Finding the Funny When the Diagnosis Isn’t

It’s not easy hearing your name and [insert dread diagnosis here]. I know this only too well after having to find the funny in my own journey through cancer. Cancer is, however, most often a diagnosis that you fight to a defined end. What’s it like to find the funny in a chronic condition like multiple sclerosis, or HIV, or diabetes?

I have a number of friends dealing with the life-long aftermath of an MS diagnosis. One of them tipped me off to Jim Sweeney several years ago. Jim’s MS journey started with vision problems in 1985, he was officially diagnosed in 1990, and has been wrestling with the impact of that diagnosis – finding the funny most of the time – ever since. Jim’s body of work includes decades of live improv, and his one-man show “My MS & Me,” which you can hear on the BBC Radio 1 site. His MS has progressed to the point that he’s now in a wheelchair, and his public presence is mostly limited to Twitter, where his profile says he “can’t complain but sometimes do,” and YouTube.

Some other sterling examples of funny-or-die in managing chronic disease are Mark S. King’s fabulously funny My Fabulous Disease blog. Mark is HIV+, so he shares information, resources, and myth-busting about all things HIV in his posts and videos. He’s brutally honest about pretty much everything, with plenty of humor to soften the impact of what it’s really like to live with what anti-retroviral treatments have made a chronic illness, not the death sentence it too often was in the first two decades after the viral epidemic started in 1980.

Then there’s the “laugh out loud at the absurdity” Six Until Me site from Kerri Marrone Sparling, who writes about her life as a Type 1 diabetic. She covers everything from exceedingly random TSA security agent behavior when confronted with diabetes-related medical devices, to “pregnant while diabetic” to dealing with the emotional impact of living with a busted pancreas, all with a good dose of highly-readable snark.

How much courage does it take to laugh out loud, in public, at an incurable disease? Jim, and Mark, and Kerri certainly have courage – and comedy chops! – at the level required.

On the provider side, there are a number of docs who are breaking up the waiting rooms and wards.

The most visible of these comedic clinicians is Dr. Zubin Damania, a/k/a ZDoggMD  – “Slightly Funnier Than Placebo” was his tagline for years, before he shifted to “The Voice of Health 3.0.” ZDogg is a hospital medicine specialist who’s built an empire of snark over the last decade plus, some G-rated and some most definitely NSFW. His videos alone guarantee hours of laughter, and he’s one of the best users of Facebook Live around.

I’ve even found a scholarly article entitled The Use of Humor to Promote Patient Centered Care – be warned, though, that (1) it’s a “scholarly article,” meaning that it’s had all the laughs surgically removed and (2) they want $42.50 for it. You have been warned.

What’s my point here? I actually have two:

1. Laughter really is the best medicine.

Humor keeps us in touch with our humanity, and – unless it’s insult comedy, which I do not recommend in the health care arena, unless it’s insulting bad health care – it helps to comfort others in the same situation.

2. Patients and providers need to work together to help each other find the funny.

If you’re a doctor, don’t just say “you’ve got [insert dread diagnosis here], here’s the treatment plan, call if you have any questions, … NEXT!” Look your patients in the eye, and channel your inner comedian whenever it’s appropriate. If you’re a patient, connect with other people in your situation and see how they’re finding the funny. And help your doctors find their funny. If they can’t find it, you should find another doctor.

We all need to work together to break each other up. Laughter can comfort, can calm, it can even heal.

That’s real disruptive health care, no prescription required.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Biggest Question No One Is Asking in Healthcare

There is a really big question in healthcare, one that could shift the entire industry toward more patient-focused care while simultaneously driving down healthcare costs. Very few people even think about this question. In my experience even fewer, if any, of those who do ask it are involved in developing healthcare policy at the federal or state level.

This one question, if deployed, would start to solve the issues facing patients, clinicians, payers, hospitals – everyone involved in getting or receiving medical care.

What’s the question?

“How much is that?”

There are two things in play in the healthcare industry that fly in the face of marketplace sense. First is the lack of price transparency. Imagine going to the grocery store and seeing aisles upon aisles of food … without any prices posted.

“How much is that package of chicken breasts?” “That depends. How are you paying for it?”

My guess is that you wouldn’t shop in that store again. Healthcare is the only consumer-facing industry in the US that doesn’t have price transparency. Worse, if you ask for pricing, you’re often met with blank stares and “I have no idea” or, worse, “we can’t tell you because [insert name of health insurer here] considers that to be proprietary business information.”

