Strengthening Partnerships Between Patients and the Health System with Gwen Darien

Patients want partnership, shared decision making and quality engagements with their health system. In this episode, Dr. Elia Cole sits down with Gwen Darien, Chief Patient Engagement Officer at Patient Advocate Foundation and a four-time cancer survivor. They talk about agency in care, the patient and provider working as a team and what can be done to strengthen that connection. They also cover hospitality in healthcare and what it looks like when the system works well. Gwen closes with practical steps listeners can take to support improved healthcare in the US at the individual level, from voting to helping a neighbor get to an appointment. Key Takeaways Viewing patients as active partners in care rather than passive recipients Patients define their own goals and values Shared decision making produces stronger outcomes for the patient Quality of time matters more than quantity Partnership requires being allowed to partner Feeling heard drives satisfaction, even when outcomes disappoint Policy of all kinds is health policy Small individual actions add up to system change Timestamps 0:00 – Cold open: patients don't want to be seen as suffering victims or objects 1:29 – Welcome and introduction of Gwen Darien 2:23 – What pushes people to contact the Patient Advocate Foundation 4:37 – What the Patient Advocate Foundation does: case management, co-pay assistance, education and appeals 9:36 – Gwen's first diagnosis, and being an object of care rather than a partner 11:59 – The word "patient," and the dilemma with "suffering" language 13:20 – Goals, values and shared decision making 17:01 – Lessons from two oncologists and a decision to stop reconstruction 28:15 – Hospitality in healthcare: the MRI and the blues playlist 30:05 – It's not about time. It's about presence and listening 37:30 – Rising fear of unaffordable care and the "sick tax" 39:14 – Call to action: what listeners can do Additional Resources Patient Advocate Foundation: patientadvocate.org Total Assist co-pay program: totalassist.org National Academy of Medicine Video featuring Gwen Darien - https://nam.edu/product/healthy-provi... Will Guidara, "Unreasonable Hospitality" Ted Talk - https://www.ted.com/talks/will_guidar... Daniel Dawes, The Political Determinants of Health -https://www.press.jhu.edu/books/title... Aletha Maybank, William B. Jordan, Joneigh S. Khaldun, & Julia Caplan Health in All Policies -https://www.healthaffairs.org/content... About the Guest Gwen Darien is a longtime patient advocate who has played leadership roles in some of the country’s preeminent nonprofit organizations. As chief patient engagement officer at Patient Advocate Foundation, Darien leads programs that link PAF’s direct patient service programs to system change initiatives, patient education and advocacy to improve access to equitable, affordable, quality health care. As a four-time cancer survivor herself, Darien champions placing patients at the center of health system change, whether it is for research, public policy or direct services. Gwen is a member of the National Cancer Policy Forum of the National Academies of Science, Engineering and Medicine and a member of National Academy of Medicine’s Clinicians’ Forum on AI. Darien has served as a speaker, moderator and panelist at many national conferences. She has been the keynote speaker for several PCORI Annual Meetings, chaired an invited session for the Academy Health Annual Meeting as well as served as a moderator and panelist for numerous NASEM workshops. Darien also writes about her experiences as an advocate and cancer survivor. Follow Gwen on LinkedIn: linkedin.com/in/gwen-darien-34879ba Connect With The Problem List Website: theproblemlist.com YouTube:    / @theproblemlist   X: @theproblemlist LinkedIn:   / the-problem-list   Apple Podcasts: https://podcasts.apple.com/us/podcast... Spotify: https://open.spotify.com/show/3dP7RoY... Keywords: patient advocacy, shared decision making, Patient Advocate Foundation, Gwen Darien, patient agency, cancer survivorship, healthcare affordability, underinsurance, patient-centered care, hospitality in healthcare, social determinants of health, political determinants of health, health equity, doctor-patient relationship, health vs. health care, Dr. Elia Cole, The Problem List Music licensed through Soundstripe. Code: BGOOLUYQQUFUZCHU