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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.

Social Determinants of Hope

Back in April, I talked about the COVID19 pandemic, sharing some of the reliable sources I track for science and evidence-based information on the virus, its spread, and how public health and health policy types are working to get it under control. Last month, I tackled the uncertainty that’s embedded in our pandemic times – where is the virus spreading, are there any treatments, what’s the progress on a vaccine, all questions that will take time to answer.

It feels like the year 2020 is shouting “hold my beer,” with the pandemic still spreading, scientific uncertainty magnified by the retraction of major articles in the Lancet and the New England Journal of Medicine that purported to show that hydroxychloroquine wasn’t effective against COVID19, but the data that supposedly supported that conclusion was hidden from peer reviewers … and now Americans, and people across the globe, are in the streets protesting against police brutality toward Black citizens in the US and elsewhere.

What’s next? Will Mt. St. Helens explode again?

The impact of COVID19 in the US has hit the Black community especially hard, likely due to the health disparities already present in the community. Social determinants of health has become a watch phrase over the last two decades, as the idea that where you lived, what your access to clean water and fresh food was like, what your economic opportunities were, impacted your overall health. News coverage of the pandemic has been subsumed by coverage of the street protests, happening in all 50 US states and in countries around the world, demanding justice for Black citizens in the wake of the death of George Floyd in Minneapolis at the hands – the knees, really – of the police.

It feels exhausting, trying to manage the barrage of news, some scary, some just downright terrible. Everyone’s social determinants of health have been impacted by COVID19, with massive upticks in the number of unemployed, businesses shut down by social distancing rules, and now we’re watching our fellow citizens getting beaten and tear gassed in the streets. You could be forgiven for feeling overwhelmed – I sure do.

But here’s the thing. It’s a scary time, but I’m seeing strong signals of hope. It could be that we started to realize that we were all together, as humans, in the fight against a pandemic. It could be that, after 400 years, White America is finally waking up to the reality of the daily experiences of Black Americans who face oppression, micro and major, just going about their daily lives.

For me, one hopeful sign is how the medical community is showing up in support of the Black community, as they’re also still tackling the pandemic. In a Health Affairs piece titled Social Determinants of Death, editor in chief Alan Weil said this.

“I wrote this as the COVID-19 pandemic was raging, with emerging data showing a “consistent pattern of racial/ethnic differences”—namely a disproportionate burden borne by Black and Latinx people. As I put the finishing touches on this piece I, along with the rest of the world, witnessed the murder of George Floyd, a Black man.

It is impossible to miss the cruelty and callousness apparent in a human being’s murder when it is captured on video. But it is the same cruelty and callousness that ignores (or laments and then does nothing about) the daily premature death and disability of people of color.

These deaths are all socially determined.”

He went on to call for health care institutions to not just stand against racism, but to use their power to fight racism.

If health care institutions actually do step up, and use their power – the American health care sector, at $3.6 trillion a year, would be the fifth largest in the world based on GDP if it were a country – to end racism, we’ve got a chance to truly shift the human condition, in the US and around the world.

So, health care sector leaders, are you in? You better be.

The whole world is watching.

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

Surprise Billing, Cancer, and You

One of the most nagging issues patients face in the American healthcare system is the risk of what are called “surprise bills,” billing for procedures or treatments that are provided by out-of-network physicians or facilities. While most of the headlines about surprise billing have focused on emergency treatment, there are also cases where treatment for many things, including cancer, have wound up being a trap door that a patient can find themselves falling through due to health insurance plan fine print.

Worrying about surprise bills while navigating cancer treatment is an additional stress that can impact outcomes – you may even have to delay treatment if you discover that some phase of your chemotherapy treatment is out of network, or requires prior authorization for each treatment. Fail to get prior authorization, get billed for treatment, and you’ll have to negotiate with your insurer to get that treatment covered, with no guarantee you’ll win that argument.

