The value of the project’s patient advisory group was highlighted when other researchers at Boston Medical Center began asking to tap into its expertise. Now, in addition to advising the original project, the group has provided input on recruitment for a chronic pain study and has informed pilot projects on treatment of patients who have experienced trauma, social networks of breast cancer patients, and changes in legislation requiring physicians to offer supplemental screening to women with dense breasts. (Battaglia also leads a PCORI-funded project that is developing a training program to help diverse community members engage in research.)
We asked Battaglia and her Patient Advisory Group to share their experiences. Battaglia and four advisors—Beth, Roy, Joyce, and Marilyn—agreed.
How did you put together your Patient Advisory Board?
When we first thought about applying for PCORI funds back in early 2013, we approached Boston Medical Center’s support groups for cancer patients and survivors. As one of our members, Beth, recalls, “I’m just so invested in supporting breast cancer research projects or supporting anyone connected to breast cancer that I agreed without hesitation! I just wanted to be a part of something that might make a difference.”
Beth and other patients first participated in focus groups that gave feedback to the research team, highlighting routine barriers to care, such as housing and employment problems, that require legal assistance. As a result, the research team applied for funds to test patient navigation with a legal advocacy approach.
The team asked focus group members whether they would be interested in providing feedback through all phases of the study. The Patient Advisory Group that resulted has been engaged as partners in Project SUPPORT ever since. As a research team, we have been fortunate to work with such a dedicated and thoughtful group of advisors.
What were you looking for in the members?
They must be former or current cancer patients at Boston Medical Center. All we require is an interest in partnering in research. Members commit to attending meetings and providing feedback about project questions and research priorities.
Our Patient Advisory Group members had expectations, too—that they would learn as well as give back. As Joyce puts it, “I was looking for more information. I would like to know about how cancer works, and how you can get out into the community and tell them what’s going on.”
Currently, the group has five members, who reflect our wider population of patients and their communities. Members have a wide range of life experiences and careers that span from radio journalism to health and home care.
As a research team, we have been fortunate to work with such a dedicated and thoughtful group of advisors.
Did you provide the board members with any training?
A lot of the training has been on the job. According to Beth, “It was learn as you go.” Roy adds, “For a lot of things, we asked ourselves what we should be doing and how to reach out to the community.” While we have invited scholars and other professionals to present to the group, and members have attended seminars, the patient advisors and research team primarily learn from each other.
What happens at a typical meeting?
We make sure to discuss updates to Project SUPPORT, including recruitment, and celebrate successes. Marilyn says, “They bring new information to us, and we go around the table sharing opinions. I learn things I wouldn’t ever know otherwise.”
Advisory group members make announcements about their efforts or updates on things happening in their communities. When the project runs into challenges, patient advisors make suggestions on how to meet them.
In describing a typical meeting, Joyce notes, “They have the agenda, and they write down everything. Sometimes it goes off course!” She adds, “They listen to what you’re saying. They don’t say, ‘You can’t do that!’ There are no stupid opinions; every opinion matters. That’s the most important thing about it.” Beth recalls, “Sometimes I’ll just say something, and Tracy [Battaglia] will say, ‘That’s a very important point!’ And I’m like, ‘It was?’”
The meetings are Roy’s favorite part of being an advisor: “You hear opinions voiced about which way we are going, what have we achieved, and what do we want to achieve. Laughter is part of it. It means we’re at ease.”
The group meets every other month. Our biggest obstacle has been the wintry Boston weather!
What suggestions from the patients has the project acted on?
Originally, the research team thought only patients who were already experiencing legal issues would be eligible to participate in the study. The advisors, however, felt strongly that all patients should be eligible to participate. With that change, not only is the study now more fair to patients, but the team can observe how legal issues develop in patients’ lives during care.
With their input, we were able to recruit more people than we would have otherwise. The group members also have helped us prioritize topics for pilot studies and future research.
Beth points out that the advisory group had an important early impact on recruitment: “I remember them writing out the questionnaire, and we talked about how a patient would feel being approached with these questions. And what kind of information a patient would be comfortable sharing at their initial diagnosis. That was what our job was: to make sure patients didn’t feel like they were being attacked.” She continues, “We’d let them know when a question wasn’t good. Or we’d say, ‘Let’s start with a different question to break the ice.’ Or, ‘Let’s shake it up.’”
In response to this input, we changed questions, and patient advisors helped role-play the questionnaire. With their input, we were able to recruit more people than we would have otherwise.
The group members also have helped us prioritize topics for pilot studies and future research, and we’ve benefitted from their outreach at community events.
Do you have advice for investigators putting together patient advisory boards?
You want to go fast, but you have to slow down—For patients, it can be hard to grapple with how slow the research process can seem. Roy notes that the project “has to deliberate on everything it does. It’s frustrating until you realize why it happens.”
Keep the group small—Our patient advisors caution against recruiting too many members. According to Marilyn, if there are too many, “it gets muddled. Too many people trying to speak, and no one’s getting heard. No more than 10 or 12.”
Share information—One of the main draws for our patient advisors was learning something new. As Marilyn notes, “It’s helpful when the researchers bring statistics and facts we wouldn’t have access to otherwise. It helps to open doors for others.”
Recruit patients who have an open mind—Roy suggests, “You need to find people who are interested and have a reason to belong.” Beth agrees, saying, “They need to understand that what they think might be a small contribution could turn out to be a huge contribution. You have to have people who will speak up, are willing to contribute, and have an open mind.”
Have strong leadership and organization—Clear expectations are keys to success. Beth says, “Leadership sets the table and leaves room for our feedback. I just slide into my spot.”
Think long-term—Patient advisors are generous with their time and dedication to our project, but it’s a big commitment. Our staff have noted the importance of a balance between keeping seasoned members and bringing on new people. Our founding members have been key to bringing in new patient advisors who will help share the work.
The views expressed here are those of the author and not necessarily those of PCORI.