Mi PROTECT Report Back Platform Pilot Test Shows the Importance of Research Right to Know and Participant Feedback
A paper in January’s PLOS Digital Health reports on the results of a pilot test of PROTECT’s mobile-based report back application Mi PROTECT. PROTECT developed the platform to provide participants with tailored, culturally relevant information about personal contaminants exposures, and to educate participants on chemical substances and exposures. The initiative and pilot test were led by Dr. Carmen Vélez Vega, Dr. Phil Brown, and PROTECT Community Engagement Core (CEC) members. The paper was led by Dr. Nancy Cardona and CEC trainee Dr. Irene Lafarga Previdi.
Report-back provides participants with their research results and makes them aware of the harms of personal exposures. To enhance report-back, Dr. Julie Brody and Silent Spring Institute, one of PROTECT’s partner institutions, developed the Digital Exposure Report-Back Interface (DERBI), which gives individuals personalized summaries of results and graphs that compare individual results to whole group results, as well as benchmarks from the National Health and Nutrition Examination Survey (NHANES). To strongly communicate results to participants, PROTECT’s CEC set out to develop a DERBI platform tailored to PROTECT’s Puerto Rican cohort.
The pilot Mi PROTECT platform provides participants with several pieces of key information. Participants are given urine levels of six environmental chemicals by visit; the levels of environmental chemicals in household tap water, if they had home samples taken; and a report with summarized results of the overall study. The platform then provides recommendations on how to reduce exposure to detected chemicals and other chemicals found in Superfund sites in Puerto Rico. Participants also have the option to select areas of interest to learn about specific topics, like contaminant sources or exposure reduction strategies. The app is offered in both Spanish and English.
General PROTECT information and personalized results section on the phone platform.
To make sure that the platform best serves the PROTECT cohort, the CEC conducted a pilot test with a group of 61 PROTECT participants who accurately represent the overall PROTECT cohort in terms of age, relationship status, and income. The 61 participants were invited to receive their personal study results through the application in a group meeting at PROTECT’s research facility in Manatí, and in partner Community Health Centers. After a presentation that trained individuals on how to use the platform, participants used the application to see their results. To provide Feedback, participants filled out two surveys, one about the platform’s accessibility and navigation, and one about the effectiveness of the training. Participants also had a private WhatsApp group to talk about the experience.
Mobile platform access and avatar selection.
A majority of participants indicated that the report back process was appropriate, relevant, and interesting, and could improve their quality of life with regards to environmental health. Those who reported problems with the process made comments on appointment scheduling and meeting coordination, which were addressed in later meetings. 97% of the women said that the information they were provided would motivate them to continue learning about the topic. With regards to the mobile application, 83% of the women said it was easy to access, and 80% of participants said it was easy to navigate. When it came to cultural relevance, a majority of the women said that the avatars and images used were accurately representative of Puerto Rican culture. 86% of the women said they would use the platform again.
The feedback from pilot test participants was overwhelmingly positive, but researchers still received helpful feedback about incorporating more avatars and changing product images to be more relevant to what is sold into Puerto Rico. This demonstrates the importance of participant input in reporting strategies and platforms, as allowing for feedback can facilitate community engagement, research translation, and participant trust. Lessons from pilot tests also inform general research and community strategies. The results from this pilot program have already been useful as they informed the creation of the PROTECT Responde campaign launched in the summer of 2021. Report back strategies themselves are also very beneficial, as they can lead to improvement of environmental health literacy, individual and community empowerment, improved trust in science, better cohort retention, and greater motivation to reduce household exposures. When participants are rightfully treated as individuals with valuable insights, researchers, participants, and the community at large benefit