So, what’s the best way to avoid surprise bills while dealing with cancer treatment? Here’s where your clinical team can come in handy with a recommendation for a navigator, someone to help you manage the administration side of treatment – ensuring you’re covered, and that your health plan will pay for the treatment your oncology team orders for you. The American Cancer Society has information on their site specific to what a cancer navigator can do for patients and families, and links to finding local navigators.

Here are some steps you can take to ensure your cancer treatment journey avoids surprise billing trap doors:

  • Ask your primary care team to help you with determining the need for referrals to the specialists who will treat your cancer (oncologists, surgeons, radiation oncologists, complementary therapies like lymphedema service)
  • Make sure the clinicians you’re referred to are in your insurer’s network – call your insurer to check, make sure to get the name and employee ID number for every insurer customer service human you talk to about this, and keep a log of those names and numbers
  • Work closely with your oncology team to ensure that prior authorization for treatment, particularly chemotherapy, is secured for you – here’s a place where a cancer navigator can be a literal life-saver

In addition to the American Cancer Society’s guide on insurance and cancer, there are other resource guides on managing the coverage and cost of your cancer treatment. There are a number of options on the Cancer + Careers website – they’re an organization that helps people stay employed, or find jobs, while navigating cancer.

Despite the American healthcare payment system being a labyrinth leading to a rabbit hole, there are options, and help, available. The key is to start asking questions early in the process, even as you’re pursuing a diagnosis, to ensure your treatment plan doesn’t get any unpleasant surprises in the form of big bills that your insurer is refusing to pay.  

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?

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

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.

A Warrior’s Perspective on Cancer

First, full disclosure: I’m not a member of the armed forces. I am a member of a multi-generation career military family, though, so my syntax is flavored with warrior-isms, from throw-weight to battle-ready.

I’ll ask you this: are you battle-ready for an engagement with cancer? I can say that I was not fully prepared for my own personal war on cancer, but who is really ready to hear their name and the word “cancer” in a sentence? It’s a subject that anyone who plans to live past 40 should become intimately familiar with, though, because every day you live on the planet increases your cancer risk.

We are indeed lucky to live in an era where medical discoveries are as accelerated as they are in the early 21st century. The core challenge that faces us, though, is how we live with the biological impact of our technological advancement: plastic in our food, chemical effluent from tech manufacturing in our air and water, and many other human-created biological threats.

Humans have internal challenges on the cancer front, too – just ask anyone with a genetically driven cancer risk, like BRCA1 or BRCA2. Until the last half-century or so, it was hard to know if we were staring down the barrel of a genetic howitzer until nature fired a round. Now it’s possible, via genomic testing, to know our risk of cancer and other illnesses long before they manifest … but what can we do with that knowledge on the prevention side, really? Again, we can ask people in the hereditary cancer community about that. Many women, and some men, in the BRCA community have taken proactive steps, such as prophylactic (preventive) bilateral mastectomies and oophorectomies (ovary removal), but how many people can freely make that choice and receive good, effective care?

As someone who self-identifies as a cancer warrior – I don’t care for the term “survivor,” since it suggests victimology to me – I think about this stuff all the time. I thought about it before I heard my name and the word “cancer” in a sentence, but not as hard, or as much, as I have since.

My thinking tends to revolve around how to make genomic testing available to everyone, not just those who can afford it. It runs toward community crowdsourcing of ideas on how to clean up after ourselves in ways that don’t mean resigning ourselves to eating plastic, or to becoming Luddites to avoid the side effects of technology. It embraces the idea that we can put our biology and technology more in sync – to be the Cro-Magnons with smartphones that we really are in the 21st century.

Healthcare works within human biology. Fully understanding human biology requires that we embrace that biome, and drill as far into it as possible to unleash our full human potential. That does not equate with patenting human genes (yes, Myriad Genetics, I’m looking at you) – it does equate with embracing data input from every possible source to learn how to defeat cancer.

This warrior asks you to grab what weapons you have at your disposal, and put them to use in the fight. We’re all in this together – the cure for cancer won’t be one thing, it will be many. It will come from many places. It must be available to all. And it will never end.

