It’s a Misinfo-demic Out There

In the months since the WHO said that SARS-CoV-2, also known as COVID-19, was causing a global pandemic – that happened on March 11, 2020, for those of you keeping track of historical dates – there’s been an explosion of information and scientific exploration related to COVID-19. Everything from pre-prints of studies on MedRxiv (pronounced “med archive”) and BioRxiv (pronounced “bio archive”) to studies that make it through peer review to official article status, only to kick off virtual fistfights in the medical science community, we’ve seen it all. The ongoing argument over hydroxychloroquine as a treatment for COVID-19 is just one example of that fistfight phenomenon.

This puts those of us on the ground – people, the ones that the medical science community calls “patients” – in a quandary. Who do we listen to? What’s the real story, and what’s just conjecture or PR spin? How do we separate fact from fiction, and truth from dangerous mis- or dis-information, during a pandemic?

I’ve talked about some of the sources I trust on science and medicine reporting in previous posts for Patient Empowerment Network. In April, I shared a short list of sources I track for “real deal” information, both on the pandemic and on medical science in general. In May, I tackled the topic of uncertainty, which is baked in to all scientific efforts, with knowledge only coming from many experiments, sometimes over years, that slowly reveal that knowledge.

Those sources are still trustworthy. Uncertainty is still baked into science. Add our very fractured public square, where opinions are expressed at volume, by people who may have an axe to grind or a political point of view that makes them more interested in spreading their point of view, not evidence-based information, and it’s become a misinfo-demic out there – a pandemic level of misinformation that can drown out voices sharing that evidence-based work toward knowledge called “science.”

In an interview with Minnesota TV news station KTSP, one of my trusted sources, Gary Schwitzer of Health News Review, said that the situation we find ourselves in is “a perfect storm of pandemic misinformation.”

So, what should we all be doing to prevent getting infected by the misinfo-demic ourselves? I’d recommend using the tried and true fact-checking methods of source checking – is the source of the information reliable? If it’s something you’re seeing in a social media post, stay skeptical until you’ve seen it in a fact-based outlet like a major metropolitan daily news outlet or in a scientific journal. If it’s something in one of those fact-based outlets, check the source material that should be linked to, or referred to, in the piece itself.

If you want to take a deep dive into how to vet medical science and health stories, you can check out Health News Review’s toolkits – they have them for understanding science, how to assess conflicts of interest, analyzing science news stories, and more.

It is a misinfo-demic out there, so it’s up to us to make sure we don’t wind up buying any snake oil.

Dealing with a Cancer Diagnosis During COVID-19

There’s never a good time for a cancer diagnosis.

Getting a cancer diagnosis, or dealing with ongoing treatment for cancer, during a global pandemic makes a hard thing feel almost impossible. “Can I even get treatment right now” is a question I’m hearing from a number of cancer community members around the world. This is a particularly thorny question in the US, where infection rates continue to climb in hot spots across the country, but there are few countries who aren’t dealing with some level of COVID infection, and its impact on their healthcare system.

Dealing with a diagnosis now means working with your treatment team to figure out surgical options and adjuvant (chemotherapy and radiation) treatment protocols, while also figuring out infection risk. Cancer treatment affects the immune system, making patients more susceptible to COVID.

Here are some recommendations from cancer treatment experts at the NIH/National Cancer Institute:

  • Cancer treatment affects the immune system, putting you at higher risk of COVID infection.
  • If you’re undergoing cancer treatment and have chronic conditions such as asthma, heart disease, diabetes, HIV, obesity, kidney disease, your risk is further increased.
  • Cancer survivors can also be at increased risk for COVID, particularly if they received bone marrow transplantation as part of their treatment.
  • If you’re currently undergoing treatment, discuss your treatment plan with your oncology team – can you make fewer trips to the clinic? Is oral chemo an option if your current treatment is infusion-based? Are virtual visits possible for routine evaluations?
  • If you have not yet started treatment, work with your clinical team to figure out if surgery can safely be delayed; if not, follow the surgical safety guidelines for the hospital where your surgery is scheduled.
  • Manage your increased risk of infection by rigorously following handwashing protocols, avoiding touching your eyes and face, wearing a mask when you leave the house, maintaining physical distance (6 feet) from people who don’t live with you, disinfecting frequently touched surfaces regularly.
  • If you’re in a clinical trial, find out if the trial you’re participating in, or considering participating in, can go virtual – can the trial site accommodate virtual visits, and remote labs?

Living through a pandemic is challenging for everyone. Living through it while dealing with cancer treatment doubles, or even triples, that challenge. The key is to bring up your concerns with your treatment team, working with them through every step of infection prevention protocol to ensure you not only survive your cancer diagnosis, but also the global COVID epidemic.

Survival is a team effort, always.

Uncertainty, Science, and You

Feeling uncertain, or even frightened, in our current COVID-19 global reality? You’re not alone. Uncertainty reigns pretty much everywhere these days, despite confident pronouncements of one kind or another from political leaders, pundits, and even scientific experts. The good news is that uncertainty is a key feature of science; the bad news is that humans don’t, in general, deal with uncertainty easily, or even rationally, much of the time.

In my last piece for PEN, I shared my “reliable sources” for trustworthy information in our pandemic times. Now, I’ll work on helping you figure out how to deal with the uncertainty that’s baked in to the effort to get us all through COVID-19’s impact on our lives and our communities.

First, let’s talk about the personal impact of uncertainty. One of the things I’ve built my consulting career on is my knowledge of improv – yes, that same thing that happens in comedy clubs and training classes, at least when we’re not all on house arrest due to global pandemics. I’ve taught improv classes to business groups, showing them how “yes, and” can lead to all sorts of good things, from better team collaboration to better emotional intelligence. Listening is the secret sauce in improv – it’s impossible to participate without listening to your scene partners, jumping in with “yes, and” when the conversation and action is thrown to you.

