This series of 4 essays was originally posted on LinkedIn, based on my Levels of Advocacy diagram for patient and family advocates.
A. I'm A Difficult Mom (At Point of Care + 'Complaints' Process Levels)
This is the first in a series about patient and family advocacy in health care.
I’ve been asked by patients and families who have experienced harm in health care – how do I share my story to educate health professionals so the harm doesn’t happen to someone else?
First of all, in my ideal re-imagined world, patient stories would be seen as a gift to provide feedback to staff. Our stories would be applied to patient safety and quality improvement initiatives to trigger bigger system change. Sadly, many patient stories are met with hostility and defensiveness in health care settings.
There are many possible routes for patients to share their experiences. Our experiences often come in the form of stories, which can be adapted for education and quality improvement purposes. I will forever be putting the word 'complaint' in quotes. Patient stories, even difficult ones, are constructive feedback for staff.
Here are my thoughts about the first two bottom levels from this six-level diagram – At Point of Care and 'Complaints' Process. Generally, advocates start at the bottom and work their way up this pyramid, but every advocacy journey is different.
1. At Point of Care – I’ve written an entire book about patient and caregiver experience in health care, which includes chapters about the concept of speaking up at point of care. Yes, ideally, point of care is where troubles are nipped in the bud. But there are good reasons that patient issues are unresolved and get escalated from here.
The reasons have to do with the stark power imbalance between patients and clinicians. The answer to ‘will my care be comprised’ if you speak up is – ‘It might.’ Point of care is not always a safe space to give constructive feedback. If it was, imagine how health care could be transformed with patient feedback. But that's me with my blue sky thinking again.
To understand why patients can’t speak up in health care settings, please read this essay called I’m a Difficult Mom.
2. 'Complaints' Process Contact with patient relations or hospital management often comes from dissatisfaction with the result of an escalation at point of care. The patient relations pamphlet tells us to talk to the person involved and if you don’t get a satisfactory response, speak to their manager and then patient relations.
I’ve always hoped that feedback shared this way is disseminated throughout the organization, but in my world, this rarely happens. I’ll be honest here – I’ve tried the official route and have mostly been met with barriers and outright hostility.
Patient relations staff are not independent mediators. They work for the system. In my experience, their job is to squash any feedback that isn’t positive by ignoring, minimizing and dismissing patient experiences. In fact, the patient relations process can cause as much or more harm than the initial event. (My caveat is that there are of course some good patient relations people out there. My hope is that you are lucky enough to find them).
If you are in the UK or Australia (and coming up soon, in Alberta), you might be fortunate enough to access Care Opinion – an anonymous online space for patients to safely share stories to inspire health care change.
There ARE ways to create safe spaces for patients to share stories...if there's a will, there's a way.
B. Committees, Councils, Conference Speaking...I've Done 'Em All (Organizational Engagement Level)
This is the second in a series about patient and family advocacy in health care. This essay is about patients and families advocating for health system change at the organizational level.
I first joined a family council for a pediatric rehab hospital twenty years ago. My young son was in an early intervention class and I attended a family support group while he was in the program. The hospital was just starting up a family council and I was recruited to join by a social worker.
This was an important step in my advocacy. I had moved beyond giving feedback at point of care or through surveys and wanted to contribute my ideas more widely to help motivate greater change at the hospital. That’s where my organizational engagement began.
I joke that since then, I’ve joined every council, committee and group that exists for families of children with disabilities and (more recently) breast cancer patients.
Engagement has been a roller-coaster ride for me. I wrote a disillusioned post about being engaged in 2019. Now I devote my energy instead to consulting with health organizations about best practice in patient engagement – including assessing their patient engagement efforts, supporting them to start their own patient committees and guiding them to create safe spaces for patient storytellers.
Talkin' About Organizational Engagement
This essay is about the light blue level in this pyramid of advocacy. Here are some examples of where patient advocates can link up with organizations to work towards health system change.
1. Partnering Informally Together with Professionals. I’ve had luck co-presenting my experiences with clinicians who work inside the health system. This route works if you have previously established relationships with staff who are willing to be allies with you.
For instance, I co-presented with my son’s pediatrician at Perinatal Rounds about best practice in disclosing a Down syndrome diagnosis. I shared the stage with my son’s Down Syndrome Clinic Nurse Coordinator to educate about the value of peer support.
It is helpful to find a friendly professional from the inside to help you bring your issue forward. Working with those in the system also helps you find an audience with staff – speaking to medical students, at Grand Rounds, orientation, etc. The folks who work in Quality Improvement and Patient Safety might take an interest in your story too, although to be truthful, I haven't had a lot of success there. Another option to partner is finding a professional who will co-author an article or essay with you.
