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citizen science

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

By e-patients, healthcare industry, participatory medicine

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

Whither Cochrane, for e-patients and everyone else?

By healthcare industry
Image from Twitter user @Rasha_Fadlallah

This will be the third, and last, in my short series on attending the Cochrane Colloquium in Edinburgh in September of this year. In the first post, I talked about what that conference was like; in the second, I shared an overview of Cochrane as a global movement to make medical evidence work better for clinicians, patients, and communities around the world. This last one will talk about some of the issues Cochrane is facing, as an organization and as a proponent of science in a world that seems to have a rising suspicion of science and research.

I watched the Cochrane Colloquium open not just with a welcome to Edinburgh – although there was that, in spades – but with a behind-the-scenes PR flame war that wound up sucking up the the headline space for Cochrane that week, and in the weeks since. I talked about it in my podcast the following week, and have watched the conversation go by since my first day on the ground at the Edinburgh International Convention Center. The short-snort version of what happened is this:

  • On September 14, the Friday before the Cochrane Colloquium was to kick off (on Sunday the 16th), a letter went up on the Cochrane Nordic Center site’s News page from Dr. Peter Gøtzsche, wherein he announced that he had been expelled from the Cochrane governing board by a slim majority vote by that board. He cast it as a moral crisis, caused by Cochrane’s too-chummy relationship with the pharmaceutical industry. That letter has since disappeared from the Cochrane Nordic pages, the link is to a PDF on the Mad In America site.
  • Cochrane itself stayed silent for 24 hours, putting up its response to Gøtzsche’s letter late on Saturday, referencing only an independent review of “complaints related to the conduct of a Member” and saying that they would comment further only when the review was complete (confusing, right?).
  • Throughout the Colloquium, conversations went on everywhere but on the platform about this letter, the expulsion of Gøtzsche from Cochrane’s governing body, and what the reasons for same might be. There seemed to be no real detail on “reasons” beyond “behavior,” which behavior was never specifically defined.
  • This took over the entire agenda of the Cochrane Annual General Meeting at the Colloquium, bumping the report from the Cochrane Consumer Network, and other agenda items. Image in this post is from a Cochrane AGM attendee during the meeting.
  • Conversations about this appeared in mainstream media, including the Boston Globe’s STAT News, “Turmoil erupts over expulsion of member from leading evidence-based medicine group“; in the journal Nature, “Mass resignation guts board of prestigious Cochrane Collaboration“; in the BMJ blog, “Trish Greenhalgh: The Cochrane Collaboration—what crisis?” (note: I find this post by Trish Greenhalgh to be the most even-handed of the ones linked so far).
  • Hilda Bastian, a scientist, writer, and cartoonist, put up a great piece on her PLOSOne blog, “Boilover: The Cochrane HPV Vaccine Fire Isn’t Really About the Evidence – but it’s Critical to Science” that captures the issue well, with the bonus of visuals.

I’m a professional communicator, so I’m amazed that Cochrane let the guy they were drop-kicking get the story out first. That’s PR 101 – s/he who gets the story out first owns the narrative. When the drop-kickee got the first announcement out, Cochrane was left in damage control mode, with neither side fleshing out any of the details regarding the “behavior” that led to the drop-kick. The social exhaust of that damage control continues to waft across the landscape. Cochrane will most certainly survive, and I hope that they learned from this series of unfortunate events. Crisis communications planning is totally a thing – a thing I recommend every organization and enterprise get savvy to.

My point? Science is as messy a business as any other human endeavor. As soon as you think you’ve got your hands, and your mind, wrapped around something … it squirrels away, and changes the entire question. Add human behavior and emotion, and stuff can flame up quickly.

Here’s my suggestion: Cochrane needs more ground-level troops – the ones called “patients,” or “citizen scientists,” or just “people” – to participate in the scientific inquiry that forms the body of their work. This is true across all scientific fields, but it’s particularly true in medical science. Human health and care is the ultimate purpose of all medical research, which means that having people/patients included in that work is critical. Much of the “science denial” hooey behind stuff like the anti-vaxx movement and the silliness that is anything Mehmet Oz says, or Gwyneth Paltrow ditto, is rooted in the giant castle walls that have separated people from Important Work In Science with paywalls, and the mindset that said “doctor knows best” when it came to medical practice. But those castle walls are being stormed on the regular since the democratization of knowledge and access to information that arrived when Tim Berners-Lee came up with the World Wide Web at CERN back in 1989.

Medical science is threaded through with uncertainty. Intuition, hypothesis, testing that hypothesis, analyzing results … lather, rinse, repeat. Getting citizen scientists and front line clinicians involved in the creation, analysis, and compilation of the science that informs how humans get and/or stay healthy is a civil/human rights issue, as well as an acceleration-of-discovery play. Paternalism can’t run the table any more. There also has to be an ongoing, robust discussion of that science: is it trustworthy, who paid for it, how much implicit bias was either included or removed, how can population-level science intersect with n-of-1 precision medicine, the 21st century medical science unicorn? Everybody in, nobody out, bring on the inevitable arguments. Scientific papers are basically arguments – don’t be afraid of conflict, from conflict can come consensus, alignment, and progress. Participatory science, it can totally be a thing.

Whither Cochrane? I think it’s up to us, the citizens of the world who care about making healthcare better for everyone. Let’s get to work.

This post originally appeared on the Society for Participatory Medicine blog