Meet Our Patient Advisory Committee
We have assembled a distinguished group of patient advocates, patients, caregivers and researchers on patient engagement to advise about how best to continue educating and engaging patients, caregivers and the general public about trust in healthcare.
Bill Adams is a consultant who lives in west central Minnesota and works in public policy issues, specializing in health care and rural issues.
Bill’s patient engagement journey began as a member of the Institute for Clinical Systems Improvement Patent Advisory Council. He has been involved with patient-centered health care initiatives and has presented nationally on shared-decision making, patient experience and engaging communities in creating health.
Bill’s current work: Patient Revolution Fellow, ABIM Foundation Patient Engagement Advisory Committee, PCORI Ambassador, Patient Family Advisors Network Advisory Board, Baby Boomers for Balanced Health Care, Minnesota State Community Health Service Executive Committee, Minnesota Shared Decision Making Collaborative, Minnesota Alliance for Patient Safety Community Advisory Council, Minnesota Rural Health Association Legislative Policy Committee, PartnerSHIP 4 Health Community Health Board, and Lake Region Healthcare Patient Council.
Previous work includes: Right Care Alliance Patient Council Co-chair and Steering Committee, Minnesota Community Measurement, Aligning Forces for Quality, Minnesota Department of Health Measurement Framework Steering Team, CMS Technical Expert Panel, Consumer Reports Choosing Wisely Patient Champion Activists, Lown Institute Hospital Index Advisory Committee, and Academy Health on Driving Patient Centered Care Forward.
He has presented on the patient experience, shared decision-making, community engagement, and health care overuse.
Bill earned his BA from Macalester College and did graduate work at the University of Minnesota in the College of Business Administration and Department of South Asian Languages.
Delores ‘Miss Dee’ Collins, C-CHW, earned her Associates of Science Degree in Interdisciplinary studies – Early Childhood Development from Kaplan University. She is the founder and executive director of A Vision of Change, Inc. (AVOC), which offers prevention, intervention, and academic services throughout Ohio. She is a graduate of Cleveland State University’s Community Health Worker (CHW) Program and is a certified CHW through the Ohio Board of Nursing, and the Ambassador for the State of Ohio to the National Association of CHWs (NACHW).
She is the founder of The Greater Cleveland Community Health Workers Association and is a Community Health Ambassador for the Glenville neighborhood and a Master Trainer through the Stanford University Chronic Disease Self-Management Program. She is cross-trained in the Chronic Pain and the Diabetes self-Management Programs. Miss Dee’s vision is to embrace, empower, and motivate communities to help them overcome social determinants of health.
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, engagement and education at the National Patient Advocate Foundation and the Patient Advocate Foundation, Gwen leads programs that link PAF’s direct patient services to NPAF initiatives to help ensure access to equitable, affordable, quality health care.
A three-time cancer survivor, Gwen came into cancer advocacy 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.
Gwen serves on a wide range of program committees and workshop faculties. She is the Chair of PCORI’s Patient Engagement Advisory Panel and serves on the Board of Trustees of the USP. Gwen also writes about her experiences as an advocate and cancer survivor.
Dave Ellis is a national leader in providing trainings and facilitating conversations on the lasting impacts of Adverse Childhood Experiences (ACEs) and generational trauma. He shares his expertise with the State of New Jersey and coordinates statewide work related to ACEs.
“Every day, as public servants, we ask people to share their needs but not their stories. I used to talk about meeting people where they’re at. In reality, I want to meet people where they dream. We must hear their stories. It’s in that space between stories and dreams that we share our humanity, concern and care.” – Dave Ellis
- Founding Executive Director, NJ Office of Resilience
- National leader on the lasting impacts of ACEs and generational trauma
- Coordinates statewide efforts to prevent, protect against, and heal from the effects of Adverse Childhood Experiences
- Facilitated community dialogues and public-private partnerships to promote wellbeing across Minneapolis
- Lead trainer and facilitator on ACEs with the New Jersey Education Association
Carole Hemmelgarn, MS, MS, graduated from Colorado State University with a degree in Speech Communication. She received a master’s degree in Patient Safety Leadership from the University of Illinois at Chicago, and a second master’s degree in Health Care Ethics from Creighton University.
Carole has worked in health care for over 30 years. She was an adjunct professor at the University of Illinois Chicago for ten years teaching in their mater’s program for patient safety. Currently, Carole is the senior director education for the MedStar Institute for Quality & Safety. She is also the senior director for the Executive Master’s program for Clinical Quality, Safety & Leadership at Georgetown University.
Carole is involved in patient safety work across the country. She sits on the Leapfrog Patient & Family Caregiver Expert Panel, Board of Quality, Safety and Experience at Children’s Hospital Colorado, Pediatric Sepsis Outcomes Collaborative at Children’s Hospital Colorado, Clinical Excellence Council for Colorado Hospital Association, and the Board of Directors for the Collaborative for Accountability and Improvement. She is also a founding member of Patients for Patient Safety US. Her passion resides in transparency and communication after medical errors, health care communication, the power of storytelling in health care, and the aftermath endured by providers, patients, and families when medical harm transpires.
