PROTECT and Silent Spring Institute Inaugurate a Mobile App to Provide PROTECT Participants their Research Results
On October 15, 2018, the PROTECT Human Subjects and Sampling Core (HSSC) and the Community Engagement Core (CEC) guided the first group of PROTECT participants in the process of accessing the results and information from their participation in the study. Dr. Carmen M. Vélez Vega and Dr. Phil Brown have led the CEC and HSSC teams in an unprecedented approach to reporting individual research results, in this case through an app participants access through their smartphones. The smartphone application of Silent Spring Institute’s Digital Exposure Report-Back Interface (DERBI) was designed especially for PROTECT, adapting from an earlier computer-based DERBI tool.
The development of this technology and ultimate product was a team effort. The Silent Spring Institute, through the direction of Dr. Julie Brody and the excellent work of Katie Boronow and Herb Susmann, provided a prototype that incorporated suggestions from PROTECT’s Community Advisory Committee and Stakeholder Committee, which is composed of PROTECT participants. The report back process has been coordinated by Colleen Murphy, Doctoral Student in Public Health, Nancy Cardona, Doctoral Student of Environmental Public Health, Héctor Torres, Health Educator, and Zulmarie Díaz, MPH, with the support of Zaira Rosario, Data Director and Ishwara Ayala, Data Coordinator. The work and commitment of Abigail Figueroa, RN, Field Supervisor for PROTECT, has been essential to the success of these efforts. PROTECT researchers, including Drs. José Cordero (Co-Director), Akram Alshawabkeh (Co-Director), John Meeker (Project 1), Deb Watkins (Project 1), and Ingrid Padilla (Project 4) contributed their scientific expertise. The Data Management and Modeling Core, led by Dr. David Kaeli and supported by Zlatan Feric, coordinated the data to be included in the app.
Overview page of the DERBI app in English
Report Back is being presented in small groups at the suggestion of participants. General introductory information on the report back is provided, followed by a presentation on the main contaminants being reported a full demonstration of the app. Participants receive unique id codes to access their individualized report, which compares individual results with both the study and the US averages. The team remains close by to provide support and answer questions about the results. A private WhatsAPP group has been organized to provide support and exchange information on the Report Back app experience. Participants who attended this first meeting were very interested and involved in the exploration of the app.
Among the recommendations the PROTECT Report Back app provides is the use of a carbon water filter to help keep out harmful chemicals. The present post-Hurricane Maria socioeconomic situation for most families in Puerto Rico is one of hardship. The PROTECT team is providing a complimentary faucet water filter to each participant that receives Report Back, to promote the health of the people that have made our research possible.
Left: Screenshot of the phthalates overview in English. Right: A sample screenshot showing how a participant’s individual results are reported in comparison with the total cohort data. The numbers correspond to the study visit at which the samples were taken.