Recognizing Our Research Partners

As a funder of patient-centered outcomes research, we at PCORI always look for ways to note how vital our patient and other stakeholder communities are to our work. We’ve been fortunate to have gained valuable insights from many individuals in these communities as we develop ways to ensure meaningful and effective engagement by patients and other stakeholders in clinical research. So we’re pleased to note our latest step along this path—formally recognizing the stakeholders who have joined the research teams of the studies we fund.

Enhancing Our Online Project Information

Beginning with our Cycle II 2015 Awards, we are noting the names of affiliated patient and other stakeholder partners as provided to us by the project’s lead researcher. The names will appear on each funded project’s page on our website. When visitors to our website search for a project on our Research and Results page, they can click through from the listings, visible in various formats, to a project summary page that lists the lead researcher, awardee institution, and other project information. Many patients and other stakeholders with whom we work have encouraged us to also provide information about the patient and other stakeholder partners on project summary pages, and we are excited to now be able to do that.

Solving a Conundrum

In figuring out how to provide this important information, however, we faced a challenge. Some patients and other stakeholders, for a variety of reasons, do not want to be publicly recognized for their role in a disease- or population-specific project.

We addressed this by providing a way for the lead researchers to let us know when any stakeholders wish to remain anonymous. For the cycle approved for funding on April 26, 2016, and all future cycles, the lead researchers must obtain appropriate permission from their research partners and then provide these names to PCORI. When providing this information to us, any lead researcher who finds that a stakeholder wishes to remain anonymous can use a pseudonym or categorical description, such as “caregiver to husband with 30-year history of chronic obstructive pulmonary disease.”

Although we encourage and value the robust engagement we see across our vast research portfolio, projects approved for funding in earlier cycles may not have patient or other stakeholder partners listed at this time. This should not be interpreted to mean there are no patient and stakeholders engaged on a specific project.

Our approach to funding studies that will help patients and those who care for them make better-informed healthcare decisions depends on a new model of research that requires new partnerships throughout all aspects of the research process. We call that “research done differently.” So we’re very pleased to be able to start highlighting the important contributions from all the members of our research teams.

To more formally recognize the patients, caregivers, and other stakeholders who are members of the research teams we fund, we began, in May 2016, including the names of these partners on the web pages summarizing newly awarded projects. Below we list the first group of awards for which we are posting stakeholder names.

Awards That List Research Partners