to improve research. Patient-initiated data collection initiatives, including social networking and information sharing services, have provided important resources for discovery and played a role in better informing patients and investing them in the research enterprise. James Conway of the Institute for Healthcare Improvement explores the potential for greater patient and public engagement to improve health system performance, noting the growing evidence base of how patient engagement could improve a wide array of health and system outcomes, from patient adherence, to clinical outcomes, to financial performance. He proposes a framework to better connect and align the interventions currently under way and encourage and support the development of effective public engagement initiatives. A third paper, by Karen Sepucha of Massachusetts General Hospital, addresses opportunities to better engage patients in treatment decisions through more effective patient–provider communication about patient concerns, expectations, and preferences in order to make shared decision making a routine part of the clinical care encounter.


Sharon F. Terry, M.A.
Genetic Alliance

At the center of a learning health system are individuals, families, and communities. As all citizens are eventually members of this stakeholder group, an effective healthcare system must keep this group’s interests paramount. The learning touted as part of the exemplary system must fuel action to transform health care to better serve the needs and interests of individuals, families, and communities, and in essence be accountable and self-correcting. A key component of such a system is a culture that promotes and supports public interest and investment in helping to advance the research enterprise. Although public engagement in health care is often viewed from the narrow perspective of participation in clinical trials, many initiatives currently under way create a very different vision for the range of contributions individuals, families, and communities can make to improve research efforts on the value, science base, and patient experience of health care delivered—from information for basic research to efforts to drive improvements to best practices.

This paper reviews trends in public awareness of and interest in opportunities to contribute to learning about what works in health care, such as improving access to and expanding the use of clinical data, and provides examples of initiatives aimed at supporting patients in these roles. Key lessons learned from current efforts to improve public understanding of the issues

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