Identifying Issues and Priorities in Reporting Back Environmental Health Data
Abstract
:1. Introduction
2. Materials and Methods
2.1. Step 1: Preparation
- Participant Overview: One-hundred and forty-three people registered to attend the 2018 PEPH Annual Meeting, representing academic institutions (66%), government (primarily NIEHS, 22%), community organizations (11%), and local public health (1%). Thirty-five attendees chose to participate in the concept mapping workshop, representing academic institutions (63%), NIEHS (11%), community organizations (23%), and local public health (3%). Overall, workshop attendees reflected the meeting registration, with a smaller proportion of government representatives and higher proportion of community representatives. All participants were affiliated with an NIEHS-funded research center or research project with a community-engaged-research component, as either the funder, academic researcher, community-engagement core staff, or community partner. The majority (n = 21) were Community Engagement Core staff, described in the introduction. All participants contributed to brainstorming, 26 completed sorting, and 21 completed rating (some attendees paired up to complete the online components, while others chose not to participate). Three workshop participants, in addition to the two HERCULES staff members, participated in the additional interpretation and utilization steps reported here.
2.2. Step 2: Generation of Statements
2.3. Step 3: Structuring of Statements
2.4. Step 4 and 5: Representation of Statements and Interpretation of Maps
2.5. Step 6: Utilization of Maps
3. Results
3.1. Cluster Map
3.2. Clusters
3.2.1. Cluster One: Effective Communication Strategies
3.2.2. Cluster Two: Community Knowledge and Concerns
3.2.3. Cluster Three: Uncertainty
3.2.4. Cluster Four: Empowering Action
3.2.5. Cluster Five: Institutional Review and Oversight
4. Discussion
4.1. Overview
4.2. Discussion by Theme
4.2.1. Effective Communication Strategies
Recommendations
4.2.2. Community Knowledge and Concerns
Recommendations
4.2.3. Uncertainty
Recommendations
4.2.4. Empowering Action
Recommendations
4.2.5. Institutional Review and Oversight
Recommendations
4.3. Limitations
5. Conclusions
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
References
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Steps | Step Components | 2018 PEPH Workshop |
---|---|---|
Step 1 Preparation | Selecting Participants Developing Focus Prompts: Focus for Brainstorming Focus for Rating | All 2018 PEPH Annual Meeting attendees invited to participate. Brainstorming and Rating prompts developed by HERCULES staff in consultation with NIEHS PEPH staff. |
Step 2 Generation of Statements | Brainstorming | Workshop participants collectively brainstormed. |
Step 3 Structuring of Statements | Sorting Statements Rating Statements | Workshop participants independently sorted and rated online during workshop |
Step 4 Representation of Statements | Creation of Maps | HERCULES staff used Group Concept Mapping software to create maps during workshop |
Step 5 Interpretation of Maps | Statement List Cluster List Naming the Clusters Point Map Cluster Map Cluster Rating Map | Workshop participants selected ideal cluster solution during workshop, gave input on cluster labels. All workshop participants invited to participate in survey and conference calls to select final scenario and further interpret maps. |
Step 6 Utilization of Maps | For Planning (e.g., action plans, needs assessment) For Evaluation (e.g., measurement, outcome assessment) | Subset of workshop participants developed summaries of results and recommendations to improve report-back among the environmental health community, reported here. |
Statement Number | Statement | Average Rating a | Bridging Values |
---|---|---|---|
Cluster One: | Effective Communication Strategies | 4.24 | 0.13 |
5 | Making sure the information is understandable | 4.95 | 0.1 |
28 | What language to deliver it in | 4.55 | 0.08 |
27 | Communicating the appropriate level of concern | 4.35 | 0.27 |
19 | What medium to use/how to deliver it | 4.2 | 0.08 |
11 | Defining scientific measurement/terms | 4 | 0.05 |
7 | How to represent it visually | 3.95 | 0 |
8 | Medical and environmental health literacy | 3.65 | 0.33 |
Cluster Two: | Community Knowledge and Concerns | 3.98 | 0.29 |
3 | Including community input on report-back process | 4.86 | 0.45 |
4 | Ensuring community concerns are reflected in the report-back | 4.76 | 0.42 |
26 | Using cultural competence | 4.6 | 0.41 |
16 | Being able to reach people for report-back | 4.4 | 0.64 |
20 | Undervaluing community knowledge | 3.6 | 0.04 |
14 | Bias against community members from academics | 3.55 | 0.11 |
18 | Cognitive dissonance between researchers and community | 3.4 | 0.1 |
33 | Results may not be satisfactory to the community | 3.4 | 0.39 |
9 | Assumption that community doesn’t understand | 3.2 | 0.05 |
Cluster Three: | Uncertainty | 3.85 | 0.38 |
12 | Deciding what to report | 4.3 | 0.28 |
15 | Being able to talk about uncertainty | 3.9 | 0.25 |
31 | Outlining what factors/sources are contributing to the results | 3.75 | 0.33 |
24 | Differentiating between research results and diagnosis (sub-clinical results) | 3.74 | 0.55 |
13 | Not having a standard for comparison | 3.55 | 0.46 |
Cluster Four: | Empowering Action | 3.77 | 0.4 |
30 | The ability to act given socio-economic disparities | 4.25 | 0.3 |
29 | What kind of recommendations can we make | 4.15 | 0.26 |
10 | What do they do with it | 4 | 0.3 |
25 | Can the information be used to solve the problem | 3.9 | 0.21 |
1 | How to include clinical recommendations when appropriate | 3.29 | 0.45 |
6 | Engaging medical care providers | 3.05 | 0.89 |
Cluster Five: | Institutional Review and Oversight | 3.37 | 0.62 |
32 | Getting IRB approval to do report-back | 4.2 | 1 |
22 | Concerns about telling them what to do/what not to do | 3.7 | 0.33 |
17 | Composition of the IRB (community representative) | 3.4 | 0.79 |
21 | Unanticipated negative consequences beyond consented individual | 3.2 | 0.42 |
2 | Tension in scientific community around right to know vs. not doing harm | 2.9 | 0.51 |
23 | Managing media | 2.85 | 0.67 |
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Lebow-Skelley, E.; Yelton, S.; Janssen, B.; Erdei, E.; Pearson, M.A. Identifying Issues and Priorities in Reporting Back Environmental Health Data. Int. J. Environ. Res. Public Health 2020, 17, 6742. https://doi.org/10.3390/ijerph17186742
Lebow-Skelley E, Yelton S, Janssen B, Erdei E, Pearson MA. Identifying Issues and Priorities in Reporting Back Environmental Health Data. International Journal of Environmental Research and Public Health. 2020; 17(18):6742. https://doi.org/10.3390/ijerph17186742
Chicago/Turabian StyleLebow-Skelley, Erin, Sarah Yelton, Brandi Janssen, Esther Erdei, and Melanie A. Pearson. 2020. "Identifying Issues and Priorities in Reporting Back Environmental Health Data" International Journal of Environmental Research and Public Health 17, no. 18: 6742. https://doi.org/10.3390/ijerph17186742