Working without a script is the definition of improv. It’s also the definition of living through a pandemic, particularly one that’s a new disease caused by, say, a “novel coronavirus” like SARS-CoV-2. Working without a script is also the definition of uncertainty. So, listening closely to yourself, and to the people in your life (be they in your home, or now-virtual folks), and responding with a “yes, and” mindset can help you stay emotionally grounded. That’s my recommendation for managing uncertainty on a personal level, emotionally.

What about the uncertainty festering daily over what’s happening with COVID-19 diagnosis, treatment, vaccine development, and social distancing rules to flatten the infection curve? Science runs on uncertainty. Experiments and studies start with a “what if” question, and then embark on an effort at an answer. One of the best explainers on COVID confusion is from Ed Yong in the Atlantic, “Why the Coronavirus Is So Confusing.”

This sentence jumped out at me:

This is how science actually works. It’s less the parade of decisive blockbuster discoveries that the press often portrays, and more a slow, erratic stumble toward ever less uncertainty.

It’s been alternately entertaining and enraging to watch the global scientific community wrestle with COVID in real time, with virtual fistfights erupting between experts in various disciplines over what’s actually happening in clinical trials, in frontline treatment outcomes, and in testing. Then there are the armchair “experts” who have no scientific background in virology or epidemiology, but plenty of confident opinions on what the solutions are to managing the pandemic.

Ed Yong’s Atlantic piece is worth your time to read – it will help you cut through the seemingly never-ending noise about what science is telling us (and the scientists) about COVD-19, the coronavirus that’s causing it, and where we might be going from here.

Meanwhile, some rules to live (through uncertainty) by:

  • Listen and “yes, and” your way along
  • Preprints are not peer reviewed science
  • No one really knows what’s going on, it’s always “best educated guess” territory at best
  • Wash your hands

Checklists Aren’t Just For Clinicians

Checklists – lists of requirements for completing tasks without errors or omissions – are common in many industries. Aviation, software engineering, litigation, manufacturing all rely on the use of checklists to accomplish their objectives – no crashes, no bugs, no missing evidence, no missing parts.

When Atul Gawande’s bestselling book “The Checklist Manifesto” landed in 2009, it was interesting to observe the reaction to it from the medical community. There was a visible divide between the old guard (clinicians trained under the eminence based medicine rubric) and the new crop of medical professionals who trained as the web made information more widely available to the average human. The BMJ has a tongue in cheek article, “Seven alternatives to evidence based medicine,” that is a checklist of a sort to figure out which type of clinician you’re working with.

Checklists are a necessary part of completing any complex task, including the practice of medicine. Resistance to “cookbook medicine” – seen as overly rigid adherence to practice guidelines versus clinical judgement in individual patient care – was noticeable from the eminence based bunch in the wake of “The Checklist Manifesto” landing on bestseller lists a decade ago.

Here’s the thing – checklists aren’t just for the clinical side of the stethoscope. Anyone can play, most particularly those of us who are on the receiving end of medical care.

You can start with some of the existing checklists created by patient safety organizations like the National Patient Safety Foundation’s “Ask Me 3” list:

  1. What is my main problem?
  2. What do I need to do?
  3. Why is it important for me to do this?

If you want a deep dive, you can pick up a copy of “The Patient’s Checklist” by Elizabeth Bailey, a professional patient advocate with years of experience, both personal and professional, in managing complex medical treatment.

I’ve built a few checklists of my own, one called the Must Ask List, and one called (wait for it) The Checklist, that are part of my ongoing work on building better communication tools for people to use with the clinical care teams that help them get, and stay, healthy.

In my very-recent patient experience getting a bionic knee – the new guy’s been in place for three weeks as I write this – I worked a checklist that had me searching ProPublica’s Surgeon Scorecard for the orthopedic surgeon in my metro area with the highest number of total knee replacement procedures who also had a low complication rate. The Surgeon Scorecard isn’t exhaustive, it only covers eight common surgeries, but it’s a great starting point if you’re in need of one of those eight procedures.

I also worked my local network of friends who I knew had had knee replacements, and those who had been patients of the guy I’d identified via Surgeon Scorecard as El Numero Uno in total knee replacement on the expertise/outcome metric I used uniformly praised his approach, his staff, and their individual outcomes.

The process I just described is … working a checklist. Anyone can build and run a checklist while they’re dealing with a medical issue. Using any of the examples I’ve shared here can get you started. And ask your medical care team what checklists they’re using – maybe you can adapt them for your own use.

Artificial Intelligence in Healthcare

Ready for its closeup, or not ready for primetime?

Headlines about the advent of artificial intelligence, AI, in pretty much every sector of human life or enterprise seem to be a daily occurrence. Other phrases that get thrown around in stories about AI are machine learning, deep learning, neural networks, and natural language processing.

Here’s a handy list, from the transcription company Sonix, which uses some of these AI tools to drive their service:

  • Artificial Intelligence (AI) –the broad discipline of creating intelligent machines
  • Machine Learning (ML) –refers to systems that can learn from experience
  • Deep Learning (DL) –refers to systems that learn from experience on large data sets
  • Artificial Neural Networks (ANN) –refers to models of human neural networks that are designed to help computers learn
  • Natural Language Processing (NLP) –refers to systems that can understand language
  • Automated Speech Recognition (ASR) –refers to the use of computer hardware and software-based techniques to identify and process human voice

A lot of the stories I see about AI are focused on how it might impact, improve, or otherwise influence healthcare. Depending on who you listen to, it sounds like AI is already diagnosing cancer successfully – here are two pieces, from science savvy sources, on how that’s working, “AI is already changing how cancer is diagnosed” from The Next Web, and “AI matches humans at diagnosing brain cancer from tumour biopsy images” from New Scientist, for your reading pleasure.

