Tag Archive for: MightyCasey

Growing Up (As a Patient)

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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?

It’s a Misinfo-demic Out There

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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

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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.

Access To Healthcare As A Human Right

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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

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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

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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

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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.

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

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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

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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.

To Open-Kimono, or Not to open-Kimono? That is the Question.

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“Enthusiasm for a cause sometimes warps judgment.” – William Howard Taft

When someone finds themselves on the receiving end of a diagnosis for something like cancer, the first thing they want is information. After that, they want someone to talk over that information with who will help them process it.

As much as the shared decision making process is discussed in the clinical community, most of the teaching, and learning, required for shared decision making happens outside the clinic. Google searches, community conversations, face-to-face or digital support groups – all of these help the person facing the diagnosis figure out how to make those decisions.

This leads to a conundrum for every patient who finds him/herself confronted with something that requires complex decision-making, like cancer: how much do I share, and with whom? How do I know who I can trust with my medical information?

Thankfully, the clinical side of the house has gotten savvy about social media. Many doctors, nurses, and other medical pros have started recommending online groups to their patients as resources; my good buddy ePatient Dave even credits his primary care MD, Danny Sands, with saving his life by referring him to an online forum for kidney cancer patients when Dave was diagnosed with Stage IV cancer back in 2007.

However, the individual patient still needs to decide exactly how much, and what, to share with other people beyond their clinical team, be it online or in person. That requires a set of decisions of its own. Here are the considerations:

  • Is this a public forum? If so, I recommend only making connections with individuals, and then taking any discussion to a private setting. In other words, if it’s a Public or Closed Facebook group, don’t put your diagnosis in a comment, or a post. Ask general questions, such as “does anyone know what to expect from [chemo cocktail]?” or “who knows anything about [type of surgery]?” Then, invite community members who answer to move the discussion to email, or a phone call.
  • Who owns this community? For those who are new to online patient community membership, it can be a big surprise to find out that a number of patient communities are funded by industry. It’s important to dive in a little bit on who’s running the forum, even in a Facebook group. I’m not saying that all industry money is dirty, but I do recommend knowing who’s paying the bills before you start sharing personal health information.
  • Does the community have clear standards of conduct? This goes beyond just “don’t flame people,” this should also include rules about recommending any specific medical treatments, and about talking up non-scientific “options” (code for snake oil or quackery) for addressing whatever health issue is the central focus of the community. There also should be clear “what happens here, stays here” rules about disclosing anyone’s personal information – health status, contact information, anything – outside the walled garden of the community.

If you’re looking for a cheat-sheet on patient communities, my previously-mentioned buddy ePatient Dave deBronkart has put one together that’s pretty comprehensive: Patient Communities – a starter list.

How much, and what, you disclose about your health issues is up to you. You will have to be very open-kimono (gown?) with your medical team, but be careful how much, and to whom, you get open-kimono with outside of the clinic. Patient communities can be hugely helpful – just make sure you know you can trust that community to honor your privacy while helping you make big decisions about your health, and your life.

A How-To On Reading Scientific Papers

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“Be skeptical. But when you get proof, accept proof.” – Michael Specter

That quote is from Denialism: How Irrational Thinking Hinders Scientific Progress, Harms the Planet, and Threatens Our Lives, where New Yorker staff writer Michael Specter examined the distrust of science that’s turned discussion of scientific topics into a potential minefield. Some good examples of that minefield are climate change, and childhood vaccinations.

Anyone interested in scientific progress – full disclosure, I’m in that group – needs to understand the ideas being explored in scientific papers, the dispatches from the front lines of scientific thinking and discovery. To arrive at that understanding, you have to be able to understand what you’re reading, and I’ll be the first to admit that isn’t easy.

Scientific papers are written by scientists, for scientists, and follow a set of rules and formal structures that can feel like they’re designed to prevent any understanding by the average Joe/Jane “just plain human.” In this post, my goal is to help anyone interested in, but not formally trained in, science tackle reading – and understanding! – an article in any scientific journal.

10 steps to scientific (article) understanding

  1. Check the source

    • What journal is publishing the article? Check Beall’s List, and if the journal appears there, you can stop reading – it’s a fake journal.
    • Who is the lead author, and what organization or institution is s/he affiliated with? If it’s an established university or research institute (University of Chicago or Scripps Institute, for example), keep reading.

