Getting Involved, Making a Difference

Research is no longer solely the province of the lab coat-wearing scientist. People diagnosed with mental illnesses, their family caregivers, healthcare providers, and social workers all can play a role in the research that affects the treatment of mental health.

The Patient-Centered Outcomes Research Institute, or PCORI, is spearheading efforts to ensure the meaningful involvement of patients and other healthcare stakeholders throughout the research process. In the area of mental health, a patient-centered approach is critical.

PCORI is the nation’s newest health research funder. Specifically, PCORI funds patient-centered comparative clinical effectiveness research (CER), which helps people make better-informed choices by determining which healthcare options work best for which kinds of patients, based on their needs and preferences. PCORI has invested over $300 million in 87 patient-centered CER studies and methods projects focused on mental and behavioral health.

As part of its commitment to engagement, PCORI frequently collaborates with organizations that represent public and patient communities.  ADAA continues to be a valuable resource to PCORI in better understanding the needs of patients, families and clinicians facing anxiety, depression and other mental health conditions.

PCORI encourages non-scientists to get involved and engaged in research because they believe that such engagement influences research to be more patient-centered, useful, and trustworthy.

There are a number of ways to get involved with PCORI and in patient-centered CER.

PCORI relies on non-scientists to join scientists as reviewers. Merit reviewers evaluate applications submitted to PCORI in response to our funding announcements. They help ensure proposals include appropriate plans for engaging patients or other stakeholders. Peer reviewers help ensure completed research studies are held to the highest standards of scientific integrity, methodological rigor, and usefulness to a variety healthcare stakeholders.

PCORI Ambassadors share vision and mission with their communities. They can also help disseminate research findings, surveys, polls, and calls for action.

PCORI requires researchers to engage patients and other stakeholders in their studies. Engagement can take many forms, so research teams are responsible for coming up with their own appropriate way of doing it for their studies. However, the PCORI Engagement Rubric outlines ways such engagement can occur and provides general guidance and suggestions.

PCORI is helping to build a national community of patients, caregivers, clinicians, researchers, and other healthcare stakeholders who will advance patient-centered CER through its Engagement Awards funding program. And through its Pipeline to Proposal Awards, PCORI supports groups with research ideas and an interest in patient-centered CER to build capacity and develop their ideas into proposals.

For more information on getting involved with PCORI, visit its website for a full list of opportunities.

If you would like to learn more about PCORI’s investment in mental health, see their mental health fact sheet and a list of research projects related to mental illness.

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