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The who, what, when, where, and why of Cochrane

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Cochrane logo – it’s a forest plot!

If you’ve been paying attention, you know that yours truly got the chance to attend the annual Cochrane Colloquium in Edinburgh in September this year, thanks to a travel stipend from SPM, a #PatientsIncluded bursary from Cochrane UK, the hosts of the 2018 Colloquium, and a stipend from the NHS for the #BeyondTheRoom project to help cover the event for the global audience.

And I’m sure there are a good number of you who are still thinking, “That’s great, but what the heck is Cochrane? And how did they get to be the ones running the ‘Hogwarts Sorting Hat’ of global medical evidence?” Forgive me, but I’m a comedy writer, and that breaks through from time to time, no matter how hard I try to stifle it. Anyway, Cochrane is named for a Scottish doctor, Archibald Leman “Archie” Cochrane, who wrote “Effectiveness and Efficiency: Random Reflections on Health Services” (the link will let you download the whole book in PDF) in 1972.

Archie Cochrane advocated for randomized clinical trials (RCTs) for, well, everything – treatments, practice methods, research protocols, an “all of the things” approach, on a loop – which was not how medicine was being practiced under the prevailing “doctor knows best” practice model in place across the globe. “The art of medicine to preserve autonomy, the science of medicine to preserve authority” rules pointed out by many people seeking to make medical science more science than “because it’s how I do things” – those rules have been snarked at by both your correspondent, and Dr. Al Mulley at Dartmouth, among a host of others.

Archie Cochrane influenced the thinking, and practice, of many other clinicians with his thought leadership on practice variation, practice standardization, and the use of RCTs to fine tune medical science. One of the people he influenced was Iain Chalmers, who, in 1993, founded the Cochrane Collaboration in Archie Cochrane’s memory. Here’s a graf from “A brief history of Cochrane”:

“The Cochrane Collaboration was founded in 1993, a year after the establishment of the UK Cochrane Centre in Oxford, UK. The UK Cochrane Centre arose from a vision to extend a ground-breaking programme of work by Iain Chalmers and colleagues in the area of pregnancy and childbirth to the rest of health care. Inspired by Archie Cochrane’s claim that “It is surely a great criticism of our profession that we have not organised a critical summary, by specialty or subspecialty, adapted periodically, of all relevant randomised controlled trials” (Cochrane 1979), Chalmers and colleagues developed the Oxford Database of Perinatal Trials and a series of systematic reviews published in Effective Care in Pregnancy and Childbirth (Chalmers 1989). The database became a regularly updated electronic publication in 1989, developed into Cochrane Pregnancy and Childbirth Database in early 1993, and formed the basis of the broader Cochrane Database of Systematic Reviews (CDSR), launched in 1995. Work on a handbook to support authors of Cochrane Reviews had begun in 1993, and the first version was published in May 1994. Over its first 20 years, Cochrane has grown from an initial group of 77 people from nine countries who met at the first Cochrane Colloquium in Oxford in 1993 to over 31,000 contributors from more than 120 countries in 2015, making it the largest organization involved in this kind of work (Allen 2006; Allen 2007; Allen 2011). Cochrane is now an internationally renowned initiative (Clarke 2005; Green 2005).”

Since 1993 – only 25 years – Cochrane has spread across the globe, with centers on every populated continent:

Cochrane UK (and their Evidently Cochrane blog, which is terrific)

Cochrane Canada

Cochrane Nigeria

Cochrane Australia (also supporting emerging networks in Indonesia and the Philippines)

Cochrane Japan

Cochrane Chile (hosting the Cochrane Colloquium global meeting in 2019 in Santiago)

The above list is just a sampling – and you may notice that there’s somebody missing. Yes, I’m looking at you, USA. The US did have a Cochrane Center home based at Johns Hopkins in Baltimore, but that closed in February 2018. For now, the best we’ve got is the Cochrane US West Center at Oregon Health and Science University in Portland, Oregon. But that’s a story for another blog post.

On the e-patient front, Cochrane has some terrific stuff on tap. They have a vibrant global consumer presence, via the Cochrane Consumer Network, and a ground-breaking new global citizen science project, Cochrane Crowd, where anyone can take part in the research synthesis process. The Crowd platform provides all the training anyone might need to be able to participate in assessing RCTs and studies, after completing it you’ll be ready to go, sifting through studies and trials to separate the good science from the questionable and not-reproducible stuff.

