Day 1: Best Practices for Collecting Patient Feedback

Keynote 1: The Importance of the Patient Voice in Health Care

Donna R. Cryer, J.D., is the founder and chief executive officer of the Global Liver Institute, the only patient-driven liver health nonprofit operating in the US and Europe. She has channeled her personal experience as a patient with inflammatory bowel disease and a 25-year liver transplant recipient into professional advocacy across a career in law, policy, consulting, public relations, clinical trial recruitment, and nonprofit management. Mrs. Cryer is a frequent speaker on the topic of patient-centeredness in healthcare transformation, digital health, and value. Mrs. Cryer received an undergraduate degree from Harvard/Radcliffe Colleges and a Juris Doctorate from the Georgetown University Law Center.

Contact: dcryer@globalliver.org


Panel 1: Connecting with Health Care Consumers to Drive Meaningful Change

Mark Humowiecki, J.D. leads the National Center for Complex Health and Social Needs at the Camden Coalition of Healthcare Providers. The Camden Coalition is transforming how care is delivered to individuals who face a complex array of medical, behavioral health, and social needs. Through the National Center, the Coalition is leading the development of the field of complex care. The National Center convenes, inspires, and supports a growing and diverse complex care community that includes clinicians, system leaders, payers, data scientists, researchers, policy experts, consumers and families. The Center provides training, shares best practices, and connects and supports complex care programs across the country. Prior to joining the Coalition, Mark served in senior policy positions in New York State government and was a civil litigator for six years. Mark is a graduate of Yale College and Yale Law School.

Contact: markh@camdenhealth.org

Andy Imparato began work in February as the Executive Director of Disability Rights California (DRC) after a high impact career in Washington, DC in disability advocacy and policy. DRC is the federally funded legal services agency that serves Californians with all disabilities across the age spectrum. While in DC, Imparato served as the Disability Policy Director for Chairman Tom Harkin on the US Senate Committee on Health, Education, Labor and Pensions and as President and CEO of the American Association of People with Disabilities, among other roles. Since joining DRC, Imparato has worked in coalition to protect vital programs and services for people with disabilities and older adults and to prevent discrimination on the basis of disability and age as the State develops crisis care guidelines for rationing ventilators and other limited resources in response to the pandemic. He grew up in Southern California and is a graduate of Stanford Law School. His perspective is informed by his lived experience with bipolar disorder.

Contact: andy.imparato@disabilityrightsca.org

Karen L. Marshall, J.D., is the director of advocacy and engagement at the National Alliance for Caregiving. Karen began her career as a regulatory and government affairs attorney, primarily representing the financial services industry. Karen’s career detoured when she became a family caregiver for both parents, helping them face multiple severe illnesses and aging issues. During her time caregiving, she provided care both in-home and as a working, long-distance caregiver. Those experiences ultimately inspired her to found Kadamba Tree Foundation, a nonprofit offering education and support programs as well as evidence-based interventions to family caregivers. She is a certified program leader for the Rosalyn Carter Institute’s (RCI) Caring for You, Caring for You Me and Dealing with Dementia programs. She has also been a certified interventionist and Master Trainer for the Rosalynn Carter Institute’s evidence-based Resources for Enhancing Alzheimer’s Caregiver’s Health (RCI REACH) program. In addition to developing and facilitating caregiver programs, Karen has helped community groups and governmental entities develop and deliver caregiver outreach programs. She frequently speaks as a caregiver advocate and has volunteered as a caregiver support group facilitator and presenter of the Alzheimer’s Association’s Legal and Financial Planning workshop. She has helped coordinate efforts to establish local collaboratives and coalitions that serve family caregivers. A graduate of Duke University School of Law and a member of the District of Columbia Bar, she has provided several hours of pro bono legal assistance to older Americans and their loved ones. Karen continues advocating for the caregiving community at NAC. In her current role, she works with a network of grassroots advocates to expand and sustain infrastructure supporting family caregivers across the lifespan. She also helps support legislative and regulatory efforts that advance family caregiving across healthcare and social service systems.

Contact: karen@caregiving.org

Kirsten Sloan is senior policy director for the American Cancer Society’s Cancer Action Network (ACS CAN). In this capacity she manages a team of six senior policy principals and analysts with a focus on access to care, emerging science and prevention. Prior to joining ACS CAN, Kirsten was Vice President of the National Partnership for Women & Families with responsibility for the organization’s multi-faceted health portfolio. Kirsten was also Director of Federal Health Issues for AARP. In that role, she served as chief health lobbyist and managed a team of senior lobbyists in AARP’s Government Relations Department. Kirsten and her team worked directly with Congress and the Administration on advancing AARP’s key health care priorities including Medicare, prescription drugs, long-term care, Medicaid, managed care, health insurance, and health care quality. Earlier in her career at AARP, Sloan worked as the National Coordinator for Health Issues, Health Team Deputy Director, Medicare lobbyist, and as Legislative Specialist with a focus on the Catastrophic Coverage Act. Prior to AARP, Kirsten was the Legislative Aide for Congressman Norm Dicks (D-WA) and was responsible for health care appropriations and aging issues. Kirsten Sloan is a graduate of the University of Washington in Seattle, WA. She currently resides in Washington, DC.

Contact: kirsten.sloan@cancer.org

Alayna Tillman is a wife, mother, grandmother, and an activist who grew up in Queens, New York. God took Alayna and her family on a 12-year caregiving journey to provide care for her mother, father and aunt in her home. As a way of saying thank you to the organizations that helped her family navigate this journey, Alayna became an advocate to work alongside them. She also became a support group facilitator for family caregivers as a way to share what she learned with members of the community. She has spent years as a member of the Community Advisory Board for the Los Angeles Caregiver Resource of USC, member of the Community Advisory Board and the Speakers Bureau of Alzheimer’s Los Angeles, member of the Alzheimer’s Congressional Ambassador team, and an advocate for Leeza’s Care Connection in Burbank California. When she has free time, Alayna enjoys spending time with her family, doing genealogy research and playing word games.

Contact: wecare4others@gmail.com