Patient Engagement Task Force Members
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A. Renee Bergstrom, Ed.D.

After retiring from the Mayo Clinic, A. Renee Bergstrom, Ed.D. focused on advocating for Somali women’s health. She and a young Somali woman produced a brochure to help pregnant women initiate crucial conversations regarding labor and delivery with their obstetricians/midwives. When she shared the tool with the Mayo Shared-Decision-Making team, they introduced her to organizers of the Patient Revolution. She offers the Patient Engagement Committee insights from those connections as well as her research on caring presence and years of listening to patients share both frustration and joy regarding their health care experiences.

Gwen Darien

Gwen Darien is a longtime patient advocate who has played leadership roles in some of the country’s preeminent nonprofit organizations. As executive vice president for patient advocacy, Gwen leads programs that link PAF’s patient service programs to NPAF initiatives, with the goal of improving access to affordable, quality health care.

Called “a bit of a renegade” by People magazine, Gwen has long insisted on pushing boundaries while maintaining a safe space for patients. As editor and publisher of Mamm, a magazine for women with breast or reproductive cancer, Gwen published features on previously taboo subjects, such as dating after a mastectomy, along with the more expected academic features on news and policy analysis. Her media leadership was recognized by the Avon Foundation, which honored her as one of “the most powerful women in breast cancer.”

As a two-time cancer survivor herself, Gwen came into cancer advocacy expressly to change the experiences and outcomes for the patients who came after her and to change the public dialogue about cancer and other life-threatening illnesses. With these goals in mind, in 2005 she started the first stand-alone advocacy entity in a professional cancer research organization at the American Association for Cancer Research, causing outside observers to note the organization’s “progressive commitment to patient advocacy.” At AACR, she launched CR magazine – a magazine for people with cancer and those who care for them. Later, she served as the executive director of the Samuel Waxman Cancer Research Foundation; director of The Pathways Project; and executive vice president of programs and services at the Cancer Support Community. In each role, Gwen championed placing patients at the center of health system change, whether it is for research, public policy or direct services.

While serving as the chair or on the board of a wide range of program committees and workshop faculties, including the Community Engagement in Genomics Working Group of the National Human Genome Research Institute and as a guest faculty member of the University of Wisconsin Center for Patient Partnerships, Gwen also blogs about her experiences for US News & World Report.  

Gwen is a graduate of Sarah Lawrence College, where she also served as an advisor for their Health Advocacy program. She grew up in Milwaukee, but now lives in New Jersey, where she cooks Persian dishes, collects earrings and improves her friends’ personal libraries, one book at a time.

Carol Cronin
Carol founded the Informed Patient Institute in 2007. Prior to this, she worked as a consultant and advisor to non-profit organizations, foundations and government agencies including the California Endowment, AARP, Atlantic Philanthropies, the Markle Foundation, and the Robert Wood Johnson Foundation. Carol was Director of the Center for Beneficiary Services at the Health Care Financing Administration (HCFA – now CMS) from 1998 to 2000, where she was responsible for the launch of www.medicare.gov, 1–800 MEDICARE and numerous other outreach and education programs. Prior to HCFA, she was Senior Vice President for Health Pages, a New York City–based consumer health information website, and worked in leadership positions at the Washington (now National) Business Group on Health. She serves on the Boards of the National Quality Forum, the Patient Voice Institute, the Citizen Advocacy Center, chairs the Joint Commission's Patient and Family Advisory Council and serves on the Johns Hopkins Hospital Patient and Family Advisory Council. She also serves as President of the Judy Family Foundation. She holds an A.B. degree from Smith College and two Masters degrees in Social Work and Gerontology from the University of Southern California. 
Joanne Disch
Joanne Disch is Professor ad Honorem at the University of Minnesota School Of Nursing and is the retired director of the Katharine J. Densford International Center for Nursing Leadership. She has held numerous national leadership positions, including board member and chair of the board for AARP, president of the American Association of Critical-Care Nurses, chair of the University Healthcare Consortium’s Chief Nurse Executive Council, and chair of the American Nurses Association's Committee on Nursing Practice Standards and Guidelines. Currently, she is Chair of the Chamberlain College of Nursing Board of Trustees, Chair-elect of the board of directors for the Aurora Health System, and serves on the advisory boards for a number of other national organizations.  She is a fellow in the American Academy of Nursing and served as its president (2011 – 2013).

Dr Disch was a founding developer of the QSEN (Quality and Safety Education for Nurses) initiative which was funded by the Robert Wood Johnson Foundation for 10 years, to (1) identify the competencies and knowledge, skills and attitudes (KSAs) needed by all nurses for safe nursing practice; and (2) to disseminate this content to nursing faculty throughout the United States.  The six competencies were patient-centered care, teamwork and collaboration, evidence-based practice, quality improvement, informatics and safety.  By the end of the project, more than 1200 faculty in 49 states had been educated and were working to transform their curricula to include this content.  More recently, Dr. Disch was a co-editor with Jane Barnsteiner and Mary Walton of Person and Familly-Centered Care, a text that offers a more contemporary approach to the traditional concept of patient-centered care.
Meg Gaines
Martha E. “Meg” Gaines, JD, LLM founded and directs the interdisciplinary Center for Patient Partnerships at the University of Wisconsin. The Center’s mission is to engender effective partnerships among people seeking health care, people providing health care, and people making policies that guide the health care system. The Center trains future professionals of medicine, nursing, law, health systems, industrial engineering, pharmacy and other disciplines together to provide advocacy services to patients with life-threatening and serious chronic illnesses in a transdisciplinary environment.