As aspirational as the idea of AI in healthcare is, and despite the fact that it’s showing some promise in cancer diagnosis, I’m not thinking that it’s time for the champagne, balloons, and glitter … yet.

One of the biggest barriers to AI is the same barrier everyone – on both sides of the stethoscope, and all the way up to the c-suite – in healthcare confronts daily: data access and liquidity. Data fragmentation is rife across the entire healthcare landscape, with EHR systems that don’t talk to each other well (if at all), and insurers unwilling to open their datasets to anyone under cover of “trade secrets.” In “The ‘inconvenient truth’ about AI in healthcare” in the journal Nature, the authors (British, so this is not just an American problem) point out that, “Simply adding AI applications to a fragmented system will not create sustainable change.” Healthcare systems may be drowning in data (they are), but tools to parse all those data lakes into actionable insights aren’t able to bust the dams holding in that data.

Access is one barrier. Another is the ethics of using AI in healthcare. The American Medical Association’s Journal of Ethics devoted an entire edition to that issue in February 2019, with AMA J Ethics editor Michael J. Rigby calling for deeper discussions about preserving patient preferences, privacy, and safety before implementing AI technology widely in healthcare settings. He particularly notes the impact AI could have in medical education, with medical education being shifted from a focus on absorbing and recalling medical knowledge to a focus on training students to interact with and manage AI-driven machines; this shifting would also require attention to the ethical and clinical complexities that arise when humans interact with machines in medical settings.

AI, across all uses, but particularly in healthcare, has to take a long, hard look at how bias can spread algorithmically, once it’s baked into the code that’s running the machines. There are data scientists doing bias detective work, but will the detectives be able to prevent bias, or just bust perpetrators once the biased outcomes appear?  Stay tuned on that one.

Is there an upside to AI in healthcare? Absolutely, *if* the ethical issues on privacy and error prevention, and the practical issues on data access, are addressed. AI could pave the way to fully democratizing information, both for patients and front-line clinicians. It could liberate all clinicians from data-input drudgery, or “death by a thousand clicks.” The Brookings Institution has a solid report, “Risks and remedies for artificial intelligence in health care,” as part of its AI Governance series, that breaks down the pros and cons.

Circling back to the question in the headline, is AI in healthcare ready for primetime? This person’s answer: it depends. I think that rigorous study, in the development of AI in medicine and its use in the healthcare system, is required as an ongoing feature of AI tech used in human health. Upside there? A whole new job classification: AI oversight and management.

All I Want for Christmas … Is a Better Scientific Publishing Model

Scientific publishing is broken.

That may sound like hyperbole, but it’s not – there’s a rising tide of voices, in academic and policy circles, as well as from the general public, calling for change in how science is reported professionally.

The traditional scientific publishing model – the one that’s rooted in “publish or perish” – requires that research scientists cycle through developing a scientific question, running experiments to prove or disprove that question, rigorously gathering data to support the conclusions reached in those experiments, then assembling all of it into a paper for peer review, and publication if the paper makes it through that peer review process.

None of what I just outlined is problematic. In fact, it’s how science works. Ask a question, work on getting the answer, tell the story of that answer to the scientific community and the general public. Every scientific experiment that gets all the way to publication – which is a lot of experiments, with around 2.5 million papers published annually – adds to scientific knowledge, and gives other science geeks ideas to build on in their own work.

But the scientific publishing model is broken.

In the 21st century, the idea of paying over $1,500 for an annual subscription to the American Journal of Emergency Medicine (note that if you hit that link, you’ll have to download an eye-straining Excel spreadsheet to see subscription pricing – consider yourself warned) is a little sticker-shocky for a thirty-something emergency medicine MD who grew up with the “content wants to be free” internet. But that MD’s professional society membership(s) may include journal access, with the cost of that subscription baked into the not-insignificant annual membership fees.

Content cannot be actually free – I’m a writer, so I’m a “content creator” myself. Getting paid to do the work I’m professionally trained and experienced in is a requirement for my personal sustainability. I’m not suggesting that scientific publishing companies stop charging for the services they provide. I’m asking for a more reasonable approach than the current model.

The two main contributors to the content of scientific journals – the paper authors, and the peer reviewers – provide their work virtually free of charge. That free labor, in combination with the close to 40% profit margins in scientific publishing, have created dissention in the science ranks, particularly since career advancement in scientific fields, including medicine, relies on publication credits on your CV. Add to that the fact that government money, in the form of support for universities where most of the scientific experiments that wind up as published papers is done, and it seems like publishers are minting coin off of work provided by others.

As the author of that linked Guardian story says, “It is as if the New Yorker or the Economist demanded that journalists write and edit each other’s work for free, and asked the government to foot the bill.”

Enter open access journals, which started to appear as the web emerged in the 1990s. Open access journals charge paper authors to publish their work, then make the access to the paper “open,” so anyone can read it – no paywall, sometimes a site registration is required, but no charge per article, “paywall,” to read or download. All journals – traditional and open access – have production costs, which include everything from managing the peer review process to graphic design to printing physical copies of the journal. There is no “free” in scientific publishing, someone will always be paying for it.

Open access journals opened up publication options and ability to see the science being reported. However, that pay-to-publish thing also opened up the publishing marketplace to what are called “predatory journals,” which in turn opened a seemingly bottomless can of worms, where publishers of journals identified as problematic threaten to sue those who maintain lists of suspect journals

Like I said, scientific publishing is broken. Fixing it will require some heavy lifting, and I don’t mean lifting heavy journal issues – I mean the hard work of busting open the walls, the paywalls, that prevent wide dissemination of new scientific knowledge.