  2. Read the introduction first, not the abstract

    • The introduction will reveal the Big Question, the one that the research project worked to reveal the answer to. For instance, an article in the Christmas 2017 issue of The BMJ reports on research into the effects of pet ownership on human biomarkers of ageing; the introduction clearly lays out the Big Question as “ we examined the prospective link between pet ownership and a selected range of objective biomarkers of ageing proposed for use in large scale population based studies of older people.”

  3. Write out your own summary of what the research was examining

    • This will give you a grasp of why the researchers wanted to ask the Big Question, and a framework for assessing what their answers to that question are.

  4. Identify the null hypothesis

    • The null hypothesis could really be better termed the “nullifiable” hypothesis, since the purpose of the research project is to nullify the hypothesis that there are no differences in possible answers to the Big Question.
    • An example of a null hypothesis is “the world is flat,” which is what Copernicus worked to scientifically disprove a while back. He was successful, but there are some people who still reject his conclusions. (Warning: opening that link might be hazardous to your sanity.)

  5. Look at the approach, and the methods, used in the research study or experiment(s)

    • What did the researchers do to answer the Big Question? What specific experiments did they run?
    • Sketch out diagrams of each experiment or data crunch.

  6. Read the results section of the article

    • Look at the written results, as well as all charts and figures related to those results.
    • What are the sample sizes? Really small sample sizes are a red flag.
    • What results are listed as “significant,” and what as “non-significant”? If you want to totally geek out on this topic, this post will make your geeky day.

  7. Do the results actually answer the Big Question?

    • Using your own judgment, do you think the study authors have answered the question asked in the introduction?
    • Do this before you read the paper’s conclusion.

  8. Does the conclusion make sense, in light of everything you’ve read and evaluated while going through the paper?

    • Do you agree with the conclusion?
    • Can you identify an alternative explanation for the results in the article?
    • What are the next steps the authors see emerging from their research?

  9. Read the abstract at the beginning of the paper

    • In light of the work you did in Steps 1 through 8, does the abstract line up with what the authors said their research purpose was?
    • Does it fit with your own interpretation of the paper?

  10. What are other scientists saying about the paper?

    • Have other scientists written about this paper?
    • What other research is referenced in the paper?
    • Have the authors of that research weighed in on the paper you’re evaluating?

Reading, and understanding, scientific papers takes practice. It’s also fun, if you’re a science nerd, or just interested in new scientific discoveries. And it’s work worth doing, because the more you know, the more likely it is that you yourself might make a discovery that makes a difference.

Storytelling and Medicine

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“Tell me a story.”

That’s something that any adult who’s spent time in the company of kids will have heard. Stories are how humans connect with, and make sense of the world, in childhood and beyond. Storytelling is how people communicate. “Here’s who was there, here’s what we did, here’s how we felt, and here’s what happened.” Language evolved to help humans tell stories.

When people are in an exam room, or a hospital room, their story is what matters most to them – their symptoms, their pain, their hopes for relief – and what is most important to the doctor or nurse hearing that story. Turning that patient story into a story of what to do next, and what might happen after that, is the clinician’s purpose in the relationship.

A medical history is a story

When you tell your story in the exam room, you really want the person listening – the doctor, the nurse, the physician assistant – to hang on your every word, right? Of course, the necessity to document that story in an EHR (electronic medical record) does mean that, too often, your audience will be multi-tasking, but that’s just a fact of 21st century life. The important thing is that your story is heard, and recorded, so that your health condition is properly addressed.

Have you ever prepared your patient “story” ahead of a healthcare visit? If you’re a medical professional, what storytelling skills have you worked on to make sure your patients understand, and can take action on, your treatment recommendations? Being face to face with another human person in this most human of settings is a great opportunity to put all your human-storytelling skills in play.

Storytelling 101 (in healthcare)

There are five elements to a good story:

  • What’s happening?
    • Why is the patient in the office/clinic, and what does the clinician already know about the patient – is there past history, or is this a new relationship?
  • What’s the conversation like?
    • In the case of the patient, that’s what his/her body is “saying” via symptoms. For the clinician, that’s asking clarifying questions about the “what your body is saying” conversation to correctly identify the source(s) of the patient’s condition.
  • Description. What are they see­ing, hear­ing, touch­ing, tast­ing, and smelling?
    • This is what both sides of the dialogue above contains: descriptions from the patient, repeated and clarified by the clinician, to nail down the specifics of what brought the person to the office/hospital.
  • Inner Monologue.What are they thinking?
    • This is where body language and non-verbal cues come in for the patient/clinician storytelling duet. How each side of the conversation picks up on cues from the other’s body language, eye contact, and facial expression adds nuance and contact to the clinical “story.”
  • Exposition / Narrative.What other infor­ma­tion does the nar­ra­tor (in this case, both patient and clinician) want us to know?
    • Have all the bases been covered, with all the symptoms described and all the questions asked by both sides of the story?