Second is how the prices are set. You’ve heard of the medical billing codes – the Holy Codes that outline Medicaid, Medicare, and health insurance reimbursement payments for everything from lab tests to joint replacement. The price values for each of those billing codes is set by an American Medical Association (AMA) committee called the RUC: the Specialty Society Relative Value Scale Update Committee (for my personal take on the RUC, see this piece). The RUC meets behind closed doors, creates the pricing list for every single medical procedure and billing code, and then publishes it. This is not price fixing, since they hand the list to the Centers for Medicare and Medicaid Services (CMS) for publication, the AMA does not publish the list on its own.

Here’s a critical health policy issue: creating price transparency. One starting point could be requiring providers to know, and share, the cost of the services they provide to the customers they serve: THE PATIENTS. On the employer sponsored insurance (ESI) front, employers are starting to push for this with reference-based pricing in their benefits packages. On the state and federal policy front, there are a rising number of discussions about all-payer claims databases (APCDs) – for a really good explainer on that, I’ll point you toward this piece from July 2018 on the Health Affairs blog, “Transparency In Health Care: Where We Stand And What Policy Makers Can Do Now.” Both of these, either in tandem or singly, might accomplish what all the healthcare blue-ribbon committees and working groups in DC haven’t been able to pull off since the 1960s: downward pressure on healthcare costs.

In 2003, the late Princeton economist Uwe Reinhardt published an article in Health Affairs titled, “It’s The Prices, Stupid: Why The United States Is So Different From Other Countries.” Fifteen years later (on March 13, 2018 to be exact), WBUR in Boston published “Why Are U.S. Health Costs The World’s Highest? Study Affirms ‘It’s The Prices, Stupid’” – we haven’t made much progress since 2003.

Think about that as you evaluate your choices in the voting booth on November 6, and hold your representatives at the state and federal level to account after they take office. Whether you love the Affordable Care Act or not, you know that the healthcare system in the US must change, for the health of our families and communities as well as the financial health of our national economy.

And the next time you’re buying healthcare services, ask that really important question: “How much is that?” If you don’t get an answer, consider shopping in another healthcare store.

That could start bending the cost curve.

Reinventing the Clinical Trial: Start at Ground Level

If each of us humans is a snowflake, unique in our genomic makeup, where’s my snowflake medicine? I asked that question from the platform at the ePharma Summit in New York in 2013, and have yet to get an answer. The challenge for the bioscience industry is, I believe, the classic randomized clinical trial. That design goes through four phases:

  • Phase 1: a small group of people are given the drug under study evaluate its safety, determine a safe dosage range, and identify side effects
  • Phase 2: a larger group is given the drug to evaluate its efficacy and safety in a larger population
  • Phase 3: large groups – plural – of people are given the drug to confirm its effectiveness, monitor side effects, compare it to other commonly-used treatments, and collect information that will allow the drug /treatment to be used safely
  • Phase 4: the drug is marketed while study continues to assess long-term effects and efficacy

Of course, before they even get to Phase 1, there have to be both the idea for the new treatment, and animal studies to determine what the substance or compound under study might do to a mouse or a monkey.

Science isn’t easy. The phrase “trial and error” came out of science labs, with many trials running up against the error wall by Phase 2. Since bioscience companies can sink about $1 billion-with-a-B into getting just one drug to market, it seems that the traditional clinical trial has turned into a pathway to NOT making scientific discoveries that can benefit humankind.

Then there’s the whole “who’s in charge here?” question. Clinical trials are now a global effort, with US and European pharma companies testing new treatments in Latin America, Russia, and China to gain traction in those emerging markets while simultaneously developing me-too drugs for their domestic markets. So, who’s in charge, the US Food and Drug Administration (FDA)? The European Medicines Agency (EMEA)? A player to be named later? The answer to the question seems to be “all of the above,” which adds to the complexity of the clinical trial process.

As digital technology has made data easier to collect and share, it would seem that clinical trials would be a great place to start intersecting with the quantified-self movement. The shift to electronic health records, the widening adoption of all sorts of health tracking devices, and the rise of (relatively) cheap genomic sequencing should signal an ability to identify conditions, and populations, eager to participate in clinical investigations. But so far, it hasn’t.

