Heidi Gardner is a clinical trials methodologist at the University of Aberdeen in Scotland, working on making randomized controlled trials, called RCTs, more understandable, accessible, and, well, fun, for people to be involved in.
Since RCTs are the gold standard in finding out what works, and what doesn’t, in medical science and practice, they’re SUPER important. But not enough people sign up for them. So getting more peeps excited about practicing, and participating, in science by joining in the randomized controlled trials party is important stuff. And it’s what Heidi Gardner does all day.
Here’s our conversation.
Randomized controlled trials explainer (from The Conversation)
Cochrane recruitment guide (link is to full training handbook)
James Lind and the first clinical trial in 1747 (spoiler alert: the scourge of scurvy!)
Trial Forge, the project that Heidi is working on
Heidi’s profile on the University of Aberdeen’s site
Both photos in this post are from University of Aberdeen public engagement events - check out James Lind in all his 18th century finery, being helpful AF for science!
THIS WEEK’S RANT!
Springboarding off my conversation with Heidi Gardner about getting folks fired up about participating in medical research by getting researchers fired up about - and trained TO - talking to actual human persons about how to participate in science … there’s some awesome, and some “whoa, hold on there” stuff already happening out there in Science Land. Let me break it down for you, in bite-sized snax.
First, I’ll point you at a post by my friend Susannah Fox, who used to be the head of innovation for the US HHS, and is now busy being a savvy thought leader on innovation for the healthcare scene writ large. In a piece she posted on Monday, “Data as an engine of disruption in health care,” she talked about the session she was leading at the Milken Foundation’s Future of Health Summit the following day. Susannah said that her “essential message is that patients and caregivers should be as much a part of the disruption conversation as any other stakeholder,” to which I say HELLZ yes. That post kicked off a lively discussion in the comments - on Susannah’s site, “don’t read the comments!” rules are suspended - which I participated in, carrying my consistent message that “yeah, that health-related data we all create every day is AWESOME, but it’s being weaponized against us by some folks, and a whole lotta folks are making money off my data … CUT US IN on that data gold rush, you dopes!”
On the I’ll Take Awesome Uses of Patients Included Health Data Research for Infinity, Alex front, the Count Me In cancer research project being led by my brainiac friend Dr. Corrie Painter at the Broad Institute is a great example of what Patients Included in research can actually look like in the wild. In this project, funded by the Biden Cancer Initiative, along with some other great research orgs, the mantra and mission is this: “Count Me In projects partner researchers directly with patients who share their samples and clinical information in order to speed important discoveries.”
Here’s why people - the ones called “patients” by the medical industrial complex - really should fight to get ALL their data, all the time: so they can contribute it to projects like Count Me In, or other research initiatives that are working to help people - those patients! - participate in the science that might just save their lives, or the lives of their families and communities. But again I’ll say: if this research leads to a commercial product, like a drug or a device, the people who contributed their data to that product’s development deserve a cut. Even if it’s just getting that drug or device for free, for life - CUT THEM IN.
But, and however, that “share the wealth” mindset is MIA in most commercial drug and medical device development. There’s a rising tide of THERE’S GOLD IN THEM THAR HILLS, um, DATA across the health data landscape. In a piece on The Scientist site earlier this month, “Startups Plan the Health Data Gold Rush,” the brisk trade in our health data that’s been going on for decades gets the curtain pulled back … but not enough of us are paying attention. I’ve been paying attention to this for a while now, and I want everyone to get up right now, and go to the window, open it, stick your head out, and say, “I’m mad as hell, and I’m not going to take this (data thievery) any more!”
Yes, really. They’ll only cut us in if we scream together, loud and long, to make it happen.
Oh, and if you’re an American citizen? Don’t forget to vote on November 6th. End of public service announcement.
‘Merica! It’s a wonderful country! Just don’t get sick!
Danny van Leeuwen, also known as Health Hats - with his diverse and prolific health experience, Danny uses his multiple hats to empower people as they travel toward their best health. To join Danny on that best health journey visit his blog.
The Society for Participatory Medicine - a not-for-profit membership organization devoted to the concept of participatory medicine, where empowered patients engage as drivers of their health, and where providers encourage and collaborate with them as full partners in their care. SPM stimulates dialogue, influences policy, advocates for research, and educates patients, health care professionals, and others. Our members include stakeholders from across the healthcare continuum.
Beyond The Room at #CochraneForAll broadcast session insights live via Twitter, and captured podcast interviews with keynote speakers and attendees to take the ongoing quest for science and evidence in medical treatment beyond the room, and across the globe.
Podcast distribution rights: