Pulling Together Around the Patient Experience

Sept. 20, 2021
Patients and Clinicians Are Learning How to Co-Produce Care Pathways, Outcome Measures, and Clinical Trials

Jennie David was diagnosed with Crohn's disease at 12 years old. That was 18 years ago. When she was a teenager, she got involved with the patient advisory council of a learning health network called ImproveCareNow (ICN) that focuses on pediatric inflammatory bowel disease. In her previous experiences volunteering with research foundations, she felt that patients were treated as afterthoughts. “People were willing to have a patient at the table, but they didn't really want you at the main table. You were off to the side,” she says. “They wanted us to give lovely emotional speeches, but it felt a little like we were window dressing. I realized that the only way to change things is through research and through standardizing care.”

Her experience with ICN was completely different, recalls David, who now has a Ph.D. and works as a pediatric psychologist at Nationwide Children’s Hospital in Columbus, Ohio. She went to an ICN conference as a college student and felt engaged with all the participants. “All these people were introducing themselves by their first name and they seemed very interested in hearing more about my story,” she says. “Later on, I was looking through the agenda for the conference and I realized that I was just talking with the people who created and run the network. It was a tremendous culture shock and it felt so different. They really wanted to know what I as a patient would want to have different about my care.  And that was tremendously different — that people were paying attention, not just at the conferences, but in between conferences.” Based on her own experience with surgery, she eventually co-led the development of a widely used ostomy decision-making toolkit for other patients who were considering surgery.

Patient engagement and “patient-centeredness” are hot topics in healthcare these days, but health systems and clinical researchers run the risk of alienating patients or having their engagement efforts seen as mere public relations efforts unless they devote the effort to thinking about how they will engage with patients early on in designing care pathways and outcomes measures and developing research questions to explore.

Kristin Howe, D.C., M.H.A., ICN’s executive director, says that some research networks make the mistake of thinking of a patient advisory council as a nod to patient engagement with a check-the-box mentality. Instead, she argues, “they should be figuring out how to have this true dialogue together, and asking: How are we making sure that our patients are at the table at every point in the process, and not just as a final check-in at the end? That's where ICN differentiates itself from some other networks. At what point in the process are you bringing in patients and family members and to what extent is that hierarchy really flattened? Are they in the room and relegated to the back corner? Or are they truly driving the conversation?”

ImproveCareNow grew out of a request from the American Board of Pediatrics more than 15 years ago to develop a quality improvement network. Some pediatric gastroenterologist took this as a call to arms to improve the quality of care that the patients with Crohn's and ulcerative colitis were receiving. Seven care centers initially sought to develop a framework of standardizing care and minimizing the variation of care. That led to development of modern care guidelines for pediatric patients with IBD. “Pretty soon we recognized that we needed to have parents and patients as part of that conversation, so we developed a patient advisory council,” explains Shehzad Saeed, M.D., the associate chief medical officer and a pediatric gastroenterologist at Dayton Children's Hospital and clinical director of ICN. “The flattening of the hierarchy and the power equation is the secret sauce, I think.”

Howe says that involves a paradigm shift for some providers. “People don't always train in medical school to include patients in a dialogue,” she notes. “Paternalistic ways of providing care have legacy effects. There’s training that happens on both sides and a bit of a calibration as part of the network.”

Saeed offers an example of patient-directed research. A few years ago, ICN heard from the patient advisory council that they were interested in researching dietary therapies, he says. Based on feedback from the parents and patients, they saw an opportunity to develop a research project. As a result of that, investigators with the network submitted a grant to  Patient-Centered Outcomes Research Institute (PCORI) to fund a dietary therapy project. Parents and patients were part of the research team, helping to develop the protocol.

Shifting the focus of outcomes measures

The pioneering work to engage patients and families is happening in learning health networks involving clinical research, much of it funded by PCORI.

But in the shift to value-based care, there also is a need for health systems to develop more patient-centered outcomes measures to complement the clinical measures they already gather and report on. “Hospitals tend to have measures about what is happening in the hospital but not have any real view into what is happening with quality in the post-acute care space or in the outpatient space,” says Carolyn Wong Simpkins, M.D., former chief medical information officer at the South Jordan, Utah-based Health Catalyst, and currently a senior advisor of clinical strategy at health IT vendor Hive, which builds tools for learning health networks. “But if you reorient to the patient outcomes point of view, then you define your overarching health goals for a particular patient group, and you have different arenas of potential interventions, some of which the health system controls directly and some of which require collaboration.”

“The challenge of developing patient-centered outcomes measures is that you have to begin to define with different patients with different conditions what other outcomes that matter might be,” Simpkins adds. “How do we define those, and how do we begin to pay attention to them and measure them?”

Patient-centered outcomes measures would not replace measures that health systems are already tracking, she stresses. Instead, they would help create a clearer picture of how your patients are doing and whether you are ultimately accomplishing what you set out to do as a health system.

