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The Best of 2020

As 2021 begins, we would like to take a moment to highlight a few of our most popular posts from 2020 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 2020 one for the books, even during a trying year. Your efforts to Patient Empowerment Network are greatly appreciated!

January

Patient Profile: Perseverance and Positive Thinking Helped This Young Mother

Stage IIB Hodgkin Lymphoma patient, Lindsay, shares her cancer journey from searching for a diagnosis to adjusting to her new mantle of ‘cancer survivor’.

10 Body Signals Warning Health Problems

We should always be aware of what our body is trying to tell us. Here are ten ways our body is signaling that we should be more concerned with our health.


February

How Can You Best Support A Friend With Cancer?

What happens when someone close to you has been diagnosed with cancer? Here are some tips and advice to be the most helpful to cancer patients.

Confused About Immunotherapy and Its Side Effects? You Aren’t Alone

Patients need to be aware of the side effects of immunotherapy and vigilant in addressing them with their doctor as they can signal complications.


March

Practicing Self Care In The Time of Coronavirus – How To Mind Your Mental Health And Well-Being During Covid-19

While this is naturally a worrying time, there are many things we can do to mind our mental health and boost our immunity and well-being at this time. In this blog, you will find tips to help you navigate your way through this time of global crisis.

Health Fraud Scam – Be Aware and Careful

This blog explains what healthcare fraud is and provides tips to help you avoid falling victim to these scams.


April

Cutting Through the Panic in a Pandemic

A list of trusted sources to help you cut through all the information that is being share online about the coronavirus pandemic.

Fact or Fiction: Finding Scientific Publications Infographic

This infographic from our PEN Powered Activity Guide shares her tips for finding and understanding scientific publications.


May

Cancer, COVID, and Change

Cissy White gets used to her new normal dealing with having ovarian cancer during a pandemic, and the challenges and benefits that presents.

Diversity in Clinical Trials Benefits Everyone

It is critical that minority groups are included in clinical trials because, as the broader population, their data will affect the outcome of precision medicine for everyone.


June

Social Determinants of Hope

Casey Quinlan explains that everyone’s social determinants of health have been impacted by COVID19, but she is seeing strong signals of hope.

Music as Medicine: The Healing Power of Music

For cancer patients, music can be a powerful therapeutic tool in coping with a cancer diagnosis and treatment. Here is a list of some crowd favorites.


July

Dealing with a Cancer Diagnosis During COVID-19

There’s never a good time for a cancer diagnosis, especially during a global pandemic. Here are some recommendations from cancer treatment experts.

Quotation Inspiration: 10 Quotes to Inspire, Motivate and Uplift Cancer Patients

A list of 10 quotes and messages of hope and inspiration from patients that can bring you that much needed boost in your day.


August

Turning Your Home Into a Sanctuary

These days we are spending more time at home, so you need to feel like your happy place. Turn your home in a sanctuary in 5 simple steps.

Oncology Social Worker Checklist

Oncology Social Worker, Sara Goldberger, MSSW, LCSW-R, shares her checklist for resiliency during the time of a global pandemic.


September

The Nitty Gritty on Care Partnering

Casey Quinlan provides a short checklist that can be used in any patient-with-a-bedside-care-partner situation.

Are Cancer Survivors More Susceptible To Respiratory Illnesses When Air Quality Is Poor?

A recent study published examines the connection between air pollution and respiratory health among cancer survivors.


October

Patient Empowerment Revisited

In this Part 2, we’ll look at the role of peer to empowerment and explore whether the term “empowerment” is even the right term to use.

The Power of Journaling During Cancer Treatment

This article is meant to help cancer patients understand just how much journaling can help them emotionally and physically during their treatments.


November

The Caregiver Impact: A Vital Part of Healthcare

Network Managers, Carly Flumer and Sherea Cary, team up to discuss the importance caregivers and some quick tips for caregivers.

5 Ways a Patient Portal Can Improve Your Health Care Experience

This blog shares 5 helpful tips for utilizing your patient portal to the fullest.


December

“Wait, There’s a Good Cancer?”

Carly Flumer shares her thyroid cancer diagnosis story and what it’s like being told you have the “good” cancer.

Chronic Myeloid Leukemia (CML) Patient Profile

A patient story from a chronic myeloid or myelogenous leukemia (CML), an uncommon cancer of the bone marrow, patient.

We survived 2020! Now what?