What might challenge that stasis? In November 2013, three major pharma companies – Novartis, Pfizer, and Eli Lilly – announced via the White House’s website that they had joined together in a clinical open innovation effort. That page on the White House’s site is gone now – changes in Presidential administrations will do that – but here’s a direct quote from that announcement:

“In order to connect patients and researchers, Novartis, Pfizer and Eli Lilly and Company, are partnering in the U.S. to provide a new platform to improve access to information about clinical trials. The platform will enhance clinicaltrials.gov and will provide more detailed and patient-friendly information about the trials, including a machine readable ‘target health profile’ to improve the ability of healthcare software to match individual health profiles to applicable clinical trials. As part of the project, patients can search for trials using their own Blue Button data.”

Five years later, and we’re still stuck on the slow train when it comes to really reinventing the clinical trial.

I’m one of a growing group of people who think that the entire life-sciences process chain needs to be re-tooled for the 21st century. In my view, the best place to start that re-tool is at ground level, with the patients and clinicians who deal with challenging medical conditions daily. If a doctor has a number of patients who might benefit from some clinical study, why isn’t there an easy way to find a researcher looking into that condition? If a patient has an idea for a clinical investigation into his or her illness or condition, why can’t they find a researcher who’s interested in the same condition to team up and start a science project?

I can only hope that the regulatory agencies involved in life science oversight (hello, FDA!) can move beyond the aftermath of Thalidomide – for which epic disaster we’re still paying a price when it comes to the timeline for drug approval in the US – and toward a process of “all deliberate speed” that doesn’t forsake speed for deliberation. Both are necessary, neither should be more heavily weighted than the other.

We all can, and should, take part in scientific exploration into human life, and human health. Got an idea for a clinical trial? Share that idea in the patient communities you hang out in, and ask your tribe to help you bring that trial to life. To quote Arthur Ashe, “Start where you are. Use what you have. Do what you can.”

We’ve got to start somewhere, right?

Talking To Your Family About Clinical Trial Decisions

Hearing your name and the word “cancer” in the same sentence is a world-shaking moment. After getting a cancer diagnosis, telling your family about it is another big step, one that can be fraught with as much emotion as hearing that diagnosis yourself.

Once the emotional dust has settled, talking with your family about treatment options, including clinical trials, can raise the emotional temperature again. If your family is like mine, everyone has an opinion, and is more than ready to share it. Even in families where everyone is calm about big issues like this – I question that those families exist, but I’ve heard they might – talking about clinical trials as a treatment option means being ready to field questions, and guide the conversation.

The American Cancer Society has a great set of resources for people who are assessing whether clinical trials are a good option for their treatment. I’ll use some of those as a framework for a discussion guide you can use to walk your family through your decision to explore clinical trials for your cancer:

  • Why do I want to participate in a clinical trial?
    • Your reasons can be anything from “I want to try cutting edge treatments” to “my cancer is advanced stage, and I want to throw everything but the kitchen sink at it.” The key here is to have an answer ready to this question when you discuss treatment options with your family.What are the risks?
  • What are the risks?
    • Here’s another question you’ll want to gather answers for, for yourself, before opening a conversation with your family about enrolling in a trial. Your oncology team can help you put together a risk profile for trials, and further help you target the right trials via molecular profiling of your cancer.
  • Will my insurance cover the trial?
    • Federal law requires that most insurers cover routine costs of cancer trials. However, like so much about US health insurance, the answer can still be “it depends.” There’s a great tip-sheet on the National Cancer Institute’s site that addresses this topic. You, and your family, and your oncology team, will be working together to make sure your costs are covered, either by your insurer or the trial sponsor.
  • What happens if I’m harmed by the trial – what treatment will I be entitled to?
    • Here’s another “it depends” situation. Addressing harm to trial participants is an ongoing ethics issue in the US. The key here is to review all trial enrollment documentation fully – with help from a medical ethicist or legal eagle who’s not involved with the trial, or your oncology team – and have any potential harm scenario fully spelled out, including who will address the remedy for harm, and how that remedy will be delivered.

Having solid family support is a key factor in managing cancer treatment, and in thriving as a cancer survivor. Getting your family involved in your care by talking through your options and decisions with them will give them a sense of involvement in your care, and its outcome. They can help you through the down days when side effects have you feeling punky, and celebrate the bright days with you when scans show progress against your cancer.

