Engaging Communities in Asthma Studies: How We Can Make a Difference

Conducting Research Studies with Diverse Participants

Asthma research studies must include diverse participants to ensure treatments will be safe and effective for all communities. New approaches to care can affect people differently based on their age, sex, racial and ethnic group, and health status. It is important for diverse participants to take part in research studies to show how asthma treatments work for different communities.

In 2013, PCORI’s first targeted funding announcement called for research on how to improve adherence to national guidelines for managing asthma, specifically in Black/African-American and Latino communities. Eight studies received funding. (See related blog post, Addressing Disparities in Health Outcomes of People with Asthma.) In a recent paper in the Journal of Allergy and Clinical Immunology, the eight teams behind the studies presented some of the lessons they learned about overcoming barriers to recruiting in a diverse set of communities for asthma research.

Overcoming Recruitment Challenges

The eight project teams collaborated to better understand how to overcome shared obstacles. We discovered commonality among our patients and the reasons that they did not want to participate in research studies.

Here we highlight strategies to overcome common recruitment challenges:

Diagnosis Is the First Step
Some patients didn’t want to participate in research studies because they didn’t think they had asthma. Unlike many other chronic diseases, asthma’s symptoms can be intermittent or seasonal. So, patients without daily symptoms often do not realize they have asthma. Some do not recognize that the symptoms they have, such as coughing, are related to asthma. And others who know that they have a respiratory disease simply don’t recognize that it’s asthma. (See box below: A Patient Partner’s Report.)

To address this lack of recognition, researchers on our teams used two strategies. First, we changed the language we used in recruiting research participants. Instead of asking prospective participants whether they had asthma, we asked about breathing problems. Second, we asked patients to meet with their clinicians to get clarity on their diagnosis and how to treat it. Once patients recognized that they had asthma, they were more interested in participating in the research.

Linking Asthma to Other Issues
Some patients don’t consider asthma a serious problem, or they consider it secondary to managing other chronic conditions.

To engage these patients, recruiters emphasized other benefits of study participation. For example, some studies assisted with cockroaches or mold in the home, addressed other housing issues, or helped participants navigate the healthcare system. (See box below: Simple Changes Make a Big Difference in a Patient’s Health.)

Flexibility Is Key
Another barrier to study participation is the patient’s everyday life getting in the way. The demands of work, childcare, and transportation made recruitment difficult. This barrier sometimes prevented patients from keeping appointments. It even made it difficult to reach patients by phone.

We realized our projects would require flexibility. Recruitment would require extra time and resources. Study teams tried different times and different days of the week, including weekends, for recruitment calls. We sometimes sent text messages to figure out the best times for calling. Respecting patients’ time, our teams scheduled research appointments along with patients’ regular doctor visits or at convenient locations, such as home or work. Teams provided transportation and parking vouchers to cover costs. Finally, patients could reschedule appointments multiple times.

Understanding and Alleviating Participant Concerns about Research
Researchers from all eight studies encountered patients who didn’t want to participate in any kind of research. Each team tried to understand patients’ reasons, but patients were often not open to sharing. For some patients, the reason was a mistrust of medical research for historical reasons.

To address this barrier, our teams tried to maximize similarity in race and culture between study recruiters and patients. We also tried to build the recruiters’ appreciation of and empathy toward patients’ skepticism and mistrust. Recruiters acknowledged historical institutional racism and intentionally discussed research patients’ rights, confidentiality, and autonomy in research.

We also had success with emphasizing the study’s connection with known and trusted healthcare providers, for instance by sending recruitment letters on community health center letterhead. Finally, we made certain to discuss the study’s potential benefits and emphasize that this was not a pharmaceutical trial, since some patients were averse to being in a study of new medications.

Communication and Gaining Trust

In any recruitment effort, communicating effectively and gaining patients’ trust is a top priority. This is especially important when working with patients from varying socioeconomic backgrounds and with limited health literacy. Our patient advisory boards gave us feedback on how to improve our recruitment language and approach. We learned how to recruit in a way that would resonate with the potential participants and meet them where they are.

The lessons we learned about recruitment in these eight studies can apply beyond asthma. Researchers in other areas have encountered similar challenges in their work, and we hope our experience will help others more easily navigate challenges.

The views expressed here are those of the authors and not necessarily those of PCORI.

Updated: May 12, 2017