2. Joining committees or councils as a patient representative is a way to meet administrators, educators, clinicians or researchers dedicated to patient partnership and quality improvement. When I worked a children’s hospital as their family centred care consultant, our council worked on both strategy and practical initiatives like coaching families to speak at nursing orientation, installing white boards at the bedside to help with communication and lobbying to give families and youth access to the hospital WIFI.
Excitingly, post-secondary health faculties and research + health information organizations have been opening up to the idea of partnering with patients too.
3. Speaking at health conferences or events – Sometimes health conferences are looking for patient speakers - mostly for panels or break-out sessions, but sometimes for plenary (keynote) spots. Finding these spots is not easy, as they are still rare beasts!
I’ve spoken at many conferences and have much to say about both finding speaking spots, crafting your story and best practice for engaging and supporting patients at speaking opportunities.
Have I made a dent in the health care universe doing this organizational work?
I actually will never really know, as one of the problems with patient engagement is that we rarely get direct feedback on if we made a positive difference. I try to take the long view, as all I’ve got are anecdotes and metaphors. I’m planting seeds along with other health care advocates like you. Will we ever see positive change? Maybe not in our lifetimes, but I still hang tightly onto a glimmer of cautious hope that keeps me going.
C. Going Rogue: Sharing Your Health Care Stories Publicly (Media Stories level of the diagram).
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.
E-Magazines
Websites
Blogs
Books
Journals
Podcasts
Newspapers
Research Websites
D. The Final Straw (Political + Legal Action levels).
This is the last in my series of articles sharing stories about the levels of advocacy in health care. I obviously love talking about patient advocacy and am happy to present about this topic to patient groups....
This article is about the top two levels: Political Action and Legal. Being at the top of the pyramid doesn’t mean these levels are the most important. It just means that patients end up undertaking this type of action when they have exhausted all other routes. Political action can also be directed at policy makers for strategic issues. And going the legal route is generally the last resort when rights have been violated, or discrimination or harm has occurred.
Political Action – This includes fun stuff like letter-writing campaigns and phone calls to your local government official and/or Health Minister. Now, I used to work at a Department of Health and citizen letters got top priority to get answered. Sadly, this was 30 years ago and today there seems to be no mandate for bureaucrats to even answer patient correspondence.
I’ve been involved with two health advocacy political campaigns. One was called All Kids Deserve Health Services, where we managed to get a question asked in the provincial legislature that prevented the closure of our children's Down Syndrome Medical Clinic. That campaign included a website, social media accounts, media coverage and a petition.
My husband and I ran the Ready for My Shot campaign that my husband in 2021. This campaign contained many elements, including our son Aaron posing a question to the Health Minister about why disabled people weren’t prioritized for COVID shots at a CBC Town Hall. The first part of this campaign was a political one, aimed at Canada's provincial Public Health Officers and Health Ministers. The second phase was educational, to encourage folks to get vaccinated. It included submissions by self-advocates, social media, a poster, a video and media interviews.
Eventually everybody was offered the first COVID vaccine, including people with intellectual disabilities. So did Ready for My Shot move the needle on prioritizing people who were intellectually disabled? Since we will never know what goes on the heads of policy makers, I don’t know. I do know that this campaign provided an outlet for self-advocates to speak up for their right to health care. This is an important outcome.
I’ve never been successful in the legal route. We did file a Human Rights Complaint for the Ready for My Shot campaign, citing discrimination in excluding people with intellectual disabilities for the initial COVID vaccines. The process was so long and onerous, and we didn’t have the money to hire our own lawyers, so we withdrew the complaint. I realized the human rights complaint process is build so people give up and go away.
Legal is an area I don’t know much about. But I do know of families who have engaged lawyers in the disability world. Health care professionals and organizations are already all lawyered up. For lay-people who take the legal path, it takes years and thousands of dollars. (Irony alert: time and money is in short supply for people who are sick or caregiving).
Final Words
No matter what level of advocacy that you engage with, the first step is to write down what happened with your health care experience. It is helpful to be clear about what action you want from the parties in question. What do you want them to do so what happened to you doesn’t happen to other patients? What is their take-away action? It is also helpful to find a community of folks who have experienced similar issues - this peer support is really important in high-stakes, high-pressure work like political or legal action.
The system puts so many barriers in place for us to even share stories and feedback that patients and caregivers just give up and go away. This is by design.
If you are in a place where your emotional and physical health allows you to dig and lobby to find audiences where you share your experience, there’s a chance that your story can influence (desperately needed) health care change. I say there's a chance because we never really know what effect our stories have.
But breaking the silence that the health system imposes on patients (and staff too, but that's another topic for another day) is a good place to start. There's a huge spectrum of types of advocacy, from talking to your nurse at point of care, or writing in your journal about your story, all the way to speaking at a rally or going to court and everything in between.
You can be quiet or loud. We need it all.
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