Cracks in the paywalls are widening, with large universities like the University of California system telling Elsevier they weren’t paying $10 million a year to subscribe to their journals anymore. Six years ago, in 2013, Richard Van Noorden, the features editor of the journal Nature, wrote “Open access: The true cost of science publishing,” which is a comprehensive assessment of the issue that’s still relevant in 2019, and likely to remain relevant well into the next decade.

As science denialism rises across the globe, it’s critical that scientific discovery be accessible to those interested in furthering that discovery. Which means being able to read scientific papers. Science is fun. It’s also essential to our survival, and that of our small blue planet.

So, let’s fix the broken scientific publishing model. We have to figure out how to fairly compensate publishers, while also keeping the scientific method firmly embedded in the publishing process. Somehow, I don’t think 40% margins (which beat Apple’s, by the way) are necessary here. What do you think?

Cyber Hygiene – Peer Support in the Age of Surveillance Capitalism

Unless you’re a visitor from another planet, you’ve probably seen or heard some news about the internet being a giant privacy sinkhole. Between the stories that first started to break in the Cambridge Analytica/Brexit aftermath, and the ongoing drip-drip-drip that is the “my phone is a snitch” stuff that seems to bring fresh scary headlines every day, it feels like anyone who has a social media presence of any kind has had their privacy violated in some way.

It’s tempting to just say, “who cares – I don’t do anything that anyone else cares about,” but that’s not really the case if you participate in online patient communities, particularly those that gather on social media platforms like Twitter and Facebook. The issue is particularly problematic for patient communities dealing with health issues that could impact their health insurance coverage, or their employment status, or even their lives, if the details of their health status were widely or publicly known.

An example of that risk could be someone who’s gay, but who works for an employer that has a public profile of being anti-LGBTQ. Someone in that situation, who participates in a Closed Facebook Group for people looking to share experiences on getting access to pre-exposure prophylaxis (PrEP) medications to prevent HIV transmission, might think that a Closed Facebook Group would be a safe place to have those conversations, but Closed Groups – which were promoted by Facebook to community moderators as private community building tools – were subject to the same data privacy breach risk that the rest of Facebook became. Which means that a gay man in a Closed Group that serves as a community space for discussion of access to HIV preventive treatment could be outed to their anti-LGBTQ employer via data leakage from that “private” group … which was not really private at all.

There is rising awareness, and concern, in patient communities about this privacy issue, particularly related to Facebook Groups, which became the de facto place to establish peer health communities over the last decade. An advocacy group called The Light Collective is looking to build a safe harbor for patient groups to build community without sacrificing members’ privacy, but until that harbor is built, what’s a patient community to do? And what about just-plain-people, the ones called “patients” – what’s their path to privacy in the surveillance age?

Here are my suggestions for enhancing your privacy online:

The internet is a boon to humanity when it comes to access to information, and democratization of knowledge. However, along with access to information, we’ve also gotten disinformation, trolls, and cyber-surveillance at scale. Peer to peer communities, particularly in healthcare, are critical to accessing good information, and emotional support when dealing with serious illness. However, data privacy is not guaranteed in any way on social media platforms. Caveat emptor – let the user beware. And modify their settings accordingly.

Science and Evidence That’s Readable By Average Folks? It Does Exist!

There’s a lot of discussion – online, at conferences, and in clinical care settings – about “evidence-based medicine.” There is some disagreement (no surprise) on the idea that any medicine is done-and-dusted on the science and evidence front, since science itself is a process of ongoing discovery. And even those discoveries can get called into question when further research reveals that the science behind a treatment, or a diagnostic norm, is a “nope, not really.” Dr. Vinay Prasad [1] and Dr. Adam Cifu [2] wrote the actual book on that, “Ending Medical Reversal: Improving Outcomes, Saving Lives [3].”

But medical reversal isn’t what I’m going to focus on in this post. Helping people, the ones called patients, figure out how to learn about medical evidence, how it’s created, and how to keep track of new ideas – including medical reversal – is what I’m up to this month. So, let’s dive in.

Where should an average human look for scientific information that matters to them about their own condition or disease, or a condition or disease affecting a loved one? Articles in scientific journals are not written for easy reading by non-scientists, but anyone can join in if they follow the process outlined in this post from December 2017 [4]. (full disclosure: written by yours truly).

Using that approach, you can read scientific papers published on the National Library of Medicine’s PubMed [5], which is a treasure trove for anyone with a science-geek bent. Not all the articles in PubMed are available in full text, but you can get the abstract (the research question, essentially), and the DOI, the identifying number for the article. Getting the full text version of a journal article can be as simple as going to a medical library [6], if there’s one in your area. You can also see if your local library has access to the journal you’re interested in. There’s a handy tip sheet on the Journalist’s Resource site [7] that’s got all the ways we journalists can sherlock our way into getting the full text of an academic paper.

In service of doing the ongoing work of testing the science that gets published as emerging medical evidence, researchers around the world are refining and testing that published evidence. The Cochrane Library [8], part of the global medical evidence testing project the Cochrane Collaboration [9], has a wealth of information on how researchers test published results in processes called evidence synthesis [10] and meta-analysis [11], reporting on whether the “evidence” really is evidence for treatment or diagnosis. Cochrane also has a global consumer network [12], where anyone can learn about how evidence is created, and get involved in working to refine and assess the science behind it.

If you’re just looking for information on your particular condition or issue, to help you understand what you’re dealing with and get the details you need to work with your clinical team on making decisions, you can ask your team for recommendations on information sources that are written for average humans. There’s no comprehensive library of those resources, but they do exist. One example, for cancer patients, is the American Society of Clinical Oncology (ASCO) Cancer.net [13] site, which is a deep dive, written in plain English, into the diagnosis, treatment, and outcome stats on all forms of cancer.

