The Community Quality Collaborative Leader’s Guide to Engaging Consumer Advocates

Section 4: Educating Advocates

During the recruiting stage, Community Quality Collaborative leaders (or their proxies) started the process of educating consumer advocates about health care quality issues. Once they have agreed to participate in the Community Quality Collaborative, that education needs to shift to a deeper level so that the advocates can be fully involved.

The most important thing for Community Quality Collaborative leaders to keep in mind is that the education of the advocates will be an ongoing process. You can plant the seeds in the early start-up phase of the Community Quality Collaborative, but realistically, it will take some time for the advocates to build their knowledge base and become fluent in the language of quality. You also should remember to avoid acronyms and encourage the advocates to ask for clarification of terms or concepts.

Why Quality Should Concern Consumer Advocates

There is no way to generalize about what consumer advocates will already know about quality, but you can assume that there will be wide variation in their knowledge and in their views about the health care system. Some may have misconceptions about the health care system, such as the notion that more services and treatments are better than fewer and more expensive treatment is better than less costly care.⁸

While you may want to adjust your approach to account for what they may already know, there are several major points you will want to cover:

• What you mean when you refer to the problems with health care quality. To help advocates understand what you mean by quality problems, talk about the ramifications of underuse, overuse, and misuse of health care. (See the Fact Sheet Series included in the Consumer Advocate Workshop Template materials section of this toolkit.) In this conversation, you may have to tackle two common misperceptions about quality. First, there may be a misperception that more care is better care. Second, some people may not be aware that underuse is also a problem. To counter those beliefs:
  • Cite statistics on the variations in the delivery of care across the country. Whenever possible, use data from your state or even your community (e.g., AHRQ’s HCUPnet: http://hcupnet.ahrq.gov/ and National Healthcare Quality Report (NHQR) and State Snap Shots: http://www.ahrq.gov/qual/measurix.htm#quality).
  • Explain that there is a growing body of evidence about what and how much care is most effective.
  • Tailor the information you present to the advocates as much as possible by focusing on the aspects of health care that are important to them (e.g., diabetes care, or care for children.) Include information about patients’ experiences with care and the CAHPS surveys. Information on CAHPS can be found here: https://www.cahps.ahrq.gov/default.asp.
  • Discuss Community Quality Collaborative resources specific to consumer organizations such as the Agency for Research on Health and Quality’s Questions Are the Answer Web site available at: http://www.ahrq.gov/questionsaretheanswer/. The Web site includes information directed at consumers on reducing medical mistakes, building a list of personalized questions to bring to doctor visits, and preparing for surgery.

• Poor quality is a problem for everyone. Many people mistakenly believe that only those who are poor are at risk for poor quality care. It is important to show how quality problems impact people of all socioeconomic levels. You may want to explain how people in a relatively wealthy community may be more likely to receive unnecessary care, putting them at risk of complications and errors in care that could have been avoided.

  You also may want to use the following messages that have been tested with consumers in the Robert Wood Johnson Foundation’s 14 Aligning Forces for Quality communities:⁹

  “Getting good medical care is a worry for many people. There are too many choices and not enough clear, trustworthy information.”

  “Many people don’t have close relationships with their doctors anymore. Finding the right doctor can be tough in a confusing health care system, and the journey can leave some people feeling uneasy about the care they receive.”

  “Most doctors are pressed for time these days, and patients feel like they don’t have time to really ask their doctors questions. Rushed doctor visits can leave people with lingering concerns about their treatments or medications, or not having fully explained their symptoms.”

