Your continuous outreach will be critical to the growth and value of your registry for your community. After launching, you can expect to engage with your audience to:

  • Support participant questions and issues
  • Recruit new participants and re-engage existing participants

Participant Questions and Issues

As the registry sponsor, you are the first line of contact for participants with participant issues and questions. We encourage sponsors to adapt any of the relevant FAQ's in this Wiki for their participants in a Word document, and post a link to the document on the registry landing page. This will help you overcome the common questions participants asked by participants, and free up more resources for you to work with other aspects of the registry.

From our experiences, some participants choose to email their organizations directly with questions and issues. However, others also use the 'Get Feedback' link at the bottom of your registry page, as seen below. Overall, please encourage all your participants to use this 'Get Feedback' link.

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Furthermore, take some time to develop other ways to answer participant questions and issues, especially if it relates to your survey such as:

  • Offering Skype sessions
  • Training and utilizing navigators (we’ll have some resources to share with you on this)
  • Being available by phone on certain days/times to answer questions
  • Inviting members to email their questions and answering all questions received in an FAQ on your Web site, Facebook or any means that your members use regularly (we’ll provide you with a template FAQ to get you started)
  • Webinars to explain and answer questions (create a presentation for this purpose).
  • Conference calls to answer questions (document questions and answers and put them on your site in the form of an FAQ – see above)
  • Encouraging community members who have access issues to invite a friend or family member to help them to fill out the survey
  • Encouraging community members to connect with other members through your Facebook group or other social media, and ask them about their experience with the survey
  • In your survey, include a short question about users’ experience, and include these responses on your website. Address negative responses and give future users advice on how to avoid things that confused previous survey takers

Technical Issues

The 'Get Feedback' link is especially valuable to you and our PEER team if the participant has a technical issue. The link will automatically collect information such as the browser type and version, computer type, and what registry the participant is coming from. The feedback is automatically sent to the PEER team. Our team will forward any survey-related questions to your organization's PEER administrators. For tech-related questions, our team will diagnose and seek to find a solution, and administer the solution to the participant directly.

IMPORTANT: Refer to our How to Report Troubleshoot Issues page and adapt them for your participants. This section goes over the key information our team needs to efficiently diagnose the problem.

Trust Issues

Depending on your community and their history with research, some members might express trust issues about reporting their information. To be prepared, you may need to craft messages about why people can trust you and the registry. This should not be your primary messaging, but you can sprinkle it in to help the naysayers move forward. You can also invite community members who are hesitant to a webinar, tweetchat or Facebook discussion on the topic of trustworthiness.

Some members may also have trust issues specifically related to sharing information via an Internet portal. You can discuss the privacy settings in PEER and the safety of the portal in discussions, tweetchats, Facebook posts, emails, webinars. If your members have specific questions about the protections that underlie PEER, the team at Private Access (Genetic Alliance’s partner in this endeavor, and PEER’s technology provider) is happy to help field these.

It also might be helpful to mention that similar projects using PEER have benefited other communities, so that members know projects like this have happened before. You can learn more about other projects that have used PEER in the past on our website: both our Patient Focused Drug Development program and the Community Engaged Network for All.

Continuous Outreach

Frequency and reach are important for grabbing the attention of possible participants, and to engage existing participants. You will need to spend time on outreach every week for the number of weeks you are trying to get people to start and finish your survey. They need to hear about it from you, your partners, the doctors, clinics, and researchers you work with, the media, their friends and family, their support group sources, other support organizations, and anyone else who can help you to make sure they realize they need to take action.

Outreach to Community Members

The following are many different communication methods you can use to reach your own community. Use as many of them as possible. If you can, assign someone in your organization to be responsible for getting these messages out on a weekly schedule.