On the emerging-science front, the last twenty years has seen the emergence of the science of patient engagement, and patient experience [14]. An example of an ongoing effort in that area is the Patient Experience Library [15], launched in 2016. Their reports and quarterly magazines are a great way to track that emerging science, and follow how it’s being embraced, or resisted, by the hard-science side of medical evidence and treatment discovery.

Science is a process, not an endpoint. Anyone who’s interested in furthering that process can participate – “citizen science” [16] is an emerging discipline that’s having an impact in many scientific fields, including medicine. Join in, and speed up discovery!


Links:

[1] Dr. Vinay Prasad

[2] Dr. Adam Cifu

[3] Ending Medical Reversal: Improving Outcomes, Saving Lives

[4] this post from December 2017

[5] National Library of Medicine’s PubMed

[6] medical library

[7] handy tip sheet on the Journalist’s Resource site

[8] Cochrane Library

[9] Cochrane Collaboration

[10] evidence synthesis

[11] meta-analysis

[12] Cochrane also has a global consumer network

[13] American Society of Clinical Oncology (ASCO) Cancer.net

[14] patient engagement, and patient experience

[15] Patient Experience Library

[16] citizen science

Care Coordination in Cancer – Are We There Yet?

Care coordination [1] in medicine is a gold standard goal – it’s a core part of quality improvement efforts across the healthcare system. But, in the words of every kid in the back seat of a car on a family road trip, “are we there yet?” The answer is, “no, but we’re getting closer.”

The US Dept. of Health and Human Services Centers for Medicare and Medicaid Services – a mouthful reduced to the acronym “CMS”, thankfully – initiated an Oncology Care Model [2] in 2015, which impacts Medicare and Medicaid beneficiaries, as well as people covered by private insurance payers participating in the program. There’s an interactive map of participating oncology practices here [3].

What this means on the front lines of cancer treatment – in oncology clinics – is that there is a core set of measures for care coordination [4] that any oncology group can follow, like a road map. Looking at the actual map, linked in the previous paragraph, of where the cancer care coordination model is in use reminds me of cyberpunk sci-fi author William Gibson’s evergreen quote [5], “the future is here, it’s just not evenly distributed.”

One of the reasons that coordination of care is hard in the American healthcare system is that we don’t really have a national healthcare system [6], we have a patchwork of 50 state systems for private-payer and Medicaid coverage, with a national system for those on Medicare. Coordination of care in the United States requires being able to take information from a variety of sources, some of which are in competition with each other over revenue they gain from having that information. CMS, as a national care system, has some policy and market power to dictate [7] “you guys will cooperate, or we’ll take action to make you cooperate,” but given political realities, that power is sometimes blunted by industry influence.

“Are we there yet?” “No, but we’re getting closer.”

What this means, on the ground and in the real world of cancer treatment, is that there’s an opportunity for patients to improve the coordination of their own care, and communities to push for better care in cancer treatment clinics, using this same road map of care coordination measures.

If you, or someone in your family, is dealing with a cancer diagnosis, here are my recommendations for turning the Oncology Care Model into your own care coordination road map:

  • If an oncology practice in your community is participating in the CMS Oncology Care Model program, consider them as a first-choice option, and find out if that practice is in-network on your health insurance plan
  • Ask the oncology practice treating you if they provide 24/7 access to clinical staff who can see your medical record, and who can answer questions about your treatment, including side effects and other issues that can arise during cancer treatment
  • Ask if the practice treating you has patient navigators who can help coordinate care within and outside the oncology clinic – with your primary care team, other clinical teams for any other chronic or acute health conditions you may have
  • Ask if the practice treating you has financial counselors who can help you with figuring out costs for your treatment, what costs are covered by your insurance, and how to get help with out of pocket expenses related to deductibles and co-pays
  • Ask your oncologist how your treatment protocol is supported by nationally recognized clinical guidelines for treatment of your type of cancer

It’s only when patients and clinical care teams work together that treatment outcomes improve, and quality improvement efforts across the care delivery system also improve. Care coordination – are we there yet? Now, but we’re getting closer … if we all work on this together.


Resource Links:

[1] Care coordination

[2] Oncology Care Model

[3] Where Innovation is Happening

[4] Oncology Care Model Overview

[5] William Gibson’s evergreen quote

[6] An International Perspective On The Paradoxes Of US Health Care

[7] Information Blocking

Bias in Medicine – An Untreated Epidemic

Bias – noun – prejudice in favor of or against one thing, person, or group compared with another, usually in a way considered to be unfair.

Humans are, by nature, biased in favor of their own group – village, country, race, social status – over “others” from outside that group. This tendency toward bias against those different from us is rooted in how humans process the information they get from their surroundings – “is that friend or foe?” is a pretty basic processing form. If someone looks, talks, or smells “different,” the most basic parts of the human brain can start firing warnings about stranger danger. That’s called a cognitive filter, or cognitive distortion [1].

How does this impact medicine? Since medicine is a human endeavor, everyone involved is bringing their own implicit biases [2] into the room with them. It’s human to feel a little uncomfortable with someone who looks, or acts differently than you. However, in a medical setting, what happens when a clinician “others” a patient? Or when a patient does the same thing to a clinician? My educated guess is that this drives down positive health outcomes, creating burnout in clinical staff and hampering recovery in patients.

I’m not the only one asking questions about bias in medicine. My fellow funny person (I am, after all, the “comedy health analyst [3]”) John Oliver devoted most of a recent episode of his HBO series “Last Week Tonight” to the topic [4], which I’d say is required viewing for anyone interested in this segment of health policy. In the piece, Oliver and his crew stack up some serious evidence of racial and gender bias in medicine, particularly in the cases of women having heart attacks [5], and women of color giving birth [6].

