I won the big platinum #PatientsIncluded ring (much better than brass) this year with an opportunity to attend the Cochrane Colloquium, the global health science and health services research meeting that happens somewhere on Planet Earth every year. This year it was hosted by Cochrane UK, with the venue in the heart of Edinburgh, one of the best little cities in the world.
Since Cochrane UK was determined to sport the Patients Included badge, they started inviting people/patients from around the world to think about applying for a scholarship (in UK-ese, a bursary) when the starting gun fired in the spring of this year. They have a very effective Twitter presence, so I got pinged early. I volunteered to serve as an abstract reviewer, on the theory that every little bit (of contribution) helps, both for getting great content and demonstrating one’s enthusiasm for the project. When the application process opened, I was ready, and hit the “get a letter of recommendation from a Cochrane research group” daily double when Gordon Guyatt, the father of evidence based medicine in the 20th/21st centuries, and his entire MAGIC team wrote and signed my letter. THAT was a really good day around here!
When word arrived that I had been awarded a scholarship, there was also news that I’d won a couple of bonus rounds on travel assistance – one was a travel stipend from the Society for Participatory Medicine (thanks, guys!), and the other was being selected to be part of the Beyond The Room team for the conference. Here’s what that was about, directly from the Cochrane Colloquium page inviting applications:
“Also new this year is that we’re putting together a team to take the event #BeyondTheRoom. This digital conference service was started in 2016 by André Tomlin from the Mental Elf who saw an opportunity to increase the reach and impact of health events by live tweeting and podcasting from them, to involve people virtually and facilitate a much more democratic conversation. The #BeyondTheRoom team will include André and his colleague Douglas Badenoch, myself and Selena from Cochrane UK, and some new recruits – perhaps it could be you!”
Did someone say … podcast? Since I spent decades working as a broadcasting tech and producer, have produced podcasts for medical societies for the last decade, and started production on my own podcast “Healthcare Is HILARIOUS!” this year, this seemed like a dream gig. And it was. Not only was I able to fire on all cylinders when it came to my skill set, I got to do what I always loved doing while working as a journo all those years in TV news: talk to people doing really interesting stuff, and spread the word about what they’re doing.
For four days in September, my old life (net news producer) and my new life (epatient citizen scientist policy wonk storming the barricades in service of systemic shift) meshed into a perfect little machine.
Here are the pieces I produced, with links to listen and some notes on each one:
- UCLA data scientists Dr. Christine Borgman and Dr. Irene Pasquetto, talking about their keynote presentation “How and why do scientists reuse others’ data to produce new knowledge? Background, Foreground, and Beyond.” This was the first interview I did, on the Saturday pre-conf day, and I felt like a total noob as I only-semi-successfully managed to ask questions that did not make me look/sound like an idiot. Reminded me how important prep reading is for us journos, and how, even with said prep reading, we can be out of our depth pretty quickly. This took me four hours to splice into something satisfactory, which was a valuable reminder/lesson that even old hand journos need to stick to the basics to stay out of the weeds when they’re doing an interview!
- Dorothy Oluoch is a researcher with the KEMRI Wellcome Trust in Nairobi, Kenya. Her keynote at #CochraneForAll packed an emotional punch, sharing her experiences working with women who had newborns in the PICU, and who formed peer support networks to help each other through a tough experience.
- Dr. Dalila Martínez is an epidemiologist, a health researcher, and a patient with a serious condition. She spoke about how those roles have intersected and influenced her professionally and personally in her keynote, about being a doctor caring for tuberculosis patients while dealing with the disease herself.
- Dr. Gregor Smith is Deputy Chief Medical Officer of Scotland. In his keynote, and the podcast, he talks about #RealisticMedicine and the development of a Scotland Atlas, modeled on Jack Wennberg’s Dartmouth Atlas. Gregor Smith on Twitter, and the link to the Scotland Atlas project.
- Dr. Victor Montori is a longtime friend of SPM and its membership, and is working globally to drive a Patient Revolutionfor more careful and kind care. His keynote centered on his message to Cochrane about what real “patients included in research” might look like.
- Lyubov Lytvyn is a PhD student at McMaster University in Hamilton, Ontario, who works on projects that include patients in the research that builds medical evidence. She was one of the facilitators of a session “Consumer involvement in Cochrane – knowledge translation in action” that I would have loved to attend, but I was too busy editing podcasts!
- Jennifer Johannesen gave a keynote titled “The trouble with patient and public involvement (PPI)” (PPI is called patient engagement in the US), which challenged what has become conventional wisdom on patient engagement, or PPI – that simply having patients in the room is the ne plus ultra of community involvement when it comes to including people/patients in research, priority setting, system design, policy making. Jennifer was a bit apprehensive of our interview, and pressed me hard with her perspective that too much patient engagement effort winds up being box checking, institutional back-patting bushwa (my words, not hers). Since I agree with her that most patient engagement winds up being lip service, we got it together. After tripping over my own noob-ness with the first interview I did for this project, having Jennifer come up to me at the reception that night, and thank me for putting together a piece that she felt accurately reflected her core message, made this old news producer/journo very happy.
This is the first of a few posts about my Cochrane experience I’ll be putting up here. The next one will be a what’s-what on Cochrane in general, and all the amazing stuff they’re doing to break/fix that “it takes 17 years for 50% of clinicians to adopt new evidence in practice” thing.
This post originally appeared on the Society for Participatory Medicine blog