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crisis communications

Oct 24 2018

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

Jun 18 2015

UPDATE: Patients ARE smarter (and louder) … here’s proof

By e-patients, healthcare industry, media commentary, technology

It’s been a fun week here in Mighty Casey Media Land. We kicked off the week a little early (on Sunday) – the 411 on that is available here, and some of the social exhaust is available on Storify here and here. One member of the e-patient posse worried that the guy was gon’ have to enter witness protection, given the avalanche of opprobrium aimed his way from the expert-patient community.

In an email thread among a group of expert patients working on aggregating and curating patient-useable outcomes reporting tools, Dr. Corrie Painter said she had called the Brookings Institution, the think tank where the author of the US News piece that set my hair on fire does his think-tank thing, and left a terse message on the Governance Studies main line about pontificating patriarchal putzes (technical term).

Given my willingness to talk to anyone, any time, if it moves the needle on healthcare system transformation, I went one better and called the *other* number on the guy’s bio page. I expected to wind up leaving a voicemail, but …

He. Answered. The. Phone.

We talked for about 30 minutes, during which I assured him that I did *not* think that Yelp reviews were the ne plus ultra, or even a thing, when it came to outcome metrics on physicians and other clinical providers of medical services. But, as I pointed out in my “I’m channeling Lewis Black, with boobs, in healthcare here: righteous rage + cutting humor = driving that point home!” post, what real metrics are *available* to patients seeking intel on the expertise and outcomes of the doctors they go to for care?

There are PQRS and Physician Compare data sets, but they’re pretty small beer. Physician Compare serves up Medicare data – just *try* to find intel on a pediatrician, or an obstetrician, in that reporting tool.

In a follow-up post of his own, Yaraghi clarified his position on online review sites like Yelp *not* being the right place for medical provider ratings based on medical training, outcomes, or efficacy of care. His closing graf is the money shot for me:

Patients’ involvement in their medical care is the best thing that could happen to our severely sick health care system. Patients should have access to reliable and valid data to help them decide about their medical provider. They should have the capacity to shop around and visit multiple providers. Healthcare is the most important service we obtain in our life and being able to choose who provides it, in my opinion, is a fundamental patient right. Currently available online patient reviews however, are not the correct measure to rely on when making such a decision.

Net/net here: Niam Yaraghi is a guy with an open mind on the idea of patient expertise. In the days and weeks to come, I hope that the e-patient community turns out in force to engage him in conversation, and to make their case for both patient expertise and the deep need for effective, accessible physician scoring – on number of procedures, on patient satisfaction, on recurrence rates, on all stats relating to the efficacy and humanity of their care – that people can use to find the best doctor for their healthcare needs.

Apr 21 2015

Security vs. access: threading the needle

By healthcare industry, media commentary, politics, technology

The annual big-data party known as the HIMSS conference played out in Chicago – and online – last week. During the event, one of the central issues that arose in the social media conversation under the #HIMSS15 tag involved the one facing patients trying to access their health records, either digitally or on old-school paper: the security/access conundrum. Data that’s accessible to a patient could also wind up accessible to Romanian hackers (you’ve heard me on this topic before), and efforts at making patient data “secure” mean that data is often secure from the patient whose data it is. Patients give their forehead some serious keyboard every day over that one.

The folks over at Software Advice released a report on HIPAA breaches on March 12*, which I only caught up with when I returned from my Mighty Mouth 2015 Tour of Info-Sec and Right Care. Full disclosure, I’m quoted in the report, but that’s not why I’m talking about it here.

Here’s my biggest takeaway from the piece: 54% of the patients surveyed for the report would consider ditching a healthcare provider if that provider had a breach.

Most Patients Would Switch Providers After Breach

pie chart of likelihood of switching providers

 

Key findings in the report:

  1. Forty-five percent of patients are “moderately” or “very concerned” about a security breach involving their personal health information.
  2. Nearly one-quarter of patients (21 percent) withhold personal health information from their doctors due to data security concerns.
  3. Only 8 percent of patients “always” read doctors’ privacy and security policies before signing them, and just 10 percent are “very confident” they understand them.
  4. A majority of patients (54 percent) are “moderately” or “very likely” to change doctors as a result of a patient data breach.
  5. Patients are most likely to change doctors if their medical staff caused a data security breach, and least likely to change doctors if hackers were responsible.

Given the rising number of breach reports hitting headlines, including the massive one that impacted 80 million Anthem customers (possibly including me – not 100% confirmed yet) in January, this is not an issue that will go away. From the expert patient perspective, this is doubly frustrating, because the first thing that happens after a breach headline is the throttling of patient access to our records. Additional sign-on protocols, tighter credentialing, or a full-on “no more digital access” from smaller providers, all laid at the door of “because HIPAA.”

This doesn’t just affect access, it can have an impact on care. Here are the report’s stats on patients withholding information from their medical providers due to breach concerns:

Security Concerns Can Stifle Communication With Doctor

pie chart on patient withholding info

Quoting from the report:

“Health care lawyer and blogger David Harlow is also troubled by our results. Doctors need to get a full picture of a patient’s health history, he explains. If they don’t, the effectiveness of treatment could suffer—or worse, the patient could be harmed. For example, if a doctor is not told about a patient’s current prescriptions, the doctor could inadvertently prescribe a second medication that has adverse interactions with the first drug.

“That’s an invitation for disaster,” Harlow says. “It means we have a lot of work to do to convince people of the safety and importance of sharing information with physicians.”

My thinking on this topic can be summed up in the closing quote from the report, from yours truly:

“Concerns over digital privacy and security have obscured the real conversation, which is, ‘How can we make health care more accessible, frictionless and safe with the data we collect about patients?’”

*Source: Practice Management systems consultancy Software Advice

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