How should we – all of us, patients and the clinicians who prove our medical care – address this issue? A good first step would be to recognize that we’re all a bit racist [7] (link is to a Psychology Today article with that very title), which would at least put us in a frame of mind to question our assumptions about the person in front of us in the clinic, or the exam room, or the hospital bed – whichever side of the stethoscope we’re on.

If you’re willing to take that first step, your next step could include taking any of the Teaching Tolerance Project Implicit [8] self-tests on bias with regard to gender or race.

“I wouldn’t have seen it if I hadn’t believed it” is a quote often attributed to Canadian philosopher Marshall McLuhan [9] – a perceptive twist on the “seeing is believing” aphorism, one that asks us to challenge our assumptions about the people we encounter in our daily lives, in medicine and beyond.

Self-awareness leads to a better understanding of others. Better understanding of others leads to less distrust, and more cooperation between individual humans, and among the groups we gather in. Which just might improve human health overall. Let’s test that theory, shall we?


Resource Links

[1] cognitive filter, or cognitive distortion

[2] implicit biases

[3] comedy health analyst

[4] devoted most of a recent episode of his HBO series “Last Week Tonight” to the topic

[5] women having heart attacks

[6] women of color giving birth

[7] we’re all a bit racist

[8] Teaching Tolerance Project Implicit

[9] Canadian philosopher Marshall McLuhan

“Fake News” Can Be Hazardous to Your Health

In a recent post, I talked about the trust that’s required for effective peer health discussions. That trust issue is even more critical when it comes to the science of medicine, and its inclusion in those peer health discussions – as in, is what’s being shared in peer health groups scientifically sound, or snake oil?

One of the downsides of giving everyone a voice – one of the foundational goals of the web, according to Tim Berners-Lee, its creator, “its true potential would only be unleashed if anyone, anywhere could use it without paying a fee or having to ask for permission”- is that everyone has an opinion and a place to express it, but opinions are not facts.

Which brings me to today’s web, where anyone with a smartphone can share an opinion, call it a fact, and gather a community around that opinion-in-fact-clothing. There is dangerous “fake news” mushrooming across the globe, thanks to the web, with the most egregious versions of it driving bad decisions about human health. One example of that is what’s called the anti-vaxx movement, where a debunked article by a disgraced scientist named Andrew Wakefield has continued to drive a mistaken belief that the measles-mumps-rubella (MMR) vaccine given to children under two years old causes autism. (Spoiler: it does not.)

That’s only one example. There are a host of others, including bogus cancer cures that proliferate on Facebook and YouTube, and recommendations that drinking bleach can cure autism. So what’s a patient community member to do? And where’s the clinician community on this issue?

In a powerful op-ed in the New York Times in December of last year, “Dr. Google Is a Liar,”cardiologist Dr. Haider Warraich said that Silicon Valley needs to own their part of this problem, that journalists need to do a better job of covering health and science news, and that the scientific community itself needs to be more transparent and easy to understand when they talk about new discoveries.

It turns out that the cardiology team is playing hard on the side of truth here, publishing an editorial in February 2019 in more than two dozen cardiology-related scientific journals around the world, saying that the medical community needs to help the public vet the message they’re getting from whatever sources they use for health information. The American Heart Association even has a short and snappy video – it qualifies as a thirty second ad that could run on television – “5 tips for finding trustworthy health information online” that recommends: Top of FormBottom of Form

  1. Look for government sites, medical professional societies, and reputable medical schools as information sources
  2. Look for sites that stay current, that refer to updated information and current science
  3. Make sure the information on the site is reviewed by a medical professional
  4. Beware of sites that promote “miracle cures” (and that run ads for those “miracles”)
  5. Verify what you read with your clinical care team

The clinician community has joined the fight against fake news in medical science. The patient community needs to make the same commitment to fighting junk science in our circles. What should be on our list of recommendations for avoiding falling for “fake news”? And should we develop a code of ethics for patient community leaders that covers the information we share online?

I welcome all suggestions, and I’ll include them in a future post. Just hit me up on Twitter, using the hashtag #PtLeaderEthics, or via email. Let’s fight fake science news together, shall we?

Access To Healthcare As A Human Right

One of the keys to health literacy is understanding your role, as a patient, in the care delivery process chain: learning what you need to know to ask questions that can help clarify decisions with your clinical team; how to assess the information you’re given to understand what you need to do, or to consider, as next steps in your treatment journey; who to consult for expert input and guidance to fact-check, and gut-check, the information you’re processing and the decisions you’re making.

It’s a lot, particularly when you’re dealing with the impact of what I (and Firesign Theater) like to call “a really big disease.” It’s even more – way beyond “a lot” – if you have to also fight for the right to access treatment for your diagnosis.

This may seem like a problem that belongs to someone in a developing country, not one that happens in the USA, but that’s not the case, far too often. In America, a person given a diagnosis of cancer, or of Parkinson’s disease, or any other “really big” condition, not only has to navigate learning all about that condition, but also has to figure out how to pay for the treatment for it.

In a recent survey from West Health and Gallup, some alarming stats surfaced about Americans and access to medical care:

  • 45% of people surveyed feared bankruptcy if they had a major health event (“really big disease” or accident)
  • 77% feared that rising costs will significantly damage the U.S. economy
  • More than 3 million people borrowed more than $10,000 to cover medical expenses in the past year

Which brings me to my main point here – access to medical care is, I believe, a basic human right. If the system that’s providing your care has been priced out of your reach, and you wind up bankrupting yourself, and your family, to access care, is that really “care,” or a symptom of a broken system?