Curing cancer is a team sport. You, your family, and your oncologists are all on that team. Work together toward a win, which often includes unlocking the power of precision medicine via clinical trials – which can become a win for other cancer patients, too.

Health Insurance and Cancer: Your Mileage (and Coverage) May Vary

Financial toxicity is the phrase used to describe the impact of the cost of treatment on patients. The NIH describes financial toxicity as “problems a patient has related to the cost of treatment.” No matter what kind of health coverage plan you have, if you get a cancer diagnosis you’ll quickly discover all the things you’ll have to pay for, from co-pays on chemotherapy infusion drugs to the intricacies of “co-insurance,” where an insurer will pay a percentage, usually 70-80%, of the cost, with the patient responsible for the remaining percentage.

Financial toxicity isn’t limited to cancer – ask any person with diabetes who relies on insulin to stay alive about that – but the cost of cancer treatments is high, and rising higher. Cancer patients are put in the position of having to decide whether they’ll get the treatment their oncology team prescribes, or if they’ll put it off until they have the money for it. Patient assistance programs at pharmaceutical companies can offer some help, but there is no guarantee that a patient assistance program for a specific cancer drug will help everyone who can’t afford the drug.

An NPR piece covered this last year, framing the story around a man with advanced lung cancer whose oncologist prescribed a new drug, Alecensa, for his treatment. Alecensa’s annual list-price cost is $159,000, with Medicare patients like the man in the NPR piece paying $3,200 per calendar year. The patient in the story was prescribed the drug in late 2016, but decided to forego filling the prescription until January 2017, to avoid having to pay $6,400 within 60 days for the treatment.

This is part of a pattern of cost shifting across the health payment landscape. Premiums for private insurance rose 170% from 1999 to 2011, far higher than the average increase in wages in the same time frame. Prescription co-pays also rose dramatically with the introduction of tiered drug coverage plans that passed more cost to the patient. For example, from 2000 to 2012, the proportion of individuals with a drug plan that had three tiers increased from 27% to 63%.

Exacerbating the immediate financial anxiety of negotiating for a treatment that could mean the difference between life and death, there’s the impact of medical bills on a patient’s long-term financial health. A Consumer Financial Protection Bureau report in 2014 revealed that almost 20% of credit reports had medical debt reported on them. In 2016, the Commonweath Fund noted that, “As of late 2016, 28 percent of U.S. adults ages 19 to 64 who were insured all year were underinsured — or an estimated 41 million people. […] Half (52%) of underinsured adults reported problems with medical bills or debt and more than two of five (45%) reported not getting needed care because of cost.”

I’ll put a face on this issue by introducing you to a friend of mine, Linnea Olson, who has been successfully beating Stage IV lung cancer for over a decade. Linnea has insurance coverage under COBRA, which is costly, but helps keep her alive by covering the costs of treatment that aren’t covered by the clinical trials she’s been part of over the years. She recently got a notice that her insurance had been terminated – the story on that is here, on her blog – which put her in the “high anxiety” zone, to say the least. That post is a very clear example of how financial toxicity impacts someone with cancer. Her situation lit fires across the cancer patient activist community, launching a campaign to get her coverage back. Four days later, she received word that her coverage had been reinstated. She shared that news publicly on her blog, too.

My point here is that this should not be way Americans are expected to deal with a cancer diagnosis – by facing the fight of their life while their financial lives are laid waste. The costs of treatment shouldn’t be the first thing someone has to think of when facing a life-threatening illness. The patient community is in sync on that. The oncology clinical community agrees that treatment costs, and financial toxicity, are in need of clearer discussion. The American Society of Clinical Oncology published a report in 2017 that included a recommendation that discussion of treatment cost and coverage “would […] facilitate rational discussions of efforts to use more cost-efficient regimens, use less expensive alternatives, or perhaps forego extremely expensive and toxic options that have little chance to provide meaningful benefit.”

I recommend that we keep advocating for more transparency in insurance coverage, and in the in-clinic discussion of the costs and benefits of cancer treatments. It also couldn’t hurt to advocate that our elected representatives craft legislation that makes that transparency a requirement, not an option.

