Supplement

The Imperative to Promote Collaborative Consumer Engagement: Lessons From the Aligning Forces for Quality Initiative

Published Online: September 21, 2012
Debra L. Ness, MS
Truth, justice, and fairness. Everybody is for them, which is why so many public policy proposals are described in those terms. But when it comes time to roll out the specifics, it  turns out that exactly what is truthful, just, and fair is almost entirely in the eye of the beholder.

The same dynamic is at work with consumer engagement in healthcare. Almost everyone says it is essential, beneficial, needed, and overdue. Hardly anyone argues against it. However, what consumer engagement means in practice varies dramatically based on personal definitions.

One thing is very clear: achieving a meaningful definition and shared understanding of consumer engagement is a critical step in making real progress as the nation works to transform its healthcare system to make care more efficient, affordable, effective, and patient-centered. Put simply, we can’t get to patient-centered care without engaging patients in a collaborative way. That’s what consumer engagement is all about.

The experience provided by the Aligning Forces for Quality (AF4Q) initiative—the Robert Wood Johnson Foundation’s signature effort to lift the overall quality of healthcare in targeted communities, reduce racial and ethnic disparities, and provide real models for national reform—has advanced the work to define consumer engagement. Developing a concept as revolutionary as this one doesn’t happen in a straight line, of course. The experience gained through the AF4Q initiative has come in fits and starts because, inevitably, it was affected by broader confusion in the healthcare world about what defines genuine consumer engagement. Our understanding of what consumer engagement is, and how best to implement it, is still evolving. However, 6 years after the AF4Q initiative began, the National Partnership for Women & Families unequivocally recognizes that it has made valuable contributions in clarifying and building shared understanding of the concept. It positioned us to develop and advance a shared vision for this work and gave us real confidence that it can be done.

Despite a tremendous contribution, years of work lie ahead. True collaborative consumer engagement, implemented broadly, would amount to nothing less than culture change for our healthcare system—and culture change is never quick or easy. However, it can and must be done because, without it, our healthcare system will surely remain fragmented, inefficient, plagued by disparities, and ineffective in ways that cause real harm. There is an urgent imperative to continue this work.

Viewpoint of the National Partnership for Women & Families

Most providers and healthcare stakeholders today say they are dedicated to creating a patient-centered healthcare system–that is good news. However, the bad news is that too often patients, family caregivers, and consumers are omitted from the process of designing, implementing, and evaluating change. If that continues, the best possible result of this work is a care system that may become more consumer-friendly or patient-focused. Although this may be an improvement, it will not bring the kind of systemwide transformation that the nation needs.

We need a common understanding that real engagement is more than getting consumers to do what providers and payers want. It’s more than creating financial incentives, or providing the right information to steer consumer choices, convincing patients to adopt healthy behaviors, getting them to manage their chronic conditions, or getting them to interact more effectively with providers.

Although these are laudable goals, they may not genuinely engage consumers or help us achieve patient-centered care. True consumer engagement is collaborative. It makes consumers equal partners in defining, designing, and assessing the care practices and systems that serve them. It engages consumers at all levels—from policy to governance, to redesign of care practices, to individual/family engagement, to community involvement.

That kind of engagement has transformational power. At the national level, for example, consumer advocates have become a game-changing force that is shaping policy around payment, quality improvement, and care delivery.

We need that kind of consumer-driven transformation at the community level. It can and must be done, because only by engaging patients, families, and consumers in  designing care that meets their needs—giving them a voice, really hearing what they say, and taking it as seriously as the voices of other stakeholders—will we achieve the change we need. Just as it would be unthinkable, perhaps even laughable, to gather untrained consumers in a room to decide how to fix the physician payment system, it must become unthinkable for other stakeholders to decide what consumers and patients need without engaging them in the conversation from the very start.

Existing mind-sets and practices can be hard to break, and the National Partnership for Women & Families is advocating for real transformation. That means no longer allowing others to represent consumers. It means no longer putting a token consumer or two in the proverbial room late in the process, after key decisions have been made. It means no longer allowing providers, purchasers, and other stakeholders to design the system without the voices of those it is intended to serve. It means that consumers and patients are given the support they need to contribute in a meaningful way. It means a whole new way of thinking, a whole new way of working, a whole new kind of respect.

It means a whole new kind of healthcare system that works for all who count on it.

Lessons From Aligning Forces for Quality

The concept of collaborative consumer engagement is now reasonably well developed, and support is growing. The AF4Q initiative has contributed to its development and evolution, and to the distillation of numerous lessons and best practices. My colleagues and I believe that the 6 years of work on this project have offered critically important lessons.

Lesson 1: You Can’t Achieve What You Can’t Define

PDF is available on the last page.

Issue: The Aligning Forces for Quality Initiative: Early Lessons From Efforts to Improve Healthcare Quality at the Community Level
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