Developing Your Outreach Plan: Launch and Post-Launch


What Is Outreach?

Everything you do in your outreach effort to involve your members in your PEER project is ultimately part of what you can do to grow your community and improve outcomes for individuals and their families.

Outreach Involves Three Levels Of Measurable “Reach Outcomes”

These are:

  • Community Member Reach: The number of prospective participants you reach in your community through your outreach efforts, based on the target audience you set (current number of prospective participants in your database or network).
  • Non-Member Reach: The number of potential participants outside of your member reach.
  • Conversion Reach: The number of people your organization has reached (community member or otherwise) who have started and/or completed a survey in you registry.

To reach members and nonmembers and convert them to survey completers, you need two communication approaches:

  • Communication plans for your current community members
  • Communication plans for reaching non-members who fit your target audience

Below, we’ll take a look at some possible methods of communication to include in your communications plans for members and non-members – and after that, take a look at developing the message platforms to support your plans.

When you’re ready, start using the worksheet at the end of this page to put your communications plans together.

Launch Checklist

The following is a checklist of things you can do to reach community members and non-members prior to launch and on launch day. You should draft your messaging depending on who the communication will reach. On launch day, it’s likely you’ll be targeting both groups – but your communications strategy post-launch will likely be more individualized (See section on Post-Launch Continuous Outreach).


  • Contact your partners to ensure that they are ready to post your badge1 or other advertisement on their site
  • Prepare printed materials to be sent to doctors, partners, other groups
  • Identify where you can purchase mailing lists
  • Contact groups in your immediate circle to tell them about what you are doing and ask for their involvement
  • Plan your project timeline and schedule webinars/conference calls to explain the project to members
  • Recruit volunteers to help with various aspects of your outreach
  • Determine what supplies you may need to be involved in events, conferences, fairs, etc.
  • Collect several very compelling stories from the community. These can be written or videos
  • Purchase or develop mailing lists of doctors, hospitals, clinics
  • Identify additional communities that have a common bond with you
  • Determine how you will engage partners (see worksheet in PEER Prelaunch Outreach)
  • Gather your media contacts
  • Begin to prepare your community with Facebook posts, blog posts, etc.
  • Gather a list of your previous successes (in research, from surveys)
  • Identify leaders in your membership
  • Ask members if they are operating other support groups, blogs or Facebook pages related to your condition – make a list
  • Decide if you need navigators to help participants enroll – begin to identify who they may be, and how they will fit into your registry management plan2
  • Brainstorm events
  • Increase your social media presence
  • Write some standard “blurbs” to help people overcome barriers

Launch Day

  • Send out a press release (we will provide you with some samples)
  • Post an op-ed piece on a “do it yourself” news page.
  • Post your launch information on your Facebook page. If possible, make sure there is a graphic in it to grab attention, or link to your survey page so that it will show the image on Facebook.
  • Post your launch information or Press Release on Twitter.
  • Send a Constant Contact (or other email client) message about the launch to your members.
  • Post your launch information in all of your forums, listservs, and groups.

Post-Launch Continuous Outreach

Your continued outreach will involve messaging to your members and others on a regular basis through a number of means, depending upon your ability. You will develop a specific plan for your own organization. Below are ideas for outreach to community members and non-members. These are meant to help you to think about what you might do, but are not meant to be directive.

Frequency and reach are important for grabbing the attention of possible participants. You will need to spend time on outreach every week for the number of weeks you are trying to get people to take 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.
  • 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: Click 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 (eg 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.
  • Consider using other types of digital media.
    • If you are really ambitious, consider creating a podcast that you can use for many different purposes. Here is information about how to do that: 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. These are usually charged 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: 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, 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. Here is an 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.

Documenting Your Outreach

We have created an Excel spreadsheet with which you can document your reach and conversions. You can keep track of the number of impressions you make and your conversions to help you to understand what messaging is (or is not) working.

  • Impressions are the numbers of people reached by each method of outreach you use.
  • Conversion refers to converting the people you reach (the people who receive your message) to participants in your registry (people who hear and act on your message). To understand your conversion numbers, you need to know both how many people are starting the survey, but also how many people received your message.

You can create referral codes to track where individuals visiting your registry are coming from, and to see which sources provide the most individuals who start or complete a survey. This number – the number of participants who start or complete a survey – is one of the numbers you’ll need to understand your conversion rate.

You can create referral codes for each method of outreach using PEER if you want to: they’re available for both paper and electronic outreach. This means you can calculate not only your conversion rate as a whole, but for specific types of outreach, or even for specific outreach posts or campaigns.


To calculate your conversion rate, you also need to be able to track your impressions. For this, you’ll need to resort to forms of tracking outside of PEER.

Social Media-Specific Tracking

  • Use TweetReachto track hashtags in tweets.
  • On Twitter, count your retweets and see how many people were reached through other Twitter accounts, using the number of followers they have as an approximation.
  • Approximate the number of members who receive your posts or messages on Facebook according to how many likes you have on your page. It’s likely the actual number is a little lower, since not everyone will always see your posts in their feed,, but this is still a good approximation.
  • Similarly, you can count the number of likes a partner page has on Facebook to gain an idea of how many people were reached by a partner post.
  • You can also use Twibbonto track who in your community posts about participating in the registry. Based on their followers, you can approximate the number of people that they reach.

Other Forms Of Impression Tracking

  • Count the number of articles and blog posts written about your project in various newsletters and media outlets and the corresponding number of impressions made. (Be sure to post these articles on Facebook and Twitter when they are published to get the most traction – and so that you have an idea of how many people they reach through you!)
  • Many email clients allow you to track who opens your messages. This can tell you how many people in your listservs (or partners’ listservs) are actually opening your messages.
  • Track website hits. If you don’t already have a method for this, try Google Analytics.
  • Total your webinar attendees.
  • Total the number of people who say they will “attend” your SCHEDULE day.
  • Total the number of people who attend your launch party, or other events.
  • Total the number of attendees at a specific event, or the number of materials you handed out at an event.


So far, we’ve looked at different methods for reaching two types of possible participants: members of your community, and non-members. You should develop a customized approach to messaging for each of these groups (and for each segment of your target audience within them). We have several resources about developing targeted messaging that we’ll be sharing with you in the coming weeks. For now, review the tips below, and keep in mind: while developing targeted messaging is important, that doesn’t mean you should limit the ways you convey your message, either. For instance, you might choose to explore written versus video media; or you might try out two ways of conveying the same message (take the survey and participate in research for the good of the community) to one audience – appeals to the “big picture” about the importance of everyone participating, versus sharing a personal story from someone in the community about the need for this information. As you continue to track your outreach progress, you’ll gradually hone in on what does and does not catch the attention of your community.

Tips For Developing Messaging

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).


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.

Track Effective Message Times

You can measure which messages resonate with your members by keeping track of how many surveys were completed after you sent out a particular message, in a particular way. Use the tracking sheet in the outreach folder to do this, together with referral codes. By tracking your success with themes you can easily see what is motivating your members.

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 some, make a list of themes you want to have in your messaging for your project. For example: 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 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.”

Overcoming Barriers

Some people can struggle with technology or may have questions while they are completing the survey. Develop ways to answer their questions in advance, 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

Anticipate “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 this project. 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 benefitted 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

Sample Outreach Plan

Utilizing the ideas above and others that you may think of, your outreach plan will look something like our example. You can use this worksheet together with the template outreach plan provided as part of the IRB application.

Example Outreach Plan
Outreach Plan Template