Cochrane popped up on my radar screen sometime in the last decade or so, during the time that I was scrambling to get on top of managing my parents’ care in the last few years of their lives. It came in handy as I was sifting through my decision tree during cancer treatment ten years ago, and as I’ve become more and more interested in killing off quackery and over-, under-, and mis-treatment in medicine in my work as a citizen science activist and ground-level health policy wonk. If you’re interested in the same things, join the party. We’re all in this together, and Cochrane can help us move the needle toward what I call “Goldilocks medicine” – the right treatment for the right patient, at the right time – at a faster rate.

This post originally appeared on the Society for Participatory Medicine blog

#CochraneForAll + #BeyondTheRoom = #PatientsIncluded on blast

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Red Hot Chilli Pipers at the Colloquium | image credit: Simon Williams Photography

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:

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.

Stay tuned!

This post originally appeared on the Society for Participatory Medicine blog

Democratization of knowledge, healthcare edition

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I was lucky enough to be asked to write the foreword to the 3rd edition of Shared Decision Making in Health Care: Achieving evidence-based patient choice, from Oxford University Press. Here’s the text of that forward.

We are at what appears to be a Copernican moment in healthcare, where everything that learned minds thought was true – that the sun revolved around the earth; that miasmas rising from the ground, or humours contained within the human body, caused disease; that only magical beings called doctors could understand or participate in medical care – is being disproved. Medicine stands at a crossroads unlike any other transformation point in its history. As access to information – what I call the democratization of knowledge – has become as simple as the movement of a human finger, the relationship between doctors and the people they care for has undergone a seismic shift. But like many seismic shifts, it’s happening at a level that only those tuned to pick up the signals from it can sense. That I, a patient voice whose only medical knowledge has been acquired as an autodidact with strong research skills, have been asked to write the foreword to the third edition of Shared Decision Making in Health Care is a strong indication that the earth is moving beneath our feet.

OUP Shared Decision Making 3rd Ed coverThe knowledge exchange that is the bedrock of shared decision making is creating the mutuality that has been missing in medicine, making a full partnership between doctors and the people they care for finally possible. As is made clear in many parts of this book, building literacy on both sides of the equation is a must for shared decisions – information has to be shared with people in ways they can understand, which makes solid communication skills a must for both patients and anyone in clinical practice. This is true in medical research as well, as the need to understand what people actually want from medicine becomes part of the research process. And the people who look to healthcare for their needs – which is all of humanity – must have a full voice in saying what the value is in the care they choose to receive.

Getting to that place of mutuality is still a big challenge for the healthcare system, though. The practice variation so well illustrated by the Dartmouth Atlas remains a roadblock, as does the lingering paternalism embedded within medicine itself. Co-creation of anything – from dinner to a decision about cancer treatment – requires all involved to be present, and equal, in the task at hand. That’s a particular problem for underserved or disadvantaged patient communities, and in the factory model that healthcare has become for much of the clinical side, of healthcare delivery.

So what’s a patient, or a doctor, to do? The most powerful force in healthcare system transformation is yet to be fully unleashed, but the shared decision making approach so thoroughly explored in this book could cry havoc, and unleash the dogs of full partnership. Because if people, and the medical professionals who care for them, actually form an ongoing partnership, “system transformation” will happen without the need for yet another million dollar blue ribbon panel convened in service of answering that thorny “what do patients want?” question.

Technology holds much promise for enabling and accelerating this partnership, but it also presents hazards moral and practical. How can we help someone understand their medical condition if they can’t read? How do we make informed choice a reality, and not just a radio button on an iPad screen? How can we ensure that the technology systems deployed to help us manage care don’t become our robot overlords? I see shared decision making – both science of and practice of – as the clinical pathway to resolving those questions, and to unlocking humanity’s full potential.

If that sounds like hyperbole, I invite you to envision a world where people, and the medical professionals who help them work toward their health goals, are fully engaged with each other in that work. That would create a landscape where people would feel empowered to live their lives to the fullest. Sure, chronic conditions would still exist. Cancer would still be with us. No one gets out of here alive, but being able to live to the full extent of whatever one’s gifts, and one’s time, are is a gift in and of itself. Which would in turn yield gifts in the way of productivity, creativity, and community on a global scale.

Homo medicus, meet homo sapiens. Partnership is not only possible; it’s essential if we are, as a species, to unlock our full potential. Starting with one of the most trust-imbued of human relationships – that of patient and doctor – and strengthening it through the mutuality of shared decision making, who knows what we could bring forth into the world? Let’s work together to find out.