In the final session of the workshop, two respondents reflected on the main messages that they heard in the presentations and discussions over the course of the day. Hayley Thompson is associate professor in the department of oncology at the Wayne State School of Medicine and has done research on the use of digital technologies with cancer patients. Andre Blackman is a consultant with the firm Pulse + Signal and co-founder of the FastForward Health Film Festival. Several roundtable members also participated in the conversation, resulting in a wide-ranging summary and extension of the day’s discussions.
Interventions need evidence that demonstrates their effectiveness, said Thompson. Yet the time from “discovery to dissemination” can be an issue for interventions. Creating an evidence-based program requires getting support for the program, implementing it, gathering and analyzing data, demonstrating efficacy, and moving toward dissemination. The length of this process can be daunting for academic researchers, who need to produce results to advance in their careers. Yet academic researchers need to be involved in the process of generating evidence because of the expertise, theory, and methods that they can contribute, Thompson said. Institutions therefore may need to do more to support researchers who want to pursue this work.
One way to involve institutions is to do more education about community-based participatory research. For this research to succeed, said
Thompson, institutional review boards, reviewers, and other parts of the research ecosystem need to know more about the methods, practices, and processes of this research.
At the same time, research could be sped up through innovative approaches. Traditional randomized controlled trials are not always necessary to demonstrate efficacy, Thompson observed. Methods like pragmatic trials, comprehensive dynamic trials, or rapid learning cycles can produce valuable evidence and move the field forward.
Blackman began by emphasizing the intersection of policy and privacy, which came up periodically during the workshop. eHealth applications generate data that are both medically and commercially valuable. Companies such as Apple are paying attention to how data from digital health applications are shared. But patients need to have control over the sharing of information, he said.
He also pointed toward the importance of sustainability. People’s lives are so full, change is so rapid, and people are exposed to so much information that a short-term campaign cannot be expected to have a lasting effect. Instead, sustainability needs to be integrated into interventions, he said, so that change is built into the context of people’s lives. The design of an intervention can be a critical factor in its sustainability, he pointed out, and guides to human-centered design exist and could be used toward this end.
Technology is a valuable tool, said Blackman, but it cannot replace person-to-person contact, especially in communities likely to experience health disparities. “There is no substitute for getting down and talking to people about how this is going to be useful, why this is important in your lives, why it is important for your family, and getting feedback from them.” The two-way exchange of information requires listening and finding out what is important in people’s lives. “That is where we can begin to tailor a lot of these initiatives and tools around what is actually important in people’s lives,” he explained.
Health is something that people tend not to think about when they are feeling fine, but people need to be engaged even when health is not forefront in their minds, said Blackman. Integrating health into the things that are forefront in their mind would be one way to pursue this goal. A single father with three children who is working multiple jobs does not have time to think about eating five fruits and vegetables per day. But if healthy eating could be made part of the issues that concern such a father, prog-
ress could be made. Also, the social determinants of health are extremely powerful, Blackman reminded the workshop participants. Thinking about how health interacts with transportation, family issues, or other things that are important in people’s lives could improve health while addressing nonhealth issues as well.
Focusing on the social determinants of health emphasizes the importance of multidisciplinary research, Thompson added. She is a psychologist who partners with anthropologists so they can go into people’s homes and figure out how technology fits into their lives and can more effectively meet their needs. For this kind of research, a multidisciplinary perspective is critical, she said. The use of technology in health care also requires the use of people throughout a community, such as community health workers and community leaders, she said. This is particularly the case with the most marginalized communities, such as people involved with substance abuse, the criminal justice system, or the foster system.
Thompson returned to the need to fully engage community members and stakeholders in the process of tool development and tool evaluation. Furthermore, communities are not just the people who live in specific neighborhoods. Online communities, thought leaders, and content creators are examples of dispersed communities that can help build a movement for the use of technology to reduce health disparities. A useful guide, she added in response to a question, is critical race theory,1 especially in its application to public health.
Involving communities means arranging for feedback from community members at all stages of a project, Blackman said, adding “From the jump, we need to make sure that the people who we are looking to serve are a part of it . . . so that we are able to create things that matter.” Such feedback can contribute to the rapid development of a program, even if it means that a program fails quickly so developers can pursue other ideas.
Blackman also cited several additional communities that should be involved, such as racial and ethnic minority technology entrepreneurs, educators, and workforce development organizers. “Introduce yourself to these kinds of leaders; let them know what you are about,” and then let them help you, he said.
Winston Wong, medical director for Kaiser Permanente Community
1 Critical race theory looks at the relationships among race, racism, and power. It is an activist approach that is based on the assumptions that racism is ordinary and acceptable, white privilege exists, and the belief that the concepts of race and racism are social constructs rather than a biological reality.
Benefit, commented on the need for technology companies to be more accountable to the diversity of American society. These firms can create opportunities for diverse groups to help create and use technologies. In this way, they can address some of the broader determinants of health that help generate disparities. The guiding principle, he said, should be “no technology without me.”
An interesting discussion took place regarding the extent to which an intervention can be scaled up without losing the cultural competency that helped make the original intervention effective. Thompson emphasized the importance of building feedback into an intervention so it can be adapted to new circumstances while it is being scaled up.
Mildred Thompson asked if scalability is always possible: “If I create a community-based program here in the city of Detroit, and I have worked with my community partners and members, and we have some effective outcomes in terms of health—and we have worked closely for years on this initiative—why would I expect that to work in exactly the same way in Chicago?” A better way to think about scalability may be in terms of the methods, ideas, and templates that people elsewhere can use to design their own intervention. In particular, added Toni Villarruel, Dean of the University of Pennsylvania School of Nursing, there may be critical elements that need to be sustained while other elements can be changed. “We, as researchers, have the obligation to help people figure out what we have learned and how that can be used in their community,” she said.
Finally, Thompson pointed to an obstacle not much discussed at the workshop, which is the willingness of health care providers to accept and adopt technologies. “Some of our research across institutions here in Detroit shows that there is not always uniform acceptance of a new technology” by providers, she said. Providers may see new technologies as taking valuable time to learn and to use, even when they are beneficial to patients. At Kaiser Permanente, the use of technology is “part of the organizational culture, but that is not the case everywhere,” she concluded.