Disrupt for Good: Field notes pt. 1

It’s finally, officially summer, and I am loving the pace, with a more gentle start to our days and breaks built in to read outside. 

Admittedly, it’s largely fiction books in hammocks for me in the summer, so I don’t have much substance to bring you from my reading.

​However, I’ve had some opportunities lately to practice shifting from certainty to curiosity and from activism to organizing, and I thought sharing these stories may help you find spots to try this in your own life. (If you feel like it. I’m not trying to tell you what to do.)

Storytime: From Certainty to Curiosity
In my role with the Network of Rare Blood Disorder Organizations (NRBDO), we’re all about timely and equitable access to treatment and care for people living with rare blood disorders.

One of our member groups recently gained access to a life-saving product (a seven-year slog; Angela at Alpha 1 Canada is a rock star), but they have hit a hiccup because it is distributed through the blood banks, and some are resisting adding this new product, even several months after launch. 
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Now, you may or may not know that Canada’s 80+ blood banks primarily operate out of hospitals, and there is no discernible organization or information-sharing system between them. So, if you are having trouble with a few blood banks, you can’t just go to the chair of a blood bankers association and ask for a meeting because it doesn’t exist.

In the absence of the ability to have a real conversation, the shallow assumption has been made that the blood bankers who aren’t on board are idiots or control freaks or don’t care about patients. 

However, most of the people who run blood banks, along with a bunch of people in other roles in transfusion medicine, belong to the Canadian Society for Transfusion Medicine. So, this year, the NRBDO joined the CSTM, and about a month ago we attended their conference in Saskatoon. 

Angela and I were sitting at the breakfast table on the first day, wondering exactly how we would meet people, when a woman came and sat down across from us. I said, “So…” and she threw her arms out and said, “Saint John, New Brunswick!”

I gasped. “I’m from Hartland, New Brunswick! I live in Ontario now, though,” I said in a thick New Brunswick accent that always comes out instantly in conversations with other NBers. So of course she asked me if I knew a woman she worked with, which I didn’t, but I remembered her ex-husband from high school, and I texted my dad and he knew the woman’s maiden name, and then I did remember her from high school too, and by then this woman at the conference and I were friends. 

It turns out my new friend Clare runs the blood bank in Saint John, and she was very willing, when we asked, to share with us why they had were reluctant to distribute the Alpha 1 product at first (two very reasonable concerns around their scope of practice and legal responsibility, I might add), and how they had worked through it. 

So we’ve invited Clare to share that story at our NRBDO Deliberative Dialogue in Ottawa in November, where we will be talking about the product distribution piece of the timely and equitable access to treatment and care for people with rare blood disorders. 


Her generosity in sharing honestly the concerns and subsequent solutions at her blood bank—rather than being defensive or shutting the conversation down—meant that just a sprinkle of curiosity went a really long way toward understanding each others’ perspectives and helping us as advocates see a path to move things forward in other jurisdictions.

We held our first Deliberative Dialogue last fall, with speakers in the morning and a roundtable discussion across stakeholders in the afternoon. It was really productive as people’s assumptions about other stakeholders’ motives and priorities fell away, and I am hoping for the same this fall as we bring together patients, blood bank managers, Canadian Blood Services, pharma representatives, and prescribing clinicians.

That story was longer than I expected when I started typing, so I’ll stop here for now. Next time I’ll tell you about our Yukon Adventure to gather perspectives from the communities about hepatitis C treatment access. 

Have a great summer, and if you have fun examples of shifting from certainty to curiosity and what happened when you do, I’d love to hear them!