Issue 140 | March 2021

IPFCC Events

Upcoming Free Informal Conversations “Where Do We Go From Here?” Tuesday, April 6th, noon ET  This is the 8th and final conversation in a series funded by a grant from the New York State Health Foundation. As you look back on living with COVID-19 for over a year, what insights have you gained? Were there high points in the year you wish to share and celebrate? It has been challenging and stressful for many of us. What have you or others done to strengthen individual and organizational resilience? What support and information in sustaining effective partnerships are still needed? How can we continue to learn together and support the core concepts of patient- and family-centered care?   Join us to identify ways that the PFCC.Connect learning community can continue to advance PFCC now and post-pandemic. These informal conversations are participatory in nature, building on the experience and strengths of those who join the call. The discussion is guided by what participants want to learn more about and through sharing our collective experiences.   Register today!

IPFCC at Work

Fox Chase Cancer Center is celebrating the 10th Anniversary of its Patient and Family Advisory Council. Bev Johnson, IPFCC President and CEO, was asked to help in planning the celebration and speak at their March meeting Celebrating Partnerships with Patient and Family Advisors and the Potential for the Future. For further information, see their PFAC’s 2020 and 2021 annual reports on IPFCC’s website here.

Resources and Opportunities

New Online Resource—MyHealthPriorities A new website, MyHealthPriorities.org, is now available to help older adults make care decisions with their health care team based on What Matters Most to them. MyHealthPriorities grew out of the Patient Priorities Care initiative at Yale, which helps patients and clinicians focus all decision-making and healthcare on what matters most: patients’ own health priorities. This approach is particularly suited for older adults who manage multiple conditions and navigate multiple clinicians. A national group of clinicians, patients, caregivers, health system leaders, researchers, and health policy experts developed this approach.

The Virtual Patient and Family Advisory Council in the COVID-19 Era This article discusses how a primary care clinic serving diverse and underserved communities transitioned to a virtual PFAC in April 2020 due to the pandemic. PFAC attendance increased after transitioning, and the article states that several barriers were removed such as transportation and childcare needs. The role of patient voice in pandemic-induced practice changes were confirmed by patient and family advisors along with staff, resident, and faculty advisors. Read the article to learn more.

Moffit Cancer Center Launches Patient-Researcher Forums This article discusses how the Moffit Cancer Center created and launched a Patient-Researcher Forum where patients/caregivers meet with researchers to share their story and experience. Moffit Cancer Center held 14 sessions with 29 patients/caregivers and over 200 researchers. Research staff reported that these forums “helped them gain new patient-centered perspectives and helped them practice communicating research to lay audiences.” Patients/caregivers reported that the forums helped them gain “a better understanding of research” and fostered “a personal connection with researchers.” Learn more here. The Moffit Cancer Center website has further information and a video describing the Patient Researcher Forum here.

NEJM Catalyst New eBook: The Power of the Patient Voice Don’t miss the NEJM Catalyst new eBook, The Power of the Patient Voice, which examines how leading health care organizations are giving “patients a more prominent voice, so they can take greater responsibility and be more accountable for their own care.” A range of experiences and ideas is discussed, including integrating social determinants of health, documenting the patient voice, and educating next generation medical professionals. Data for the eBook was gathered from surveys and interviews with members of the NEJM Catalyst Insights Council. Read it here.

Recordings from Past Webinars & Informal Conversations  A COVID Year in Review: What We’ve Learned About Partnerships Across the Continuum Thursday, March 11th, noon ET View the recording Other COVID specific webinar recordings are available here. If you missed previous webinars, you can access all the recordings here.

PFCC.Connect If you missed previous Informal Conversations, we encourage you to listen to the recordings and access materials/slides at PFCC.Connect Library. Not a member? Join PFCC.Connect today!

Pinwheel Sponsors A special thank you to our 2021 IPFCC Pinwheel Sponsors and their ongoing commitment to advancing patient- and family-centered care!

Akron Children’s Hospital Ann & Robert H. Lurie Children’s Hospital of Chicago Augusta University Health Beaumont Health Bronson Healthcare Children’s Specialized Hospital Hasbro Children’s Hospital/Rhode Island Hospital IWK Health Centre Joe DiMaggio Children’s Hospital at Memorial Luminis Health Anne Arundel Medical Center Massachusetts General Hospital MHA Keystone Center Moffitt Cancer Center Nationwide Children’s Hospital Penn State. Health Milton S. Hershey Medical Center Providence Health Care Stanford Health Care Thunder Bay Regional Health Sciences Centre University of Iowa Stead Family Children’s Hospital University of New Mexico Children’s Hospital

If you would like to learn more about IPFCC’s Pinwheel Sponsor Program or if you have any questions, please contact Sherry Hajec at shajec@ipfcc.org.