Show Me the Evidence

A habit of basing convictions upon evidence, and of giving to them only that degree or certainty which the evidence warrants, would, if it became general, cure most of the ills from which the world suffers. ~ Bertrand Russell 

If you follow science and medicine headlines – which I do – you’ll find yourself wondering which headlines to believe, and which to discount. Do I believe that cancer has been cured after seeing that headline in a newspaper? No, because the headline usually skips mentioning that the “cure” was “in mice,” and only a couple of mice. But what about a headline that says a new screening protocol can catch a cancer that’s usually not discovered until it’s metastatic?

Prescription? Follow the evidence.

That prescription can be a challenge, since wading through the science behind the headlines isn’t a short and easy process. But you’re up to that challenge, since there’s a handy-dandy “How to Read Scientific Papers” post to help you navigate the science.

However, I’m not going to just say “go forth, and read science!” Here are two resources to help you figure out what’s real, and what’s just a shiny object, when it comes to the evidence behind medical treatments.

  • Cochrane Crowd is a new project from the folks at Cochrane, the global collaborative with the mission to systematically review the scientific studies that medical evidence is based on – Crowd puts you on the systematic review team. They have training modules to get you up to speed on understanding how to assess scientific studies:
    • Treatments can harm
    • Anecdotes are unreliable
    • Expert opinion alone is not enough
    • The role of comparison
    • Comparing like with like
    • The role of blinding
    • Size matters
  • Health Evidence is a database created and maintained by McMaster University in Canada, where anyone can search for evidence reviews, which are rated on a color scale. Wrapped around this database are a “how to use this” video tutorial, ongoing webinars, a comprehensive glossary (pack a lunch!), and workshops on using evidence in public health policy and decision-making.

If you’re new to the evidence based medicine discussion, I’d recommend starting with Cochrane Crowd, since that’s aimed at getting the public involved in evaluating the evidence alongside professional scientists. The presentation of information is laid out in slices, with the initial 7 training modules leading you into a couple of interactive training sessions with clinical trial , where you’ll

Health Evidence is a deeper dive, aimed at a professional audience, but presented in a way that anyone who can read at an 8th grade level can understand, and use.

Evidence is what the work of science is – forming a hypothesis, testing that hypothesis, and then proving or disproving it. Making the leap from “one mouse now has no tumors after we did this experiment on it” to “we’ve cured cancer!” is one that gets turned into clickbait headlines almost daily. But that linguistic leap does not represent actual scientific advancement.

Science is the slow, steady testing and retesting that happens in studies and trials across the globe. Once those studies and trials are complete, and reported in journals, the work continues to review those results against studies that look to replicate the results of the initial experiments. Then come the systematic reviews of all those experiments, and the assessment of whether what they’ve presented is evidence … or more questions that need to be answered. One mouse without tumors does not human medical evidence make.

Science is a process, and it’s always under review. The more of us who get involved, the more evidence will be proven, with less airtime given to unproven false promises. Get involved, because your life just might depend on it.

Patient-Centered Research: Is That a Thing?

Medical care is based on research. That was true in the time of Hippocrates, and it’s true in our 21st century lives. The scientific questioning that leads people to start experimenting and investigating something is as old as human intelligence – we’re a curious species, always trying to figure out the “why” on pretty much everything around us. Historically, the research that led to medical discovery has viewed people – the ones most often called “patients” or “subjects” in medical research – as just that: subjects in an experiment. That thinking has shifted over the last half century, though, particularly in light of the story of Henrietta Lacks, and the efforts of her family to have her recognized for the scientific contributions that are her “immortal HeLa cells” legacy.

Which brings me to my topic, patient-centered research, and the question of if that’s even actually a thing in 2018. I had two experiences recently that had me thinking of two aphorisms – or what the 21st century calls “memes”:

  • YMMV – Your Mileage May Vary, meaning that what you experience in a situation might not be what the guy next to you experiences in the same situation;
  • Objects in mirror are closer than they appear – a warning label that is engraved on side-view mirrors on cars in the US, Canada, India, Nepal, and Saudi Arabia.

My two recent experiences, one at a workshop meeting organized by the Robert Wood Johnson Foundation and AcademyHealth titled “Moving Patient-Centered Care Forward: How Do We Get There,” the other at the wrap-up meeting for a PCORI research project, “Defining a Roadmap for Patient Engagement in Imaging CER” (CER = Comparative Effectiveness Research), gave me some strong signals that the research community is waking up to the power of co-design, and people/patient inclusion in all aspects of medical research.