Sure, the doctors and nurses, as well as the hospitals and clinics where they work, deserve to be compensated for their work. I’m not suggesting that medical care be free. What I am suggesting is that, in the US at least, the goal of the “system” has been to protect the status quo – the revenue stream, which at last official count (2017, from the US Centers for Medicare and Medicaid Services) was $3.5 trillion, of which about $1 trillion is estimated to be waste. Does that sound like a healthcare system, or a RICO scheme? Asking for millions of friends.

Until we, as a nation, confront this issue of access to medical care, and the inequity of access caused by the “chaos behind a veil of secrecy” that marks the pricing of that access, we’ll be stuck in the loop we’ve been in since the end of WWII, when Harry Truman tried to initiate a national healthcare program and got beaten up on the White House lawn by Congress, and the American Medical Association.

America is founded on the idea that every person has a right to “life, liberty, and the pursuit of happiness.” It’s hard to have life, or liberty, or happiness without access to healthcare. Let’s live up to our founding principles, and guarantee healthcare access to all. Anything less, and we’re betraying the American promise.

Peer to Peer Health Networks, Trust … and Facebook

Unless you’ve been visiting another planet lately, you’ve probably seen a headline or two (or maybe fifty) about the rising sense that the social network called Facebook might not be trustworthy when it comes to data privacy for the network’s users. Not that the barrage of headlines over the last year have been the first time the company has had to go into crisis communications mode over data privacy issues – there was a dustup over user privacy that led to a US Federal Trade Commission (FTC) consent decree in 2011, which Facebook has apparently ignored in the ensuing eight years – but the current contretemps over betraying user privacy makes the 2011 headlines look like a radar blip.

The impact on Facebook patient communities, who have made extensive use of the Facebook Groups product to gather together to provide support and resources for people dealing with conditions from ALS to rare disease to hereditary cancer risk, is only just starting to break through the noise over the Cambridge Analytica story, which was how the privacy leaks on the platform were first discovered. The ongoing saga of “did the Russians hack the 2016 election,” with Facebook’s likely, if (maybe) unwitting, part in that, adds to the thundering chorus of “what the heck, Zuckerberg” that’s echoing across the globe.

Peer to peer health advice has become part of any person-who-finds-themselves-a-patient’s self-advocacy routine – just ask internet geologist Susannah Fox, who has made a successful career out of observing what people do with the information access bonanza known as “The Internet.” Facebook has become the go-to platform where people gather to discuss their health issues, usually in Closed or Secret Groups, where all kinds of deeply personal and intimate details of their lives, and health conditions, get shared. Discovering that those personal, intimate details had basically been released into the wilds of the web, willy-nilly, with no way to track where that data wound up, has rocked communities around the world who relied on Facebook to provide the connections they’ve come to depend on to manage their health conditions.

In the slow-motion train wreck that the reveal of this data leakage/breach has been, cybersecurity researchers Andrea Downing and Fred Trotter get a lot of credit for digging into the Facebook API to figure out how a Closed Group could become a data-slurping bonanza for any jackass on the internet. Trotter and health-tech legal eagle David Harlow filed a complaint with the FTC, co-signed by Downing and bioinformatics guru Matt Might, spelling out exactly how Facebook had played fast and loose with their Terms of Service for the product, and also allowing their Developer platform to become a data-miner’s paradise with a “there are no rules, really” accountability framework when it came to data snagging.

Since discovering the security vulnerability in 2018, reporting it to Facebook, getting what amounted to a “so what?” response from the platform, and then trying to figure out how to keep community members’ data safe, Andrea Downing, along with Fred Trotter, David Harlow and, full disclosure, yours truly, along with a host of other patient activists, have formed a collective to figure out how to create a community platform for patient communities *off* of Facebook. Stay tuned for updates, that’s going to be a big job, and it’s going to take time and some serious deep thinking and heavy lifting.

In a piece on the Tincture health channel on Medium, “Our Cancer Support Group On Facebook Is Trapped,” Andrea spells out the issue clearly, emphasizing that the promise of connected community that Facebook offered exists nowhere else … yet. And until it does, patient communities are indeed trapped on the network, since that’s still where they get and give the support so deeply needed by people who get a diagnosis, and who want to find out from someone who’s been there, done that, what their own future might hold.

It’s not an easy-to-solve problem, this betrayal of trust that creates a pressing need for the creation of a safe harbor. I’m putting it before you on the Patient Empowerment Network since I know that everyone who reads the pieces posted here has a stake in peer to peer health, and the trust framework that’s required for peer health resources to be effective. If trust is the new network effect, it’s incumbent on those of us who advocate for robust online peer interaction in health, and healthcare, to call for more trustworthy platforms to support our work.

Let’s get on that.

Health Literacy + Clinical Trials = Your Mileage May Vary

I spent Thursday, April 11, 2019 at a National Academies of Science, Engineering and Medicine (NASEM) workshop titled “Health Literacy in Clinical Trials: Practice and Impact” – this meeting is part of the NASEM’s ongoing Roundtable on Health Literacy. I got an invite due to a tipoff from #BSCM co-founder (and one of my besties) Alicia Staley, who was on the agenda. Since health literacy is one of my foundational interests, and part of my own work in healthcare system transformation, I was happy to trek to Washington DC for the day to see and hear what was shared in the meeting.

Statistics on clinical trial enrollment in the US, for cancer or any other medical condition, are pretty disheartening on the public engagement front. In an article in the journal Contemporary Clinical Trials titled “Clinical trials recruitment planning: A proposed framework from the Clinical Trials Transformation Initiative,” the authors said, “A 2015 analysis of registered trials revealed that 19% were closed or terminated early because they could not accrue enough participants. Trials can also experience significant delays related to recruitment. As much as 86% of clinical trials do not reach recruitment targets within their specified time periods. Data suggest that study timelines have potentially doubled beyond planned enrollment periods due to low recruitment rates. Failures in meeting recruitment goals have important scientific, financial, ethical, and policy implications.”

