COVER STORY · PATIENT ENGAGEMENT Participatory design of digital health apps
The world of digital health apps is another arena in which patient input is needed at the front end to make sure the features meet their needs. In a recent presen- tation, Jennifer Goldsack, CEO of the Digital Medicine Society, said, “I think the promise of being able to mine all of this clinical data, whether for research or care, is enormous. But we need to make really sure that we are measuring things that matter whether clinically or to the patient in terms of their life.” Richard Holden, Ph.D., M.S., a research scientist at Regenstrief Institute and a professor and chair of health and wellness design at the Indiana University School of Public Health-Bloomington, is using participatory design principles in the creation of an app called Helping the Helpers, for caregivers of people with Alzheimer’s Disease and other dementias. The team will start by interviewing and assessing the needs of the caregivers. Then those caregivers will work with the team to create the app with features and functionality that will benefit them. As co-designers, the caregivers will take part in all the design activities and will have equal say in the final product as members of the research team, Holden says. The final phase will more widely test the app to see if caregivers can and will use it. As part of the two-year project funded by the National Institute on Aging, more than six months will be devoted to in-home testing by 15 caregivers. “One of the findings that we have around dementia is that patients and their
loved ones are marginalized, and really thought about it in terms of deficits rath- er than their strengths,” Holden says. “There’s a counter-movement called the strength-based approach focused on what people can contribute, and participa- tory design is very much a strength-based approach.”
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 physi- cal 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
“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.” — Karen Frazier, Ph.D.
AIR. “A really important part of partner- ing 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.
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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 informa- tion,” 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 engag- ing 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 partner- ships 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 profes- sional 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 per- spectives and the ability to contribute to care, but if we don’t give them oppor- tunities 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.” HI
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