I may be tempting fate by saying we survived 2020 when there are still 10 days left in the year as I write this, but I’m willing to take the risk. 2020 was officially “a lot,” with a global pandemic, a US presidential election marked by a level of vitriol not seen since the run-up to the Civil War, and systemic racism laid bare for all to see – not like it wasn’t plenty visible before, but now it cannot be swept under the rug anymore.

Not that everything has been dark and dire – medical science has long pursued “real world evidence,” the idea that all the data collected over the course of the delivery of medical care across a population could be synthesized into better medical treatment. The COVID pandemic pushed that concept onto the actual dashboard of care delivery, accelerating treatments and vaccines at a speed not seen before in the history of science.

But that same real world evidence data synthesis also made clear just how much systemic bias – gender, race, socio-economic status – is baked into healthcare systems and healthcare delivery, in the US and globally.

As we drag ourselves across the 2020 finish line, I’d like to present some pros, some cons, and some open questions we’re left with as we move into 2021.

First, the cons:

  • The world is drowning in a misinformation flood that prevents rational decision making about issues related to public health, civil rights, and even what facts are – figuring out how to combat this will take massive, concerted, global efforts
  • The global economy is a hot mess – the real downside here is how the fortunes of the ultra-wealthy have grown during the pandemic, with most of humanity left to figure out how to keep themselves going during shutdowns and job loss, along with loss of health coverage through their employers if they did lose their jobs
  • Any thought that humans are Earth’s apex predators should be completely erased by now – nope, viruses and bacteria rule the planet’s roost, we’re just along for the ride, with every other living thing
  • Systemic bias and racism are totally a thing – it’s up to us, all of us, to work together to erase it from medicine, from science, from civil society (this is actually a “pro” opportunity, too)

On to the pros:

  • Science has moved at light speed in the face of the pandemic – SARS-CoV-2 emerged in late 2019; the virus’ genomic profile was published in January 2020, making scientific study of transmission and possible treatments easier
  • Development of vaccines to combat the novel coronavirus happened within a calendar year – the usual timeline on vaccine development is 5 to 10 years
  • The world has been able to watch science happen in near real-time – as someone who tracks #epitwitter and #medtwitter and #EmergencyMedicine has gotten a front row seat to how medicine, and the science that informs it, isn’t a white-coated academic process, it’s a battle against time involving uncertainty and human cognition – “here’s what we know right now” is as good as it gets, moment to moment; adding those moments together is what reveals the scientific basis for vaccines and treatments

The open questions we’re taking into 2021:

  • How long with vaccine immunity last? That’s a question only time and data can answer.
  • How can we humans finally recognize that we’re a species, not separate groups of [insert ethnic or national identification here], and start working together to solve human problems? Like, say, income inequality and racism?

You’ll be hearing me again on all of the above through 2021. If you have any ideas on either of those “open question” bullets, hit me up on the Twitters at @MightyCasey.

Here’s to all of us surviving 2021, too.

Health Equity: Is There a Paradigm Shift Underway?

Spurred by the most recent PEN #PatientChat on Twitter, on Nov. 13, 2020, it felt like a good time to explore what appears to be a paradigm shift in the American healthcare system toward health equity. The phrase paradigm shift was coined by philosopher Thomas Kuhn, forming the core of his magnum opus, “The Structure of Scientific Revolutions,” published in 1962 and still widely referenced in all kinds of places, including my good buddy e-Patient Dave deBronkart’s work.

2020 has been a year with many surprises – “surprises” in the sense of “oh good grief what now?” – with one of the most welcome being what looks like an actual shift in thinking within the healthcare system that health equity actually needs to be a thing, versus just “a thing we talk about at meetings.”

The CDC defines health equity as every person having the opportunity to live at their full health potential, with no one disadvantaged from achieving that potential because of social position or other socially determined circumstances. In other words, your social determinants of health should be the same as everyone else’s, no one should be left behind in that “life, liberty, and the pursuit of happiness” deal due to economic or cultural differences. That’s health equity.

The signals I’m seeing in the health policy and health system design and delivery circles I hang out in on an average day are strongly indicating that the ivory towers of our healthcare system have started to wake up to how very inequitable our health system has been, historically. In my lifetime, I’ve seen countless groups earnestly discussing this issue, doing what I call “admiring the problem” without any clear framework for a system-wide fix. But the times, they are a’changing?

