When Angela Smith, MD, MS, a researcher at the University of North Carolina, wrapped up a Eugene Washington PCORI Engagement Award aimed at bringing together patients with bladder cancer and their caregivers to identify and refine patient-centered research questions, she thought her work was done.
“We were thrilled when we achieved our goal to identify and highlight the important research question,” Smith said. “I recall discussing that we had succeeded. It was only several months later that someone suggested we actually answer the question ourselves.”
The Eugene Washington PCORI Engagement Awards program funds projects that build communities prepared to participate in all phases of research. Project teams—often built around a health condition or population—aim to cultivate diverse coalitions to identify and prioritize patient-centered research questions, disseminate research results, and support groups eager to see research focused on their healthcare questions.
But Smith’s team is one of three Engagement Award projects that have gone above and beyond, channeling successes and lessons learned from the Engagement projects directly into PCORI research funding.
Building a Research-ready Community
Smith, an associate professor and urologic oncologist, led two Engagement Awards projects. She partnered on both with the University of Washington’s John Gore, MD, MS, and the Bladder Cancer Advocacy Network (BCAN), a national organization that promotes bladder cancer research and supports patients.
The first Eugene Washington PCORI Engagement Award created the BCAN Patient Survey Network to identify and prioritize research questions that matter most to patients and caregivers. The research team engaged BCAN web community members, using contact information maintained by BCAN, to participate in the network.
Her team created a list of potential research topics for patients and caregivers to rank by importance. Based on feedback, the list was refined and network participants were invited to vote a second time. This iterative process continued until it reached a focused list of prioritized patient-centered research questions for each of three types of bladder cancer: non-invasive, invasive, and metastatic.
It seems daunting because a lot of work goes into a larger pragmatic trial … but it did feel natural once we made the realization that we were set up for success.
Angela Smith, MD, MS University of North Carolina
When Smith’s team started the survey network, nearly 250 stakeholders voted on topics; by the end of its second year, the network had grown to more than 1,000.
“For diseases where there is limited research funding, it is even more important to use these groups to identify the most important research questions so that funds can be devoted to the questions that matter most to patients and will most impact their lives in a positive way,” she said.
Meanwhile, BCAN received a second Eugene Washington PCORI Engagement Award to develop the Patient Empowerment in Engagement Research (PEER) program, which arms patients with training to participate in research teams. Through the creation of a training curriculum, patients with bladder cancer learn about research study design and execution.
“Now that we’ve created this infrastructure, and now that we have this cohort of willing and able stakeholders in the bladder cancer space, our goal is to link them with researchers who may not have been involved with patients so that we can facilitate engagement in research across the country,” Smith said.
Gore and Smith didn’t realize it at the time, but the stakeholder cohort they’d cultivated would help them with their own research project. In 2017, thanks to stakeholder input, PCORI identified bladder cancer as a priority research topic for funding. They decided to apply for funding, using the question identified during their Engagement Award.
“We had built the infrastructure component, the engagement component—a lot of what we would need was already in place,” Smith said. “It seems daunting because a lot of work goes into a larger pragmatic trial … but it did feel natural once we made the realization that we were set up for success.”
Smith and Gore are co-principal investigators on the PCORI-funded $8.5 million project called CISTO, which will compare the effectiveness of medical treatment versus surgery on health-related quality of life for patients with non-muscle invasive bladder cancer. The BCAN collaborators from the Engagement project will help design the study and disseminate its results.
“When you look at it, there is a step-by-step process that led very naturally to the pragmatic clinical trial,” Smith said.
Giving Sexual Assault Survivors a Voice in Research
Meanwhile, Yale University’s Joan Cook, PhD, and Nova Southeastern University’s Amy Ellis, PhD, forged a relationship with MaleSurvivor, a nonprofit that works to improve resources and support available to male sexual and gender minority survivors of sexual abuse. That led to an Engagement Award where survivors provided their perspectives on the relevance of research to their population, topics they would like to see investigated, and whether they hear about and make use of research findings.
After the Engagement Award wrapped up, the main contact that Cook and Ellis worked with voluntarily left MaleSurvivor to pursue other opportunities. “Had we only had the relationship with him and not with the entire organization, our connection would have been gone,” Cook said. “I would advise other researchers to make a connection with an entire team and not solely or primarily depend on one key person.”
