Keeping Patients at the Center of All Stages of Clinical Research

Traditionally, scientists alone have developed studies to provide information for patients and clinicians to use in making healthcare decisions. But at PCORI—and increasingly, elsewhere— there’s a growing recognition that this approach misses critical perspectives.

More and more, we’re seeing that when patients and other stakeholders partner with scientists in choosing research questions, as well as designing and conducting studies to answer them, they make it more likely the results will be relevant to and taken up in daily practice.

In a new viewpoint in JAMA, the Journal of the American Medical Association, I, with colleagues Laura Forsythe and Harold Sox, describe PCORI’s distinctive approach to engaging a range of stakeholders in working toward our shared goal—generating evidence that can help patients and those who care for them make informed choices about which treatments might work best for them. The article, available free, notes how this approach guides our funding decisions and shapes the way the resulting clinical effectiveness research studies are conducted.

The article reviews in some detail how we involve patients and other stakeholders in three critical elements of our work—developing research questions, reviewing research applications, and conducting the research we fund.

As our approach is new and still unproven, we spend a lot of time and effort evaluating the process even as we engage in it, seeking to learn more every day about the impact our support of “research done differently” is having and the challenges we still face. But we’re confident that our inclusive, stakeholder-driven process is the way to make sure the research we fund will be relevant and used to make a difference in patient care and outcomes.

I invite you to read the full JAMA article and let us know what you think about it by leaving a comment below or emailing us at info@pcori.org.