The RWJF/AcademyHealth workshop was framed around a series of four questions that asked how people/patients and medical providers could team up to make patient-centered care, and research into patient-centered care, a reality. The workshop was researcher and policy wonk heavy, with a patient-voice cohort of a dozen people. When I asked why it was still taking so long to get research discoveries implemented at the point of care, there was some pushback from the research folks, who thought I was saying that research should stop once something was known.

This reaction, which expresses frustration with the person/patient community for not “getting it” that research is a never-ending process – nothing in science is ever 100% known, everything is under constant review and challenge, which is how science works – is very frustrating to me, and to every other person/patient who is invited to participate in discussions like this. Person/patient-centered research that includes actual persons (the ones called patients) in the research process is something the patient community celebrates. What we WANT, though, is to see discoveries arrive in clinics and communities, not lie dormant in journals, where those discoveries become grist for more science, but not for actual practice. We’re looking to short-circuit Max Planck’s statement, “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.” The only way to ensure the patient community, and the research community, can communicate well with each other without misunderstandings is to spend more time in each other’s company, at workshops like this, learning how to avoid what I call “the lost in translation effect.” That’s the YMMV thing I referred to up-post.

My experience with the PCORI-funded research project, and the wrap-up meeting I attended the same week as the RWJF/AcademyHealth workshop, was the one where the object (patient-centered research as an actual thing) in the mirror was pretty darn close: co-designed and implemented research was visible, and the communication between the research team and the patient-voice team was less fraught with lost-in-translation. Since the group had spent more than a year working on this project together, the communication kinks had been worked out over time, and we understood each other’s point of view well. The lost-in-translation stuff we encountered early in the project actually helped inform our work, and our insights in how to better co-design research based on our experience.

The PCORI project was an example of what I was asking for at the RWJF/AcademyHealth meeting: include people-commonly-called-patients in the DESIGN of research projects and activities. Then enlist us to participate in the implementation, the analysis of study results, and the public dissemination of results – THAT approach will drive wider, faster adoption of new discoveries and processes. An additional benefit will be to start eroding public distrust of science as something that “elites” do, that the average human is somehow seen only as a lab subject.

So hey, research and policy folks – work on having people/patients on your team from the very beginning. In fact, if you want to kick off some from-a-new-perspective discovery, ask patient communities to help you create your research question, and define your null hypothesis. Amazing stuff could ensue!

Talking to Your Oncologist About Clinical Trials

You’ve gotten a cancer diagnosis. You’ve selected an oncologist as your partner, working toward “No Evidence of Disease,” or NED (NED is every cancer patient’s very best friend). Your and your oncologist are working up a treatment plan, and you want to talk about clinical trials as part of that plan. Should you kick off that discussion, or wait until your onc brings it up?

YES, definitely bring up clinical trials yourself, if your oncologist hasn’t started that conversation. If you’re not sure how to kick off that discussion, here are some tips.

  • “Just do it.” Lace up your mental Nikes, and just ask the question. Have some resource links handy at your next oncology team visit, or start the conversation before the visit via your onc’s patient portal. Start with the information on the Patient Empowerment Network’s Health Centers and Programs hub, take a dive into gov, or check out the American Society of Clinical Oncology’s Cancer.Net trials site.
  • There’s an article in the Journal of Oncology Practice, “Identifying and Selecting a Clinical Trial for Your Practice,” that talks clinicians through the process of selecting clinical trials for their oncology practice. Reading through that can help you craft some great questions, and open a productive conversation with your treatment team about clinical trials for your cancer.
  • The National Institutes of Health has a great tip-sheet for oncologists on how to talk to their patients about clinical trials. You can use that to frame the conversation you’d like to have with your own oncologist about your clinical trial options. I’ve often found that reading articles and tip-sheets aimed at the clinical side of the equation have helped me accelerate discussions with my own clinical teams about treatment options, for cancer and for other medical conditions.

When you’re dealing with a cancer diagnosis, you want to have all your options on the table, and make the most informed decisions possible. Opening up a dialogue with your oncology team about clinical trials early in the treatment process will give you the information you need for those “most informed decisions.”

Another reason to open those discussions early is to gauge your oncologist’s response to shared decision making, and participatory medicine. If your oncologist doesn’t welcome self-advocacy on your part, it’s better to know early in the treatment process so you can shift to another, more participatory practice.

You are the focus of your cancer treatment team’s work. Lead the discussions, share your perspective, and participate fully in your treatment planning. Opening the discussing of clinical trials is a great way to get your team on your page about treatment and outcome preferences, and to unlock the power of precision medicine.

