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Effective Health Care Program

Facilitating Patient Engagement (Session III)

White Paper

This conference took place on September 17, 2015, in Houston, Texas and brought together nine nationally prominent experts in patient engagement to address the following topics: 1) understanding patient engagement conceptually and contextually; 2) overcoming barriers to patient engagement; 3) activating facilitators of patient engagement; and 4) presenting case studies of successful interventions for increasing patient engagement.

This third session addresses facilitating patient engagement.

Presentations*

Expanding Opportunities and Emerging Experience for Patient Engagement Using Technology

Adriana Arcia, Ph.D., R.N.
Columbia University School of Nursing, New York, New York

Patient and Family Engagement: A Framework for Developing Interventions and Policies

Kristin L. Carman, Ph.D., M.A., and Thomas A. Workman, Ph.D.
American Institute for Research, Washington, DC

A Patient’s Perspective for Researchers and Disseminators – Facilitating Patient Engagement

Amye Leong, M.B.A.
Healthy Motivation, Santa Barbara, California

*These presentations are available for viewing in video (MP4) and PDF. For help accessing these formats, please visit the Viewers, Players, and Plug-ins page.

Biosketches

Adriana Arcia, Ph.D., R.N., researches informatics-based approaches to health communication. She has a particular interest in meeting the information and learning needs of childbearing women at all levels of health literacy through consumer health informatics tools. Among Dr. Arcia’s current projects is a study to explore the feasibility and acceptability of an online maternity education platform among Medicaid-enrolled pregnant women. Other ongoing work is focused on the use of information visualizations among predominantly Latino community members with varying levels of health literacy. The goal of this work is to give community members the information they need to engage in effective health self-management by using tailored infographics to support comprehension of their personal health status. Preliminary findings highlight the importance of using empirically-tested culturally competent images for supporting comprehension and motivating health-promoting behaviors.

Kristin L. Carman, Ph.D., a vice president at AIR, leads a team of over 70 health services research professionals conducting research on issues of public importance in health care quality, access, financing, comparative effectiveness research, patient and family engagement, health systems improvement, public deliberation, and health-related communications. Dr. Carman's work developing and evaluating information for use by patients and consumers, purchasers and health care providers includes a specific emphasis on explaining evidence-based information for use in decision making. She is well regarded for her work assessing the performance of health care organizations and determining how best to enable improvement in organizational performance. In addition, Dr. Carman is a nationally known expert on reporting health care quality and delivery information and the development and testing of effective data displays of complex information (paper and Web-based). She has developed products, materials and technical assistance to support organizations and communities to engage members of the public in their health and health care. In addition to her continuing work supporting consumer engagement for the Robert Wood Johnson’s Foundation’s Aligning Forces for Quality project, Dr. Carman currently leads two groundbreaking consumer engagement projects funded by the Agency for Healthcare Research and Quality (AHRQ). The first is to develop, implement and evaluate a Guide to Patient and Family Engagement in Health Care Quality and Safety in the Hospital Setting, an evidence-based resource with specific strategies for hospitals to implement and use to develop effective partnerships with patients and family members. Second, she leads a large, randomized controlled deliberative methods demonstration to expand public input into AHRQ’s Effective Health Care Program and to advance the field of public deliberation. She is also a nationally recognized expert in qualitative methods and mixed methods use in health services research. Prior to joining AIR, Dr. Carman was at RTI International, where she conducted studies on the assessment of health plans and reporting of quality information, and led evaluations of these efforts. She worked as a legislative analyst for the Illinois General Assembly for many years before entering graduate school.

