About Our Work
Since 2012, we have pioneered patient centered design strategies in heart research, engaging over 200 patient leaders, helping raise $30 million in research grants and contracts, including 12 funded research studies.
Our Mission
We are passionate about patient-centered research that focuses on answering questions important to patients and involves patients throughout the entire research process.
We support research teams in finding better ways to work in partnership to develop groundbreaking, high-impact research.
Our experience supporting these teams over time has demonstrated that meaningful partnership across different perspectives leads to research processes that are rewarding for participants, and outcomes that are scientifically meaningful and have an impact on patient communities.
Over the years, our Alliance has developed a variety of resources to support these teams at various stages of the research process. As active participants in these new approaches to research, we meet regularly to assess what we’re learning, support each other, and refine the tools and resources available for researchers and patients.
We are always looking for collaborators. Get in touch to learn more about how you can bring patient-centered approaches to your work or advocacy.
Our Achievements
Our Story
The Heart Research Alliance was born out of a desire to integrate patient perspectives and cardiovascular research, and thus ensure that the research we undertake has the most positive, direct impact on saving lives.
In 2012 researchers at the University of California, San Francisco were trying a new research approach with a direct to participant research project called the Health eHeart Study. Advocates were simultaneously arguing convincingly that too often research advanced knowledge and researcher careers but did not address the needs of patients.
When Patient-Centered Outcomes Research Institute (PCORI) funding became available to explore new methods for engaging patients and advocacy groups in research, the Health eHeart Study Team and its partners felt this was a unique opportunity to develop patient-centered approaches to research.
A UCSF led group came together with Health eHeart Study participants and partner organizations (including American Heart Association, StopAfib.org, the Sudden Arrhythmia Death Syndrome (SADS) Foundation, and Mended Hearts) with funding from PCORI to form a Patient-Powered Research Network called the Health eHeart Alliance. They joined other research networks with similar goals in a national patient-centered research network called PCORnet.
The 2014 Patient Powered Research Summit at UCSF was an early turning point for the Alliance. The Summit brought together 100 stakeholders to co-create research proposals. Ten patient-centered research protocols were created resulting in four funded research projects.
In 2019 the Health eHeart Alliance became the Heart Research Alliance. This acknowledged our growing relationship with a variety of research studies and teams, in addition to our first core research partner, the Health eHeart Study.
“For all of the tremendous advances that medical research has produced, there remain gaps in our knowledge and our methods can always be improved. This is particularly true when it comes to integrating patient perspectives in research. ”