Before you start:
Think about the patients, participants, and population groups that are affected by or impacted by your research or oversight work.
For researchers: these may be people whose data is included in the dataset(s) you are using or people who have similar traits to those in your dataset(s).
When the questions below refer to communities and community members, answer them with these groups in mind. Because trustworthiness is relational rather than static, your results may differ depending on which group(s) you have in mind.
⚠️ This is intended for conversations about biorepository enabled research — research that relies on the collection, storage, and sharing of biological samples and/or data. You might still find it useful in other contexts.
The Calculator
Results
Between 0 and 11
You are early in your community-mindedness journey.
For many quantitative secondary researchers, alignment with affected communities is not a driving force in their research. To get started, use Exercise 1: Representing Groups Thoughtfully to critically assess in what ways communities are implicated in your research. Then, you can use published literature to ascertain the research priorities of this community. Use Exercise 5: Identifying Potential Harms and Benefits to consider how your research may affect them in the best and worst case scenarios. Make a plan to contextualize your research findings using Exercise 6: Grounding Your Communication.
Between 12 and 23
You have already started to assess and deploy strategies to engage with the wishes of community members.
Do your due diligence to ensure you’re representing them properly in the dataset(s) you’re using. If you want to make a serious commitment to community-informed data curation and analysis, use Exercise 1: Representing Groups Thoughtfully and Exercise 4: Looking Critically at Your Dataset. These may be the most hefty tools in the toolkit. Once you’ve performed your analysis thoughtfully, make sure to share the word!
Between 24 and 35
You are a seasoned community-minded researcher.
Make sure you’re using CHIRON to its full potential as you apply for funding and write about your work. Community-informed research like yours could have a splashy impact. Use Exercise 5: Identifying Potential Harms and Benefits to prepare for the best and worst and Exercise 8: Considering Context and Consequences to see the big picture of where you are and where you’re headed.