One way to get directly involved is to join the Count Me In project at the Broad Institute. As they say on their website, “Patient-partnered research is changing the future of cancer” – there are countless people across the country, and around the world, working to unlock new information about what triggers cancer cell mutation, and how to find its “off” switch.

Suit up, and join the fight. And if you know of projects working to make the war on cancer an artifact of history, share it on a #PatientChat. Let’s win this one.

The Best of 2018

As 2019 begins, we would like to take a moment to highlight a few of our most popular posts from 2018 and to thank the people who contributed to the popularity of these posts. We cannot thank the authors and organizations enough that have contributed to make 2018 one for the books, such as Marie Ennis-O’Connor, Casey Quinlan, and Jennifer Lessinger. Your efforts to Patient Empowerment Network are greatly appreciated!

January

5 Ways to Have a Productive Day With a Chronic Illness

This post is designed to stop you in your tracks, and provide you with practical ways to have a productive day with a chronic illness.

Patient Advocacy: Understanding Your Illness

Marie Ennis-O’Connor teaches you which questions you should ask your healthcare team and where to find reliable and trustworthy information to become better informed about your health condition.


February

The 7 Habits of Highly Effective Patient Advocates

This blog from Marie Ennis-O’Connor will help you to get motivated to reach your patient advocacy goals.

Negotiating Cancer: Tips From One Who’s Done It

Stefanie Joho shares what she has learned from her cancer journey and how it made her become a patient advocate.


March

Grief, Loss, and The Cancer Experience

Marie Ennis-O’Connor shares her top ten ways to cope with cancer grief.

What’s a Patient Scientist?

At the  Patients as Partners conference in early 2018, the term Patient Scientist was introduced and Jack Aiello shares what that means for him.


April

Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

Marie Ennis O’Connor explains how to find, create, and use health-related hashtags to boost your patient advocacy.

MPN Patient Story: Ruth Gerwin

Ruth Gerwin shares her story and how MPNs have affected her.


May

What Does It Mean To Be An Empowered Patient?

Marie Ennis-O’Connor explores what it means to be an empowered patient today.

Patient and Advocate Profile: Hannah and Carrie Ostrea

Carrie Ostrea shares her daughter’s story and what lead her to start the Little Miss Hannah Foundation.


June

Patient Advocacy: Six Steps to Craft a Compelling Message

Patient advocacy involves sharing your unique knowledge and experience to raise awareness and influence people to create a desired change. Marie Ennis-O’Connor shows you the steps you should take to create a compelling message to get your key issues across.

Patient Profile: Peter Blaze Corcoran

Prostate cancer survivor Peter Blaze Corcoran shares his story and what his disease has taught him.


July

Sleep Deprivation Caused By Cancer

The average adult requires at least 7 hours or more of sleep each night to maintain general good health and well-being, but that can be a challenge for cancer patients. Here are some tips to improve your sleep.

Coping with Scanxiety: Practical Tips From Cancer Patients

Cancer patients often experience anxiety about upcoming scans. This blog shares some practical tips for how you or a loved one can cope with it.


August

My Breast Cancer Story

Dr. Janet Maker shares her breast cancer experience and how she had to become an empowered patient.

Patient Advocacy: 15 Winning Ways to Attract More Readers to Your Blog

Having your own blog is a powerful way to boost your online advocacy, but how can you get more readers? Marie Ennis-O’Connor shares her 15 tips.


September

A Patient Engagement Manifesto – 6 Principles of Partnership

Marie Ennis-O’Connor discusses the need to find ways to engage patients meaningfully in healthcare design and then shares 6 guiding principles you can turn to when you are next called upon to take on a patient advisory role.

Reinventing the Clinical Trial: Start at the Ground Level

“We’re still stuck on the slow train when it comes to really reinventing the clinical trial.” In this blog, Casey Quinlan questions how we might challenge that stasis.


October

Beyond Pink: The Other Side of Breast Cancer Awareness and Lessons We’ve Learned From Each Other

Breast Cancer Awareness Month is famously associated with pink everything – ribbons, clothing, yogurt, you name it! In her latest blog, Marie Ennis-O’Connor goes beyond pink and shares lessons learned from fellow breast cancer patients.

