A while back, I was at a follow-up cancer appointment talking to an oncology resident in the clinic room. We were chatting about the patient experience, and I mentioned I was writing a book.
He said to me: “I’m so glad you are writing that. They won’t listen to us residents. Maybe they will listen to you.”
I almost laughed out loud. No, they don’t listen to me. Then I felt rather hopeless. If a senior resident doesn’t feel listened to by policy-makers and administrators, what hope is there for powerless patients to influence positive change in health care? (Spoiler: the only hope is if we advocate for change together).
There are all sorts of 'getting loud' that needs to happen in health care. There is no change if we all stay quiet. Status quo thrives on complacency.
Now that the pandemic has thrust health care into the public eye, we can conclude now that our health care system needs dismantling. It is terribly broken and does not work for many patients, families, staff and physicians.
Unfortunately, the burden of speaking up and advocating is often placed firmly on the shoulders of patients. Here we are, sick, suffering, in pain, traumatized by how we are treated… and we are expected to advocate for ourselves at the point of care and for big system change.
This is too much to ask. We can’t do this alone. We need health care professionals to join us. If you can't join us in an overly public way, please be our allies.
Here are thirteen ways health professionals can be an ally for patients. Some of it is indirect action, like supporting us to speak up at the bedside or clinic room. Some of it is about being our ally in bigger system change, in formal patient advocacy campaigns that are led by patients, like Ready for My Shot (which I co-pilot), CF's Get Loud or Greg's Wings.
Thirteen Ways To Be a Patient Ally
At point of care:
1. Help us feel strong, confident and experts of our own health. This means not devastating us with a poorly disclosed diagnosis. It means believing us and not minimizing our concerns. Validate us so we feel seen and heard without judgement.
2. Create safe spaces for patients to be honest and speak up. This has to do with building therapeutic relationships that are based on mutual trust.
3. Help us speak up in health settings. Encourage us to write down questions, ask most our important question first and share what matters to us. Use strategies like giving us a pen and paper to write down questions. Ask, ‘what questions do you have?’ as opposed to ‘do you have any questions.’ Wait a full ten seconds for an answer instead of rushing out the door. This helps us patients practice advocating for ourselves.
4. Engage in active listening and try not to shut us down with quick fixes. Sometimes we can figure out solutions ourselves if people just give us the space to talk things through. Listen to understand and relate, not fix. You don't always have to advocate FOR us - many times we just need guidance and strength to advocate for ourselves.
5. Help us rehearse telling our own story by encouraging us to share stories of what our lives are like and how our illness has affected us. Telling our story helps make sense of random events and gives us confidence that what has happened to us matters.
6. Invite patients and families to present at staff orientation, speak to health faculty students, participate in Grand Rounds or other professional development events. As a bonus, if you co-present with us, that models partnership! (See the photo of Dr. Robert Maunder and me above. Dr. Maunder is a champion of the patient voice. He arranged for me to talk about compassion in health care at his hospital's Grand Rounds in February 2020).
7. If you hear a patient story – at point of care, or in your organization – go beyond being a passive listener and do something! Think of what your take-away is from the patient story and how you will take action based on the wisdom from that story and apply it to your practice.
8. Foster connections between patients in the way that you can. It makes us strong to have peer support and to know we aren’t alone.
In the public eye:
9. Beyond health organization settings, suggest hiring patient speakers for health conferences or workshops.
If you are involved with publications, offer to bring in guest editors who are patients and/or publish patient stories. There are lots of great examples of this in my own circles: The Journal of Medical Imaging and Radiation Sciences had me as a guest editor for their Interpersonal Skills issue and also published a number of patient stories.
Podcasts are hot now: the podcast Gritty Nurse had me on as their first patient speaker last month. Along with Maggie Keresteci and Stephanie Stavros, I was invited by Dr. Naheed Dosani to talk on Healthcare in Canada on Clubhouse. All these opportunities happened because of action from health professional allies.
10. Use your platforms to amplify the patient voice. In Twitter, this goes beyond merely ‘liking’ a tweet – retweet patient content, and even better, quote-tweet patient stories and wisdom to overtly show your support.
11. When patients organize advocacy efforts, support them publicly in social media or in the mainstream media if you can. Offer to help be a spokesperson from your professional perspective.
12. If you are unable to speak up publicly, be a supporter behind-the-scenes (I call these people secret angels - I must recognize Dr. Yona Lunsky as one of the secret angels behind the Ready for My Shot campaign). Cheerlead. Share research articles relevant to their cause. Connect people up with media contacts and other advocates.
13. Do your own small-scale-but-important advocacy as a citizen, which can include signing petitions or writing to your government representative.
Every small action helps. There is no way us powerless patients can influence change health care on our own. Imagine the collective advocacy power we would have if patients and health professionals joined up?
Together we would be a force to be reckoned with.
Interested in family and patient stories that boost compassion in health care?