HEAL Connections Sharing Session: Communicating Your Research with Plain Language Materials

Alexandra Collins, Ph.D., M.Sc.
Assistant Professor, Department of Epidemiology, Brown University School of Public Health

Dr. Alexandra (Alex) B. Collins (she/her) is a medical social scientist and an Assistant Professor in the Department of Epidemiology at the Brown University School of Public Health. She is also a faculty affiliate of the People, Place, and Health Collective. Collins uses community-engaged qualitative and ethnographic methods to examine social, structural, and environmental factors that impact people who use drugs across drug use risk environments, with a focus on how these intersect across social locations to shape drug use practices and health care access. She is particularly interested in how housing, criminalization, and built environmental factors impact access to harm reduction interventions; the impact of the changing drug supply on drug use practices and health outcomes; gendered experiences of drug use and overdose risk; and the implementation and effectiveness of harm reduction and treatment interventions.

Claire Macon
Research Assistant, People, Place, and Health Collective, Brown University

Claire Macon (she/her) is a Research Assistant at People, Place, and Health Collective (PPHC) at the Brown University School of Public Health where she conducts qualitative research on harm reduction and overdose-related interventions. Her work at PPHC builds off of previous direct service and organizing work related to houselessness, drug users’ rights and access, and sex workers' rights. Macon is also a Sex Work Support Group Coordinator at Project Weber/RENEW. She is interested in research that focuses on community-centered harm reduction strategies and understanding labor and survival amongst criminalized populations.

Julia Vail, M.A., PMP
Communications Project Manager, Duke Clinical Research Institute

Julia Vail (she/her) is a Communications Project Manager on the Duke Clinical Research Institute’s Research Communications & Engagement team. Vail manages internal and external communications for projects like the Environmental influences on Child Health Outcomes (ECHO) Program and ACTIV-6, including efforts to return plain-language results summaries to participants and sharing them for broader public consumption. While managing communications for the Pediatric Trials Network (PTN), she collaborated on formative research to determine the best ways to return aggregate research results to adolescent participants and their caregivers. She has presented on best practices for returning research results at the Medical Writing and Lay Summaries Summit and during an Association of Clinical Research Professionals (ACRP) webinar. 

Maya Ragavan, M.D., M.P.H., M.S.
Assistant Professor, Department of Pediatrics, University of Pittsburgh

Dr. Maya Ragavan is an Assistant Professor of Pediatrics in the Division of General Academic Pediatrics. She is also the Associate Vice Chair of Diversity, Equity, and Inclusion Research for the Department of Pediatrics and Associate Core Director for the Clinical and Translational Science Institute Community PARTners Core. She completed her medical school from Northwestern University, pediatric residency from Stanford Children's Hospital, and a general academic pediatric fellowship from Boston Medical Center. Ragavan's research interests focus on preventing intimate partner violence (IPV), specifically by supporting IPV survivors in pediatric health care settings and examining the impact of cultural and structural racism on IPV survivors and their families. She also does work focused on engaging parents in supporting their adolescent-age children in developing healthy romantic relationships. She is deeply passionate about uplifting community voices through research and most of her research is conducted in partnership with community-based organizations. She is also interested in language equity in research and focuses her work on communities who speak languages other than English.

Joseph Amodei, M.F.A.
Assistant Professor, Department of Theater, Media Design, Lehigh University

Joseph Amodei (they/them) is a new media artist, theater designer, activist, and educator. Their work seeks to make material differences with and for people at the intersection of art, emerging technology, and community. Amodei grew up in North Carolina where they received a B.F.A. in studio art from UNC-Chapel Hill. Amodei completed their M.F.A. in video and media design at Carnegie Mellon. They are an Assistant Professor of Media Design in Lehigh University's Department of Theater. Recent work has explored immersive archive creation and virtual reality, mediated storytelling amplifying the Black history of the south, gameplay and gerrymandering, the HIV/AIDS crisis and performance of queer care, and human-centered design and issues of health equity. Learn more about their work.

The below resources are recommended further reading from our Communicating Your Research Through Plain Language Materials panelists.

• PPHC Zines
  • A collection of Zines created by the People Place and Health Collective at Brown University. Topics include Wound Care 101, the makeup and effects of counterfeit drugs in Rhode Island, and xylazine in the drug supply.
• TestRI Dashboard
  • A public-facing home base for TestRI’s drug testing efforts, including background information, supply updates, substance spotlights, resources for safer drug use, and a table showing what they tested, when, and where.
• The Community Engagement Alliance Consultative Resource (CEACR)
  • CEACR helps NIH-funded research teams implement community-engaged best practices in their work. Researchers who seek to apply principles of community-engaged approaches can set up a consultation using the CEACR Consult Request form.
• Ampicillin in Infants: Plain Language Summary Example
  • A designed-plain language summary developed by the Pediatric Trials Network, as shared by Julia Vail during her presentation.
• “Eat, Sleep, Console” approach shown to be more effective in caring for newborns with neonatal opioid withdrawal syndrome: Plain Language Summary Example
  • A plain-language summary developed by the Environmental influences on Child Health Outcomes (ECHO) program on the Eat Sleep Console study.
• Resources from the Multi-Regional Clinical Trials (MCRT) Center at Harvard and Brigham & Women’s Hospital
  • Return of Aggregate Results to Participants Guidance Document, version 3.1: A practical guidance document for all sponsors (e.g. industry, non-profit, government, academic) that addresses in detail key challenges in returning results and potential solutions
  • Return of Aggregate Results Toolkit, version 3.1: A supplement to Guidance Document above, this toolkit provides templates for return of results summaries, plain language descriptions of endpoints, checklists for Plain Language Summary reviewers and ethic committees, and more.
  • Health Literacy in Clinical Research: Interactive website for the MCRT’s Health Literacy in Clinical Research Project. It contains clinical research-focused health literacy resources that support the integration of health literacy strategies across the clinical trial life cycle.
  • Draft FDA Guidance on Provision of Plain Language Summaries: When finalized, this guidance will represent the current thinking of the Food and Drug Administration (FDA) on this topic. It is intended to facilitate the voluntary provision of plain language summaries of aggregate results to research subjects and to the general public.
• Clinical Research Plain Language Glossary
  • A list of research words and their meanings that participants/patients can use to learn more about words that are used in research studies. Update coming in March 2024.
• Accessibility by Design Toolkit
  • A comprehensive resource intended to be used by sponsors, institutions, investigators, ethics committees/IRBs, participants, and patient advocacy groups to support greater inclusion of people with disabilities in clinical research.
• Community Campus Partnerships for Health (CCPH)
  • CCPH offers consultations to support community engagement needs and challenges. Sign up here.
• Layperson Summaries of Clinical Trials: An Implementation Guide
  • TransCelerate BioPharma Inc. presents practical considerations for pharmaceutical industry sponsors when developing and delivering aggregate result summaries to study participants and the general public.
• CISCRP Sample Trial Results Summaries
  • Examples of plain-language summaries developed by the Center for Information and Study on Clinical Research Participation (CISCRP)
• Summaries of Clinical Trial Results for Laypersons (EU Overview)
  • This document provides lay summary guidelines and templates in accordance with the EU Clinical Trials Regulation. Annex V sets out ten elements that must be addressed in lay summaries.
• Immigrant and refugee perspectives and experiences with the COVID-19 vaccine: Social Media Cards Example (English, Spanish)
  • A series of images explaining the rationale, methods, and results of a study in accessible language and with graphic elements. These are designed for Instagram but could be used on multiple social media platforms.