Integrating the Patient and Caregiver Voice into Serious Illness Care: A Workshop

When: December 15, 2016 (8:00 AM Eastern)
Where: The National Academies Keck Center (100) • 500 Fifth Street, N.W.

Topics Aging, Diseases, Health Services, Coverage, and Access, Quality and Patient Safety
Activity: Roundtable on Quality Care for People with Serious Illness
Boards: Board on Health Care Services, Board on Health Sciences Policy

Blyth Lord, Courageous Parents Network and Richard Goldstein, MD, Boston Children's Hospital, Harvard Medical School

Susan West, Hertzberg Palliative Care Institute, Icahn School of Medicine at Mount Sinai and Diane Meier, MD, Icahn School of Medicine at Mount Sinai and Center to Advance Palliative Care

On December 15, 2016, the Roundtable on Quality Care for People with Serious Illness hosted a public workshop examining the challenges and opportunities associated with identifying and integrating the voice of seriously ill patients of all ages and their caregivers into person-centered care throughout the continuum of care. The workshop will feature invited presentations and panel discussions on topics including: patient-caregiver-clinician serious illness care experiences from both the pediatric and adult perspective, challenges and successes addressing socio-cultural differences in care for adults and children with serious illness; integrating person-centered care principles across the age spectrum, disciplines and diagnoses; and engaging and supporting patients, families and caregivers to communicate their needs, values and preferences with their care team.

Planning Committee Members

Rebecca Kirch, Co-Chair, National Patient Advocate Foundation
JoAnne Reifsnyder, Co-Chair, Hospice and Palliative Nurses Association
Bob Bergamini, Supportive Care Coalition
Amy Berman, The John A. Hartford Foundation
Kim Callinan, Compassion & Choices
Richard Averbuch, Blue Cross Blue Shield of Massachusetts
Kimberly Johnson, Duke University
Blyth Lord, Courageous Parents Network
Murali Naidu, Dignity Health
Sharon Pearce, National Hospice and Palliative Care Organization
Judith Salerno, Susan G. Komen
Kristen Santiago, Cancer Support Community
Katrina Scott, Association of Professional Chaplains
Sue Sheridan, Patient-Centered Outcomes Research Institute (PCORI)

Confirmed Speakers

Terry Altilio, Mt Sinai Beth Israel Medical Center
Anthony Back, University of Washington
Amy Berman, The John A. Hartford Foundation
Joy Buck, West Virginia University
Alice Cabotaje, Massachusetts General Hospital
Shonta Chambers, Patient Advocate Foundation
Stacy Fischer, University of Colorado
Richard Goldstein, Boston Children’s Hospital
Ellen Goodman, The Conversation Project
Nick Jehlen, Common Practice
Kimberly Johnson, Duke University
Kathie Kobler, Advocate Children’s Hospital
Blyth Lord, Courageous Parents Network
Malcolm Marler, University of Alabama
Diane Meier, Icahn School of Medicine at Mt. Sinai
Peter Mitchell, SalterMitchell
Julie Silver, Harvard University
Karen Steinhauser, Duke University
Rebecca Sudore, University of California San Francisco
Susan West, Family Caregiver
Lori Wilson, Howard University

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