I’ve been an advocate in health care for a long time. I first realized the care was being eroded from health care when I was a student nurse at the tender age of 17. (Spoiler alert, I did not finish my nursing education, got a degree in English instead, but always remained committed to health care in non-clinical roles).
This makes me wise as well as old.
I’ve been struggling to make a living speaking, writing and consulting as a patient advocate for a long time. I'm an author now that I've written two books. Since the beginning of COVID, patient engagement has become increasingly professionalized, with contracts and positions tailored not for people with lived experience, but instead for clinicians and people with graduate degrees.
Recently a hospital - that I had considered a champion in hiring people with lived experience - demanded their staff work full-time and no longer offer part-time positions. Posting full-time positions is a sure-fire way to rid yourself of those pesky people lived experience, as we often need flexible work environments because we are active patients and caregivers.
The truth is that health care visionaries in the world of patient engagement are rare, so the market for people with lived experience is limited. I'm fortunate to have exceptional clients who believe in the value of hiring a person who has lived experience to advise them on their engagement work. I would love to work more in this area and wish my clients weren't so unique.I also do a fair amount of unpaid work, but unpaid work doesn't pay for my groceries, so I own a creative health communications agency with my partner Mike Waddingham at Bird Comm.
Can you imagine a world where patient-friendly, part-time, flexible contract and staff work was offered by health organizations? Where people with lived experience were treated as experts? Where peers ran patient engagement + experience programs? Where power wasn't doled out according to degrees, but by wisdom? Where stories were seen as evidence?
If you can’t make a living in engagement work, this is because the market for our services is small (and shrinking). It isn’t a personal failure. We can’t force people to value the lived experience. We can’t change executive compensation so it’s attached to meaningful patient engagement. We don’t have the power to mandate engagement in health care. I no longer sell people on the patient voice. If they don’t believe in it as demonstrated through their actions, I don’t bother.
What does meaningful engagement look like in action? Avoiding tokenism by being open to co-authoring and co-presenting with patients. Offering compensation to people without them having to ask. Treating patients respectfully before, during and after engagements. Considering constructive feedback without getting defensive -- and then using it to improve the quality of your engagement work.
Alas, as patients rabble-rousing for a brighter future in health care, we can only meet organizations where they are at, not where we want them to be. I’m forever quoting the Serenity Prayer in my work. What is actually in your control?
Here are six calls to action for you, the health care advocate, that you can start on now:
1. Stop accepting engagements unless you are fairly compensated.
2. Boycott orgs who treat patients poorly. If you work with folks who don’t treat you respectfully – and yes, you get to define what respectful means to you - consider that a red flag and leave.
3. Talk to each other about crappy organizations (see #2). Name names. Stop keeping health care’s dark secrets.
4. Have each other’s backs. Recommend each other for work. Don’t hoover up all the work for yourself. Don’t be mean to other advocates. Be gracious instead.
5. Have a clear call to action about the change you want to see in the health care world. For me, it has always been humanity in health care for all. Beat on your drum in whatever way that looks like to you. I beat on my drum through writing because that’s my thing.
6. Organize. Join existing patient groups. Show up to educational events. Seek support groups so you aren’t so alone. If you have the resources and the energy, create your own group or non-profit.
Despite my weariness, I haven’t given up. I’m disillusioned but I am still going because this is my life’s work.
In 2025, I commit to telling the truth about the reality of being a patient advocate. I hope you will join me in reimagining a brave world that values lived experience. There’s room for all of us around our collective kitchen table.
Comments