Nov
10

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

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The infographic below popped up in my Twitter feed when an e-patient colleague from the multiple sclerosis community tagged me with a “what the HELL is this!?!” … and the excrescence below.

Let me set the scene for you – this is digital collateral from a software company, Medrio, that on its website landing page says it provides “simple, fast, and affordable tools for the collection of data in clinical trials.” It appears that the company is all about the cartoon animals, since they’ve got a cartoon cat in a lab coat welcoming you to their digital litter box domain. It also appears that Medrio is happy to think of clinical trial subjects – you know, the ones called “patients,” or, alternatively, “people” – as sus scrofa. If you don’t speak Latin, that’s the species classification for … PIGS.

This points up a pernicious, perpetual problem in too many precincts in healthcare. People/patients are seen either as dumb – possibly even dumb animals – and treated with the same level of respect. It’s not often, though, that an organization that actually thinks of patients this way fully uncloaks, and shows their wrong-headedness in full color.

OK, you’ve waited long enough. The infographic I’m talking about is pasted below. PLEASE make some very loud noise online, show the world that this jerkbaggery will not stand.

medrio patient-pigs infographic

May
31

Triple aim shoots wide, film at 11?

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triple aim logoPaul Levy, the former CEO of Beth Israel Deaconess Medical Center in Boston, put up a post last week saying that the Triple Aim – improving population health, improving the experience of care, improving per capita healthcare cost – was poorly aimed, and totally missing its “make healthcare better” mark. It’s a chewy, tasty read, with an even chewier and tastier thread of comments.

The money shot for me: “the real battles over power, money, customer choice, and cost” are indeed still happening far, far away from the point of care, and compromising the patient’s experience, the community’s health, and the ability to control spiraling costs. Of the three legs of the Triple Aim stool, the cost piece is the biggest barrier to its implementation.

Can you think of any US industry that would willingly transform itself outta $1T+ in revenue per year?

That’s the ultimate economic outcome of the Triple Aim, and I can hear and feel the resistance of the medical-industrial complex to ending their arms race toward “market dominance” via daVinci systems, proton beam facilities, soaring marble lobbies, and equally soaring temples full of hospital beds … when what we really need is hundreds (thousands?) of small clinics across the landscape helping people get or stay healthy via great primary care, not tertiary hospital resurrections.

Payers and big health systems, EHR vendors, policy wonks all negotiate over the patient’s supine form (and the heads of most clinicians, to be fair) to determine how to divide up the $3T+/year their arms race serves up.

Do we have a prayer of Triple Aim in this landscape? I dunno, but I’m fighting a ground war alongside my patient-side band of guerilla compatriots to see if we can drive some revolution from the grassroots. ‘Cause the folks in suits ain’t moving fast enough toward change.

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qr code tattoo

(c) Mighty Casey Media

tl:dr – click here

I’ve been heard here on the topic of getting a barcode tattooed on my neck to avoid having to fill out another one of those damned forms-on-a-clipboard at a medical provider’s office. I’ve also been heard all over the interwebz (mostly Twitter) on the excrescence that is poly-portalitis syndrome (PPS), caused by the plethora of portals presented by providers under current EHR adoption drive.

In late 2013, I had a V-8 forehead slap moment, realizing that a QR code – I have created several of those, including the one (different than the tattoo!) on my business card – would be a great way to accomplish my objective. QR code reader smartphone apps are in relatively common use, and I also figured that a tattoo would be a conversation starter in the rooms where I work to shift the medical-industrial complex’s thinking on patient engagement and participatory medicine.

Even though it took me over six months to find a tattoo artist willing to do this – and I live in the 3rd most tattooed city in America, according to a Today Show story in 2010 –  and then another couple months to gather the shekels to pay for it, almost a year ago, on June 18, 2014, I presented myself at Graffiti’s Ink Gallery for my inkapalooza.

This was not my first tattoo rodeo. I had done what I thought was required due-diligence in researching the size and pixel resolution on the QR code itself, and had had a couple of meetings with the artist to make sure we were on the same ink dot. I created a page on this site, password-protected it, created a QR code that linked to that page, and we were good to go.

On that page, after you plug in the password that’s inked at the bottom of the tattoo (and is not fully visible in any picture of it that has been shared online, anywhere), you see two documents:

  • My Microsoft Healthvault export document in PDF, which has
    • My full health history back to Year 1 of my life
    • Medication record, past and current
    • Allergies
    • Emergency contact
    • Primary care MD info
    • Insurance info
  • My Advance Directive (everyone should have one – build your own by clicking this link)

I think I scared the artist-kid during the actual tattooing process, by the way. For the uninitiated, getting a tattoo on a bony part of your body – skull, spine, STERNUM – can hurt like a mother. I have a large, 5 color tattoo on my right shoulder blade that, 20+ years later, I can still recall hurting pretty hard during its application. I knew going in that this would be ouch-y, but at [redacted] years of age, after navigating cancer treatment and other slings and arrows of outrageous medical fortune, tattoo ouch-ies ain’t a thing in my world.

The artist had, I discovered later, booked out 3+ hours on his schedule for me that day, figuring that I’d be asking for frequent breaks due to the pain of application. I didn’t stop him once, and he finished up in just over an hour. He looked at me in a way that made me think he was waiting for me to eat some broken glass, or a couple razor blades. Again, given my time on the planet and my life experience, 60+ minutes of having my sternum hammered by a tattoo needle wasn’t a big deal.

Why did I do this? Because I’ve been waiting for the medical-industrial complex to deliver on their promise of health information exchange (HIE), the promise that they’ve been making for years, but have yet to fork over. I can, and do, securely move money around the globe at the click of a mouse. I do it via bank accounts, purchase agreements, contracts with clients. Most people do. But my healthcare record – which is MINE, as much as it is the property of the medical providers who gave the care it describes – is in fractured bits and pieces all over ever’where.

So I rolled my own, and nailed it to my sternum. Any questions?

 

Apr
24

People and Doctors and Money (via Up Goer Six)

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People and doctors and money comic strip
Created via late, lamented BitStrips site.
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