How to disseminate study findings to research participants

CHIBE and PAIR have collected best practices for how to disseminate study findings to research participants. We encourage research teams to use these tools to communicate with the patients and clinicians who participate in their studies.

Why communicate results to study participants? Sharing results with participants can increase trust in the health care system, providers, and research and may also increase future trial participation. In addition, it allows participants to benefit from their contribution to research, and it increases opportunities for understanding the impact of the research.

What to include in an email to research participants

• Brief description: Remind people what study they were a part of and what they did as part of it.
• Main take-away: Start the letter with the main take-away from the study in 1-2 short sentences: “With your help, we learned…”
• Infographic: Use an infographic, if you can, to explain the results. Check out Canva for design help, or contact Meghan.ross@pennmedicine.upenn.edu.
• Headers: Use headers to break up the email into these sections:
  • What the study looked at
  • What we thought might happen
  • What we found
  • How you can use this information
  • More information (such as a link to where the paper is published, media coverage links, an email address or phone number for questions, links to projects that are currently recruiting)
  • Thank you: “What we learned from this study was only possible due to your generous contributions of time and effort. Your efforts will help us design better care for patients in the future. Thank you for all your help!”

You can find an example letter here.

Tips for communicating to research participants via email

• Use clear, simple wording. AI tools may be helpful for creating a first draft in plain language. You can also find the Joint Research Practices’ guide to plain language here.
• Keep the message to around 350-400 words or less, and aim for a middle school reading level.
• Break up long paragraphs.
• Use bullet points when possible. Find the Joint Research Practices’ guide to readability here.
• Consider drafting different letters tailored to the type of participant (i.e., patients, clinicians, experts).
• Use familiar words in place of jargon (use “doctors” instead of “health care providers”).
• Remember you are the expert, but others might not have any prior knowledge, so provide brief background information to make sure everyone is on the same page.  
• Contextualize your findings. Instead of saying “this intervention increased people’s daily physical activity by X steps,” think of another way to communicate what that means, such as, “You walked X more miles per week!” Visuals can help you communicate the main takeaway.
• Use translation services if possible/relevant for your study population.

What to avoid

• Avoid unnecessary phrasing (use “many” instead of “a number of” or “monthly” instead of “on a monthly basis”).
• Don’t use words with more than 1-2 syllables if possible (use “help” instead of “assistance,” use “more” instead of “additional,” use “money” instead of “incentives”).
• Refrain from using acronyms. Spell out terms, such as “electronic health record.”

How to communicate to research participants via video

Two Penn-approved vendors for video animation to describe research studies are Kindea Labs and Paupanimation.

Here is the general process for video animation: The research team writes the script. (Try to keep this short – 2 minutes or less if possible.) Based on the script, a storyboard is drafted for feedback. The research team then records the script or arranges for someone else to do the recording. Using the recorded script, the animation is created. After feedback/iteration, the animation can be shared via email with study participants.

Stay tuned for a comprehensive dissemination guide on this topic. Also, reach out to the Joint Research Practices if you are interested in more guidance for disseminating results to participants. Contact JRP@pennmedicine.upenn.edu for help.