health care context. Respondents preferred the term “people” when referring to the general public, “consumer” when referring specifically to people who are making choices about the best provider or institution, and “patient” when referring to people who are actively being cared for by a doctor.3
Generally speaking, the label “consumer advocates” refers to individuals who work at nonprofit, mission-oriented organizations that represent a specific constituency of consumers or patients. Some consumer groups operate at the state, regional, or even national level while others work at the community level. Every group may have a unique focus, but they all share a single mission: to improve the situation for their constituencies.
The focus of consumer advocates varies widely. Some center their work on the needs of specific populations, such as older adults and children. Others focus on a specific disease, such as asthma or cancer.
Another large category is faith-based organizations, which typically address a variety of issues. A smaller but potentially very relevant category is advocacy groups that focus on policy, particularly health care reform. These groups may be concentrated in state capitals. And, finally, there are groups like Citizen Action with broad-based constituencies and even broader missions that touch on a variety of issues in a community such as housing, health care, education, and employment.
For all these groups, the key distinguishing feature is their emphasis on the needs and interests of consumers, even if defined narrowly.
For the purposes of your Community Quality Collaborative, it is best to seek out groups that truly represent consumers. Sometimes the lines appear blurry and it may seem like a health plan, employer group, or even a provider organization could serve as a consumer representative. While they may aim to speak for consumers and patients, these representatives have additional interests to consider, as with any stakeholder group, and cannot be regarded as consumer advocates.
What Advocates Care About
While each consumer advocacy group has its own agenda, they may share the concerns of other participants in your Community Quality Collaborative. They care deeply about health care in their community, and they see value in engaging the public on health care issues. However, because many advocacy groups focus on the needs of populations that do not get sufficient care, many focus their efforts on access to care and may need some basic education on quality issues.
Many advocates care deeply about the public's “right to know.” With a better understanding of the role that performance information can play in informing consumers' decisions and promoting improvements in care by providers, advocates are becoming more interested in publicly reported performance information and could play a critical role in facilitating use of this kind of information by consumers. When explaining your Community Quality Collaborative's goal of encouraging consumers to buy value, emphasize the right of consumers to know how well their health care providers deliver care.
It also will be important to acknowledge that until recently most performance information has been difficult to locate and understand. Be prepared to explain how the work of your Community Quality Collaborative will likely improve the state of public reporting.
Typical Constraints That Advocates Face
To work effectively with consumer advocates, it is important to recognize the challenges they face and the likely implications for their ability and/or willingness to partner with you. First and foremost, you can expect that many of the advocates you approach are working with a limited budget. With some exceptions, these people are not in organizations with resources to spare. This will affect how much you can ask of them; staff time alone can constitute a major contribution.
A related concern for advocates is that their time and resources are devoted to their mission, which may or not be the same as the Community Quality Collaborative's mission. Some simply cannot take on additional work. Others may be interested and able, but will need to make sure that any activities they participate in have a clear benefit for the people they serve.
On a more substantive note, while you may be approaching consumer advocates with a health care focus, they may not necessarily know what you mean by health care quality or be aware that it is a problem. You may need to educate some of them about the issues and help them see how poor quality affects their constituencies. Other advocates may be acutely aware of the problems with quality to such an extent that they are convinced that the challenges cannot be overcome. For those advocates, it may help to emphasize the potential for change and the successes that others have achieved. For example, you may want to reference initiatives like the Institute for Healthcare Improvement's “100,000 Lives Campaign” in which 3,100 hospitals implemented quality improvement interventions and saved an estimated 122,000 lives in 18 months.4 Or, you may want to provide the advocates with information on a Wisconsin-based study that indicated that making performance information public stimulates quality improvement activities.5
Finally, for some advocates, access to care is a priority that outweighs all other concerns. You may be able to engage them in your Community Quality Collaborative efforts by helping them see how your initiatives to improve quality encompass improved access as a key element.
One final consideration to keep in mind is that some advocacy groups have a long history of successful collaboration with health care providers, local hospitals, or physician groups. Be prepared to describe the multi-stakeholder approach of your Community Quality Collaborative and how participating in the Community Quality Collaborative may enhance existing relationships and/or establish new connections for the advocacy group.
4 Institute for Healthcare Improvement Web site: http://www.ihi.org/IHI/Programs/Campaign/Campaign.htm?TabId=1
5 Judith H. Hibbard, Jean Stockard, and Martin Tusler, “Does Publicizing Hospital Performance Stimulate Quality Improvement Efforts?” Health Affairs, (22) no. 2, 84-94. (2003)