Candace Henley, CPN, founder and chief surviving officer at the Blue Hat Foundation, is a tireless advocate for colon cancer prevention and support. She was a single mother raising five children when she lost her car and home while battling colon cancer. Her own battle and the devastation it left on her and her children’s lives inspired her to create the foundation, which is founded on unconditional support and compassion for people fighting colon cancer. The foundation’s mission is to provide education, information, and free screenings for colon cancer in minority and medically underserved communities.
The Blue Hat Foundation started as a single event—Blue Hat Bow Tie Sunday—at one church in Chicago. The program is now in 15 churches and promotes “education through participation” by asking the congregation to wear blue in honor of someone who is fighting or passed away from colon cancer. In addition to the Sunday events, the foundation raises awareness about the disease’s signs and shares stories of personal experience through speeches, podcasts, articles and community partnerships.
Sarah Krüg is the is the CEO of CANCER101, a patient advocacy organization whose mission is to help patients and care/support partners navigate the cancer journey and partner with their health care team to make informed decisions. Sarah is also founder of the Health Collaboratory, a global innovation hub that’s build on the foundation of cultivating trust across health care, and advancing health equity by amplifying the voices of the patient and care partner in the co-design of the future of health care. Through the Patient Shark Tank ®, over 20,000 patients and care partners across disease states have evaluated innovations across the globe, including technology, education, research, and policy.
Sarah is the author of “A Roadmap to Wellness” with another book to launch in 2021. She is also a global speaker and recently gave a TEDx talk called “The Patient: Doctor Tango.” She previously held the position of global education director as well as patient advocacy lead at Pfizer. She also established the Global Investigator Initiated Research Program at Pfizer. Prior to joining Pfizer, Sarah spearheaded the development of Disease Management Clinical Pathways and conducted clinical research at Memorial Sloan-Kettering Cancer Center.
Alma McCormick is a member of the Crow Nation and executive director of Messengers for Health, a Crow Indian 501 (c) (3) nonprofit organization located on the Crow reservation in Montana.
Alma is a leader and a community activist for improved health and wellness amongst her people. Her educational background is in community health and she furthered her education receiving a BS in Health and Wellness from Montana State University-Billings. She has been actively involved in cancer awareness outreach and advocacy amongst Native American women in Montana since 1996.
Alma has extensive experience in conducting community-based participatory research projects addressing various health needs of the Crow people while working in partnership with Montana State University-Bozeman. She has traveled nationwide to present at health conferences to share the program’s successes. She has also co-authored numerous peer reviewed journal articles. Alma’s passion for her work in community outreach stems from her personal experience of losing a young twin daughter to neuroblastoma cancer in 1985.
Tara Montgomery is a trusted change leadership advisor and strategist who strives to connect the dots between healthy people and healthy democracies, bringing consumer and citizen perspectives to conversations about culture change in health care and other complex systems. Tara is driven by optimism about the power of collaboration to solve the world’s most challenging problems, having spent over two decades convening and partnering with US, UK, and international academic, cultural, scientific, and nonprofit institutions and leading strategic initiatives to advance public health, education, corporate social responsibility, and social change.
In 2017, Tara founded Civic Health Partners, an independent consulting practice working with purpose-driven health and technology organizations to improve their public engagement strategies and ethics policies. Observing close-up that sustainable change can only be achieved through people, Tara integrates executive coaching methods and frameworks into her practice. She works with leaders around the world to reflect on the intersection of empathy and evidence, and supports them through the development of ethical approaches to build public trust. She recently completed a research project on the role of trust in the US leadership response to COVID-19 and is applying her findings about trustworthy leadership in her coaching and advocacy work.
Tara previously led Health Impact at the US nonprofit publishing and advocacy organization Consumer Reports, where she developed strategies for protecting the health, safety, privacy, and pocketbooks of consumers, and advocated for increasing the transparency and accountability of corporate and government entities. She also launched the consumer campaign for Choosing Wisely in partnership with the ABIM Foundation.
She is a regular speaker at influential forums on consumer insights, health tech, ethics, and communications. Her work on trust has appeared in JAMA, BMJ Opinion, and the AMA Journal of Ethics podcast. She has served as Co-chair of the Ethics and Compliance Advisory Board for PatientsLikeMe and as a member of the Scientific Board of the Preventing Overdiagnosis collaboration. She is currently a public member on the Board of Directors of the American Board of Medical Specialties, where she also serves on the Ethics and Professionalism Committee.
Tara was educated at Kings College London and the London School of Economics and holds an Executive Mastère Spécialisé® in Consulting and Coaching for Change from HEC Paris and Saïd Business School, University of Oxford. She is an Adjunct Lecturer in Health Communication at Tufts University School of Medicine.
