Introduction

The Agency for Healthcare Research and Quality (AHRQ) envisions Community Quality Collaboratives as communitywide partnerships of diverse stakeholders focused on improving health care quality and managing costs. For purposes of this guide, we will use the Institute of Medicine's definition of health care quality: “The degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge.”¹ The Community Quality Collaborative stakeholders include purchasers, health plans, providers, and representatives of consumer organizations.

When some of you formed your Community Quality Collaborative, you may not have been clear about the role and potential of consumer advocates. Why should you include them, and how will they contribute to the goals of the Community Quality Collaborative? What types of consumer advocates should you seek out and what role should they play in the Community Quality Collaborative? Equally important, how are you supposed to make this connection happen? This guide is designed to answer these questions for Community Quality Collaborative leaders.

The inclusion of consumer advocates is key to ensuring that your Community Quality Collaborative's efforts and end-results benefit all stakeholders, including consumers. In transforming the health care system and improving quality, consumers have important roles to play, including seeking out high-performing health care providers, communicating with their physicians, and committing to changing their personal behaviors. Also, they may act as stimulants for the system to become more patient-centered and might even offer specific quality improvement strategies to health care providers. The bottom line is that your Community Quality Collaborative's processes must include consumer representatives to achieve the goal of improving health care, and ultimately improving care for individuals. This concept is discussed in greater detail below. 

The First Question: Why Consumer Advocates?

AHRQ has specified that Community Quality Collaboratives include consumer advocates because these representatives can play an important role in the success of your initiatives. One basic reason is that your Community Quality Collaborative will have greater influence if all stakeholders are on the same page and working together. If consumer advocates are not included, there is a chance that, despite the best intentions, the Community Quality Collaborative may develop and implement a strategy that is contrary to the goals and interests of consumers, thus not effecting change in the community it is meant to help. Having representatives of consumers at the table early in the process is important to ensure that your Community Quality Collaborative's efforts to increase transparency and improve health care quality are relevant to the patients whose health and lives are at stake.

Consumer advocates have much to offer your Community Quality Collaborative:

• The ability to voice the needs and wants of consumers. Consumer advocates are in regular contact with their constituents. They are aware of their constituents' experiences with and thoughts on specific issues, which may include health care. Advocates also offer a broader perspective than the average consumer because they draw from the experiences of their membership rather than just their personal experiences with health care.
• The ability to reach consumers. Consumer advocates can be highly effective distributors of information to consumers. They typically have various channels in place to communicate with their constituencies, including Web sites, newsletters, broadcast e-mails, conferences, and mailing lists.
• Credibility with decision leaders. Many consumer advocates have earned the respect of other community members and established relationships with these stakeholders including the media, public policy makers, and elected and appointed community leaders.
• The trust of consumers and, therefore, the ability to educate and influence. Consumer advocates may be viewed as a trusted source of health care information. According to a California HealthCare Foundation report, other entities, such as health plans and employers, may not be viewed as an objective source of information. A 2000 survey that asked California consumers whether they trust different organizations as a source of information about health care and medical needs found that only 34 percent trusted employers “a lot,” and 18 percent did not trust employers at all.² Even fewer people trusted health plans: only 18 percent trusted plans “a lot,” and nearly 26 percent did not trust them at all. Voluntary consumer organizations focused on specific diseases, on the other hand, seem to have the confidence of consumers: over 65 percent of consumers indicated that they have “a lot” of trust in these organizations. Advocacy organizations are often perceived as having a mission that is consistent with the best interests of those they represent.
• The ability to empower and mobilize consumers. Because of their relationships and ability to communicate quickly and effectively with consumers, advocates can assist in mobilizing them to take action when appropriate-whether with their providers of care or their legislators-to push for better information and improved quality.
• An understanding of the community. Because they are integrated into the community they serve, advocates can make sure that the output of the Community Quality Collaborative is pertinent and useful to the community. They also can function as a sort of translator, in that they can talk about the work of the Community Quality Collaborative in terms that are meaningful to the community.

Next Question: How to Involve Consumer Advocates?

Involving consumer advocates in your Community Quality Collaborative will require an organized ongoing approach. First, you will have to identify the advocates in your community who will be a good fit and provide broad representation of local needs and interests. Every community has a variety of advocacy groups; homing in on the ones that will benefit-and benefit from-the Community Quality Collaborative will require some research and relationship-building.

Second, recruiting and cultivating relationships with key consumer advocates will take time and effort. While well-versed in the issues they address, consumer advocates are not likely to be familiar with all the goals and tasks of a Community Quality Collaborative. Education on quality issues and the role of the Community Quality Collaborative will be critical-both in the initial stages of recruitment and on an ongoing basis for those who agree to participate.

For some, getting new advocates fully engaged will require an investment of time and attention on your part. You will need to support the advocates in becoming part of the decision-making process and building relationships with other participants so that they feel like they have a real stake in the outcome of the Community Quality Collaborative's work and in its future endeavors. 

Overview of the Guide

• Section 1: Understanding Consumer Advocates - Who are advocates, what do they care about, and what are the best ways to ensure their involvement in the Community Quality Collaborative's work?
• Section 2: Getting the Lay of the Land - What do you need to know about the advocates in your community? What are their primary concerns relating to local health care issues?
• Section 3: Recruiting Advocates - What do you need to tell potential participants in the Community Quality Collaborative? What messages are likely to be effective, and which should you avoid?
• Section 4: Educating Advocates - What do you need to impart to advocates so that they can participate fully in the Community Quality Collaborative, and what are effective ways to convey this information?
• Section 5: Activating Advocates - What can you do to integrate advocates into the Community Quality Collaborative's projects and keep them engaged over the long term?
• Section 6: Resources - This section lists several useful resources for Community Quality Collaborative leaders as well as suggested reading for consumer advocates. 

¹ K.N. Lohr, Ed. (1990). Medicare: A Strategy for Quality Assurance. Washington DC: National Academy Press. 21. 

² Sandra H. Berry, Julie A. Brown, and Mark A. Spranca, Consumers and Health Care Quality Information: Need, Availability, Utility. California HealthCare Foundation. (October 2001).

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