Patient Profiles: Breast Cancer Part I

This is the first blog in a three-part series that took a closer look at five breast cancer survivor stories and one caregiver in honor of October being Breast Cancer Awareness Month.


November

Returning to Work After Cancer Treatment Part I – Preparing the Ground

Returning to work after cancer diagnosis can be difficult and often brings mixed emotions. Marie Ennis-O’Connor shares practical solutions for helping with your re-entry into the workplace.

Nancy’s Lung Cancer Journey

In honor of November being Lung Cancer Awareness Month, our board member, Nancy, shared her lung cancer story.


December

5 Ways to Detect Cancer Before It’s Malignant

Like in most diseases early detection plays an important part in the prevention and intervention of diseases, so this blog show you 5 ways to help detect cancer.

Returning To Work During or After Cancer Treatment: Part 2

In this second part of a three-part series, Marie Ennis-O’Connor discusses common concerns on returning to work after a cancer diagnosis.

All I Want For Christmas Is Customer Service at My Doctor’s Office

I have this crazy dream. It’s about how, when I make an appointment to see my doctor – my primary care physician, my radiologist, my orthopedist, my whatever-ologist – the process is easy, honors my time as much as it does my doctor’s, and winds up running smoothly for both sides of the transaction.

The dream starts this way: I realize it’s time for an initial or follow-up visit to any of my doctors. I open up my browser, point it to my doctor’s website, and log in to the secure patient portal. The one where I can see all my prescriptions, my personal health record, make an appointment (using the handy calendar function), request a prescription refill, ask the nurse or doctor a question via email, or download a PDF of my health record.

In my dream, using the handy scheduling function in the portal, I select a date and time for my appointment. The portal auto-populates that date and time with my name and insurance/contact info, since I logged in and it knows who I am. The system asks me if any information has changed. I click “no”. If I click “yes,” the next screen asks me to make the changes, and “submit”.

I select the reason for my visit from the list of appointment types. I enter any information I need to related to this appointment request (i.e. “Doc, I have this pain…”). Then I click “submit” and the system sends me a confirmation email or text (I picked which one I prefer when I set up my profile on the portal). It also schedules me for a blood draw in the week prior to the appointment, sending me a confirmation for a walk-in at the lab.

The scene in my dream shifts to the day of my doctor’s appointment. I’m scheduled to be seen at 11:00am. I get a text at 10:00am – or an email, whichever I selected when setting up my portal profile – saying that the doctor’s running about 30 minutes behind. I can either come in at 11:30am, or select one of the alternate appointment times in the text/email and be re-scheduled.

I select 11:30am, and I arrive a few minutes before that time. Signing in involves scanning a key tag, or a bar code on a mobile app – just like the one you use at your favorite supermarket – which lets everyone in the practice, from the receptionist to the doctor, know that I’m there, and on time.

If the admin staff needs to talk to me for any reason, they’ll see me on their screen (usually because, in the day-before review, they checked the “confirm insurance details” or “update pharmacy info” or “collect co-pay” radio button) and invite me to have a private conversation. By using my first name only. No sign-in sheet (potential HIPAA violation) or yodeling my full name across a crowded waiting room (definite HIPAA violation).

By the way, in my dream the co-pay is collected by the system without having to get me or the staff involved. I’ve given the practice my credit/debit card number, and signed a consent form to allow automatic collection of my payment when I scan in for my appointment at the office.

I take a seat in the waiting room…for about 5 minutes. I’m called – first name only – by the nurse, who takes me back to an exam room. I scan in again in the room, and s/he checks my blood pressure, temperature, and heart rate using equipment tied into the practice’s IT network. Since I scanned in, the readings are loaded into my record instantly.

S/he and I chat for a minute or two, and then I’m left alone to disrobe. The doctor arrives minutes later, and proceeds with my exam. S/he enters information on a tablet, but spends most of the time talking to me about how I’m feeling lately, the results from my blood work, what my exercise program is these days, how about those Giants/Redskins/Bears/whoever, and if I’ve had any meds side-effects that I haven’t mentioned.

