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Power to the Patients: Co-design of Community-based Research

According to a 2015 statistic, the leading causes of death among adolescents in the US are unintentional accidents, suicide, and homicide. However, many scientists struggle to engage adolescents in research programs to study the behaviors that lead to these devastating outcomes.  In this piece, we shed light on the work of Dr. Sarah Wiehe and her innovative approach to community-based research, highlighting how working with the community transformed a project on the health behaviors of teenage girls.  –Trupti Shetty, PhD Student, Indiana University School of Medicine & Krista Hoffmann-Longtin, PhD, SciCommPLOS Co-editor

by Katlyn Hughes, PhD student, Indiana University School of Medicine

Imagine you’re sitting in a doctor’s office exam room, internet search results in hand. You’re optimistically prepared to tell your doctor everything you’re experiencing, but realistically expecting your ideas to be dismissed and even patronized. This paternalistic treatment of patients, especially adolescents, in the medical field has long been a barrier between physicians and the communities they serve, and has seeped into the research projects of physician-scientists as a distinct separation of patient versus doctor expertise. However, there is a growing movement among clinical investigators that is focused on overthrowing the formal roles and predefined contributions of physicians and patients in the research design process.

Photo courtesy of IU School of Medicine

Sarah Wiehe, MD, MPH, at Indiana University School of Medicine is one such physician-scientist who is focused on empowering patients to participate in co-design of research projects. After receiving her MD from University of Chicago Pritzker School of Medicine in 1998, Dr. Wiehe attained her Master of Public Health in 2004 through the University of Washington. However, Dr. Wiehe relates that her community-centered research didn’t transition from “community-placed to community-based” until after her move to Indiana University. The catalyst for increased community engagement occurred while working on a 2010 research project that later materialized as Pearl Grlz.

While her previous research had taken place in community-placed settings such as schools, the project that would become Pearl Grlz required actively recruiting and engaging with teenage girls from clinics around Indianapolis, Indiana. The goal of the project was to use GPS-enabled cell phones, provided to 14-16 year old girls, to study how location and travel patterns correlated with health-risk behaviors, like cigarette smoking. The initial flier advertising the pilot study featured a clinical title that was three lines long, along with some stock photos and pull-off tabs. While this flier worked adequately for the small-scale pilot study, recruitment for the full-sized project was underwhelming. At that point, Dr. Wiehe turned to a student at the Herron School of Art and Design at IUPUI trained in human-centered design for help redesigning the flier, study title, and website.

Reflecting on this experience, Dr. Wiehe admits that, “it wasn’t rocket science” to figure out that being given a Blackberry Pearl cell phone would be the biggest participation enticement for a teenage girl.

Original research recruitment poster. Photo courtesy of Sarah Wiehe.

The redesigned flier prominently featured the phone being held by a girl’s hands decked out a pearl bracelet and debuted the redesigned, relatable name of the study: Pearl Grlz. With the new flier and increased peer-based recruitment, enrollment in the study drastically increased.

After experiencing for herself the impact of engaging with the community to identify barriers preventing their participation in research, Dr. Wiehe helped found — and now directs — Indiana Clinical and Translational Sciences Institute’s Patient Engagement Core (PEC). The PEC acts a resource for scientists who are having trouble connecting and engaging with the community who is the target of their research, which is often a patient population for clinical researchers. However, the PEC does not merely lecture the investigators on how to solve their problem, they get the real experts — the patients themselves — involved. Patients, or members from the study’s target community, are brought in for group sessions to participate in hands-on activities and discussions with the researchers and PEC staff.  This human-centered design approach fosters co-design of research studies between patients and scientists, giving patient communities the opportunity to influence scientific research through sharing their expertise of their own experiences.

For Dr. Wiehe, one of the most important goals of the PEC is the empowerment of the patients who are essential to research studies. In her experience, patients are typically shocked to find that academic scientists sincerely value their input and decisions. She wants people to know that their participation in research is critical, and that their feedback will always be well-received for its value. Community members are experts in what their community needs, and if scientific research is not addressing those needs properly, then it entirely loses its relevance.

Revised recruitment poster. Photo courtesy of Sarah Wiehe.

The process of scientists working with their target community to co-design research strategies is an iterative one. Patients or community-members are able to provide assistance with the current project, but also feedback on how to improve future studies. One aspect of research study design where patient-feedback is particularly important is dissemination of results. The academic community consistently fails to get results back to the community to whom they are relevant, because that relevant community is not the academic one. While findings are published in academic journals, patients and target communities are unlikely to have access to these expensive, subscription-based publications. Constant engagement and feedback from communities and their leaders is an important step to learning how to better disseminate scientific results back to the community who made the study possible and relevant in the first place.

However, there are challenges to overcome for this co-design research approach before it can become standard practice within the academic community. A major barrier is the attitude in academia that community engaged research should be postponed until scientists have reached an established, tenured position. According to Dr. Wiehe, senior scientists even go as far as to dissuade their mentees from pursuing community-based projects due to the amount of time and effort they take, when compared to how little they are valued for promotion consideration.

Dr. Wiehe argues that because community-based research does take time, “starting earlier drastically increases the odds of having a relevant, impactful project by doing community engagement upfront and making meaningful connections.”

Although it is a risk, getting an early start in community-based research has true value.  In her work with the PEC, Dr. Wiehe has found that while patients gain empowerment from participating in research co-design, investigators drop their sense of importance in a positive way. According to Dr. Wiehe, the vast majority of scientists who work with the PEC undergo a perspective shift that automatically takes the emphasis away from themselves and towards the community. Investigators come back to the PEC wanting to learn how to involve the community even earlier in the research design process, with the most well-seasoned investigators asking their community what the next research question should be.

Promisingly, investigators who have worked with the PEC have started to see signs of success outside of their own studies. According to Dr. Wiehe, some of these scientists are gaining trust and respect both in the communities they serve and in academia nationwide. Another important marker of the academic success of co-designed research is that these projects continue to be funded. One PEC investigator, Dr. Tamara Hannon, has one of IU’s Top 10 Largest NIH Grants. It will be important for the success of this co-design research approach that the movement towards community-engagement strategies continues to grow within academia.  

Katlyn Hughes is a PhD student in Dr. Amber Mosley’s lab in the department of Biochemistry and Molecular Biology at Indiana University School of Medicine. Their lab’s focus is studying transcription, the copying of DNA into RNA, and investigating how cells regulate this essential process.

Katlyn’s post is the second in a series exploring community engagement in scientific research, written by graduate students in the Communicating Science Minor Program at the IU School of Medicine and IUPUI.

Discussion
  1. We need more such doctors like Dr. Sarah Wiehe who are not just focused on practising medicine but are also inclined towards finding a cause for a problem, getting to its roots and then deriving at a solution. Her work is commendable. It was an interesting read

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