Based on the groundwork and relationships nurtured through the Engagement Award, Cook and Ellis received PCORI funding for a research project through PCORI’s Addressing Disparities program. The study is comparing two motivational interviewing techniques delivered online by trained peers with shared lived experiences. The research team is measuring whether the techniques reduce depression and facilitate male survivors’ formal entry into mental health services.
[Prospective participants] were very curious how involved MaleSurvivor was with this research partnership, and curious if I was going to be involved. They didn’t want to feel like they were going to be studied, or that this was an exercise only for researchers. They appreciate that is it truly a peer study run by peers.
Nathan LaChine Member and webmaster, MaleSurvivor
Central to their efforts is Nathan LaChine, who has been part of MaleSurvivor for more than 15 years. LaChine, among other roles, is MaleSurvivor’s webmaster and monitors its message boards. LaChine posted a call for volunteers to serve as peer leaders for the research project on the discussion board, and was so successful that there is now a waiting list—a recruiting win that was enabled by the ongoing relationship between the research team and MaleSurvivor.
“[Prospective participants] were very curious how involved MaleSurvivor was with this research partnership, and curious if I was going to be involved,” LaChine said. “They didn’t want to feel like they were going to be studied, or that this was an exercise only for researchers. They appreciate that is it truly a peer study run by peers.”
Nathan LaChine shares his thoughts about participating as a patient partner in a PCORI-funded research study. LaChine spoke with PCORI at AcademyHealth's 2019 Annual Research Meeting in Washington, DC.
If successful, this study could serve as a model for working with underserved, traumatized populations where building rapport and subsequent treatment engagement are enhanced by connecting with other individuals with lived experience, as opposed to solely connecting with licensed mental health professionals.
"I'm hopeful it will open the doorway for participants that there is hope and healing," LaChine said. "I'm hoping that long term, it will show that peer-support-led counseling is a viable option for people who don’t have in-person resources. We have people who come to our site from other parts of the world where there are no resources for sexual assault survivors, let alone male ones. I would love to see this picked up nationally and internationally."
Testing Ways to Improve School Behavioral Health
Mark Weist, PhD, has worked for nearly three decades to improve the mental health system for children. He strives to improve school behavioral health programs—in which community mental health providers join school teams to better address the needs of students—because of their ability to reach youth who may not otherwise receive help.
PCORI funded an Engagement Award that Weist led to help strengthen the South Carolina School Behavioral Health Community through two conferences and research forums. The conferences provided intensive training for schools, mental health systems, and other youth-serving systems to work with researchers to examine the landscape of school behavioral health and provide guidance on prioritizing research.
“The top themes were related to this notion of families communicating, ‘We’re tired of not being in the know, we’re tired of being told what to do by experts, and we really want to be treated as equal collaborators,’” Weist said.
The Engagement Award also identified three populations of children underserved by the current system: those in foster care, in the juvenile justice system, and in military families. Over the course of the Engagement Award, Weist’s team expanded its stakeholder group beyond South Carolina to include stakeholders from 12 southeastern states, Indiana, Iowa, Washington state, and Canada.
When I started the Engagement Award, I never would have believed we’d end up here. But it’s phenomenal. I’ve been fortunate to lead four prior large studies, but this is by far the biggest one, and it might be the most important one. It has the potential to really revolutionize the work.
Mark Weist, PhD University of South Carolina
To answer questions identified during the Engagement Award, Weist’s team at the University of South Carolina received PCORI funding for an Improving Healthcare Systems project that will compare two approaches for increasing engagement and effectiveness among school behavioral health systems at 20 schools in Baltimore, Maryland, and South Carolina.
“When I started the Engagement Award, I never would have believed we’d end up here,” Weist said. “But it’s phenomenal. I’ve been fortunate to lead four prior large studies, but this is by far the biggest one, and it might be the most important one. It has the potential to really revolutionize the work.”
These three projects are just a snapshot of the success that PCORI-funded teams are having in moving research forward. Visit the Eugene Washington PCORI Engagement Awards website for more information.
By Blake Whitney, Senior Editor
Posted: May 31, 2019
