COVER STORY · PATIENT ENGAGEMENT


BCAN also has developed a research training program called PEER (Patient Empowerment in Engagement Research) to allow trained patients to serve as mentors for future cohorts, creating a sustainable method for continued patient education and engagement in research, Chisholm adds. BCAN research advocates have served on advisory boards with pharmaceutical companies when they’re planning a clinical trial, she added. “They have weighed in on everything from patient-focused material to study design. They’ve also done training to participate in research reviews. We have nominated a number of our advocates, to be reviewers on CDMRP [Congressionally Directed Medical Research Programs] projects that are focused on bladder can- cer. There is a requirement that CDMRP researchers engage patients in the study design early on before they even submit the grant, and we have provided our volunteers to a number of researchers to help them understand the patient impact.” At its October summit meeting, BCAN


is offering researchers a chance to bounce ideas off a group of 300 patients in a vir- tual meeting. “I think we’ve got a couple of social scientists who are interested in picking the collective brain of the bladder


cancer community, and this is a great way for them to get feedback,” Chisholm says.


Kaiser Permanente turns to ParkinsonNet model Other efforts are under way to include patients in care planning. ParkinsonNet was founded in 2004 in the Netherlands to improve the lives and guarantee the


clinicians to make care more patient-cen- tered. Kaiser Permanente became involved with ParkinsonNet in 2013 when its Care Management Institute identifi ed it as an innovative, evidence-based approach to improve the care of patients with Parkinson’s disease. “We were impressed by how aligned this integrated, patient-centered, and evidence-based approach to care was with our own integrated care delivery model at Kaiser Permanente, and found that this program was the best way to provide care for this complex disease,” notes Christopher DiStasio, M.D., Regional Chief of Service, Neurology for Kaiser Permanente, Southern California, in an e-mail interview.


Christopher DiStasio, M.D.


best possible care for people impacted by Parkinson’s disease. One of its goals is to include patients in decision making about care pathways and to connect the


Patient interviews conducted with the help of a video ethnographer gave the team profound insights, he adds, “and showed us that our patients need com- passion, communication, and coordina- tion of care from their care team. Patients want Kaiser Permanente to be partners in their journey and for us to help put all the puzzle pieces together.”


Social medicine is a key element of


the program, DiStasio stresses, includ- ing patient support groups, coping with Parkinson’s disease classes, and one-on-one


Moving From Patient-Centered to Patient-Led Research


Not only are patients taking a more proactive approach to participating in research, some are choosing to lead their own research efforts. Hannah Wei is a member of a group of people deal- ing with the long-term symptoms of COVID-19 who have come together to research their own condition. Called the Patient-Led Research Col-


laborative, the group’s members come from a variety of backgrounds. “We’ve got a neuroscientist, a few of us are from the technology industry, but we also have research backgrounds,” says Wei, who lives in Ottawa, Ontario. “An- other is in participatory and survey design. We decided to form a group to analyze all the data that’s being shared amongst patients. People were telling stories about their COVID experiences that were unlike what was being cov- ered in the news. And we decided to band together and systematically col- lect this data to tell a story that is more truthful to patients, something that we can all relate to, and also be able to help other research groups, scientists, folks in academia and public policy, pick up on this and be able to help long haulers


and the people who are not recovering from COVID.” It is important to collaborative mem-


bers to not only advocate for a correct or more accurate representation of long COVID, Wei says, but also to educate and inform other care providers. “Our recently published paper is from the survey that we started last summer, and it’s characterizing COVID symptoms for long haulers who have been sick since last March. This is targeting the fi rst wave of long haulers — myself in- cluded. I got sick last March. We feel that we have the most insights to share. We discovered that a lot of folks are experi- encing post-exertional malaise.” Looking at the data, they found over 200 symp- toms, some of which can present them- selves later in the disease, or when the patient has a relapse. “We found symp- toms like swelling of the limbs, cogni- tive symptoms, loss of memory, speech impairments, that tend to show up after two months and they persist. Rather than just stating them anecdotally, we wanted this data to be gathered in a more systematic way to really validate what the patients are going through.”


8 hcinnovationgroup.com | SEPTEMBER/OCTOBER 2021


“We’re very fortunate to be in a posi- tion where we have the talent and the reputation to try to lead our team and drive collaboration with some agency. When it comes to bigger institutions, or bigger teams with more resources and funding, it’s quite hard for us because we’re quite a new model. We don’t re- ally fi t into the traditional funding pipe- line, so it sometimes gets quite hard to integrate with bigger organizations and their workfl ows. We have received a grant from PCORI. We are trying to come up with a model to sustain not only our work but also share our op- erational and collaboration model with other patient groups.” “COVID is a disaster, but it’s also an


opportunity to come together in a new model with skill sets that haven’t previ- ously been put together,” Wei says. “We are trying to fi nd out if there are aspects of our operation, or our way of doing things that can be replicated by other groups, because we would love to have other patient groups also be in this area and advocating alongside with us, and doing research alongside with us and having more agency.”


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