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WEBINAR RECAP: The Epilepsy Life: Taking Control

Are you a patient or caregiver of someone experiencing seizures? Whitney Petit, a patient leader of the Epilepsy community, is offering tips & insights on taking back control of your life. Learn how to identify possible triggers & what kinds of self-care can prevent future seizures. Whitney will offer her personal tips and the right questions you should be asking your doctor.

 

WEBINAR RECAP

  • Are you considering the possible triggers around you? Whitney found she was affected by apples and grapes, common seizure triggers found in cats and dogs!
  • Are you getting enough sleep? Whitney suggests tracking your sleep activity with a FitBit to help you identify any connections between sleep patterns and seizures.
  • Do you like your doctor? Whitney reminds us you must find the right fit. Just because everyone you know loves your doctor doesn’t mean you need to love them! Be your own advocate and take control to find a doctor you feel confident with.

 


Whitney is a long time Patient Leader and Blogger in the Epilepsy community. She uses her journey with epilepsy to help and motivate others to practice self-care, better navigate the world of healthcare and live a fulfilled life with any chronic illness. There is life beyond the diagnosis.

Be sure to check out her website, CF-Epilepsy.com & Social Networks: Twitter , Instagram, and Facebook.

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 community@wegohealth.com.

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 community@wegohealth.com 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.

Starting a Blog 101

One of the most important tools for a patient leader is having their own website or blog. For many patient leaders, their website/blog are one in the same. This is the place where they share their story, the place where they connect with other patients and caregivers, and keep the world updated with the advocacy work that they’re doing. Your blog/website is really the deep dive into who you are and why you tell your story.

The problem is that there are SO many different options when it comes to starting a blog that it can be very overwhelming. With this blog post, we’re hoping to make this process a little easier for you and get you on the right path to becoming the best patient leader you can be!

Don’t forget to check out our guide to being a patient leader over HERE!

Step One: Choose a Blogging Platform

It turns out that step one is probably the most overwhelming step in this whole process. Make sure to do your research, ask your friends for their recommendations, and don’t be afraid to sign up for 3 or 4 sites to check them out before to launch your blog.

Here are a few different options you can choose from:

WordPress.com

Pros: WordPress.com is a free platform that is very user-friendly. Through WordPress you can set up a blog or a blog/website combination by setting up different pages in addition to your blog. WordPress supports video, image and text posts which means you are not limited to the types of information you post for your readers. For a small fee, you can set up a custom domain through WordPress. Instead of your website URL being thisismywebsite.wordpress.com it would be thisismywebsite.com. WordPress also has a free and easy to use mobile app.

Cons: WordPress.com is very limiting when it comes to customization. If you’re looking for complete freedom over the look and feel of your website, you’ll need to register through wordpress.org, which means you’ll also need to buy a hosting package and a domain. This is a much more advanced option, so if you’re starting out, it is probably best to just stick with WordPress.com

Tumblr

Pros: Tumblr is what is referred to as a microblogging site. This means the content tends to be shorter than the posts of a traditional blog. You can post on your own board, follow other bloggers, or search posts by keywords. Tumblr lets bloggers post various content, such as text, photos, pictures, music, videos, links and more. Posted content can be original or re-posted from others’ boards. The reposting feature is what makes Tumblr unique from other blogging platforms. If you’re tech savvy and know how to code, Tumblr is also free to customize, which is a huge perk if you have that skill set. You can also set up a custom domain to direct to your Tumblr site as well.

Cons: Most people use usernames on Tumblr which makes individuals often hard to find. Many bloggers will start their blogs on Tumblr and later switch to other platforms when they discover that Tumblr is pretty limiting in terms of layout, basic customization, and over all blog capabilities. Tumblr is more for sharing others’ content than chronically your own story. So, make sure you’ve picked your blog strategy before you choose a platform.

Blogger.com

Pros: If you already have a Gmail account, Blogger may be a great option for you. It is owned by Google and you can link your account seamlessly. Blogger is probably the most user-friendly blogging platform available, which makes it a great pick for the new bloggers out there. Blogger offers users a dashboard to manage their blog, but it also offers the option to “follow” other blogs and puts them all in a reading list. That way all of your favorite blogs (that are hosted on Blogger) are located in one place! Blogger also offers a really simply drag and drop layout editor which makes customizing the layout of your blog pretty easy. A big perk to a Blogger blog is that you can buy your domain through Google and have it synced up to your blog very easily.

