Improving Research Literacy in Diverse Minority Populations with a Novel Communication Tool

Abstract

Racial/ethnic minorities are underrepresented in clinical research in the USA for multifarious reasons, including barriers to effective communication between researchers and potential research participants. To address the communication barriers between researchers and potential participants, we developed a Research Literacy Support (RLS) tool. The focus of this report is to present findings from the second and third phases of development that refined and assessed usability of the RLS tool. We utilized a mixed-methods approach that entailed iterative cognitive testing with participants (N = 52) from diverse racial/ethnic backgrounds and interviews with clinical research recruiters (N = 20) to modify and refine the design and content of the RLS tool (phase 2). This was followed by assessment of the usability of the RLS tool by 100 participants (phase 3). During phase 2, participants provided feedback about layout, word choice, and comprehension of the tool. In phase 3, participants recognized that they had gained knowledge about clinical research from the RLS tool, although they still had a substantial learning gap after using the tool, indicating an opportunity for further refinement. The RLS tool may help advance health equity by addressing communication barriers that may impede minority participation in clinical research.

Co-producing Progression Criteria for Feasibility Studies: A Partnership between Patient Contributors, Clinicians and Researchers

“…Evaluations of these programmes conclude that theoretical constructs may best be explained through practical examples [46]. A strength of our approach was introduction of a brief education session, which was developed with PPI members to include everyday analogies and jargon-free content to facilitate understanding [44,49,50]. Despite this, some members found it difficult to fully comprehend the abstract concept of a percentage-based progression criteria, which may, in part, be reflected in the wide range of criteria suggested in the initial groups.…”

“…Despite this, some members found it difficult to fully comprehend the abstract concept of a percentage-based progression criteria, which may, in part, be reflected in the wide range of criteria suggested in the initial groups. Visual methods of learning are an accessible and engaging way of increasing comprehension and encouraging creative thinking [41,50,51]. The use of simple graphical representations (e.g., pie charts using Microsoft Excel), or physical counters representing participant numbers, used during the groups, may have enhanced understanding of the impact of one progression criteria over other aspects of the trial.…”

Development of a web tool to increase research literacy in underserved populations through public library partnerships

“…In partnership with the Cancer Disparities Research Network (CDRN) and under the auspices of the NCI-funded Geographic and Biobanking Management Program (G/BMaP), we previously employed a user-centered design approach to develop a flashcard-based Research Literacy Support (RLS) communication tool for use by clinical trial recruiters to advance research health literacy among potential clinical research participants by serving as an interactive guide that enhances communication with the recruiters [ 5 , 14 ]. Development of the RLS tool is published elsewhere [ 5 , 14 ] but briefly, the development process involved three phases. Recognizing the essentiality of investigating the specific needs of intended users at the outset of a user-centered design process [ 15 ], a needs assessment and initial prototype creation was accomplished in Phase 1.…”

“…Phase 2 of RLS tool development entailed cognitive interviewing [ 5 , 16 ]. Phase 2 was comprised of two iterations of semi-structured interviews with potential research participants representing underrepresented racial/ethnic groups and experienced clinical research recruiters followed by modifications to the tool content and design [ 5 ].…”

“…In Phase 3 of RLS tool development, a usability survey was administered to potential research participants from underrepresented racial/ethnic groups after they reviewed the RLS flashcard prototype. The usability survey results indicated that the cards were informative, easy to read, and explained research concepts in simple language [ 5 ]. The RLS tool was thus found to be useful to both participants and researchers at initiating, guiding, and fostering communication between researchers and participants that may foster minority participation in clinical research [ 5 ].…”