Some of the strongest signals I’ve seen:

  • Health Affairs, the peer reviewed journal that the Washington Post calls “the bible of health policy,” published a post by editor in chief Alan Weil, “The Social Determinants of Death,” where he said, “It is not enough for health care institutions to stand against racism or with those who protest it. The test of the day is whether those institutions will use their power to fight racism. Will they cede wealth and power accumulated over decades to those who have been excluded? Will they engage in meaningful dialogue designed to break down barriers to a well-functioning society—one in which people engage in authentic relationships and learn of their shared humanity? If no one else is leading that dialogue, will they initiate it and include others as equals? Will we?”
  • The American Heart Association put out a call to action on racism, noting that the COVID-19 pandemic had made health inequity all too visible in the impact of the pandemic on communities of color, and specifically mentioned the police killings of George Floyd, Breonna Taylor, and multiple others as reminders of systemic racism in America. “Several principles emerge from our review: racism persists; racism is experienced; and the task of dismantling racism must belong to all of society. It cannot be accomplished by affected individuals alone.”
  • The American Academy of Pediatrics published a guide on how to talk to children about racial bias, noting that “parents may better face today’s challenges with an understanding of how racial bias works in children, as well as strategies to help them deal with and react to racial differences.”
  • The American Medical Association announced a policy recognizing racism as a public health threat, including “the new policy requests AMA to identify a set of best practices for health care institutions, physician practices, and academic medical centers to address and mitigate the effects of racism on patients, providers, international medical graduates, and populations. It also guides the AMA’s position on developing and implementing medical education programs that generate a deeper understanding of the causes, influences and effects of all forms of racism—and how to prevent and improve the health effects of racism.”
  • AcademyHealth, a leading health services research organization, centered health equity and issues of systemic bias and racism in its 2020 Annual Research Meeting. They’ve announced a racial equity strategy for their work that builds on what the org has already started on diversity and inclusion, noting that the dual pandemics of COVID-19 and racism signal a clear opportunity to assess their own values and actions, and to spur values and actions in alignment with health equity across the health services research landscape. “The challenge for a field that sees itself as impartial and unbiased is how to act to confront the reality of systemic, embedded racism as well as other forms of discrimination and challenge our assumptions about exclusion and inclusion, and the very idea of ‘unbiased’ science.”

There’s an opportunity here for patient advocacy community leaders to take a look at who’s at our tables, and on our leadership teams. Commitment to diversity, inclusion, and ending systemic racism isn’t just something that the healthcare system needs to tackle – we all can do our part. I’ve committed to recommending BIPOC (Black, Indigenous, and People of Color) patient advocates for leadership opportunities, and to point out the lack of BIPOC people in any advocacy group I’m part of, if that’s the case.

Nothing about us without us” means ALL of us. Let’s work together to make this paradigm shift deploy fully.

Growing Up (As a Patient)

For people who find themselves on the receiving end of a diagnosis – a chronic condition, or cancer, or a rare disease – during childhood, the transition from “kid” to “adult” can include making transitions from pediatric-wing medical specialists to adult-medicine specialists for their particular condition.

This transition from child to adult can kick off while the young patient is still a minor, given that states can allow people under 18 (minors) to block access to their medical records once they reach 12 to 17 years of age – it varies state to state, with federal law (HIPAA) taking precedence if state law is silent on minors’ ability to block access to their records by their parents. A good overview on federal law side of this is in an article on VeryWellHealth, HIPAA Guide for Parents and Patients.

In this early transition-before-the-full-transition phase, a kid’s relationship with their parent(s) will be a core driver of whether a partnership between parent and child is central to that child’s care journey. Also, intellectual capacity of the kid/patient is a factor, one which will likely be well established prior to that kid reaching adolescence.

OK, that’s a basic scene-set for arriving at the “I’m 18, now what?” decision tree. As a freshly 18-year-old person, you won’t be expected to just shift immediately to a different set of clinical folks – you’ll get help from your pediatric clinical team in transitioning into a new care framework under adult medicine.