Susan Perez’s research focuses on understanding consumers’ decision-making processes in order to develop health care policies, information, and resources to promote high value decisions.
Susan has conducted studies that classified approaches to processing Internet health information among vulnerable populations; addressed statewide overuse of health care services; identified approaches for patients and providers to discuss the cost of care; developed a statewide campaign to address variation in C-section rates by working with both patients and hospitals; and illuminated consumers’ views of cost sharing, quality and network choice.
Prior to joining the faculty at the California State University, Sacramento Department of Public Health, Susan completed a postdoctoral fellowship in quality, safety, and comparative effectiveness research and earned a doctorate in Nursing Science and Health-Care Leadership program at the University of California, Davis.
Beccah Rothschild, MPA, is a consultant focusing on patient engagement, health communication and health literacy, and health care culture change. Prior to her consultancy, Beccah was the senior outreach leader for the Choosing Wisely campaign at Consumer Reports. In that role, Beccah was responsible for leading the consumer-facing component of the campaign, providing resources for health care consumers and providers so that they could engage in important conversations about the overuse and misuse of medical tests and procedures that provide little benefit and, in some cases, physical and financial harm.
Previously, Beccah was the director of health literacy projects at Health Research for Action, a center in the UC Berkeley School of Public Health. She also has managed the California Health Literacy Initiative, a project of California Literacy, Inc. and served as the family literacy coordinator at the Second Start Adult Literacy Program in Oakland, California.
Beccah has worked for over 20 years in the fields of patient engagement, health literacy, and health communication in numerous capacities, including direct service, project management, research, policy, and interventions. This has included leading several projects in partnership with private corporations, health plans, public-sector agencies, and non-profit groups, and also working across a multitude of health, disease, medication, and health insurance topics.
Beccah has master’s degree in public administration and non-profit management and a BA with majors in Spanish and global cultures. When not trying to change the culture of health care, you can find Beccah swimming between and around islands, on her yoga mat, out on a hiking trail, or curled up with a good book.
Claire is a federal policy analyst and patient advocacy blogger whose health history goes back to the early 1980s. Since then, she has managed a raft of serious conditions, both acute and chronic. She has also been a caregiver for both chronically ill and terminally ill family members.
A few years ago, Claire realized that her experience with health care could be used to help patients, so she started a blog and started looking for ways to use her skills to make positive changes to the health care ecosystem. Claire has a BA in Government from Smith College and an MA in Political Management from George Washington University.
You can reach Claire Sach’s blog here.
Denise Octavia Smith, MBA, CHW, PN, is the founding executive director of the National Association of Community Health Workers. Denise is a visiting scholar at the Harvard Medical School Center for Primary Care Program in Global Primary Care and Social Change, an Aspen Institute Healthy Communities Fellow, and a Robert Wood Johnson Culture of Health Leader.
As a woman of African descent, a Community Health Worker, certified patient navigator and survivor of a rare chronic disease, Denise is co-founder of the Community Based Workforce Alliance and the Vaccine Equity Cooperative and collaborates on national initiatives to advance CHW leadership and roles in COVID-19 response and community recovery, pursue racial equity, and improve clinical and community integration to address the social determinants of health. She envisions a culture of health where individuals have self-determination and dignity, where communities meaningfully contribute to system design and governance and where societies eliminate structural barriers to well-being.
Janice Tufte is an engaged patient partner in Health Systems Improvement, and receives care at Kaiser Washington. Janice has participated in more than six Patient Centered Outcomes Research Institute (PCORI) funded projects, from conference involvement to patient co-investigator, and is involved with measurement and guidelines, adding the patient/ public perspective to addressed subject matter. Janice has been a member of a collaborative effort addressing low-value care and Research, serves on an advisory panel for same.
Nancy C. Yedlin, MPH, retired in July 2021 from the Donaghue Foundation, a private funder of health services research where she was vice president and contributed to the design and evaluation of the Foundation’s grant programs and led programmatic efforts connecting health research to the real worlds of health care practice and policy. She spearheaded the formation of a volunteer, multi—stakeholder group, the Connecticut Choosing Wisely Collaborative (2014-2020), to promote the uptake of the Choosing Wisely campaign in Connecticut, and was instrumental in efforts nationally to identify and highlight ways the choosing wisely campaign could empower and support historically underserved patients and communities and contribute to achieving health equity.
Before joining Donaghue in 2005, Nancy spent almost 20 years in management and strategic planning roles related to the design and delivery of health plan benefits, at both PHS/Health Net Northeast and Pitney Bowes. She holds a master’s degree in public health from Yale University and a bachelor’s degree in cultural anthropology from Brown University. She is a past member of the Patient-Centered Outcomes Research Institute’s (PCORI) Advisory Panel on Healthcare Delivery and Disparities Research and currently sits on the State of Connecticut’s Cost Growth Benchmark Stakeholder Advisory Board is a long time member of the advisory board for the Yale School of Management’s student-led annual health care conference.