  • Reach out over social media, listservs and other online groups.
    • Post a variety of messages that appeal to different people in different ways – messages about why participating in research is important, messages about what you are learning from the registry and still want to learn, messages about reaching goals, etc.
    • Post regular updates about your success in getting responses. If possible, put a thermometer on your website that shows the number of people who have taken the survey against your goal number.
    • Please also refer to our Executing Your Outreach Plan: Social Media section for additional resources on best practices in social media engagement.
  • Utilize all types of mail… and even consider calling community members.
    • Send emails through Constant Contact or other email clients.
    • Send postcards to your members by regular mail.
    • If you use an “advocacy alert” system, send out a message asking for involvement.
    • Publish in newsletters.
    • Since not everyone is connected to the Internet, it may be beneficial to call your members and speak to them directly about your project. This way, if they have any questions you can answer them immediately.
  • Boost mentions of your registry with your followers.
    • On a Facebook page, you can pay to boost posts on others’ feeds. Learn more here.
  • Utilize thought leaders in your membership.
    • Reach out to specific individuals, asking for their help because they are leaders in your group. Ask them to take the survey and post on your Facebook page or other groups about how easy it was and why it is important. Be sure to ask a variety of people to get involved.
    • Ask leaders to speak briefly at events.
  • Ask members to help.
    • Many of your members have blogs and Facebook pages chronicling their experiences. Reach out to your membership to ask who has such blogs and Facebook pages and ask them to post about your project, and to tag your page in the post.
    • Many of your members are also on Twitter. Be sure to ask them to retweet your tweets.
    • Ask members to forward your messages to members they know who do not stay connected to your group.
    • Ask members to forward your messages about the project to other communities to which they belong, who may be interested in the project (this is also a good strategy for reaching non-members).
    • Add a feature on your website so that people can refer their friends after completing the survey.
  • Promote the registry at in-person meetings and webinars.
    • Bring a laptop or tablet to a meeting or conference and sign people up to use the survey. (Note: While PEER is not mobile-optimized it does work well on larger tablets (ex. larger than an iPad Mini or Kindle Fire). If you’d like to use tablets to sign up participants, we recommend first previewing the survey to make sure there are no issues).
    • Give a conference presentation about the project and why it is important. You can give the presentation at a conference or in a webinar.
    • Conduct a webinar on the project, record it and post it to your website.
  • Hold events directly related to your project.
    • Host an in-person or virtual launch party (or both at the same time). Invite your members and any local partners you may have. Give a short presentation and have some fun! You can announce your event through a Facebook event so that all of your followers get an invitation, or send out formal invites for an in-person event. You can also do a creative online launch party on Twitter or Facebook.
    • To address some of the concerns everyone has about members not having time to participate, schedule an “event” post-launch where you ask your members to schedule that day to sign up for the registry and take a survey or two. On that day, have volunteers from your organization available to answer questions about filling out the survey (navigators). If you have members who will need family or friends to help them to fill out the survey, be sure to mention that they should also schedule a friend or family member for that day to help them. You should also create buzz around your schedule day. For instance, if you send the invitation to your Schedule day on Facebook, community members will answer if they will “attend” or not. That will give you some idea of how many people were paying attention.
    • You can also do more than one Schedule day. If your Schedule day is successful, do another one! If you have multiple surveys or modules for participants to complete, consider doing SCHEDULE days for different modules. Even if members don’t participate on a Schedule day, getting the word out about these will communicate the need to set aside time to participate.
    • Prior to launch, you may need to train your volunteer navigators for your Schedule days and figure out how to take calls or answer questions online from members who have questions. We will provide you with some participant FAQ questions that you can customize – along with some tips on developing navigator programs.
  • Use videos in your messaging to promote the registry.
    • Some of your members may have created compelling videos that are posted on your website and Youtube. If they are patient stories or similar, obtain permission to use links to the stories in your messaging.
    • Your organization may already have videos that you can use (including any videos you created with your community guides).
    • You can also create new videos and ask your members to create some of their own to include an appeal to take the survey.
    • If you do not already have a Youtube channel, create one to house any videos you collect. You can ask your members to share it (which is also a great way to promote the project to non-members).