Can we talk? It’s important.

“Tis impossible to be sure of any thing but Death and Taxes,”
~ Christopher Bullock, “The Cobbler of Preston”

With tax day coming up on April 15, most of us are focused on the second thing mentioned in that quote. Taxes are discussed freely – sometimes at volume! – in many social and community settings, with everyone having both experience, and an opinion, on the topic.

That other utter certainty of the human condition – death – is rarely spoken of in public, or private, spaces, beyond hushed whispers, or the pious prose of the funeral eulogy.

I’d like to invite you to change that paradigm. I encourage you to talk to others, particularly your family, about how spelling out what your ideal end of life scenario is, and writing it down for future reference. You don’t have to be actively dying to start thinking about what you’d like to have happen when that time comes. It can even be fun – really! – if you turn it into a game.

You might be surprised to hear that there are not one, but four, actual games available for this very purpose. Here’s the list:

  • The Circle of Life comes from Dying Matters and In the End Care in Britain. This card-based game is aimed at increasing public understanding of how they can plan ahead and make their end of life wishes known. The packs of cards were developed with the public in mind, and cover issues around planning ahead, conversations about end of life, and funeral matters.
  • The Conversation Game also comes from Dying Matters. The game consists of 36 cards, each carrying a short statement about the things people often cite as being important to them in the last weeks or months of life. One of the cards is a ‘wild card’, which aims to encourage the expression of more personalized preferences and prompt further or deeper conversation.
  • The Go Wish Game comes from the CODA Alliance. It’s also a 36 card pack, like the Conversation Game, and can be played as solitaire, in a Go Wish pair with someone who you want to be involved in and aware of your end of life wishes, or online in the Solitaire version.
  • Hello (formerly called My Gift of Grace) is a game that centers around the answers to questions in a booklet, which are then scored on cards. The game can be played by a multitude of players at the same time, with five being the game’s normal setup.
  • BONUS – Engage With Grace – it’s not a game, but it’s a great conversation starter. There’s a single slide for download, which you can use in any setting to get a conversation started. The slide has five questions that are the basis of starting a conversation on your end of life wishes, and how to get them written down and shared with the right people.

If you’re wondering whether playing a game on something like this is a good idea, the American Journal of Hospice and Palliative Medicine published an article in July, 2016, titled, “Can Playing an End-of-Life Conversation Game Motivate People to Engage in Advance Care Planning?” where the authors stated in the conclusion that “This pilot study found that individuals who played a conversation game had high rates of performing Advanced Care Planning (ACP) behaviors within 3 months. These findings suggest that using a game format may be a useful way to motivate people to perform important ACP behaviors.”

So … get your game on. You can play alone, or invite your loved ones to take part. Encourage everyone you love to figure out, and write down, how they want their last months, weeks, or days to unfold. And it’s way more fun – and important – than doing your taxes.

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

“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.

(Self)Knowledge = (Em)Power(ment)

“Promise me you’ll always remember: You’re braver than you believe, and stronger than you seem, and smarter than you think.” – A. A. Milne

Finding yourself sitting on an exam table, or lying in a hospital bed, can be scary. Annual well-check visits to your primary care doc are one thing, but if one of those visits starts you on a journey through the maze of treating a diagnosis of cancer, or Parkinson’s, or [insert name of life-changing condition here], you find yourself feeling pretty overwhelmed.

My mantra has long been “be your own best advocate.” I learned this from my parents, who were e-patients long before that term was even coined. When I started my own cancer treatment journey ten years ago, I sprang into self-advocacy mode even before I had a confirmed diagnosis. I asked questions, worked to understand the answers, pressed for clarification when I needed it, on a “lather, rinse, repeat” cycle throughout the months between mammogram the end of active treatment; that process continues to today.

Since I just got my 10 Year Cancer-versary mammogram today (January 11, 2018), I figured my January PEN post would be a great place to share some of my how-to on being your own best healthcare advocate.

