| Literature DB >> 34198866 |
Erin Polka1, Ellen Childs2,3, Alexa Friedman1, Kathryn S Tomsho4, Birgit Claus Henn1, Madeleine K Scammell1, Chad W Milando1.
Abstract
Sharing individualized results with health study participants, a practice we and others refer to as "report-back," ensures participant access to exposure and health information and may promote health equity. However, the practice of report-back and the content shared is often limited by the time-intensive process of personalizing reports. Software tools that automate creation of individualized reports have been built for specific studies, but are largely not open-source or broadly modifiable. We created an open-source and generalizable tool, called the Macro for the Compilation of Report-backs (MCR), to automate compilation of health study reports. We piloted MCR in two environmental exposure studies in Massachusetts, USA, and interviewed research team members (n = 7) about the impact of MCR on the report-back process. Researchers using MCR created more detailed reports than during manual report-back, including more individualized numerical, text, and graphical results. Using MCR, researchers saved time producing draft and final reports. Researchers also reported feeling more creative in the design process and more confident in report-back quality control. While MCR does not expedite the entire report-back process, we hope that this open-source tool reduces the barriers to personalizing health study reports, promotes more equitable access to individualized data, and advances self-determination among participants.Entities:
Keywords: community engagement; data sharing; health equity; report-back; software
Mesh:
Year: 2021 PMID: 34198866 PMCID: PMC8201126 DOI: 10.3390/ijerph18116104
Source DB: PubMed Journal: Int J Environ Res Public Health ISSN: 1660-4601 Impact factor: 3.390
Figure 1Visual representation of the steps necessary to insert numerical and text data into the report-back template using MCR.
Figure 2Visual representation of the steps necessary to insert graphical results into the report-back template using MCR.
Semi-structured interview questions for the research team members using MCR in a subsequent report-back.
| 1. Tell me a bit about the previous process for preparing environmental or health data in individual reports for research participants (i.e., “report-back”). |
| a. What were the considerations for the methods of data presentation (e.g., in text, tables, or figures) |
| 2. What were some of the benefits of the way these reports were developed before? |
| 3. What were some of the limitations of this report development process? |
| 4. With MCR, what has changed about your work? |
| a. How much time does each report take? |
| 5. What are the benefits of MCR? |
| 6. What are the limitations of MCR? |
| a. How much technical expertise is needed to adapt or modify MCR to develop new reports? |
| 7. What suggestions do you have to adapt or modify MCR? |
Characteristics of reports created manually and using MCR.
| Study | Report Component | Manual Report-Back | Report-Back with MCR |
|---|---|---|---|
| CRESSH HOME | Number of pages | 7 | 19 |
| Number of individualized numerical or text results | 4 | 23 | |
| Number of individualized tables | 2 | 6 | |
| Number of individualized graphs | 4 | 8 | |
| Other | ten generic | six individualized | |
| ACHIEVE 1 | Number of pages | 2 | 2 |
| Number of individualized numerical or text results | 0 | 5 | |
| Number of individualized tables | 0 | 1 | |
| Number of individualized graphs | 0 | 1 |
1 In ACHIEVE, manual report-back was for reporting manganese levels in previously shed baby teeth, whereas report-back with MCR was for reporting manganese levels in residential tap water.
Report-back process qualities for manual reporting and reporting with MCR.
| Report-Back Process Qualities | Manual | Report-Back with MCR |
|---|---|---|
|
▪ Time spent on manual entry and report compilation/review | ✓ | |
|
▪ Time spent on report design | ✓ | ✓ |
|
▪ Confidence in report data quality; low potential for data entry errors | ✓ | |
|
▪ Individualized results | ✓ | ✓ |
|
▪ Technical expertise (Excel, PowerPoint) required | ✓ | ✓ |
|
▪ Adaptable for large-scale studies, longer reports, multiple reports, or projects with small teams | ✓ |