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Patient & Consumer Engagement

AcademyHealth is committed to supporting and fostering collaboration between consumers, patients, researchers and delivery systems leaders to improve the relevance and application of health services research. This section contains information on related programs as well as guidance and resources for researchers, patients and consumers.

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Blog Post

Strategies to Improve Inclusivity and Diversity of Patients in Research Governance

A PCORI-funded learning network recently outlined key challenges and promising practices for improving the diversity and inclusion of patient representatives in research governance.
Posted Mar 1, 2022 By Elizabeth Cope, Ph.D., M.P.H., Prashila Dullabh, M.D., Michelle Johnston-Fleece, M.P.H., Claudia Grossmann, Ph.D.
Topics HSR Resources & Methods Research Ethics & Governance Patient & Consumer Engagement Health Equity
Blog Post The Relationship between Health and Place: Expanding Use of Place-Based Disadvantage Indices Beyond COVID-19

The Relationship between Health and Place: Expanding Use of Place-Based Disadvantage Indices Beyond COVID-19

While disadvantage indices are increasingly recognized as a valuable tool to help promote health and prioritize equity, future use of these tools must include investments in data infrastructure, community partnerships, and further evaluation.
Posted Nov 9, 2021 By Rachel Campbell-Baier , Caitlin Otter
Topics HSR Resources & Methods Patient & Consumer Engagement Using Health Data Analytic Tools Health Equity
Publication

Reimagining Academic Incentives and Rewards in Health Services Research

This brief summarizes key points from a May 2021 meeting convened by AcademyHealth as part of the Paradigm Project to explore redesigning academic incentives to prioritize the social impact of health services research. The meeting underscored the importance of diversity, equity, and inclusion -- among other factors -- in incentivizing research that has impact.
Posted
Topics HSR Workforce Development Translation, Dissemination & Implementation Research Ethics & Governance Patient & Consumer Engagement
Blog Post Innovative Study Design Alleviates Challenges Associated with Rare Disease Clinical Trials

Innovative Study Design Alleviates Challenges Associated with Rare Disease Clinical Trials

The road to the approval of therapies for rare diseases is long and challenging. This blog post outlines how one study addresses this through embracing a multistakeholder approach, removing travel barriers associated with participation, and leveraging historical patient data to replace placebo data.
Posted Aug 23, 2021 By Helen Moniz
Topics HSR Resources & Methods Patient & Consumer Engagement Using Health Data
Blog Post Data Infrastructure Efforts to Support Maternal Health Featured in Health Affairs

Data Infrastructure Efforts to Support Maternal Health Featured in Health Affairs

Designed to build data capacity for conducting patient-centered outcomes research, ASPE’s Office of the Secretary Patient-Centered Outcomes Research Trust Fund has funded several cross-agency projects aimed at improving maternal health. A new Health Affairs blog post describes these efforts and highlights guiding principles for moving forward.
Posted Aug 12, 2021 By Susan Kennedy, M.P.P., M.S.W., Rachel Dungan, M.S.S.P.
Topics Patient & Consumer Engagement Health Equity Using Health Data
Publication

The Blueprint: March 2021 Paradigm Project Updates

The March edition of the Paradigm Project’s newsletter, The Blueprint, continues the Project’s tradition of looking outside of HSR to inspire innovation by highlighting lessons learned from journalists, a scientist who developed a YouTube channel, and a new paper by Dr. Jonathan Grant for AcademyHealth’s Paradigm Project that reviews nine approaches from other fields to incentivizing academic research to bolster social impact, as well as five “provocations” for AcademyHealth to consider.
Posted
Topics Patient & Consumer Engagement Translation, Dissemination & Implementation HSR Workforce Development