Accountable care organizations (ACOs) aim to lower costs and improve the quality of medical care by making care providers and medical institutions jointly accountable for health outcomes and expenses. Along with his colleagues Jeremy Sugarman, MD, MPH, MA, and Scott Adam Berkowitz, MD, MBA, our Matthew DeCamp, MD, PhD, recently published an article in the American Journal of Accountable Care entitled “Meaningfully Engaging Patients in ACO Decision Making.” Here, he answers our questions about how and why ACOs should incorporate patient’s needs, values, and preferences into healthcare decision making.

What inspired you to write on the subject of patient engagement? Have you observed ACOs having trouble meaningfully engaging with patients?

The idea of engaging patients in ACO governance raises a host of fascinating ethical questions. What does it mean to be a “patient representative” on the ACO board? Who should the “representative” represent – their own personal perspective, the perspectives of all patients who receive care from the ACO, or simply a layperson, outside perspective? For the sake of justice, should the representative be someone from a historically marginalized and vulnerable group? How do or should representatives contribute to “fair” decision processes?

Trying to answer these questions has become a focus of my current research. With funding from the Agency for Healthcare Research and Quality, we are working to understand how ACOs nationally in the Medicare program are engaging patients via representation, and then to disseminate what works and find better ways of doing so. At this point, we simply do not know enough about how Medicare ACOs are implementing the regulatory requirement.

Why is it important for ACOs to engage patients?

We think meaningful engagement of patients in ACO governance has the potential to help ACOs achieve their aim of high quality care at lower cost. It could help ACOs set priorities and design care programs in ways that are consistent with their patients’ values; this will make those programs more likely to succeed. It could help increase trust in the organization, if patients know that they have a representative serving for them on the board. And in some cases – such as when a representative brings the voices of marginalized or vulnerable groups to the boardroom – it could help ACOs reach these groups. So there are both practical and ethical aims of engagement.

Your paper offers three basic steps of engagement: identifying patient representatives, cultivating relationships, and evaluating engagement. What does it mean for an ACO to take these steps meaningfully?

Of the three steps, there are two aspects that I find particularly important to meaningful engagement. First, cultivating productive relationships not only with the representative, but also between the representative and the broader ACO patient population to bring more voices into the boardroom; and second, defining what counts as “successful” engagement to evaluate and then improve the process.

Addressing the first of these is critical. If patient representation is meant to increase trust in the organization – you cannot increase trust if no one knows about it, or if patients broadly do not perceive the representative as representing them.

For the second, we need to understand how to measure engagement in governance. A few resources are out there for this, but much of the focus is on process measures (number of meetings, number of reps, time spent, and so on). How something is evaluated invariably affects how it is done, so we need to understand this evaluation piece better. Right now, we’re conducting a systematic review of this topic to learn more.

What are some of the challenges that arise when ACOs attempt to meaningfully engage?

Well, key challenges are always time and resources. It can take both to truly empower patient representatives to participate meaningfully in ACO decision-making. The ACO concept is somewhat arcane, or at least technical, in terms of how ACOs are defined and evaluated etc. So, there will be a need to educate representatives about what ACOs do. In addition, ACOs may need to take proactive steps to involve their reps in decisions, whether by actively soliciting input or by simply facilitating their involvement by making it easier to do so – free parking, for example.

Our ongoing research, of course, will help to identify these challenges and then, importantly, find ways to address them.

See Dr. DeCamp’s previous post on ACOs: What is an ACO?

 Matthew DeCamp, MD, PhD, is an Assistant Professor at the Johns Hopkins Berman Institute of Bioethics and in the Johns Hopkins Division of General Internal Medicine. A practicing internist, his current research interests include social media and medical professionalism, ethical issues in health reform (focusing on accountable care organizations), and global health (with special emphasis on short-term global health training).

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