COVER STORY · PATIENT 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.


“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.” — Jennie David, Ph.D.


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 fi guring 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 fi nal 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 fl attened? Are they in the


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 rec- ognized 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 associ- ate chief medical offi cer and a pediatric gastroenterologist at Dayton Children’s Hospital and clinical director of ICN. “The fl attening of the hierarchy and the power equation is the secret sauce, I think.” Howe says that involves a para- digm 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 hap- pens 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 feed- back 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 the 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 the PCORI. But in the shift to value-based care,


Kristin Howe, D.C., M.H.A.


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 qual- ity 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


there also is a need for health systems to develop more patient-centered outcomes measures to complement the clinical mea- sures 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 medi- cal information offi cer 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 defi ne 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


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have to begin to defi ne with different patients with different conditions what other outcomes that matter might be,” Simpkins adds. “How do we defi ne 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 out- comes data is a step in the right direction,


Shehzad Saeed, M.D.


“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 fi brosis 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 approxi- mately 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 treat- ment for up to three years, says Stephanie Chisolm, Ph.D., BCAN’s director of educa- tion and research.


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