Patient and consumer engagement in health and health care is increasingly seen as vital to improving the performance of the U.S. health care system.

Mounting evidence suggests that there are benefits to active patient and consumer participation in care, and both individually and in groups, patients and consumers are demanding more evidence and resources to help them make informed decisions.

Similarly, momentum is building for greater patient and consumer engagement in the research processes that serve as the basis for determining what treatments are available, and how and where care is delivered. While patients and consumers already engage in some aspects of healthcare research, it is often in a limited capacity, with inadequate resources and support, and/or for a limited time.  That is, patients and consumers are sporadically engaged, and often only as final reviewers or testers once the evidence generation process is nearly complete.  While this is the norm, it represents an extremely narrow opportunity for engagement, and many acknowledge that the time for change has come.

Comparative effectiveness research (CER), patient-centered outcomes research (PCOR) and quality improvement (QI) all offer opportunities for patient and consumer involvement earlier, in both the design and implementation phases of the research process.  The advent of new technologies -- personal health records and mobile health (mHealth) for example—also presents more opportunities for patients and consumers to engage at times that are contextually appropriate and convenient for them, and in contributing information that they deem relevant and important.

Involving patients and consumers will help to ensure that evidence being generated can be used effectively to address their concerns and meet their needs. And yet, despite broad and growing support for more significant and meaningful patient engagement, questions regarding how, when, to what extent, and under what conditions patients and consumers should be involved in the evidence generation process still remain. As outlined in a recent AcademyHealth brief, these are not rhetorical or theoretical questions – there are practical concerns as well as limitations in the existing research enterprise. Developing partnerships between patients, consumers, and researchers will require an investment of time, financial resources, training, and support.

A number of resources (e.g., frameworks, principles) have emerged to consider these questions – many aiming to stimulate dialogue and action among researchers, research funders and policymakers (see Concannon et al. 2012, Deverka et al. 2012, Mullins et al. 2012).While many call for the creation of new opportunities and supports for increased engagement, most focus on the research process itself.

AcademyHealth recently completed work on a framework that extends the engagement even further – involving patients and consumers in the development of data resources and other infrastructure to better address what they see as the most relevant and important questions.  This notion, which was discussed and vetted by a group of patient and consumer representatives, and health services researchers, acknowledges that the nature and quality of a research study is only as good as the underlying data and methods; and questions of great importance are often left unanswered because the data needed to address them do not exist or are unavailable.  Hence, patients and consumers have – at least theoretically – much at stake in the development of important data resources and other infrastructure to support research.

AcademyHealth’s Framework for Engagement

In February 2011, AcademyHealth convened the Consumer Patient Researcher Roundtable (CPR), a group consisting of patient and consumer advocates and health services researchers. With a shared interest in improving health and healthcare, the group considered experiences in patient and consumer engagement, and proceeded to look for better opportunities for integration.

These discussions resulted in the first version of a framework for patient and consumer engagement in evidence generation. Supported by AcademyHealth’s Electronic Data Methods (EDM) Forum, the proposed framework reflects the philosophy that patients and consumers are important partners in research who have a shared interest in improving health and health care. It is unique in that it identifies important opportunities for patients and consumers to contribute well in advance of what is typical within the traditional research process.  Specifically, it points to the need for greater participation in both infrastructure development and research, as well as elements that cut across both (e.g., governance).

The framework also suggests specific opportunities for engagement in both processes.  For example, the provision of public input or public comment regarding the development of new data resources could be an opportunity for patient and consumer engagement in the infrastructure process.   Similarly, patients could interact with researchers and application programmers to design the content, format, and usability of electronic interfaces (e.g., web portals) to facilitate patient data collection. Patient or consumer representatives serving as a community liaison could help to inform research regarding the best or most appropriate mechanisms for engaging other community members in the research process. They could also make contributions to the development and implementation of research studies by serving as grant reviewers, members of advisory boards, and co-investigators of the studies themselves.

This framework is a starting point, and our hope is to stimulate further conversation and investigation of the possibilities for broader patient and consumer engagement in the full cycle of evidence generation.  We welcome your feedback, and encourage you to join the dialogue at: http://www.edm-forum.org/publicgrant/SubmitComments/.