Going Rogue - Sharing Your Health Care Stories Publicly
This is the third in a series written for folks who are advocating for positive change in health care. This is about sharing your health care stories on public platforms.
Poor health care experiences thrive in secrecy. I hold out hope that change will happen when patients and families speak up about their experiences. ??
?Our stories are our truth and we can tell them anytime and anywhere we want to. We own our stories and you get to decide what parts of it you want to share or not share. Speaking up publicly is not mandatory.?This essay is for patient and families considering going the route of sharing stories online or through conventional media.
Going back to the Advocacy Levels, here are my thoughts the orange level – taking your advocacy efforts to the public through various forms of public platforms.
Media can take many forms:
Social Media – Posts on Twitter, Facebook, LinkedIn, Instagram, TikTok, etc etc.
Websites – either your own website (Wix or Wordpress are user-friendly website builders) or online platforms like Medium, Substack or Patreon.
Mainstream Media – news outlets, radio shows, newspapers, magazines, podcasts.
Health Care Media – academic journals, hospital foundation promotion materials, websites or magazines published by health organizations.
Patient-Led Media – I’m thrilled to see patient-led platforms popping up, in the form of websites or e-newletters or e-magazines.
Books – write your own book (yes, I can talk about that too – just DM me) or be interviewed or contribute a chapter to an anthology about health care.
More on Media
Sharing Your Story on a Blog or Social Media.?I’ve posted?essays?about experience on my own website and shared my writing on social media. This means going public. Hell, I’ve even written?a book?about my patient and caregiver experiences.
Building your own website and having a spot to publish your own experiences is a great way to start to practice telling your stories. You can control what you want to say, and best of all – no rejection letters from editors or being at the mercy of publications accepting your pitch.
Going public is not for the faint of heart as it involves sharing vulnerable experiences. But if you harness your own platforms, your experiences will see the light of day because you have control of what you share.
Going to the mainstream media?is a later resort for me. To be honest, it is tough to find publications that are open to disability or patient stories. But this might work if there’s a friendly journalist in your area (community papers or radio shows are a good place to start). Some newspapers accept?op-ed?ideas from laypeople too.
Talking to journalists in mainstream media does mean giving up some control of your story. I’ve written health stories as a freelance writer, and I can honestly tell you that all writers have an ‘agenda’ when they speak to you. This comes in the form of the angle of the story.
It is key to only talk to journalists you trust. If you are considering going to mainstream media, look at the writer’s other articles. Think about the bias the publication has (for instance, I turn down requests from right-wing talk radio, because that isn’t my thing). Ask if you can see a copy of the article or at least your quotes before publication (this isn’t always possible, but it doesn’t hurt to ask). Say no if you are uncomfortable. Be picky!
?Don’t Read the Comments – Maybe…
?I’ve been criticized as being self-promoting. But if you write or speak about your health care experiences to encourage health system change, but don’t tell anybody about it, well, what’s the point unless someone sees it who has the power to change things?
If you are a Kardashian or some other uber-celebrity, you won't have to self-promote. The rest of us regular folks do!
Whiner, hysterical mother, stop complaining, at least you don’t have to pay for it, etc, etc – I’ve heard it all. If you dare have constructive criticism for health care – especially in publicly-funded Canada – you will get backlash for daring to speak up. This sucks. This is hard to ignore, so I’m not going to tell you to ignore the negative comments and trolls. Many successful people in the public eye do not read reviews!? So consider restricting comments to people you follow, moderating comments, or getting someone else to read comments and passing on the constructive ones to you. Social media and the comments section are full of vitriol. Protect yourself from it the best you can.
Finally, here are some examples of places that accept patient stories. Note: most of these are Canada-based because that’s where I live!? Feel free to add other patient-story-friendly platforms in the comments.
领英推荐
E-Magazines
?Websites
Blogs
Books
Journals
Podcasts
Newspapers
Research Websites
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Next up!? I’ll talk about my experiences taking political action, in (attempting) to making politicians like Health Ministers and their bureaucrats accountable...
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Excellent post Sue Robins! Great messages of encouragement to create a swell of real stories of real people to come forward. Thank you
Healthcare/Patient Engagement | Consultant | Speaker | Writer | Community Partnerships | Content Strategist
9 个月Reading comments is not for the faint of heart!! As you know, Sue Robins ... it depends on the day, but most of the time, once you put your story out there, you never stop dodging shots. For reals.
Healthcare Advocate | Patient Experience Consultant | Marketing & Bus. Dev. Professional | Author | Speaker | TEDx Speaker
9 个月Loving reading these articles Sue! TY for doing this. "Going public is not for the faint of heart as it involves sharing vulnerable experiences." Yes to this. It's like hanging out your dirty laundry for everyone to see. But knowing where your boundaries for discussion are at the same time.
Health System Improvement | Collective Impact | Learning Health Systems | Health Equity | Neuroinclusion
9 个月wildfirecommunity.org