So far, we’ve looked at different methods for reaching two types of possible participants: members of your community, and non-members. You should have a customized messaging for each of these groups (and for each segment of your target audience within them). On the other hand, while developing targeted messaging is important, you shouldn't limit the ways in which you convey your message. For instance, explore different messaging channels such as written versus video. In another instance, try out two different ways of conveying the same message. A message to one audience might say, "Take the survey and participate in research for the good of the community)". A similar message but to a different audience might be a personal story from someone in the community about the need and value of health information.

As you try out various messaging, be sure to set up ways to track your messaging later on when you are ready to execute your outreach plan close to launch day. This can help you compare and contrast which messaging led to greater number of participants in your registry, completion of your surveys, etc.

General Tips

  • Your messaging should focus on “why” people should be involved, rather that “what.”
  • Whenever possible, include a photo of, or an endorsement from, one of your organization leaders that members will recognize and trust.

Avoid Certain Kinds Of Messaging

  • Anything that is not patient-centered or community-focused. Appeal to your participants on a personal level
  • Too many acronyms or jargon within a message
  • Negative messaging
  • Overly long messages


  • Not very appealing: XYZ Organization now has a new patient registry to collect health data with an emphasis on (technical medical jargon).
  • Better: What is living with (your condition) like for you? Take the survey in the XYZ registry to let your voice be heard. Help foster new research for better treatments to improve your life.

Use Stories From Community Members As Part Of Your Messaging

Stories from patients or other community members are extremely compelling. If you do not already have stories, make a list of themes you want to have in your messaging for your registry. Possible themes are the positive impact that research has had already on individuals, why people might want to share their information, and in the case of a community centered around a specific condition, the day the person was diagnosed and what was known about the condition at that point. Post these stories on your website, blog (if you have one), or if they are videos, host them on YouTube. Use the links to the stories in your appeals to others to take the survey.


  • “Carol reflects on how past research on XYZ changed her life, and her optimism about XYZ Patient Registry’s ability to accelerate research." - Carol Doe, XYZ Foundation
  • A video example can be found on the PXE International registry sign-up page

Social Media Messaging

Social media is a powerful platform for organizations to meet participants where they are, build relationships, and ultimately, encourage people to sign up for their registries. Unlike printed materials, social media is used to build relationships where both parties frequently engage with one another. This engagement is defined not only in a one-time or one-way interaction where organizations and its members like or comment on each other’s posts; rather, this engagement is in having reciprocal and frequent interaction with one another by re-sharing one each other’s posts, sharing content that is valuable to both parties, and giving public recognition to each other.

However, organizations frequently misunderstand the purpose of their social media presence. Rather than using it as a social platform, organizations use social media as a broadcasting platform: as if social media is simply another channel to post announcements, news, and asks. Yet the key to building social media relationships are by treating it as a face-to-face relationship. The strategies listed below are ways to your organization begin building strong, reciprocal relationships online, and transform your online presence as a broadcaster to a social entity.

Establish Your Goals, Research, Metrics

Before we introduce the best practices in social media engagement to use for your PEER registry, we must first do some pre-work to help determine your goals, success measures, and target audience.

First, you must define what an “effective” and “successful” social media engagement looks like for your organization. The primary goal for organizations using PEER may be to increase registry sign-ups or completed surveys. However, others may have additional measures such as an increase in the number of researchers who leverage PEER data, increase in donations to support the registry, or an increase in the partnerships established.

Second, you should define and understand your target audience. It is important to describe who your audience is whether it be participants, researchers, or partners; but be sure to get specific possible: define the type of parent (mother, father caregiver), researcher (what field of study are they in?), partner (large foundations focused on your condition, corporations with philanthropic missions that align with your organization). The more specific you can narrow your audience, the more specific information you can find out about their behaviors and interests.

Furthermore, it is equally important to understand who your target audience is. Do some background research on your target audience through recent reports by Sprout Social, the Pew Research Center, and Tracx. Which social media platform do they predominately use? What kind of news and information do they seek, and where do they seek it?

Third, assess whether social media is or is not in fact the place where your organization should be. Word-of-mouth may be an even more powerful tool among your community compared to social media; doctors, for example, may be a key driver in informing your community about resources related to your condition. Once you’ve determined if social media is the predominant platform of communication for your community, determine which social media platforms have a strong foothold among your members. You may find that you only need Facebook; or you may find that you need to be on Facebook, Twitter, Youtube, LinkedIn, and Snapchat (but most likely not!). Know how your audience uses each platform, and what each platform is best used for. To get started, view demographic information for each social media platform here.

Lastly, determine how you are going to track your success. Will you be integrating an analytics platform or through tracking sites like Mention? Remember that the number of likes and posts does not necessarily mean you didn’t meet your goals; therefore, you should specify how you will measure your engagement to reach your organizational goals.

Social Media Resources

Below are 3 resources to help you improve your social media engagement, which includes a best practices guide on social media, sample social media posts to promote the registry, and a literature review on social media and health.

Top 10 Social Media Engagement Practices
Sample Social Media Posts for PEER
Social Media Literature Review

We'd also love to hear from you! Share your best posts, social media-related articles you come across, or other best practices with our PEER community on our PEER admins listserv.