It seems likely that a good chunk of that lack-of-engagement is due to one or more of these factors:

  • Low health literacy
  • Lack of community trust in medical research (Henrietta Lacks, anyone?)
  • Too many frontline clinicians – primary care MDs, NPs, RNs; community health workers – don’t have time to find trials for their patients in minutes-long clinic visits
  • Little widespread community-based messaging about the value of participating in medical research

On that last bullet, the National Institutes of Health (NIH) launched the All Of Us research program last year with more public messaging than I’ve seen previously for a health research project, with 200,000 of the one million participant target registered in the program as of March 2019. By the way, I’m one of those 200,000, and you can be, too.

The keynotes, panels, and discussions at the workshop kept circling back to some core points, which seem to be foundational to making clinical research more accessible, and leading to the accelerated discovery that the public, the clinical community, and the research community are all interested in. Here are my key takeaways:

  • It’s the relationship, kids. Like all of healthcare, building relationships is the key to good outcomes, whether it’s one person working on managing their own health or a cancer community seeking clinical trial options.
  • You can’t rush relationship building. This creates tension for researchers, who are often on a one- or two-year long cycle of grant writing to secure funding for a clinical trial. Researchers can start a conversation with communities and clinics who’d be interested in participating, but holding that interest for the year or more long process of securing funding, navigating the IRB process, and launching the trial is a challenge.
  • “Informed consent” needs to be shifted to “educated consent,” with the people working on a decision about enrolling in a trial – the ones called “participants” or “subjects” (not my favorite word) – given all the knowledge-building material they might want or need to make a fully educated choice.

If you’d like a flavor of the conversation that took place in real time during the workshop, there was a vibrant one on Twitter with the hashtag #HealthLitRT (Health Literacy Roundtable). There was consensus, both in the room and in the online discussion, that clinical trials are themselves an outstanding health literacy building opportunity. The key will be to help the patient and research communities work together on creating the literacy tools, and the delivery processes, that will turn clinical research into a virtuous cycle of discovery, and delivery of new treatments.

Let’s get to work.

“The Future Is Here, It’s Just Not Evenly Distributed.”

Too often, healthcare outcomes on the ground level feel like a roll of the dice – there seems to be very little certainty about what’s going to happen, despite clinicians’ efforts to explain treatment options and patients’ attempts to understand what’s happening in the treatment process. The endless drumbeat of “scientific breakthrough” headlines of varying accuracy, or even veracity, adds even more of a casino-odds vibe to the experience of dealing with a challenging diagnosis like cancer or Parkinson’s.

The title of this post is an apocryphal quote attributed to cyberpunk writer William Gibson (his Twitter handle is @GreatDismal, and he’s definitely worth a follow) – it’s an aphorism I find myself using almost daily at this point, particularly when I’m participating in conversations, either in person or digital, about emerging trends in clinical research, clinical trials, and health system innovation. There are strong indications that healthcare, and the science that underpins it, is moving in a direction that will deliver up the “faster cures” that everyone affected by challenging or life-threatening conditions is anxiously awaiting.

Some of the signal I’m picking up comes from the scientific community itself, with organizations like Cochrane working to make science more accessible, and accurately reported, for everyone. Cochrane runs a rigorous systematic review process on clinical research studies and trials reporting, and has built a Consumer Network and a public-facing platform called Cochrane Crowd where anyone can become a citizen scientist (there’s a training program!) and then jump in to help assess and review clinical studies. I wrote an overview of Cochrane last year after attending the 2018 Cochrane Colloquium annual meeting in Edinburgh last September, which you can read here for a full 411 on all things Cochrane.

Another signal source for emerging indications of “future is here” is the increasing number of journal articles talking about making public engagement in research, and in healthcare system redesign and innovation, an actual thing vs. a “nice to have” or a box to check on a list from the marketing department. A recent example on that one is “Public engagement can fight against health inequalities—but only if we do it right” by Imran Khan, Head of Public Engagement at the Wellcome Trust, in The BMJ. Another example is a one day conference I attended recently, put together by the Clinical Trials Transformation Initiative (CTTI) and the US FDA, “Enhancing the Incorporation of Patient Perspectives in Clinical Trials.” I attend a lot of scientific and policy conferences and events, where I usually find myself grinding my teeth at the still-evident paternalism and “we’ve always done it this way” thinking that threads through medical science and health policymaking.

The CTTI/FDA event didn’t get my jaw clenched (much) – there were patients with lived experience and expertise on each panel at the event, with Donna Cryer, a lawyer and liver disease expert/advocate/activist, giving the opening keynote. Life sciences companies like Eli Lilly, Pfizer, and Takeda had representation, too, and all spoke clearly about the need for people/patients to be in on creating clinical trial protocol design that includes data release to study participants, and better research questions developed with patient input. On the revolutionary-thinking “future is here” front, there’s even an emerging idea of establishing clinical trial participant benefit trusts, where people who participate in drug trials are beneficiaries of trust funds established with stock options for drugs that are approved, and go to market. I’ll give you three guesses on who stepped up to the microphone in the Q&A session to talk about that idea [spoiler: yes, it was me].

My point is that the future is here, and it will be as evenly distributed as you, I, and the rest of the community at large – the public! – work to spread it around. The distribution network is us. Join Cochrane Consumer Network, start participating on Cochrane Crowd, spread the word on clinical trials that can benefit your community, and encourage your community to reach out to researchers at local universities and medical centers to offer to help design and launch clinical studies and trials that matter to the community itself. Citizen science isn’t just an idea, it’s jet fuel to get us to the future, faster.