So, you want to be a Patient Leader?

The WEGO Health team gets a lot of emails from patients and caregivers wondering where to start in order to become a great patient leader and how to get more involved with WEGO Health. We’ve created this guide to help those of you just starting your patient leader journey to get the most out of your advocacy work and your relationship with WEGO Health!

Who does WEGO Health work with?

WEGO Health typically works with patient leaders, which we define as people who are making moves and creating change in their communities. Most often these are bloggers/tweeters/speakers/etc. They are people who have a strong voice in their communities and can show their work or progress through their online platforms. The patient leaders who WEGO Health works with most often are those who can speak to the needs of their entire community. Due to the strong connections they have created through their online networks, this is easy for these leaders! If you’re just starting out, what we need to do is get you on the path to being a patient leader with a strong community behind you! We’re happy to connect you with other leaders in your communities who can help get you on your feet.

 Step One – Join Our Network

The first thing you should do is join our network!  

By joining our network, you are in our system for when we have an opportunity (like a survey, Truvio study or Community Insight Group) that matches your condition area. If we have an opportunity that we think is perfect for you, we will reach out to see if you’re available to participate. Most of these opportunities are paid, so that’s awesome!

It’s important to keep this profile up to date with your most current info so that we can get in contact with you for opportunities, so if any of your information changes be sure to come back and update it.

Step Two – Create and promote your social feeds

Most of our patient leaders have created their networks and communities by using different forms of social media. This is arguably the most important way for you to spread the word of your advocacy work!

If you do not have any social feeds the following are your step two steps:

  1. Start a blog or a website
    • There are TONS of free platforms that you can use to build your blog or a website and there are patient leaders that use all of them! Take a look around and find one that will work best for your needs. For information on starting a blog, check out our Blogging 101 post HERE!
  2. Start a Twitter account and follow WEGO Health
    • There is a MASSIVE community of patient leaders on Twitter. We strongly encourage you to join twitter and use hashtags to find people in your community and start conversations with them. Also, keep an eye out for the #WEGOHealthChats that WEGO Health hosts! An #WEGOHealthChat is a conversation among patient leaders where we discuss issues, questions and information relevant to different condition areas of patient leaders as a whole.
  3. Join preexisting Facebook groups for your condition area or start your own! Make sure to Follow WEGO Health’s Facebook as well.

    • Facebook has turned into a very popular and effective medium to connect patient leaders and caregivers with the people in their communities. We suggest that if you haven’t already, join a Facebook group that is relevant to your condition area to get a feel for what is happening in your community and to start creating relationships with people you can relate to.

Do you have already have a blog? Do you have any blog posts you’d like us to share? Do you have an active Twitter feed that has relevant content? If so, we can help you promote your social feeds by putting them out on our social channels!

Step Three – Stay Connected to WEGO Health

There are a few ways in which you can work with us in the meantime while you create your following.

Blog for us!
If you’d like to write a post for the WEGO Health blog, we’d be happy to have you! We’re looking for great stories about people overcoming obstacles and tackling health activism.  We’re also looking for people to share the nitty gritty of health activism, like how to start a blog, how to use social media for activism, or how to use a hashtag!

Make a Short Video!
Help us tell the world why advocacy is so important! Make a 1-minute video telling us why being a patient leader is so important to you! No need to be fancy, a cellphone video is just fine but film it horizontally, please.

Send Us Your Photo!
Patients and caregivers really love seeing the faces of people who are trying to make change. Send us your photo and a 1-2 sentence bio about who you are and what you’re trying to do. We can use this to feature you on our Instagram and Twitter feeds! Be sure to include important URLs that we can share so patients will know how to get in contact with you.

If you’re interested in ANY of the above opportunities, send us an email and let us know! You can catch us at

Step Four – Reach Out to Us!

After you sign up for our network and build your social following, reach out to us to so we can work on the items in Step Three and keep you involved with WEGO Health!

We hope this guide is helpful!

Remember, we’re here to help you! Email at any time!


Jackie Zimmerman is the Patient Leader Network Manager for WEGO Health. She is also an ulcerative colitis patient and the founder and Executive Director of  Girls With Guts. Since diagnosis, she has been blogging her IBD journey at Blood, Poop, and Tears. Jackie has worked hard to become a strong voice in the patient advocacy community and pays it forward as Social Ambassador of the IBDHealthCentral Facebook page.

4 thoughts on “So, you want to be a Patient Leader?

  1. I’m so happy I saw your tweet about patient leaders- I will get to work on all of the above and will be in contact soon! 🙂

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