Eleven listening sessions were conducted with 117 participants from urban core neighborhoods highly populated with underrepresented populations. While the majority of the participants were African Americans (66 %), the sample was racially and ethnically diverse with Caucasians (15 %) and Hispanics (14 %). Seventy-one percent of participants were female. Many (41 %) of the participants were over the age of 50, followed by the age ranges of <30 (21 %), 30–39 (19 %), and 40–49 (16 %).
Four themes emerged from community member responses: (1) Uncertainties of underrepresented populations regarding research participation; (2) Ineffective communication about research opportunities and research findings; (3) High priorities for underrepresented populations in research and healthcare; and (4) Research teams need training in cultural competence and humility. These themes highlight barriers to research, illustrate research priorities and concerns, and provide methods to enhance engagement in research from the perspective of underrepresented populations (See Table 1 of how these themes compared across groups.)
Uncertainties of Underrepresented Populations Regarding Research Participation
Community members expressed their insecurities as it relates to their research participation. Lack of trust was commonly cited among community members. In addition to lack of trust, community members expressed their concerns for safety and how it influences their participation or lack thereof in research. Each of these will be discussed in further detail below.
Lack of Trust
Lack of trust stemmed from past personal and familial experiences with medical research. These experiences resulted in community members perceiving both negative physical and emotional implications towards research. For members who had previously participated in research, there was a sense that researchers were not forthcoming about their research purposes, and in many cases, refrained from providing evidence of progress throughout the research study. Community members also reported a lack of knowledge regarding medications taken or administered as a part of research procedures. Failure to be provided with sufficient explanations of the medications’ purpose and side-effects was commonly reported by community members.
Concerns for Safety
In addition to expressing lack of trust, community members conveyed concerns for safety. Concerns about safety were often generated from exposure to media outlets such as television and internet stories. The stories, both fictional and non-fictional, contributed to feelings of skepticism toward the true intentions of researchers and research objectives. Examples of these concerns included fear of being treated as “guinea pigs,” being provided with placebo medications, and loss of life resulting from research participation.
Ineffective Communication About Research Opportunities and Research Findings
Consequences of ineffective communication result in limited reach of research opportunities to underrepresented populations. It also contributes to lack of research dissemination to these groups. The continuum of communication issues include the sources of communication to the methods (i.e., channels) of communication. The details of these issues are explained below.
Limited Reach of Research Opportunities to Underrepresented Populations
A key aspect to engaging community members in research is connecting the community to research opportunities. Ineffective communication was cited as a substantial barrier to connecting underrepresented community members to research. A major contributing factor was lack of awareness of research studies and of the researchers who conduct the studies. Community members expressed that research information, such as project outcomes, is not adequately being disseminated throughout the community. In instances where research information reaches the community, it is not easily understood and is not user friendly for some groups. Additionally, those community members who felt their efforts were futile in identifying research opportunities cited that the information on research websites was inadequate, out of date, and/or too complex. Furthermore, they wanted the research outcomes to be circulated throughout the community to assist its members in making informed healthcare decisions.
Lack of Research Dissemination to Underrepresented Populations
Community members identified current and preferred methods for communicating research information and opportunities. Current methods of communication included websites, physicians, family, and friends; however, these methods were characterized as ineffective. Preferred methods of communication identified by community members consisted of community meetings, newsletters, and social media (e.g. YouTube, Facebook).
Research on Primary Care and Prevention are Priorities for Underrepresented Populations in Research
Research priorities among community members involved research on prevention, need for patient-centered care, and patient-centered outcomes in research, and improved patient-provider communication. Participants reflected on personal experiences and perceptions towards research participation to express their priorities. Each of these areas is discussed in further detail below.
Research on Prevention
Primary prevention was a theme that deeply resonated within the listening sessions. Particularly, community members provided their perspective on the need for research aimed at preventing chronic diseases. Diseases identified as priorities include heart disease, diabetes, cancer, and Alzheimer’s disease. Concern for these specific illnesses is a result of the experiences and even loss of many family and community members who suffered with these illnesses. There were also suggestions that exercise programs, organic foods, and natural supplements should be incorporated into the research agenda in an effort to prevent chronic disease. The Community further emphasized the need to identify and/or improve current treatments for these diseases to improve health-related quality of life.
Need for Patient-Centered Care and Patient-Centered Outcomes in Research
In addition to establishing research priorities, participants indicated that research should focus on patient-centered care. Community members highlighted the need for patient-centeredness to improve the quality of healthcare. Community member discussions further emphasized their desire to be involved in the research process so that their needs and preferences would be part of improving healthcare delivery and outcomes. Lastly, many members emphasized that researchers and providers are not responsive to their medical needs regarding information delivery preferences and treatment options.
Improved Patient-Provider Communication
Community members expressed a profound need to improve patient-provider communication. Poor communication in medical settings was a common experience among community members in each CLS. Several participants suggested that their lack of participation in research was linked to ineffective communication with medical providers and/or researchers. Examples included inadequate information, insufficient explanations of blood test results and treatment options, insufficient time with their providers, and methods of follow-up.
Research Teams Need Training in Cultural Competence and Humility
The need to improve cultural competency among healthcare professionals and clinical research staff was a primary concern of community members. This perspective was evident in community member personal experiences with medical and research staff. Experiences indicating the need for cultural competence include poor treatment by research staff, cognitive bias among researchers, and lack of willingness to use devices supporting communicate with patients with disabilities. For some community members, these experiences were at their initial research encounter, subsequently tarnishing perceptions of research participation (see Table 2 for examples of participants’ quotes for each theme).