patient advocacy

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    A Little About Me

    My name is Tonya. I am a chronic illness warrior and am passionate about advocacy. I love to share my story with anyone who will listen.
    I have been featured on my local news station and interviewer for our newspaper.
    I have numerous conditions such as Gastroparesis (g tube, port, gastric stimulator and on TPN) . I have Primary Immunodeficiency and infuse Hizentra. I have Ehlers Danlos, Autonomic Dysfunction and Mast Cell Activation Syndrome. I have Chronic EBV and had an Acquired Hemaphagocytosis due to being immunocompromised and catching Covid-19 earlier this year. I deal with migraines, hypotension and hypoglycemia as well.
    I'm currently writing for a migraine site and volunteer as an Oley Ambassador.
    My goal is to bring awareness of little known things about my conditions. I am always bringing new information to my doctors. They appreciate it.
    I hope to learn from you all and hopefully, you'll gain insights from me.

    #PatientAdvocacy #chronicillnesswarrior #gastroparesisawareness #GulfWarSyndrome

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    Community Voices

    Talk About It Tuesday: Self-Advocacy

    <p>Talk About It Tuesday: Self-Advocacy</p>
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    How Storytelling Can Help Encourage Patient Engagement as Volunteers

    In many parts of Canada, healthcare organizations are looking for ways to include patient partners or voices. Sometimes this is due to provincial mandates (which sadly can be little more than checking a box). Other times, it’s the result of a true desire to hear (and hopefully include) the patient’s perspective. As a patient advocate, I am often asked how can we get more patients involved as volunteers, committee members or to take our surveys. 1. Personal storytelling. Don’t jump to the end where you want to get the patient’s input on something they may or may not understand. Rather, start w ith telling the story of your organization, program, service, committee, staff, etc. And no, this doesn’t mean producing a boring annual report no one will ever read. I’m talking about telling the stories of how your organization or programs impact people. Many organizations assume people know their mission or vision (which may be from the 1980s and isn’t relevant to the work done today). Staff also incorrectly assume patients and their families understand the work they do, the various programs offered and, most importantly, the impact they have on people’s lives. This assumptio n limits patient engagement. It’s hard to provide input on something you don’t fully understand or appreciate its value. 2. Break it down. Storytelling needs to be done in bite-size pieces. It’s hard to relate or connect with the bigger picture. So start with small, personal stories, slowly building not only knowledge but also an appreciation for the work of your organization. An example is a speech therapy clinic inside of a larger health care organization. Instead of trying to explain the entire clinic in one story (which is often the case), individualize the story. Focus on one client profile (obviously with the client and/or family’s permission). Tell the story of the client’s challenges, the work done in speech therapy and the progress that has been made (highlighting the emotional/personal elements). Looking at the same clinic, you might do a day in the life of the speech language pathologist (SLP) profile. This can be done through video or feature story (such as an interview with the SLP on what a day looks like, highlighting the variety of her work). Over time, through storytelling, you help your patients and families understand the scope of work done. This helps create the ever-important personal connection to your organization. Now, when you need to include patient partners or volunteers, you will be able to tap into a group that has a better understanding of your organization (or you can share articles and videos to educate them). It also helps health care professionals get clear on who they need to hear from (instead of taking any volunteer with a pulse). 3. Share your stories. Don’t just post your stories on your website and assume they will be found. Include them in newsletters, share on social media (yes, this means you need to be active online) and include as a link in follow-up emails with patients. Look for ways to continue to build a relationship with your patients and their families outside of their appointments. Creating and maintaining a Facebook group or page for your organization is a great start. As you start sharing your stories, you will find it easier to recruit patient volunteers. Why? Because by sharing your passion and providing insights into your organization, they will be able to see where they can provide input and, most importantly, how their voice will be heard. So let’s go beyond token patient engagement, and begin building the personal relationships, through storytelling, to truly transform healthcare.