#4: Connect Yourself Before You Wreck Yourself
Why alternative medicine gets so much attention; how one physician is engaging patients in designing his new office; curating conversations in research.
Welcome back to Campfire Notebook, where I share blogs, bits and bobs about engaging more people in research and sharing science better.
In Issue 4, I share some thoughts on why alternative medicine gets so much attention, an example of how one physician is engaging patients in designing his new office, and the idea of curating conversations in research.
Found in Translation Blog
Making a Connection
Arguably, the biggest challenge we face in sharing our science and having an impact in our communities is the lack of trust in credible sources. To tackle this problem, continuing to simple share evidence isn’t enough; we need to understand the root cause.
Why is it that some people are willing to accept misinformation over the evidence produced by experts?
As I was thinking back recently to my own path through university, a particular event stands out that highlights one possible cause.
Figuring out your path post-high school is rarely simple - at least, it wasn’t for me. In early 2000, I had already switched degree programs for the following year several times: from the concurrent BA/BSc program I started at UNB, to a BSc in organic chemistry, to a BA in psychology and French. While I felt comfortable with the psychology/French combo, I was still struggling to define the shape of my future path.
It was around this time - a few weeks following the end of our first year of university - that a friend and I weaseled our way into a professional nursing conference at UNB’s Aitken Centre. See, we needed to be there: the keynote address was by Dr. Hunter Adams, also known as Patch Adams. We had both seen the movie in the last year, and now the inspiration for the film was coming.
While I don’t remember the specific words he shared with us that day, I do remember the advocacy that he passionately expressed. Recognizing the diminishing humanity of the system, and the structures it created and imposed on its people, he called for a radical new approach to healthcare - a message that he continues to share to this day. The movie completely ignores the activism central to his work, choosing instead to focus on the more box-office friendly humorous aspects of his service delivery (and indeed, he still does clowning tours to other countries).
I wanted this for myself, and I wanted to be a part of this for others. So when I saw a recruitment advertisement for a Canadian naturopathy school soon after the event, I gave it more than a passing thought.
*Insert record scratch.*
(Okay, remember the part where I said I was struggling with defining my path forward? Plus, it was the millennium; we listened to Prozzak and wore glitter unironically for heaven’s sake.)
I didn’t get far with this train of thought, but when I think of our current challenges to share evidence and have impact with strong evidence, I recalled this brief sojourn into the world of alternative “medicine”. The reasons “why” I explored this option are more telling about my - and perhaps others - needs for our healthcare system, than the “why not”. For me, I was drawn to the school’s and the field of study’s messages of human connection: treating people as a whole rather, than an isolated problematic part.
So it’s easy to see how someone else would equally be attracted to explore its “treatments”. We want healthcare interactions where we are seen and heard as a person, not reduced to an individual piece of us in isolation. We want meaningful connection; a care relationship that addresses fears and anxieties.
If we are going to successfully share and implement good evidence now, we need to acknowledge what others are doing right, regardless of the validity of the content. And where modern western medicine and its systems of delivery have overall downplayed or ignored this essential need, alternative practices easily filled this void, despite being rooted in dubious belief and spurious claims of efficacy. They do a better job at embracing us as people, and not patients with a singular problem.
Arguably, the biggest challenge we face in sharing our science and having an impact in our communities is the lack of trust in credible sources. To tackle this problem, continuing to simple share evidence isn’t enough; we need to understand the root cause.
#HowToDoPtEngagement
It’s not unusual for me to hear that a barrier to doing patient engagement is the perceived difficulty or complication of it all. But it can be so much easier than you think.
In the above tweet, it was asking one question openly on social media, and being prepared to truly listen to the responses. Look at how easy this was, and how rich the thread is! We can all do something like this. What stops us?
(As an aside - how genius are these responses? I mean, a light switch to a bulb outside the exam room door to let the doctor and nurse know when you’ve changed? Yasss.)
#ShareYourScience
I love the phrase “curating a conversation”. Curation is not just selection of materials, but also looking after what has been selected.
To me, curating research as a knowledge translation activity means looking after the results and not letting them sit stagnant on a shelf. In the case of a conversation with a partner, it means looking after the words you choose to share. Are the words understood? Is more information, or support, needed?
How are you curating your research conversations?
Reading Rainbow
As I look to a quieter week to wrap up 2021, I’m looking forward to digging into my bookmarks on Twitter for some “engaging” reads:
When patient ’empowerment’ means doing the heavy lifting
Female heart patients are now being asked to do the heavy lifting that isn’t being adequately done by the medical profession in addressing diagnostic error in women’s heart disease.
Not ‘hard to reach’ but ‘hardly reached’
When Jasjit Singh was researching media portrayals of British Sikhs, he wanted to make sure his research was a true representation of the people whose lives he was talking about. Working with the community then gave him the authority to take the findings forward to influence national and international policy.
Transforming the health research system: Embedding patient engagement in decision-making
Through the research conducted for this thesis we aimed to inspire and support the shift towards a more needs-oriented health research system. By collaboratively changing the research culture, structure and practice, we can create a system that co-produces knowledge that can be used for better health.
Identifying potential barriers and solutions to patient partner compensation (payment) in research
In this paper, we present thoughts and experiences related to barriers to compensating patient partners with the goal of helping individuals identify and find solutions to these obstacles.