Simpkins says that healthcare providers working to collect patient-reported outcomes data is a step in the right direction, “but I think the point isn't just to ask the patient about parts of the equation that they can self-assess. I think the point is to think about the whole set of outcomes in terms of what would matter most to them. A lot of the things that are measured are more process measures regarding things that the healthcare delivery system can do. Those are also very important, but they're not the whole picture.”

Building on a strong patient network

Other learning health networks have developed around conditions such as cystic fibrosis and autism, many of them supported by the James M. Anderson Center for Health Systems Excellence at the Cincinnati Children’s Hospital Medical Center, where ImproveCareNow was born.

In another example, the Bladder Cancer Advocacy Network (BCAN) has created a patient survey network, with approximately 1,500 people agreeing to participate. BCAN has started using that network to do comparative effectiveness research. One current study, funded by PCORI, is comparing bladder removal with medical therapy. It includes both patients and their caregivers, who are being asked about their experiences and outcomes following treatment for up to three years, says Stephanie Chisolm, Ph.D., BCAN’s director of education and research.

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 cancer. 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 virtual 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 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 clinicians to make care more patient-centered. Kaiser Permanente became involved with ParkinsonNet in 2013 when its Care Management Institute identified 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.

Patient interviews conducted with the help of a video ethnographer gave the team profound insights, he adds, “and showed us that our patients need compassion, communication, and coordination 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, including patient support groups, coping with Parkinson’s disease classes, and one-on-one services. “Offering educational classes for patients and caregivers empowers them by providing knowledge and tools that help maximize function and quality of life for patients with Parkinson’s disease.”

Kaiser Permanente is also planning a Parkinson Disease Summit to bring together providers, therapists, patients, and caregivers to further strengthen their collective knowledge and experience, and foster collaboration. This, unfortunately, has been delayed due to the pandemic, but it will continue to be a priority in the future.

Since implementation in 2015, Kaiser Permanente has seen major success and positive outcomes in this program, including a 97 percent increase in physical therapy visits, 146 percent increase in occupational therapy visits, 64 percent increase in speech therapy visits, 17 percent decrease in admission rates, 50 percent decrease in overall fractures, and a 60 percent decrease in hip fracture rates. “ParkinsonNet is a great example of how to provide excellent care for patients with complex diseases that require coordination across many specialties and services, in order to keep the patient at the center of care,” DiStasio says.

Defining patient-centered measurement

Several years ago, the Robert Wood Johnson Foundation (RWJF), the California Health Care Foundation and the Gordon and Betty Moore Foundation convened a group to develop principles of patient-centered measurement. Then RWJF funded the nonprofit American Institutes for Research (AIR) to pilot four projects based on the principles. “Our selection criteria required that the applicants name their partners at the beginning and that their budget include compensation for the partner role,” says Karen Frazier, Ph.D., a senior researcher at AIR. “A really important part of partnering with patients and caregivers is showing appreciation for the time and recognition of the time that they're taking to be a part of the work.” All four teams included one patient or caregiver as a team member. They focused on different populations and care journeys, including maternity care, cancer treatment, rehabilitation for people with a traumatic brain injury, and people on dialysis.

The goal was to have them practice patient-centered measurement. The whole group convened regularly over the 18 months to share their thoughts on the work and what it was like for them to try to co-create measures and in what ways that they see their work being patient-driven.

One common theme was the importance of equal partnerships. “The partnerships that were successful were ones in which the patients and caregivers on the team were treated just like any other member of the team and given the same information,” Frazier says. “They had a decision-making role, just like any other member of the team, they were compensated for their time. Also, the teams needed to be flexible, because there are a lot of innovations that come from bringing partners from outside of your field onto a team. And no matter what you think you may expect to happen, they're going to come in with new and really fantastic ideas, and it's going to shift the course of the project.”

Another thing discovered during the pilots is that without intentionality when it comes to diversity and equity as a part of patient-centered measurement, it doesn't happen, Frazier adds.

Maureen Maurer, a principal researcher at AIR, says the Centers for Medicare & Medicaid Services’ Partnership for Patients initiative has pushed the idea of engaging patients and families as part of quality and safety programs. “A lot of hospital networks came on board, and started learning about this approach, because of the Partnership for Patients initiative. Similarly, in research, you see PCORI taking a role in promoting trying to do research differently,” she says. “There are centers of excellence, where people really get the concepts and have strong partnerships with patients and families, and there are others that do it, but may not embrace the ideals quite so wholeheartedly.”

As a clinical psychologist, Jennie David has made the shift in her work with ICN from being a patient to being a professional contributor. “When I have spoken in other academic medical settings about ICN, people were so floored that patients were able to contribute to healthcare,” she says. “And I thought that, of course, patients and families have unique perspectives and the ability to contribute to care, but if we don't give them opportunities that are meaningful and driven by what they want, then we don't see any of that and recognize it. If it's not in the academic literature, it seems like it doesn't matter. When we think about making things better within healthcare, it just seems logical to be co-producing these changes with the people who are going to be experiencing them.”

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