Ms. Gaines’ work focuses on consumer engagement and empowerment in health care reform where she has been privileged to collaborate with the Josiah Macy Jr Foundation, the Robert Wood Johnson Foundation, the Kaiser Family Foundation, and the National Cancer Institute among others.  She serves on the National Cancer Research Advocates of the NCI, recently co-chaired the Josiah Macy Jr Foundation annual conference on engaging patients in linking health care and health professional education reform, and co-authored the conference paper for the joint Arnold P. Gold & Schwartz Foundations conference on advancing compassionate, collaborative care.  Her publications include “Engaging Patients at the Front Lines of Primary Care Redesign: Operational Lessons for an Effective Program,” “Alchemy: Medical Mediation at Its Best,” “A Social Compact For Advancing Team-Based High-Value Health Care,” and “Medical Professionalism from the Patient’s Perspective: Is There an Advocate in the House?”

Distinguished Clinical Professor at the University of Wisconsin Law School, Ms. Gaines teaches courses related to consumer issues in health care, health care advocacy, health care reform, and patient-centered care to graduate students from law, medicine, public health, nursing, pharmacy, genetic counseling and others. Ms. Gaines earned her bachelor’s degree at Vassar College and holds Juris Doctorate and Master of Law degrees from the University of Wisconsin Law School. She is a long term survivor of metastatic ovarian cancer.
Nan Cochran
Nan Cochran, MD, FACH is an Associate Professor of Medicine at the Geisel School of Medicine at Dartmouth and the Dartmouth Institute for Health Policy and Clinical Practice, and an internist and geriatrician at the VA Medical Center in White River Junction, Vermont. After undergraduate work at Harvard, she received her MD at Harvard Medical School, and completed residency training in Primary Care Internal Medicine at the University of Washington. She designed and directs the clinical skills course, and is co-leading the clinical longitudinal curriculum redesign effort at Geisel. As a faculty member of the American Academy on Communication in Healthcare, she does faculty development and training in the areas of conflict management and negotiation, shared decision making and motivational interviewing. She lives in Vermont with her husband, Elliott Fisher and they have 3 wonderful daughters, Allegra, Kate and Josie. She loves to spend her free time in the wilderness with her family and friends and to x-c and telemark ski, bicycle, play ice hockey and tennis, garden and read.

Michelle Johnston-Fleece
Michelle Johnston-Fleece, MPH is a Senior Program Officer for the National Academy of Medicine's Leadership Consortium for Value & Science-Driven Healthcare, where she supports the Care Culture and Decision-Making Innovation Collaborative, the Patient and Family Leadership Network and the Executive Leadership Network.

Prior to NAM, Michelle was an Engagement Officer at the Patient-Centered Outcomes Research Institute (PCORI).  In that role she managed the patient and stakeholder engagement activities within the Improving Healthcare Systems portfolio of clinical comparative effectiveness research projects, collaborating closely with PCORI staff, funded investigators, patient, caregiver and stakeholder partners including health systems, business, payers and policymakers, as well as the community at large to support meaningful patient and stakeholder engagement in research, and to advance high-quality, evidence-based healthcare and improve patient-centered outcomes.

Michelle has worked to advance patient and family engagement in healthcare delivery for over a decade. She has served as the director of policy and advocacy at Cancer Support Community (CSC), where she oversaw the policy and advocacy activities at the federal level and in coordination with CSC’s local affiliates across the United States. Michelle also led the patient advocacy and patient experience improvement efforts for Einstein Healthcare Network, a large, urban, safety net healthcare system in Philadelphia. Before that, she was the Senior Policy and Research Analyst at the American Board of Internal Medicine and ABIM Foundation, where she was responsible for providing research, policy analysis, writing and project management for numerous ABIM and ABIM Foundation initiatives.  During her time at ABIM and ABIM Foundation, Michelle led the organizations’ efforts to engage patients, caregivers and consumers into program development and mulistakeholder convening meetings. 

Michelle's advocacy work was inspired by personal experience as the primary caregiver for her husband for five years until his death in 2004. As a volunteer, she has served on the Board of Directors of the National Coalition for Cancer Survivorship, the Novartis Oncology External Patient Workgroup and the American Academy on Communication in Healthcare Patient Engagement Task Force. In addition, she wrote the "Caregiving with Confidence" column for Cancer Today, a publication of the American Association for Cancer Research, for over two years.

Michelle holds a master of public health degree with a focus in health systems and policy from the UMDNJ School of Public Health (now known as Rutgers School of Public Health) and received her bachelor’s degree in sociology and media studies from New York University. 
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