Cons: Blogger is not 100% customizable. If you’re looking for complete control, a platform like WordPress.org is probably your best bet.

 Step Two: Choose a Name For Your Blog and Buy a Domain

Your blog’s name will soon become part of your patient leader identity! It’s important to pick a name that is meaningful to you and one that you’re comfortable being identified by.

It’s also important to think about your other social channels as well. It is worth your time to check to see if Twitter handles and Facebook pages already exist with the name you’ve selected. You want to keep your brand consistent across your different media platforms! So be proactive and do a quick search before you go and register your domain name.

Once you’ve picked your name, you will want to register it as a URL for you blog/website. You can register your URL through tons of different websites like Google, GoDaddy, or Register just to name a few. If you’re going to choose private hosting for your blog, you may want to see if you can purchase your domain through your host to make things easier.

Step Three: Pick An Angle

When considering starting a blog, there are many different angles you can take. After working with many patient leaders, here are three popular choices:

  1. Your Personal Story – You blog is simply an online journal to tell your story. You can chronicle your life, your treatments or anything that related to you and your journey.
  2. A Niche Market – The vast majority of blog are patient stories and these are incredibly valuable resources, but another important type of blog that exists is a niche market blog. Perhaps your blog is about fitness while living with Multiple Sclerosis, or nutrition and diet while living with Inflammatory Bowel Disease. Are you a yoga fanatic with Rheumatoid Arthritis?  These are what we call niche market blog because they have a more specific focus than just a personal blog.
  3. A Combination – Your blog is just that; it is yours. You may want a mish-mosh of topics on your blog, or your focus may change. Feel free to use your blog however you see fit!

Step Four: Your About and Contact Pages

One of the most important parts of your future blog is your About page. It is so incredibly important to include an About page on your site to tell people who you are, your background and why you’re telling your story!

Use your About page to share your accomplishments, where people can find you on the internet and anything that is relevant to your story. On your about page, you may want to also share your contact information. Some blogs have a separate contact page, either location of your contact information is fine as long as you include it! We suggest creating a Gmail account that corresponds to your blog title, to keep your personal email account private. Many blogs also offer contact forms instead of listing your email address. It doesn’t matter how you put your contact information out there, just make sure it’s available!

Ideally you About page should include the following:

  • Your location

  • Contact information

  • What is your diagnosis and when you were diagnosed

  • A section that includes links to posts you’ve made on other websites or for other companies (Don’t be afraid to show off!)
  • And if you’re comfortable with sharing you treatments/medications add those too!

Step Five: Create Supporting Sites

Once you’ve established your blog, you may want to create a Twitter and Facebook Business Page to correspond with your blog. More sites makes the reach of your blog and information much greater and gives you more ways to connect with your audience. Facebook and Twitter are both great places to share your information and also gives your community an easier way to share you blog posts.

A word of caution: Creating these other sites becomes more places to manage and upkeep. Be sure that you have the time to devote to managing multiple sites before you create them. Many patient leaders select a main social channel and focus their attention on that one. Don’t feel like you HAVE to cover all of them. Start with one and see how it goes.

Step Five: Update Regularly

The key to being a top patient leader is consistency.

Patient leaders who regularly update their blogs, post on Facebook and chat on Twitter are the ones that have the most engagement and the biggest following. Patient advocacy is largely a word-of-mouth business. The more you’re out there, the more people will hear from you. And the more you connect with others, the more trust and credibility you’ll build in the community. Try to create a content calendar to help keep you blog updated and to give you ideas for the days when you’re having writer’s block.

Once you’ve completed these steps, don’t forget to join our network (if you haven’t already!) and send us an email with the URL so we can share it with our network! Contact us at community@wegohealth.com.

Happy blogging!


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.

How The FDA Involves Patients and Advocates Replay

As a patient leader, you’re always looking for new opportunities to get your voice heard, right?

Then don’t miss FDA representatives Steve and Andrea give an overview of patient leader opportunities offered by the Office of Health and Constituent Affairs!

FDA: How We Involve Patients and Advocates

Join FDA representatives Steve Morin & Andrea Furia-Helms as they provide an overview of FDA’s Office of Health and Constituent Affairs, patient engagement milestones and programs, and opportunities for how patient advocates can get involved in FDA activities.

