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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.

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
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.
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.
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Blog Post       Three Key Considerations for Building Successful Health System Leader and Researcher Partnerships

Three Key Considerations for Building Successful Health System Leader and Researcher Partnerships

In a recent convening hosted by AcademyHealth, the ABIM Foundation, and the Donaghue Foundation, stakeholders explored what it takes to build successful partnerships between health systems leaders and researchers and how to deploy these partnerships to deliver high-value, equitable care.
Posted Mar 2, 2021 By Sarah Millender
Publication

The Blueprint: January 2021 Paradigm Project Updates

The Paradigm Project’s newsletter, the Blueprint, kicks off 2021 with a spotlight on four Black women working to improve artificial intelligence, recommendations for research organizations on assessing the societal impact of their work, examples of stakeholder engagement in research, and other news relevant to improving health services research.
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