Let’s start with the basics, questions you can ask in any healthcare setting when a nurse or doctor outlines an issue, and a treatment plan for that issue, with you. This is straight from the Institute for Healthcare Improvement and the National Patient Safety Foundation – they call it Ask Me 3:

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

This will work for anything from an upper respiratory infection to a badly sprained ankle to a hypertension diagnosis. It helps you learn more about the issue at hand, and opens up a dialogue where you can add information about your medical history, your family history, your preferences about medical treatment, and any concerns you have about treatment outcomes and side effects. e-Patient Health Literacy 101, if you will. The Ask Me 3 program link above includes some really superb health literacy materials, too. I encourage you to read through them, and to share them with your family and your community. I’m all about “the more you know” in healthcare.

If you want some e-Patient Health Literacy 201 questions to take to your next doctor’s appointment, I put together a handout I call the Must Ask List. I use this one-sheet constantly, at healthcare events where I’m invited to speak and in webinars where I share my thinking on patient engagement, health literacy, and health system innovation. Please feel free to use and share it – if you have questions you’d like to see added to it, let me know.

It takes a village to change the world. In the global village working to improve human health, it’s critical that we all share what we’ve learned, and look to learn from others with expertise in both the getting, and the giving, of medical care.

Doctors + patients x knowledge sharing = health and healthcare system improvement at light speed.

That’s my formula, and I’m sticking to it!

A How-To On Reading Scientific Papers

“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

“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!

Medical Bills, EOBs, and You

Medical bills are confusing, and often frightening. Even if it’s for something simple, the numbers add up fast, and to sometimes alarming levels. Add the Explanation of Benefits (EOB) documents you get from your insurer for the same clinical visit or hospital stay, and you can find yourself wondering how much you owe whom, and for what, exactly?

“Not A Bill”

This will be printed on all EOBs, and is the only sure way to tell which is an actual medical bill, and which is an EOB. However, an EOB can be confusing – other than that clear “Not A Bill” printed somewhere on the form.

This is one of the EOBs I got during my own cancer treatment. It’s for my lumpectomy, but the only way I’d know that is the dates on the form. The singular lack of information on what the EOB is for is one of the distinguishing characteristics of these forms, so knowing what the services were, and what your plan’s coverage is for those services, are important details. The numbers are indeed scary, given the Provider Charges of $50,231.25, and the Amount Paid of $0.00. Someone unfamiliar with EOB-ese might have a panic attack before getting to the important phrase “there is no liability on your part for these services” in Remark(s) Explanation 3.

“Statement of Account”

Here’s the summary bill from the hospital that covers the same services (my surgery), but this might only add to the potential for confusion.

The bill has slightly more detail than the insurer’s EOB, but not that much. It mostly seems to be to a series of magic incantations that take the starting amount – New Charges or Adjustments, $53,911.00 – and bring that down to an Amount Due of $50.00. My insurer paid $5,430.02, and there were Adjustments of $48,430.98, which leaves $50.00. On the one hand, hallelujah; on the other hand, what’s the story with that $48,430.98 “adjustment”?

If I didn’t have insurance, would I be on the hook for that whole $53,911.00? Probably, but it’s hard to know exactly. This is where the “chaos behind a veil of secrecy” that is healthcare pricing is most visible: hospital charges.

I learned a lesson from this bill, by the way: always ask for an itemized bill, not a summary bill. Ask for that during the admission process (if it’s a hospital), or at the medical office or testing facility during check-in.

Staying ahead of the healthcare cost curve

Here are my tips for figuring out your medical bills, and your EOBs, to ensure you get what you pay for, and only pay for what you get:

  • ALWAYS ask for an itemized bill, don’t just take a summary bill (the mistake I made with the billing for my own cancer surgery).

  • Review that bill, line by line. Make sure that it doesn’t have anything on it that you did NOT receive. Use CMS’s CPT code look-up tool to help you break down the blizzard of numbers. [CPT codes are the five digit service codes used by all medical providers; they’re in the column labeled Svc Code in the bill example above.]
  • Have your insurer’s Summary of Benefits documentation handy while you review the bill(s). That will be available on your insurer’s website.
  • Do not pay a bill until you get the EOB associated with those billed services.
  • Line up the EOB, and the bill, to make sure the dollars and the codes are correct.
  • Challenge any billed items that are for services you didn’t receive.
  • If services you received are listed as not covered by your insurer on your EOB, challenge that with your insurer’s customer service crew.

Yes, it takes work. And it’s a little crazy that the American healthcare system expects people, particularly sick people, to manage this blizzard of paper with scary dollar figures on it. But the only way to make sure you don’t pay more for your medical care than you should is to be proactive. It’s what empowered patients do.