Communication & Dissemination Strategies
IMPACT Experience Feedback
IMPACT participants described a consistent experience of being asked to enroll in research studies without receiving updates or results afterward unless they actively searched for them.
This lack of follow-up was seen as a major gap in how research is communicated back to patients and their families. They expressed a strong desire for more accessible, timely, and understandable communication. Suggestions included:
receiving study results in plain language with limited medical jargon
using formats like visual abstracts, pictograms, or short explainer videos (ideally under 10 minutes, with chapters or segments)
having a consistent point of contact from the research team to follow up with results and be available to answer any questions
offering a centralized location – such as a section on the PFIC Network website – where updates and results could be posted in an easy-to-read format
When surveyed on preferences for receiving communications about research activities and findings, participants provided the following responses listed in the table on the left.
Participant feedback indicated a strong preference for receiving information via email newsletters and websites.
| Response | Count |
|---|---|
| Email Newsletters | 16 |
| Website | 12 |
| Social Media | 8 |
| Live Webinars | 6 |
| Print Mail | 5 |
| Academic Publications | 4 |
| Blog Posts | 2 |
For practical tools to guide study communication and dissemination planning, download the Researcher Companion (see p.24).