The Society for Adolescent Health and Medicine calls this transition phase “the purposeful, planned movement from adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.” In an article in JAMA Pediatrics, the process is outlined this way:

  • Time the transition by opening discussions about what it will mean with both the patient and their family, starting around the time the patient turns 12
  • Get everyone on the care team involved: patient and parents, obviously, but also nursing, care coordinators, social workers, case managers, transportation services, everyone participating in the patient’s care
  • Parents: ask your kid’s pediatricians when they typically kick off the transition discussion, and ask other pediatricians about their transition process, too; work with your kid and the pediatric team on a goals list for the transition itself, and work that list as the transition proceeds
  • Patients: work with your parents and your clinical team on learning how to be a equipped, enabled, empowered patient – what resources do you need, what peer support communities would they recommend, how to figure out health insurance coverage, how to manage your care plan, along with who to ask for help in those areas

Often, turning 18 means heading off to college – even in a pandemic, for some – and finding out what resources are available in your college’s town or city will be a critical step in that transition. Work with your clinical team on identifying the right medical staff for your “college care team,” since relying on the student health center is a very your-mileage-may-vary exercise. I speak from long-ago experience, but the Washington Post says things haven’t changed much, and the pandemic has revealed all kinds of gaps there.

Be proactive – as a kid/patient, and as a parent – to ensure you prepare for this big transition, and move into adulthood with a plan for your ongoing medical needs in place. Live life to your fullest capability – it’s the only one we’ve got, so let’s live well, shall we?

The Nitty Gritty on Care Partnering

For those of us who are sometimes patients, and at other times care partners, it can be useful to have a checklist to make helping a friend or family member navigate cancer treatment, or treatment for any other medical condition.

Here’s a short list that can be used in any patient-with-a-bedside-care-partner situation. If you have any ideas for things that would be good to add, hit me up via @MightyCasey, or shout out to @Power4Patients, on Twitter.

Here we go.

  • Make sure you – the care partner – have been named in your patient buddy’s Advance Directive as the person who can speak for your friend when they can’t speak for themselves due to intubation, anesthesia, or loss of consciousness. Here’s a handy link with downloadable forms to create an Advance Directive in all 50 US states.
  • Since you’ll be speaking for your friend in situations where they can’t speak for themselves, it’s critical that you know what their wishes are in scenarios from “coming out of anesthesia” to possible life support situations. What are your friend’s wishes? These are sometimes tough conversations, since facing mortality isn’t something humans are naturally wired to do. Two tools that can help you and your friend figure out the what-ifs for their wishes are Engage With Grace and The Conversation Project. Pick one, get started.
  • Do you have access to your buddy’s patient portal? Most EHR software platforms have “share” utilities where you can share your record with a care partner. Get that organized early in the care partnering process, so you can be able to answer questions about medications and patient history when your friend can’t speak for themselves.
  • Speaking of medication lists, make one. It can be as simple as a notes file on your phone, or a printed sheet that you can refer to, and copy, for anyone who needs it. Update it as/if medications are added to your friend’s list. Make sure you have dosages and timing for all of them on that sheet or in that note file, too.
  • Is surgery involved in the treatment plan? If so, make sure you and your buddy keep a calendar of pre-op testing requirements – blood work, scans, and so forth. A shared Google calendar can be a great tool here, or you could go old-school and just use a wall calendar with large blocks to write on each day.
  • Will you need durable medical equipment (DME) during the treatment and recovery process? DME is stuff like wheelchairs, walkers, knee scooters, woundVAC systems. You can either buy or rent this gear. Pro tip: Amazon and Walmart pricing on this stuff is much less than from a traditional medical supply house.
  • On that supplies front, there might also be what are called “expendables” required: bandages, wound wraps, bandage tape, wound packing material, and so forth. Another pro tip: if you need to buy this stuff, Amazon is the medical supply house with all the best deals. What costs you $40 at the local drugstore will cost you $8-10 or less on Amazon.
  • Will home health care be part of your friend’s recovery? Working with the Nurse Care Manager at the hospital or health system where your buddy’s getting care, get a list of reputable home health agencies in your geographic area, and interview them. Asking questions about how they coordinate care across nursing, occupational therapy (OT) and physical therapy (PT) sessions. Recent personal experience here is that a home care agency that has a system in place for “who’s on next” and “when are they coming” that’s left in the patient’s home, useable by them (the patient) and the home care crew is who you want to hire.

Care partnering with someone isn’t something to be taken lightly – if a friend asks you to do it for them, it’s a mark of how much they trust you. If you’re someone facing a Big Medical Adventure, figure out who you trust enough to walk with you through that adventure, making decisions that align with your wishes when you can’t speak for yourself. It’s one of the most human acts of kindness you can perform, care partnering.

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.

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.