Results from the Newsletter and Community Engagement Survey
We extend a heartfelt thank you to everyone who participated in our recent survey about the PC Project newsletter and community engagement. Your input is invaluable to us, and we’re grateful for your time, insights, and thoughtful feedback. With your help, we’ve gained a deeper understanding of what matters most to you, and we’re excited to share some topline results along with our plans moving forward to serve our community even better.
What We Learned
1. Email Newsletters Are Working for You
- An overwhelming 92.7% of respondents prefer receiving PC Project updates through email, and 85% of you read the newsletter regularly—whether “always” or “often.” Many of you appreciate the current design and length, so we’re glad to hear it’s accessible and engaging.
2. A Strong Interest in Research Updates
- We heard you loud and clear: research updates are incredibly valuable to our community, with nearly 96% of respondents prioritizing this content. Community stories, upcoming events, and advocacy efforts also add value, and we’re glad these features continue to resonate with you.
3. Growing Demand for Virtual and In-Person Meetings
- Many respondents shared that they’re interested in attending virtual and in-person gatherings, with 80% preferring annual virtual meetings, and 65% wanting to connect face-to-face each year. Additionally, there’s considerable enthusiasm for local mini patient support meetings.
4. Social Media: Mostly Facebook, with Room to Grow
- Facebook is our most-followed platform (55% of respondents), though some of you would like to see more activity on other platforms like Instagram and YouTube. About a quarter of respondents aren’t currently following us on social media, highlighting an opportunity to reach even more of our community through these channels.
What’s Next: Our Commitments to You
Based on your feedback, here are some actions we’ll be taking in the coming months:
- Prioritizing Research Updates in Our Newsletter
- We’ll continue to prioritize research updates in each newsletter edition. To help deepen your understanding of the latest advances, we plan to add periodic Q&As with experts and dive deeper into the details of ongoing studies.
- Expanding Meeting Options to Enhance Accessibility
- To meet the demand for both virtual and in-person connections, we’ll work toward hosting annual gatherings that can be attended in person or virtually. Additionally, we’re exploring mini patient support meetings in various regions, making it easier for members to engage locally.
- Strengthening Our Social Media Presence
- While we’ll maintain our active presence on Facebook, we also plan to expand engagement on Instagram and YouTube to reach more of you. Keep an eye out for reminders in the newsletter and opportunities to connect on social media.
- Targeted Content for Each Segment of Our Community
- We heard from various groups—patients, family members, friends, and medical professionals—and will tailor content based on your unique preferences. For example, we’ll feature more patient stories, share inspiring testimonials, and provide more technical research updates based on your interest.
We’re excited to implement these changes with your valuable input as our guide. Thank you for helping us shape the future of PC Project’s communications. Your involvement strengthens our community and fuels our mission. Together, we’re making a difference.