Amye Leong, M.B.A., is an internationally-recognized patient advocate leader, speaker, author and educator. She is President/CEO of Healthy Motivation, a health education and advocacy consulting firm in Santa Barbara, California. Clients include governments, industry and non-government organizations in 18 countries who seek expertise in patient-centered care, patient engagement in research, advocacy and patient advisory programs as well as strategic planning, group facilitation, marketing to patients, conflict resolution, and building networks and collaborators. Diagnosed with rheumatoid arthritis at age 18 and later with Sjogren’s syndrome and osteoporosis, she became wheelchair-bound within 6 years. After 16 surgeries and 12 joint replacements, she developed America’s largest network of 40-plus young adult arthritis education/advocacy programs, and became a respected medical and motivational speaker, advocate, strategic advisor and facilitator. Ms. Leong has advised and/or participated in key meetings with the US Food and Drug Administration, Critical Path, National Institutes of Health (NIH), Patient-Centered Outcomes Research Institute, and the Agency for Health Research and Quality on the topic and processes of integrating the voices of patients and stakeholders into research development. She recently served on the NIH Director’s Council of Public Representatives and on the Editorial Board of the International Journal on Self-Help and Self Care. She also served as the primary patient advocate on the task force developing treatment guidelines for rheumatoid arthritis for the American College of Rheumatology. Ms. Leong is helping the National Institute of Arthritis, Musculoskeletal & Skin Diseases (NIAMS) Clinical Trials grant review process incorporate patient advocates as reviewers. She is also the patient advocate on the National Steering Committee of the Centers for Research and Education on Therapeutics (CERTS). Since 2002, Ms. Leong has participated in Outcome Measures in Rheumatology, an international research consortium developing leading outcome measures, as a patient research partner. Ms. Leong serves as Chair of the California Central Coast Arthritis Foundation and Vice Chair of the California Arthritis Foundation Council, advocating with state health policy leaders and legislators on the needs and issues affecting over 6 million of Californians with arthritis and musculoskeletal diseases. Ms. Leong was honored at the White House by President G.W. Bush with the 2001 President’s Service Award, America’s highest honor for community service. The Arthritis Foundation named Ms. Leong one of its America's Fifty Heroes and awarded her its highest honor, the Harding Award. As a Community Hero, she carried the Olympic Torch for the 1996 Olympic Games. She was appointed to the NIAMS Advisory Council and chaired the Surgeon General’s National Council on Self-Help and Public Health under C. Everett Koop. Ms. Leong served as International Spokesperson for the United Nations Bone and Joint Decade from 2000-2010 and 2013-present (under the new organizational name of the Global Alliance for Musculoskeletal Health). She is the author of "Get a Grip: A Take Charge Approach to Arthritis" (2002), its Spanish translation, "SUPÉRATE!" (2004), and "The Complete Idiot's Guide to Arthritis" (2009) along with Patient Advocacy and Arthritis in the World Health Organization Bulletin (2004) and over 15 other peer-reviewed journal articles. Ms. Leong continues to travel the world for the Global Alliance motivating people affected by chronic disorders to take charge of their health and well-being, and facilitates leaders of health professional societies, patient advocacy groups, industry, academic and research institutions, and governments to work together to improve musculoskeletal care. She earned a B.A. in Communications from the University of California and M.B.A. from Purdue University.

Thomas A. Workman, Ph.D., is a Principal Researcher in AIR’s Health Policy Research & Innovation unit of the Health and Social Development Program. His work focuses on patient and consumer engagement in healthcare improvement, health research, and value-based decision making. He was a contributor to the Roadmap for Patient Engagement in Health Care Practice and Research, funded by the Gordon and Betty Moore Foundation, and serves as the project director for a national survey of clinicians, researchers, patients and caregivers for PCORI. Dr. Workman has also led multiple teams to analyze public comments and engagement evaluation data for PCORI. He also facilitates patient and consumer organization partnerships for the Agency for Healthcare Research and Policy through the John M. Eisenberg Center for Clinical Decisions and Communications Science. He recently led the team providing technical assistance in patient and employer engagement for the Aligning Forces for Quality initiative funded by the Robert Wood Johnson Foundation. Dr. Workman is a frequent guest lecturer on dissemination and diffusion for the Milken School of Public Health at George Washington University. Prior to his work at AIR, he served as the Production Lead for the John M. Eisenberg Center for Clinical Decisions and Communication Science at Baylor College of Medicine. Dr. Workman holds a Ph.D. in Communication Studies (Health Rhetoric & Culture) from the University of Nebraska-Lincoln.