PCORI is committed to ensuring that our research efforts are informed by the end-users of healthcare information, including people in diverse communities from coast to coast. One way we have done this is to hold workshops across the nation, especially in communities underrepresented in the traditional clinical research process. We value these gatherings of patients, caregivers, advocates, clinicians, researchers, and others because they have helped us incorporate diverse views into the research we fund and build and strengthen partnerships. The workshops also have offered attendees a chance to learn more about us, the patient-centered outcomes research (PCOR) we fund, and how they can become involved in our work.
In all of our programs, we strive to measure the effects of our work. We are interested in learning whether our workshops have helped to build a community to facilitate and participate in PCOR. One way we do this is to survey all participants at the conclusion of the sessions and again six months later to see whether they’ve done something new to conduct, promote, or use PCOR since the meeting. Our most recent analysis of the results available suggests we’re having an impact.
What We Heard
To date, nearly 200 participants, or 35 percent of those who attended our five regional workshops (see table), have responded to the six-month follow-up survey. We know these responses don’t necessarily reflect the experiences of all participants, and that those who responded may be more likely to be currently involved in supporting PCOR than those we didn’t hear from. However, the surveys still provide valuable information and inspiring stories.
“I have been explaining the value of patient-centered research and its benefit to patients, as well as overall quality improvement.”
— Memphis Workshop Participant
More than 85 percent of the respondents indicated they had done something new to conduct, promote, or use PCOR since the workshop they attended (see graph). These actions ranged from educating colleagues and community members about PCOR and PCORI to integrating patients and other healthcare stakeholders into existing research teams to creating new groups, such as a patient engagement advisory board for a local hospital.
“I have supported [funding] that involved patient advocates and a rather large and diverse group of researchers. I am utilizing the knowledge I acquired in this endeavor in [an application] I am looking to submit early next year.”
—Wichita Workshop Participant
The most frequently reported activity was forming or joining a PCOR collaboration or project with the intention of applying for PCORI funding. Topics of projects in process include:
- A patient-centered approach to caring for injured adults
- Trust within the African-American population and the impact of patient activation and engagement on the rate of influenza immunization
- Improved care for minority patients with prostate cancer
When asked whether they had begun participating on a research team applying for PCORI funding, 24 percent of respondents reported acting as a principal investigator or co-investigator, while 13 percent said they are contributing as a patient or other stakeholder partner.
We have forged a number of relationships in our local community with other perinatal efforts … Thanks to PCORI, forming partnerships and "asking" has become much easier and the momentum that each new collaboration in the community creates has been unbelievable.”
— Albuquerque Workshop Participant
Many respondents indicated that since the workshop they had participated in informal or formal activities to educate coworkers and community members about PCOR and PCORI. These ranged from unstructured conversations, for example, during doctor appointments, to structured presentations during grand rounds or professional meetings.
As word spreads about PCOR and the work that we fund, we look forward to receiving more funding applications from communities that have been underrepresented in traditional research activities. We’re convinced that a broader distribution of funds will lead to a portfolio that more widely and effectively addresses the health and healthcare needs of all Americans.
What You Can Do
Please also let us know how you have been participating in PCOR in your community and what that activity means to you; send us your stories here.
Transforming Patient-Centered Research: Building Partnership and Promising Models
October 27, 2014
What Should PCORI Study? A Call for Topics from Patients and Stakeholders
December 4, 2014
The Power of Partnership in Research: Improving Healthcare Outcomes in Rural Settings
March 9, 2013
The Power of Partnership in Research: Improving Healthcare Outcomes in Underserved Communities
August 1, 2013
The Power of Partnership in Research: Applying Patient-Centered Outcomes Research in Racial and Ethnic Minority Communities
November 6, 2013
Konopka is a senior program associate in PCORI’s Engagement program