NCATS Day Participants Share Perspectives to Advance Research Engagement

“I’m not too thrilled about injections,” one woman said. “I’m a big scaredy-cat with needles,” agreed the man next to her. Both were participants in a demonstration of an “engagement studio”— a way of gathering community input on a proposed research project — during NCATS Day 2018: Engaging Patients and Communities for Smarter Science. The event also featured diverse panelists discussing best practices for developing strong research relationships, the value of partner perspectives and the importance of sharing results. 

Aided by a facilitator, the engagement studio participants shared why they would or would not want to participate in a research study about a possible new injectable drug for arthritis pain. Their input provided investigator Michael Iadarola, Ph.D., of the NIH Clinical Center, with ideas about how to best reach community members who might want to enroll in his study.

Making Engagement Real

NCATS Day 2018 participants report on their findings from the breakout sessions. (Daniel Soñé Photography)

The concept of engagement studios has been developed and refined throughout the past decade by Vanderbilt University collaborators, including Consuelo H. Wilkins, M.D., M.S.C.I., who is the co-principal investigator of the NCATS-funded Recruitment Innovation Center (RIC).

“If you’re doing study recruitment well, you’re engaging people,” Wilkins said. “But if the only reason you’re interacting with people is to recruit them, you’re not engaging.” True engagement means that the community’s input leads to changes in the researchers’ plan for the study, she added.

Cheryl Jernigan, CPA, FACHE, lead patient advocate at the University of Kansas Medical Center, said that in her experience, neither scientists nor patients fully realize why patient input is needed. “Scientists think they know what we want, but they don’t,” Jernigan said. “We think we can’t tell them things because we don’t know science.”

For example, Iadarola had assumed that patients would love the fact that his arthritis drug is injected into the knee, because it meant the drug wouldn’t travel through the bloodstream to the whole body. “This, to me, had always been a real advantage,” he said. After the engagement studio, however, Iadarola realized that the injection might make some people reluctant to participate.

Sharing Results with Participants

One of the most important elements of engagement, Wilkins and Jernigan agreed, is telling participants about results of the research to which they contributed. “The foundation of respecting people as partners in research should be discussions about what is of value to them,” Wilkins said. ”Returning results is a key part of that.”

Jernigan shared that she has often been involved in the planning stages of a study as a patient advocate, then never heard whether the study was funded. It is much worse for patients who volunteer their time, fight their discomfort with medical procedures, and sometimes even risk their lives to participate in a study, then never hear the results, she added: “It’s appalling to know that all of these people gave their time and didn’t know what happened.”

This breakdown in communications may stem partly from the fact that many academics are uncomfortable communicating with non-academics, Wilkins said. She also noted that traditional ways of sharing results, such as through journal articles and presentations at scientific conferences, are good for researchers’ careers, but investigators do not have similar incentives to share their results with study participants or the general public. To help bridge this gap, RIC investigators have created templates that researchers can use to share results with study participants and community members. Part of a Recruitment and Retention Toolbox, the templates are easy to use and follow the format of a journal abstract, which is familiar to scientists.

Advancing Science Through Collaboration

NCATS Day 2018 working group members and panelists. (Daniel Soñé Photography)

Kristi Graves, Ph.D., is a clinical psychology researcher at Georgetown University who specializes in issues related to cancer. She has worked for 10 years with Nueva Vida, an organization that supports Latino families in the Washington, D.C., area who are affected by cancer. She emphasized the importance of collaborating with patients and their advocacy groups in designing study questions.

A few years into her collaboration with Nueva Vida, Graves received funding for a three-year project testing a series of workshops to help cancer patients and their caregivers improve their quality of life and coping skills.

“It was a highlight of my career,” Graves said. The ideas for the workshops came from Nueva Vida staff, and they and other community partners were involved in designing the sessions. For example, at one meeting, a partner asked if the study included questions on the financial burden of cancer. Adding that question produced compelling data.

The project came about in the first place because of Nueva Vida, Graves explained. Nueva Vida’s executive director called to tell her about a new organization that was funding research on community-focused science. Graves and her colleagues rushed to put together an ultimately successful proposal.

Peter Grayson, M.D., M.Sc., head of the Vasculitis Translational Research Program at the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), said the Vasculitis Foundation, a patient advocacy group, was critical to his early career success. The foundation helped promote him to the research and patient communities. The resulting interactions have helped him define his study questions and better understand that scientists and patients often have very different perspectives on what is most important.

“For example, keeping patients off dialysis is important, but more important to them is finding ways to deal with fatigue, because that’s their daily experience,” he said.

NCATS Director Christopher P. Austin, M.D., carried this theme of collaboration through his concluding remarks for NCATS Day 2018, reflecting on the importance of partnership for scientific progress.

“The history of science shows that insights from the community — the medical community as well as the patient community — have led to many scientific insights that have public health significance,” he said. “At NCATS, we feel strongly that the only way to be sure we know what we’re doing is to ask people and involve them in the work from the very beginning.”

View photos from the event.

Posted November 2018