• Poor quality reflects problems with the system. In the experience of the authors, advocates are often protective of health care providers and do not want individual doctors singled out. Explain that poor quality has many causes, such as inadequate communication and lack of coordination, that are a function of how the system works rather than the limitations of individuals and that your Community Quality Collaborative’s efforts are aimed at improving the health care system. It may be helpful to say something like:

  “In every community, both good and bad care is being provided in hospitals and doctors’ offices. There are too many mistakes and too much miscommunication in the health system that can negatively affect people’s lives.”¹⁰

• Poor quality is a problem we cannot afford to neglect. Advocates, like many of the people they represent, may believe that fixing the health care quality crisis will lead to even higher health care costs. It is critical to talk about the costs, financial and otherwise, associated with poor quality care, and how the savings achieved through higher quality could be used to expand access and achieve other worthy goals. Using messages that encourage the advocates to get involved and take action is important. For example, you may want to say:

  “People can improve their care by learning more about their doctors and their own conditions—asking questions, sharing their medical history, making sure they understand their doctor’s recommendations, and taking the necessary steps to feel better sooner.”¹¹

What Others Are Doing

Consumer advocates need to know that the efforts of the Community Quality Collaborative are consistent with work being done across the country by many other multi-stakeholder collaboratives, including the other Community Quality Collaboratives. This context will help them see that they will be part of a large movement confronting the same challenges.

While you want to avoid overloading the advocates with information, you can touch on the various initiatives in place at this time:

• Chartered Value Exchanges (Community Quality Collaboratives): Your Community Quality Collaborative is part of a nationwide learning network organized by the Agency for Healthcare Research and Quality to promote transparency about the quality and cost of services delivered by health care providers. Each Community Quality Collaborative includes key stakeholders such as public and private payers, providers, plans, and consumer advocates. Community Quality Collaboratives focus on one or more of eight areas: collaborative leadership and Community Quality Collaborative sustainability, public at-large-engagement, quality and efficiency measurement, public reporting, provider incentives, consumer incentives, capacity for improving quality, and health information technology/health information exchange. Learn more at: http://www.hhs.gov/valuedriven/communities/valueexchanges/exchanges.html and http://www.ahrq.gov/qual/value/localnetworks.htm.
• Aligning Forces for Quality (AF4Q): This national program of the Robert Wood Johnson Foundation operates in 14 communities, and is sometimes referred to as “AF4Q.” These communities are funded to make progress in five key areas: performance measurement/public reporting, consumer engagement, quality improvement, reducing racial and ethnic gaps in care, and enhancing the central role that nursing plays in good health care. Learn more at: http://www.forces4quality.org/default.asp.

Depending on your location, you also may want to share information about local, state, and regional initiatives related to or separate from the above initiatives.

Tips for Community Quality Collaborative Leaders Regarding the Education of Advocates

Getting any Community Quality Collaborative stakeholder, including consumer advocates, up to speed on quality issues is not a simple or one-time task. It will take time and repetition to get the advocates to a point where they feel engaged and knowledgeable. Community Quality Collaborative leaders need to view this up-front effort as an investment that will bear fruits later.

The following guidance is intended to help make this process more effective and efficient:

• Be wary of information overload; do not try to tell advocates everything at once.
• Use your time efficiently by meeting with as many advocates as you can at the same time. Provide lunch or dinner, as appropriate.
• Use a slide presentation, tailored to the advocates’ constituencies, to break down your messages into manageable pieces. (See AHRQ slides on AHRQ’s Learning Network for Community Quality Collaboratives Web site under the “Program Info” tab and the PowerPoint slides included with this toolkit.)
• Be prepared with more detailed materials that the advocates can review after the meeting.
• Leave a substantial amount of time for questions.
• Contact each advocate after the meeting to answer questions, reinforce the key messages about the importance of the Community Quality Collaborative’s initiatives and how they’ll benefit the advocate’s constituents, and encourage their participation in specific activities.

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⁸ Dr. Carolyn Clancy, Busting Myths About Health Care Quality. Agency for Healthcare Research and Quality (February 19, 2008): http://www.ahrq.gov/consumer/cc/cc021908.htm.

⁹ Communicating About “Quality” Health Care: Messages to Support RWJF's Efforts to Improve the Quality of Health Care in Communities. (November 2007). Robert Wood Johnson Foundation.

¹⁰ Ibid.

¹¹ Ibid.

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