Outreach to Non-Members

  • Participate in external events to engage with (and potentially recruit) non-members.
    • Develop lists that include events like: health fairs, health expos, or disability and chronic illness conferences.
    • Your organization can obtain a booth at the events or in some cases you may be able to send materials for resource fairs, etc. without having to attend in person. If you obtain a booth, bring a clipboard and sign-up sheet so that you can later contact anyone who might be interested in your project.
    • Be sure to target resources to the audience of the event. If you’re meeting directly with possible participants, bring information on how they can sign up for the registry. If you’re meeting with physicians or researchers, bring information about how they can get involved in the project and spread the word to the possible participants they might interact with.
  • Again, reach out over social media, listservs and other online groups.
    • On Twitter, host a tweetchat on the registry and reach out to specific people who are interested in your subject material. You could use your own hashtag to promote the tweetchat, or you could look into guest-hosting an existing tweetchat. Here's a list of healthcare-related hashtags – including those that are specific to tweetchats.
    • On Twitter, send an .@username message with information about your project to influencers, support groups, hospitals, media, advocates and others. BE SURE TO INCLUDE THE “.” BEFORE THE @USERNAME. If you just start the message with @username, only people who follow both you and that user will see the message in their feeds.
    • Tweet your press release and send targeted @username messages to the media with the press release.
    • On Facebook, reach out to similar groups and ask them to post information about your project on their page. Have them tag your group in the post so interested people can have a link to your Facebook page.
    • Create an Instagram account where you can post photos promoting your project, and use hashtags (LOTS of hashtags). You can link your Instagram to your Facebook page so that you can share your photos there, too.
    • Find support groups or similar on Yahoo! Groups or Google Groups that could be related to your community, and contact them about promoting your project.
    • Identify people on Twitter who have very large followings and ask them to retweet your message. They do not necessarily have to be people who are related to your condition or area of interest. To ask them, send them an @username message or direct message through Twitter.
    • If you have a YouTube page, create and upload a video about your project. You can talk about why this project is important; provide stories about members; and more. Your video could become very useful in other social media as well because you can tweet it and post it on Facebook. Videos you created with your community guides can also work).
    • Be sure to use #hashtags (especially on Twitter and Instagram) so you can see how many people are picking up on those.
    • Please also refer to our Executing Your Outreach Plan: Social Media section for additional resources on best practices in social media engagement.
  • Consider using other types of digital media.
    • If you are really ambitious, consider creating a podcast that you can use for many different purposes. Information on how to get started can be found here: How to start your own podcast.
  • Engage with the press and with online media sources.
    • Send a press release at launch (see: Launch Checklist). Be sure to post it on your website so that you can link to it on social media.
    • Identify bloggers and others who have written on your area of interest, or who write about populations related to you such as special needs subjects, living with chronic conditions, etc. Send them a written guest blog post or ask them to interview you for their blog.
    • If someone has written about your condition or area of interest in the past, ask them to do a follow-up with information about your project.
  • Reach out via bloggers and other internet posters.
    • Develop lists of blogs, journal posts and news articles about your condition or area of interest that are already on the Internet (as noted above). If you decide to reach out to the authors, they will need individualized approaches. Some of the blogs and articles currently on the Internet about your condition or area of interest may be old, but that does not mean that you can’t reach out to them anyway. There are a number of ways you can ask them to engage with you, based on the types of posts.
    • For stories of individuals with your condition/with experiences similar to your community on blogs and on YouTube:
      • Ask bloggers to post about your project.
      • Ask bloggers and YouTubers if you can use their stories in your outreach with links and credits.
      • Ask them to take your survey if they are people telling stories about themselves or their family members, and to send emails to other families they know and post in Facebook groups about your project.
    • Articles and blog posts describing your condition/reporting on your area of interest:
      • Contact the author (usually listed within the article) and ask them to write another story and include information about your project.
      • Ask them to post a badge advertising the registry beside the article they already wrote (likely only going to be doable for bloggers who manage their own sites).
      • Write a guest blog post for them that relates to the article they wrote with your project information in it.
      • If you cannot reach them, place a comment on their blog with a link to your project.
      • Contact the author of medical articles/papers and ask them to help with outreach to their networks.
  • Consider paid advertisements: there are many inexpensive ways to advertise.
    • Facebook, Google, and Yahoo all offer ads. They usually charge on a per-click basis and you can set limits to how many clicks you will pay for.
    • Google Adwords
    • Facebook Advertising
    • Yahoo Ads
    • You may be eligible for free Google ads through Google Grants.
    • Genetic Alliance may also be able to use some of our own Google ad awards to promote your registry – let us know if you are interested!
    • You can also take out adds or classifieds in newspapers – sometimes the smaller community newspapers are very inexpensive.
    • You can also look into ads on other web sites and blogs.
  • Utilize unpaid advertisements.
    • Ask partners to post links on their web pages.
    • Make a Public Service Announcements. One great place to get your announcer-read PSA on the air is at college campus radio stations. People in the local area and students listen to those stations. These stations are nonprofits and they are operated by students. An example can be found example.
  • Find and contact potential external partners.
    • Identify organizations, hospitals, clinics, doctors, online groups such as Yahoo! Groups and others who may have an interest in helping to promote your project. Think as far outside your circle as possible. (For example, are there certain populations of people who are more likely to have a condition?) You can ask for different levels of assistance from these partners such as:
      • Distributing flyers and brochures to possible participants. There are many online printing sources that are inexpensive and easy to use such as GotPrint, or UPrinting, with which you can create these resources.
      • Promoting the registry on their site using badges.
      • Writing an article for their newsletter about your project.
      • Posting your information on their Facebook pages, and tagging your organization in the post.
      • Tweeting about your project, and including your organization in the tweet (@organization, called a mention). You will see these mentions in your notifications on Twitter. Be sure to thank them.
    • Ask your current members where they communicate outside of your group. Do they belong to other support groups or online forums? Ask them to help you to reach those groups or to post for you.
    • Send targeted messaging to “affinity” groups where potential participants may congregate.
    • Identify partner channels – clinics, pharmacies, hospitals, specific support groups, similar organizations with which you already have a relationship or who you can connect with before launch.
    • Identify support groups that deal with your area of interest from many perspectives – for instance, “living with a disability” or “special needs parents”.
    • Identify organizations dealing with symptoms that are relevant to your community – for instance, vision loss, hearing loss, chronic pain, cancer, lung disease, seizures, paralysis, anemia, osteoporosis, diabetes, heart conditions, etc.
    • Specific segments of society may have a special connection to your area of interest – for instance, Jewish groups, LGBTQ communities, minority groups, women’s organizations, organizations serving people from specific countries, immigrants, and so on.
  • Locate other potential distribution spots/contacts to make.
    • Think about the places where your constituency may go often. Some may be seeking natural treatments for pain, for example. There are also every day places and specific places where you might reach them:
      • Libraries
      • Grocery Store
      • Salons
      • Sports Facilities
      • Retirement communities
      • Public Health Centers
      • Therapists: massage, physical, speech, occupational, drug/alcohol, mental health (including community mental health centers)
      • Natural health spas, acupuncturists, chiropractors
      • Developmental disability service providers
      • Schools or universities
      • Courthouses, detention centers, and other government buildings
      • Clubs and fraternal organizations such as lions, optimists, etc.
      • Other types of nonprofit organizations, including foundations that fund research, disability issues, etc.

To learn more on how to track your outreach, please refer to our section on Executing Your Outreach Plan: Tracking Your Outreach.