Mighty Casey Media: Comedy Health Analyst

Stop screaming. Laughing hurts less.

global health

Whither Cochrane, for e-patients and everyone else?

by Leave a Comment

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

Human systems start with … humans.

by 7 Comments

Guess who got invited to WHO? No, really.

The World Health Organization (WHO) invited yours truly to its First Global Experts’ Consultation in service of building a WHO framework for patient and family engagement. This is all due to my part in the ongoing anvil chorus that is the new Patient & Family Engagement Roadmap, developed by a group of dedicated folks from all parts of the healthcare compass over the last couple years, with funding from the Gordon & Betty Moore Foundation.

WHO_signsI spent just over two days in Geneva, most of the time head-down in discussions about how the global health system – a patchwork of services delivered by an even patchwork-ier cadre of healthcare delivery systems – can better serve the needs of the people/patients who seek medical care and health information from them.

This post will not attempt to report everything I saw/heard/thought/felt in that jam-packed 16 hours of ideas and outlooks. What I’ll share is my perspective on the challenges, the opportunities, the pitfalls, and the hopes that – in my view, at least – emerged during that lightning round of global spitballing.

Challenges

There’s an old joke that asks, “What’s an elephant?” The answer: “A mouse designed by a government committee.”

That’s the risk, and challenge, to any attempt to build a definable set of standards for a human effort. Education, transportation, trade, infrastructure, communication, medicine – all require some sort of standardization to make them useful to more than one or two people huddled over a campfire. A study of history will show that as much as we humans are great idea generators, trying to get the rest of the tribe to adopt our new idea isn’t easy.

The father of quantum mechanics, Max Planck, said it best: “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.” To paraphrase: Science advances one funeral at a time.

Medicine, which has been practiced for millennia by magical beings initiated into secrets of “science” that could not be understood by the common human, has only become understandable to the average Joe and/or Jane as public education has become available across the globe. Public education still isn’t available everywhere, and the character and content of that education can be complicated by cultural views of science, of the education of women, and other factors that impact access to information.

So the challenges I see here are two-fold:

  • Calcified thinking in power structures, both scientific and political.
  • Lack of science education and information access in the wider population.

That’s true in developed nations – just witness the “science denial” movement in the US that stubbornly insists on not being confused with facts on issues like climate change or human reproduction – as well as in emerging nations that are still building basic infrastructure.

Opportunities

Well, let’s start with who was in the WHO-room. Clinicians, policy wonks, and healthcare advocates from Uganda, India, Canada, Ecuador, Pakistan, Saudi Arabia, Belgium, Ireland, the UK, the US, Switzerland, the Netherlands, Thailand, Australia, China, and Malaysia, along with a wide array of WHO folks from their Geneva HQ as well as a robust representation of their Western Pacific Region Office (WPRO). WHO’s Envoy for Patient Safety Sir Liam Donaldson was engaged in every part of the discussion over the two days, and I was encouraged by his clear insights into the issues we’re all wrestling with in transforming the global healthcare system.

The story that had the biggest impact on me was the one told by Dr. Jonás Gonseth, head of Hospital de Especialidades in Guayaquil, Ecuador. His experience was one that I think spotlights the core problem: lack of trust in the care delivery system by the people that system purportedly serves. I wish I had a link to the video he shared, which clearly showed the lack of trust that the Ecuadoran people had in their healthcare system. Demonstrations outside the hospital, intercut with a number of clips that included a patient on a gurney being rolled toward the hospital door who got dumped on his head when the gurney tipped over as the dweeb hauling it couldn’t figure out how to get it over a curb … you get the picture.

Dr. Gonseth was asked (begged?) by the President of Ecuador to tackle the mess that was the Guayaquil Hospital de Especialidades. In just over two years, he’s worked what could be called miraculous change in quality improvement and patient safety, largely by advocating for community social participation in that work, and for patient empowerment. He’s transformed the culture inside the hospital, and the level of community trust in the care delivered by that hospital. The money quote: “It was such a disaster we had nothing to lose [by involving patients].”

What that story told me is that grassroots frustration with healthcare systems is a global issue, one that was made clear by all the from-the-ground presentations over the two days. That leads me to the opportunities here, which are shared by both developed and emerging countries:

  • “Start where you are. Use what you have. Do what you can.” That quote from Arthur Ashe makes it clear that any – ALL – of us can work on healthcare system transformation. So let’s get this party started.
  • Transformation does not happen from the top down. There does need to be a leader, but a successful leader will more likely come from outside the system needing the transformation.

That calcified-thinking challenge I mentioned above presents a solid opportunity to those of us on the ground, working to transform the system. Designing from the outside in is a software development approach that focuses on satisfying the needs of the end user. Healthcare systems *must* look at system transformation from that perspective: start with the people you’re serving, not with the folks running the hospital/professional society/medical association. The people being served – THE PATIENTS – are the end-user stakeholders.

Pitfalls

There’s much inertia confronting transformation of a massive human system like healthcare delivery. It’s exhausting if you look at it as a “system,” but since it is a system, any action has to be considered in the context of what sort of dominoes – or dynamite – that action might trigger. Plus, attempts at transforming bureaucratic process lead to what I’m going to call Donaldson’s Dictum (in honor of Sir Liam Donaldson, who said it): “Ability to simplify bureaucratic complexity draws heavy fire from the bureaucrats who create that complexity.”

And then there’s the elephant in every room: the money. Whatever the economic basis is for the healthcare delivery system in question, getting quality improvement and patient safety into the budget is a daunting task. Dr. Jonás Gonseth effected his hospital transformation in Ecuador without any increase in budget, but I wonder how much heavy lifting he had to do to sell his ideas to the bureaucrats? Since he’d been asked by the country’s President to take charge and fix a major mess, that might have gotten him through the first week. But transformation at this level takes months and years, so figuring out where the money’s gon’ come from is critically important.

So, in short:

  • Is there a budget for real system transformation?
  • Is there enough political will to allow that transformation to occur?

Hopes

Health_Care_is_a_Right_Not_a_PrivilegeWhen it comes to complex systems thinking, I’m a simple creature. I believe that the more complex the system you’re looking at gets, the more you have to go right down to the molecular level to regain perspective.

If you’re trying to end a disease like polio, you have to start where Jonas Salk did: with the virus itself. If you’re trying to create a healthcare system that delivers human health, you have to start with … the people who are seeking health care. June Boulger, Ireland’s National Lead for Patient and Public Involvement in Healthcare, said the overarching message of her work is “people helping people.”

When I took the mic to make a comment on Monday afternoon, I told everyone in the room to run right back to the ground level whenever they got too “system”-y in their thinking or their approach to quality improvement, delivery improvement, and/or patient safety.

Design from the outside in, begin with the end in mind, “start where you are, use what you have, do what you can,” lather, rinse, repeat.

That’s my entire philosophy of healthcare system transformation in one sentence.

Let’s get this party started.