Exercise 7
Communicating Transparently
We know that research of all types benefits when communities are informed. For repository-enabled research, transparency and communication is especially important. Because repositories aggregate data from many studies, the original participants may feel left out, overlooked, or even disenfranchised.
Proactive communication both during and after the project is key to making research more relevant, trustworthy, and impactful.
đ Step 1: Read
Read one or two (light) readings
đŹ Step 2: Discuss
Apply discussion questions to a real or hypothetical research project
âď¸ Step 3: Reflect
Use a worksheet to reflect on how this exercise applies to your work, and note key takeaways
Step 1.
Read
đ Read as a group.
Note: web versions include links to additional content.
Reading
Read the following reading as a group. You might take turns reading aloud or spend a few minutes reading quietly.
“Communicating About Biorepository Research with Communities“
Principles and approaches to communicating with communities and the public
Step 2.
Discuss
đŹ Discuss a real or imaginary project
Discussion Prompts
Use the prompts below to guide your groupâs conversation.
You can focus on a real research project or make one up for this exercise.
List of Communication Methods
As you move through the exercise, return to this list for inspiration.
Communicating Directly with Communities
- Biorepository newsletter
- Presentation to a patient or community group (in-person or virtual)
- Social media post in a community forum (e.g. a subreddit)
Communicating with Communities via the Public
- Blog post (personal, institutional, or biorepository-hosted)
- Post on a project or lab website
- Social media post (e.g. LinkedIn, X/Twitter, Reddit)
- Social media video (e.g. TikTok, Instagram, YouTube)
- Public-facing presentation (e.g. podcast, radio segment, news article)
Communicating within Academia
- Journal article
- Other academic publications (white paper, thesis, preprint, etc.)
- Poster or talk at a scientific meeting
Direct Communication
Think about the community(ies) or group(s) whose data you are using, and those who will be most impacted by your research.
- Do you have a way to communicate with these communities or groups directly? Refer to the List of Communication Methods for ideas.
- Which (if any) methods from the list could you realistically use?
- Are there other approaches you would add?
If you donât have a way to communicate directly, youâll need to reach out indirectly by sharing information with the broader public.
Sharing Early
Sharing your research while it is still underwayânot just at the endâbuilds transparency, trust, and accountability. It helps communities understand how their data is being used, and gives you the chance to receive input before your results are finalized.
Use this section to guide sharing about your work now or as you plan your future research.
- How can you share about your project while itâs being conducted? Which methods from the list apply? (Consider both direct and public-facing options).
- Are there other approaches you would add?
- What if community members have feedback for you about your research? How will they be able to reach you?
- Contact info for your project (email, website, etc.)
- Institutional contact point (e.g., research office, communications team)
- Comments on your social media/blog post
- Q&A at a presentation or webinar
- Draft a short, plain-language description of your project that could be shared on a website, in a newsletter, or through social media. The goal is to be brief but clear.
Include:
- Who you are and your affiliation
- Title of your project (working title is fine)
- Your research question
- Immediate goal (what youâre trying to accomplish right now)
- Broader purpose (what larger goal youâre contributing to)
- Choose one of these verbs to start: discover, identify, mitigate, improve, inform, benefit.
Example, âDiscover targets for Parkinsonâs Disease.â
- How people can learn more (e.g., link to a dataset descriptor, lab website, or contact info)
Sharing your Findings (Dissemination)
- Once your project is complete, how will you share your results? Refer back to the list for ideas.
- Which methods will you prioritize? Are there others you might add?
- If your project didnât lead to big or surprising findings, how will you still communicate the purpose of your work and what you learned (or didnât learn)?
Benefit-Sharing
- Think about how value from your project might flow back to the people or communities who contributed data.
How do you plan to share benefits (monetary or otherwise)?
- What barriers might you face?
- What facilitators could help (e.g., institutional policies, existing community partners)?
Anticipating Challenges
- There are many reasons researchers may feel challenged about communicating with communities or the public. Do any of these resonate with you? Add others if needed.
- Time constraints
- Budget constraints
- Lack of general communication skills
- Lack of expertise with specific skills (social media, public speaking, writing for lay audiences, graphic design)
- Restrictions from my institution
- Risk of misrepresentation by media
- Anxiety about public communication in general
- Anxiety about receiving criticism
- Worried about hostile pushback (e.g. online harassment)
- Pick one or two challenges that feel most relevant and brainstorm how you could overcome them. Jot down your ideas on your worksheet or in a shared document.
Here are some ideas for how to overcome barriers to communication to get you started:
- Consulting with your institutionâs communications or social media staff
- Using pre-made templates or institutional guides
- Choosing free/low-effort channels (e.g., blog post, lab website, social media)
- Writing short, time-efficient summaries
- Partnering with community members or colleagues to co-communicate
- Joining or forming a peer network for emotional and practical support
If youâd like to explore further, here are some external resources.
Hostile Pushback
Benefit-Sharing
Resources and Examples for Public Communication
These are also included in the reading for this exercise
- American Association for the Advancement of Scienceâs Communication Toolkit – An excellent resource that goes more into more depth on the hows of science communication, including:
- Tips for identifying audiences, tailoring messaging, and avoiding jargon.
- A social media guide with advice on matching the goals of your communication to suitable online platforms.
- A guide to using multimedia like graphics and video.
- TikTok: An Emergent Opportunity for Teaching and Learning Science Communication Online – This paper includes pointers for using TikTok for public research communication.
- Reddit – allows researchers to post to condition-specific subreddits or the broader Ask Me Anything (r/ama) subreddit.
- Example: a group of researchers led an âask us anythingâ about endometriosis research in the r/endometriosis subreddit.
- Instagram – may be a useful platform for sustained project communication depending on the target audience.
- Example: the trans-ilience research team uses instagram for community communication and outreach.
Step 3.
Reflect
âď¸ Document your takeaways
Note on versions:
Reflection Worksheets
Take a few minutes to reflect on this exercise using the worksheet below. Choose the version that best matches your role â or share one worksheet as a group. Jot down any insights, questions, or takeaways.
Researchers:
Ethics Committees:
Data Access Committees:
Next Steps
Youâve completed this exercise. Great work! đ