  • Learn how to stay up to date with the latest updates and opportunities within FDA Patient Network
  • Review the opportunities within the FDA Patient Representative Program and how you can become one of the 200 Patient Representatives
  • Learn how to participate in FDA Sponsored Public Meetings in person or online

 

Interested in exploring more of the topics discussed in this webinar? Check out the links below for more information:

FDA Patient Representative Program

FDA Patient Network Newsletter

Patient Focused Drug Development

Patient Engagement Advisory Committee 


screen-shot-2016-12-15-at-1-39-01-pmAndrea Furia-Helms joined the FDA’s Office of Health and Constituent Affairs in May 2007 to manage the FDA Patient Representative Program through recruitment and education of patients and primary caregivers who represent varying disease and conditions and prepare them to serve in FDA meetings such as Advisory Committees and product review division meetings. She works across the medical product Centers to ensure patient perspectives are included in the medical product development and review process.
Prior to FDA she was Director of the Back to Sleep Campaign, a public-private partnership to educate communities on Sudden Infant Death Syndrome (SIDS), at the National Institutes of Health, National Institute of Child Health and Human Development, where she developed outreach initiatives for African American, American Indian and Latino communities. Ms. Furia-Helms has a B.A. in psychology from Framingham State University, a B.S. degree in community health education from University of Maryland, and a Master of Public Health from The George Washington University.

 

Sscreen-shot-2016-12-15-at-1-39-14-pmteve L Morin R.N., B.S.N.

CDR United States Public Health Service

Commander (CDR) Steve L. Morin received a Bachelor of Science in Nursing from the University of Southern Maine in December 1997.  Following his graduation, CDR Morin worked as a staff oncology nurse at Maine Medical Center and the National Institutes of Health (NIH) and a research nurse for the National Cancer Institute.

CDR Morin joined the FDA in 2009 and worked in the Office of Surveillance and Epidemiology where he performed Medication Guide and Patient Package Insert reviews for the Patient Labeling & Education Team. Since 2011 he has been in the Office of Health and Constituent Affairs where he works closely with numerous Patients and Patient Advocate Groups in helping them understand the regulatory process, medical product approval process, expanded access, and other topics important to patients. He also assists with the Patient Representative Program, handling telephone and email communications from patients and the public. CDR Morin currently manages the FDA Patient Network that includes the For Patient website, FDA Patient Network Newsletter, @FDA_Patient_Net twitter account.

 

How to Rock Social Media Replay

Missed out on our #HAAwards celebration? This is certainly one webinar you’ll want to rewatch. Join social media consultant Marie Ennis O’Connor as she offers a variety of platform power tips for all social media platforms. Follow along with your own copy of the slide deck here.  

 

How to Rock Social Media

Do you want to grow your social media following? Are you looking to make an impact online? Then this webinar is for you.  You will learn platform power tips for Facebook, Google+, Twitter, LinkedIn, Pinterest, and Instagram including how to  create and curate compelling content others will want to share, build better engagement with your followers, develop a content and social media calendar & more!

Marie is offering so many tips you may not be able to catch them all. Lucky for us, Marie was gracious enough to create a set of notes for anyone watching, find your copy here!

 

 

What You Missed:

  • How do you appear online? What may make people decide to follow you? Marie offers 5 simple tips to help you perfect your social profile!
  • “Meet effort with effort.” A simple but true statement when it comes to engaging with your community. Learn the best strategies to optimize engagement with your followers.
  • Marie offers a wide variety of tools to help your rock social media in no time! She offers tools such as Followerwonk and Listly to build your online community and tools like Hootsuite and Buffer to manage content and scheduling strategies- and that’t just the the beginning!
  • Learn platform power tips such as the do’s and don’ts of live tweeting,  the best way to upload videos on Facebook, the benefits of integrating SlideShare to your LinkedIn & more!

 

This webinar is jam packed so don’t miss out! Implement the strategies Marie offers and we have no doubt you’ll be rocking social media in no time!

 


screen-shot-2016-12-15-at-1-20-53-pmRecently named one of Health IT’s Top 100 global social media influencers, Marie Ennis O’Connor is a social media consultant who specializes in providing services to clients in the healthcare industry. Her work is informed by her passion for embedding the patient voice at the heart of healthcare values.

A Stanford MedX epatient scholar, Marie has worked with both healthcare practitioners and patient advocates and is interested in how both can engage and learn from each other at the level of social media. She writes about the experience of transitioning from breast cancer patient to advocate at Journeying Beyond Breast Cancer.

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