There is always a story behind a story. Here is how I found myself as the first non-health professional Guest Editor of a prestigious peer-reviewed journal.
I was approached by Amanda Bolderston before the pandemic. She asked if I’d like to be the Guest Editor of the special issue of the Journal of Medical Imaging and Radiation Sciences. Amanda is the Editor-in-Chief.
I always triage requests, mostly to stop myself from immediately saying yes out of obligation or because I am flattered to be asked. I’ve fallen for these ruses before. Obligation or flattery are never good reasons to sign onto an opportunity.
Some of the things I usually consider in my triage are:
Is this a ‘fit’ in what I want to do – does it fall into my purpose for work?
What is be expected of me?
Who would I be working with?
Time commitment?
Deadlines?
Number of meetings?
Compensation?
I strongly believe in patient storytelling and amplifying patient voices, so being Guest Editor was a fit for me. I also know Amanda, as we’ve co-authored a paper together and she has a true commitment to authentic engagement. Both her heart and her head believe in it. I also have my own patient experiences – as many cancer patients do – in medical imaging and radiation. I said yes.
Then -- BOOM -- COVID-19 hit. My first video meetings of the pandemic were in April with Amanda and Managing Editor Carly McCuaig to plan for this issue.
My Guest Editor experience ended up being a shining example of patient engagement done right. Really, it was best practice in involving anybody in your work, whether they are a patient or not.
In my opinion, the field of patient engagement has been over professionalized and overly complicated in recent years. Most of it is actually about common sense and simply treating people with respect.
Do unto others as you would have them do unto you. Here’s what Amanda and Carly did really well:
The expectations of my role were detailed – I was to help solicit submissions, and then read, evaluate and help edit them if needed.
My schedule was equally considered when meetings were set up, as was the fact that I live on the west coast, in the Pacific time zone. No meetings were offered at 7 am my time (thank goodness).
The video platform was accessible to me.
I was paid an honorarium, which I greatly appreciated. I did not have to ask for it – it was offered to me and paid in a timely way after I submitted my invoice.
Amanda and Carly kept me in the loop. I never felt as if there was a backchannel of emails that I wasn’t included on.
During meetings, there were pauses so I could add my two cents. Amanda or Carly would often create space for me to ask me what I thought.
They welcomed me as an equal colleague.
I had lots of questions for Carly as we went along, and she answered my questions in a timely and patient way.
In the end, I felt like a valued part of the team. Here is the special issue – an added bonus is that the patient narratives are free and open access. The cover illustration is also by a patient.
That’s what engagement is about: not about treating people with kid gloves, or making assumptions, or excluding folks from conversations or decision-making. It is about giving people choice and treating partners like human beings, just as you would like to be treated.
I’ve written many essays specifically about patient engagement in the past. So many, I have enough words for another book! Here is a smattering of my essays about patient engagement on my old blog.
Interested in sharing patient experiences stories to boost compassion in health care?