Patients and Communities, Engaged
Explore how we are innovating infrastructures and building capacity for integrating patient and community perspectives into research, healthcare transformation, and policy… one project at a time
Featured Projects
Ariadne Labs’ Serious Illness Conversation Guide
Ariadne Labs partnered with PAF’s Patient Insight Institute to obtain diverse patient and caregiver input on their serious illness communication tools. Through this project, it was the Patient Insight Institute’s role to bring together a diverse group of patients and caregivers and create safe and trustful spaces to gather feedback.
Over a series of group meetings and individual interviews, patient and caregivers provided in-depth feedback on all aspects of the Serious Illness Conversation Guide, including the language used, framing and approach to conversations, and how providers are trained.
The Serious Illness Conversation Guide is a patient-tested, evidence-based framework and tool for health professionals to use with patients and/or their caregivers. Its purpose is to prepare clinicians to:
Understand and honor patients’ values and goals in the context of serious illness;
Strengthen relationships, connection, and rapport;
Partner with patients in decision-making longitudinally;
Enhance patient’s sense of control and preparation for the future;
Provide emotional support to improve patient experience and well-being
Paving a Pathway to Engage Underserved Populations in Research
Patient perspectives and Experience Survey Results
We recently surveyed our Patient Insight Network about their experiences with, and perspectives of, research. With nearly 3,000 responses, this work brought insights to the challenges and barriers patients face, as well as the enthusiasm that is present in participating as partners and advisors on research projects. This work was made possible through a Patient Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (#20016-PAF).
PCORI-Funded Project Focused on Patients’ Unmet Social Needs and Pharmacy Role in Addressing
The Pharmacy Quality Alliance (PQA) and the Patient Advocate Foundation’s (PAF) Patient Insight Institute will convene patient and pharmacy stakeholders to develop a patient-centered outcomes research agenda to improve social determinants of health (SDOH) screenings and interventions in pharmacy settings…. (read the entire press release here)
Fighting Breast Cancer on Chicago’s Southside
On Tuesday March 28, 2019, Sisters Working It Out and Patient Advocate Foundation convened a community conversation at the Kroc Center in Roseland. A group of 40 community stakeholders representing nurses, educators, health care professionals, breast cancer survivors and faith‐based members galvanized to create change for black women on the southland area. The following organizations were represented Sisters Network Chicago Chapter, Different Shades of Pink/Brave Chick Charities, Mile Square Health Center, Lilydale First Baptist Church and Matters At Heart. The group discussed data highlighting the scope of breast cancer disparities in their communities, identified service gaps contributing to the problem and prioritized solutions to address breast cancer disparities on the southside. This document summaries the findings from the community conversation.