Taking your show on the road

In this case, the “road” is the clinical conversation. Preparing for the two-way clinical storytelling session is important for both sides of the equation (by the way, this is true in telemedicine and electronic messaging, too).

For patients, putting together a tight set of action and description items ahead of the conversation will help the clinician they’re telling their story to ask the questions that serve up the exposition and narrative that leads to the best treatment options.

For clinicians, be aware that body language and eye contact can reveal additional information about the patient’s condition. That means actually making eye contact, and directly observing the patient’s body in action (the physical exam!), to make the right diagnosis and treatment recommendations.

Presence of evidence

The science of medicine runs on evidence. There is an emerging practice of teaching storytelling principles in medical education that is serving up evidence that story is a key piece of the medical relationship. I’d say it’s foundational to shared decision making, since the information exchange that is central to that practice is all about the stories that both sides tell each other. Doctors are writing journal articles about storytelling, too, which add to the “science” of story in medicine.

Tell your story well. Your life (or the lives of your patients) depends on it!

Health Cost Literacy: “How much is that?”

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The title of this post asks the $3.5 trillion-with-a-T question in American healthcare: how much is that? It often feels like healthcare is split into two camps, with one side working away feverishly to find more cures for life-threatening conditions like cancer and ALS, while the other side is working at an equally feverish pace to figure out just how many millions of dollars they can make of the latest breakthrough.

A recent example of this Tale of Two Healthcares was the roaring headlines about the first FDA-approved gene therapy, Kymriah (tisagenlecleucel), for leukemia. The business side of healthcare was ecstatic, pricing the drug at $475,000, which made Wall St. happy, and Novartis (the drug’s maker) ecstatic. The patient side of healthcare? Not so much.

Kymriah is an extreme example of healthcare pricing, but even trying to get a CT scan can turn into a trip down the rabbit hole, if you try to find out before the scan how much it will cost you. Asking “how much?” can seem like shouting down a well the first time you do it – you’ll hear an echo, because the person you’re asking will likely say “how much?” right back, in total shock at the question. However, asking questions is how we get answers, right?

Here are tips for asking “how much is that?” and getting meaningful answers:

  • Find out if your insurer has a cost-estimator tool. If so, use it. For everything required for your care. You’ll need the insurance billing code for the test, scan, or procedure (called the CPT code), so get that from your doctor’s billing office.
  • Use online price-check tools like Clear Health Costs or Fair Health Consumer to reality-check the pricing information you get from your insurer’s cost-estimator tool.
  • When your doctor refers you to a lab for testing, or an imaging center for scans, ask if they know what the cost is. They likely won’t at first, but the more of us who ask the question the more they’ll want to know the answer.
  • Call around to labs and imaging centers in your insurer’s network to ask about their cash price for the test or scan that’s been ordered for you. Depending on the cash price, you might be better off not using your insurance, and actually paying cash for the test or scan. If you have a high-deductible plan, you’ll need to assess which medical services are worth going off-the-books for if you haven’t yet met your annual deductible.

I know a lot about “how much is that?” because I was uninsured for five years after my own cancer treatment ended. I discovered that asking the question got me the answers I needed, and I could choose the providers that could give me a cash price for the mammograms and follow-up oncology services I needed. I’ve continued to use the simple question “how much is that?” every time a doctor has ordered tests or scans, because even with insurance, you’ll wind up with a bill for some part of the service.

If we all work together, asking “how much is that?” before receiving any medical service, we’ll start to shift the system, and the culture of healthcare. It takes a village, not just to raise a child, but also to change a status quo.

It’s your turn. Start asking.

Fact Checking 101: Health Literacy in Real Time

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There’s a medical miracle every day, if you believe headlines on popular media sites. If you just read those headlines, cancer is cured daily, as are hepatitis C, and a host of neurological conditions. Dive into the stories, though, and you’ll all too often find the “in mice” red flag, meaning that scientific experiments have indicated that mice are having terrific outcomes from whatever substance is being touted. Humans? Not so much.