The doc tells me that my blood work shows everything’s A-OK, all my numbers look good. I’m up a few pounds, time to hit the gym a little harder to stop expanding midriff syndrome in its tracks. (It’s a dream, but it could become a nightmare.)

Face time. Real face time. Only about 10 minutes, yet I feel like I’ve been listened to, and engaged with, by my doctor. I feel like I’m recognized as a human participating in my healthcare, not a meat-puppet on a conveyor belt.

OK, I’m awake now. In a world where all of the technology tools to turn my dream into reality exist…but aren’t being used in any consistent way. Why not? Usually, I hear “they’re too expensive” or, my personal fave, “my staff doesn’t like technology.”

Guys, it’s the 21st century. It’s time for some technology-enabled user interface/user experience – called UI/UX in the design business – across the entire medical industrial complex. All of the technology I’ve dreamed out loud above exists, but it’s not in wide use across all medical providers. And EHR systems still don’t talk to each other, so even if one of my doctors has all of the tech-enabled features I’ve outlined working in their system, the data in their system can’t show up in another of my doctor’s systems … even if they’re part of the same healthcare provider system, on the same EHR.

Time to storm the castle, with people – the ones called “patients” – demanding actual customer service from the healthcare delivery system? I think so. Who’s with me?

Molecular Profiling, Cancer, and You

When you get a cancer diagnosis, your doctor might, or might not, bring up the topic of molecular profiling. If s/he doesn’t, you definitely want to bring it up yourself, and here’s why: the results of that molecular profiling can significantly impact your cancer treatment options.

The conversations about this topic that I have been privy to, in both patient and clinical communities, tell me that not every doctor is aware of the full array of genetic testing options for every type of cancer. This means that patients need to fully participate in conversations about tools that put precision medicine on the table, which start with conversations about molecular profiling of your specific cancer cells. If your clinical team doesn’t bring it up, you need to bring it up.

Another conversation gets opened when you bring up molecular profiling for your cancer: the one about insurance coverage. Genetic testing is less expensive now than it was ten years ago, but it still carries a pretty hefty price tag.  There isn’t a lot of hard data on the cost of specific tests – like much of healthcare, it seems to be a case of “if we tell you, we’ll have to kill you” when it comes to price tags before purchase – but commercial tests like Caris Molecular Intelligence (formerly Target Now) (priced at $5,500) and OncInsights (priced at $4,000) are pretty steep, particularly if you have a high deductible plan. If your health plan covers testing you’re, well, covered. If not, you’ll have to pony up some serious coin to get your cancer’s molecular profile.

Here’s where the power of community in cancer comes into play. If we, as people dedicated to transforming cancer treatment – patient, clinician, policy wonk, family caregiver, or all of the above – work together to push for full coverage of molecular profiling as both a standard of care for cancer treatment, and a 100% covered service to cancer patients, we’ll start seeing some “cancer moonshot” promised become reality.

Since medicine is a science, and scientists want proven data, here are some tools to use to advocate for making molecular profiling standard, and covered. From the Journal of the National Cancer Institute in 2011, Ready or Not: Personal Tumor Profiling Tests Take Off; from the Journal of Clinical Medicine & Research in 2004, The Promise of Molecular Profiling for Cancer Identification and Treatment; from Medscape in 2014, Can Molecular Profiling Lower Cancer Costs?

If you’re dealing with a cancer diagnosis right now, and want to bring up molecular profiling with your clinical team, here are the key questions to ask:

  • What are the benefits of molecular profiling for my specific type of cancer?
  • Is my cancer tissue a good candidate for molecular profiling?
  • Will molecular profiling improve my treatment options?
  • When should my cells be tested?
  • How much will testing cost, and will my insurance cover it?
  • What if I’ve already had treatment — does molecular profiling give me any options?
  • What are the risks of testing?

The answer to your cancer lies in its DNA. Don’t miss a chance to survive, and thrive – put your DNA to work in your cancer treatment.