Engaging patients and others across the healthcare community is at the core of all we do at PCORI. That includes requiring that researchers work with patients and other key stakeholders to design and conduct the studies we fund, and to disseminate their findings.
Why have we been committed to this approach to research since our earliest days? Partnering with stakeholders who have firsthand knowledge of the realities of living with or caring for someone with a particular disease or condition helps ensure that our studies will answer the questions that matter most to the people affected every day.
- Start engagement early. Fifty-nine percent of PCORI applicants who responded to our survey formed partnerships more than six months before submitting an application.
- Reach out to a variety of groups. PCORI applicants report finding partners most frequently among patients, clinicians, caregivers, advocacy organizations, and health systems.
- Foster positive partnerships. Make sure the work is a good fit for each partner’s interests and values. Encourage feedback, explain the research process, and be honest about funding likelihood.
We know this approach to conducting research isn’t necessarily an easy one. Indeed, researchers often have questions about how, when, and where to initiate partnerships with patients and stakeholders. Fortunately, we’ve learned a great deal from our awardees over the years about what works well. We recently shared some of these lessons in a webinar, which was the first in a series to explore promising practices and share guidance for engaged research.
During the webinar, Dianne Johnson, a former associate in ministry and breast cancer survivor who described her experience as a patient partner on a PCORI-funded study, shared that one key to success is patience. “Everyone on the team is learning a new way of conducting research, and it’s hard work,” she said. “People aren’t accustomed to having caregivers or other stakeholders in the room. It’s just going to take time to get things to work smoothly.”
Forming Partnerships with Patients and Other Stakeholders
When forming partnerships, most PCORI applicants reach out early on, long before applying for funding. Early engagement helps ensure that projects are truly patient centered and capture all relevant perspectives from the beginning. One of the webinar presenters, Giana Davidson, MD, MPH, of the University of Washington, who is a co-investigator of a PCORI-funded study comparing treatments to improve the care of appendicitis, assembled her team around nine months before applying.
But timing varies. More than 25 percent of PCORI applicants surveyed had formed partnerships six months or less before submitting an application. It was within this timeframe that Johnson partnered with Karen Wernli, PhD, of Kaiser Permanente Washington Health Research Institute, who is principal investigator of a study comparing MRI to mammography for watching for recurring cancer in breast cancer survivors.
Wernli advises future applicants for PCORI funding to form partnerships with patients earlier than she did. “It takes a lot of relationship-building time for patient partners to get to know you, and for you to get to know them,” Wernli said.
Where and How to Find Partners
Almost 90 percent of PCORI awardees engage patients and clinicians as partners, according to annual progress reports from awardees. Wernli took several approaches to finding patient partners for the SIMBA Study including sending email to a list for young breast cancer survivors, and distributing fliers at a local Race for the Cure, and by posting information on her workplace intranet.
Davidson described her team’s approach to working with clinician or health-provider partners as multifaceted. “We held individual meetings with hospitals who were considering involvement in the study, physician group meetings, and Grand Rounds presentations, and sent out surveys to look at clinicians’ experiences with different treatment strategies.”
It takes a lot of relationship-building time for patient partners to get to know you and for you to get to know them.
Considerations in Clinician Partnerships
Researchers also successfully partner with stakeholders other than patients. More than half of PCORI applicants and awardees, for example, form partnerships with caregivers, health systems, or advocacy organizations.
During the webinar, Davidson described valuable lessons her team learned from partnering with clinicians in different fields to develop the study protocol, which compares the effectiveness of antibiotics versus appendectomy in treating uncomplicated appendicitis. The research team took the approach of engaging well-established networks, partnering, for example, with representatives of a network of surgeons in Washington State and a group of physicians in Europe who had done earlier research on antibiotic treatment of appendicitis.
Each group of clinician partners had a slightly different perspective on issues about how best to conduct the study, Davidson said. For instance, some emergency medicine physicians focused on the benefits of having patients in an emergency department leave within a few hours of treatment and avoid admission to the hospital. They often looked favorably on antibiotic treatment and were interested in how effectively and efficiently care could be provided to patients. However, as most surgeons in the United States treat appendicitis with laparoscopic appendectomy, they tended to be more skeptical of offering patients antibiotics. They expressed concerns about recurrence of appendicitis, which would require an appendectomy after initiation of antibiotic treatment. Some primary care physicians offered another perspective, including concern about longer-term chronic pain. All of the clinician groups wanted to understand which subpopulation of patients would be most likely to succeed with antibiotic therapy.
“It was critical to take the concerns of each clinical team into consideration during study design and to collaborate on the protocol development,” Davidson said. “This is how the research and the clinical team can really work as partners.”
Stay tuned for our next webinar, September 19, at 12pm Eastern time. It will cover ways patients and stakeholders engage on projects, and the impacts these partners have on the studies. You may view the July webinar online and read the corresponding handout.
Rachel Hemphill, MA, PhD, is also a co-author of this blog post.