Information flows at the speed of life – thank you, Internet – but information does not always equal factual truth. Which is where fact checking comes in, and what I’ll be offering tips on here. As a journalist, I’ve hunted down confirmations on stories for years – here’s a quick primer on doing it for your own health/science literacy building.

  • Snopes.com: this site is the granddaddy of online myth busting. They have a dedicated channel for health news, which is definitely a good first stop to fact check a headline touting a “cure” for an illness or condition.
  • Sense About Science USA: the US arm of the UK-based Sense About Science and AllTrials, this site takes a deep dive into advocacy and literacy building for both the public, and professionals, around medical science. They’re in the process of creating an AllAccess Patient Guide on clinical trial participation, and transparency in reporting on all trials, which will be published in the fall of this year (2017).
  • Health News Review: the editors and reviewers behind this site are professional healthcare journalists dedicated to reading and scoring the reporting on health science in major media. I think of them as Politifact For Healthcare – they don’t issue “pants on fire” or “Pinocchio” warnings, but their 5-star review system is rigorous, and great reading.
  • FactCheck.org and FlackCheck.org: these sites assess news stories and sources in many categories, from politics to science to health policy. They’re produced by the Annenberg Public Policy Center at the University of Pennsylvania, and are great resources for fact checking in all news categories, not just science.
  • Retraction Watch: this is in the Super Science Nerd Journalist zone, covering the retraction of scientific papers around the world. There’s an old news adage about corrections being buried deep beneath the front page – that rule goes double in science publishing. A paper is published, and makes big headlines. If it’s retracted weeks/months/years later, there’s seldom a screaming headline announcing the retraction, leaving the untruth out there to be misunderstood and often misused.

Building your own health and science literacy is a process. Reading the latest medical science news is a starting point, but you have to add fact checking as a critical part of your learning curve. Then use the “see one, do one, teach one” method to help your friends and family build their health literacy, teaching them how to find and fact check the science news that matters – that’s how we all build healthy, science-literate communities.

Health Literacy – Bedrock of Empowerment

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The Internet is a wonderful thing. It helps people across the globe connect, communicate, and argue about everything from the Oxford comma to what’s really in a hot dog. Full disclosure: I’m all about the Oxford comma, and avoid hot dogs because I don’t like nitrites.

I come from the time before the Internet – in other words, I’m well over 50 – but as a journalist I embraced digital technology as soon as it arrived (for me, that was 1980), and have been using it to fact-check ever since. Which is why I view health literacy as the foundation of patient empowerment, and helping build health literacy as the mission of empowered, activist patients worldwide. And why I view the Internet as our best tool for health literacy building, personal and community.

Because health literacy requires a grasp of basic science, it can feel challenging to someone who didn’t love biology class, or who found themselves floundering in physics lab. That’s where patient communities really shine: helping newly diagnosed folks figure out what the heck that was that the doctor said, or how to read a lab report, or why [insert condition here] even showed up in the first place.

Here is what I consider the Top 3 Things for yourself and your family’s health literacy building:

  1. Know your risks. What is your family’s health history? Is there a line of folks who lived to 80+, or a family history of heart disease and stroke? Did you grow up in an area with a lot of industrial pollution? What’s your personal health history (asthma, sports injuries, etc.)? Knowing these things can help you, and your clinical team, set up an “early warning system” to monitor your health status.
  2. Write it down. Once you start gathering information, write it down. You can keep it as simple as a composition book, or as complex as a spreadsheet. The key is to keep records that you can share with your doctors, and your family, to keep everyone informed. There are online services, including mobile apps, which can help you do this. A good overview of that whole universe is on the MyPHR site.
  3. Read all about it. When you have data (the information from #1 and #2), you can start turning that data into knowledge. Learn, from trustworthy, science-based sites like Medscape, MedLinePlus, and com, what the straight scoop is on symptoms and treatments for pretty much any disease or condition that affects humans. Add Health News Review to your reading list for solid myth busting on the latest medical miracles (spoiler: they’re usually not miracles) by health journalists with years of experience. Bonus tip: if you’re looking for cost information on specific treatments, check out Clear Health Costs.

You now have three things to get you started. You’ll see more on the health literacy topic from me in the coming months, and I welcome your questions and topic suggestions. Let’s learn, teach, and share, together!