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Health Literacy + Clinical Trials = Your Mileage May Vary

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

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

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

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

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

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

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

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

Let’s get to work.

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?

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.

What Does It Mean To Be An Empowered Patient?

The term “patient empowerment” is among the top buzzwords in health care circles, but as with many buzzwords, they can mean different things to different people.  The term is most often used to emphasize the value of having patients assert greater control over their health and health care.  WHO defines empowerment as “a process through which people gain greater control over decisions and actions affecting their health” (WHO 1998).  This shift is due in large part to the use of technology that facilitates increased patient access to information via the Internet, peer-to-peer sharing, consumer health devices, and mobile apps.

In a recent Twitter chat, I set out to explore what it means to be an empowered patient today.  The global participation of those who shared their views on the topic shows that patient empowerment is something of universal interest.

Seven Essential Components of Patient Empowerment

1. Information

Information is fundamental to the process of patient empowerment.  Rare disease advocate and parent, Anne Lawlor (@22Q11_Ireland) believes that “an informed educated parent is an empowered one.”  Patients make the best decisions when armed with the right information.  To make genuinely informed decisions about our treatment we must have access to the relevant information needed to make those decisions. “Being informed is key to empowerment for me,” says specialist palliative care social worker, Deirdre McKenna (@KennaDeirdre). “Accurate information, clearly communicated and an available space to discuss and explore options and choices.”

Research shows that access to the right information, at the right time, delivered in the right way, leads to an increase in a patient’s desire and ability to take a more active role in decision-making.  Open and transparent communication and access to a patient’s own medical records is a key driver of patient empowerment. Medical Director and Consultant Surgeon, Dermot O’Riordan (@dermotor) believes to truly empower patients “we should be aiming for the “Open Notes” principles of default sharing of all documents.”    As patient advocate and CEO of Medistori Personal Health Record, Olive O’Connor (@MediStori) points out, “the patient is at the very core of every single service they use – they know everything there is to know about themselves, in the home and outside of it. Yet patient records are not kept with them!”

The OpenNotes initiative began in 2010 as a year-long demonstration project, with 105 primary care physicians at three diverse U.S. health care centers inviting 20,000 patients to read visit notes online through patient portals. Findings from the study suggest that shared notes may improve communication, safety, and patient-doctor relationships, and may help patients become more actively involved with their health and health care.  Evidence also shows a sixty percent improvement in the patient’s ability to adhere to medications, a major problem with managing chronic pain conditions. What is key to the discussion on patient empowerment is that this initiative “demonstrates how a simple intervention can have an enormous impact, even absent advanced technology” (my emphasis).

2. Health Literacy

While access to information is a key driver of patient information, health literacy is  defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” (National Library of Medicine).  Health literacy should come before digital literacy. “Health literacy is crucial,” says healthcare analyst, Matthew Loxton (@mloxton), “and you cannot get empowerment without health literacy.” Soo Hun (@soo_cchsc), Programme Manager at the Centre for Connected Health and Social Care, believes “digital is a key aspect but health literacy, even basic literacy is a must. Not all things digital requires tech know-how but all health information requires basic literacy. An app for meds reminder is no use if a patient lacks understanding of why medication is needed in the first place or why they need to be taken promptly.  We spend too little time transferring knowledge to patients.”

This transfer of knowledge is crucial to the empowerment process, according to Olive O’Connor. “At the first point of contact with the patient,” she says, “education on how, what, why, where and when in relation to a condition or medication should be talked through fully. All other tools (digital, leaflets etc.) should come after the conversation which is key to empowerment.”

3. Digital Literacy

Cornell University defines digital literacy as “the ability to find, evaluate, utilize, share, and create content using information technologies and the Internet.”  It’s interesting to note that opinions vary on whether digital literacy is essential to patient empowerment. RN turned patient advocate and health activist, Kayoko Ky Corbet (@kkcorbet) doesn’t believe that “digital literacy is an absolute requirement, but the ability to find accurate relevant information, and understand the information is.” Breast cancer advocate, Jennifer (@vitalfrequencis) agrees that “digital literacy is not fundamental and should not be part of the equation. Empowerment needs to be across all socioeconomic groups. Otherwise…a whole bunch of patients may never be empowered.”

Dermot O’Riordan is convinced that “whilst it sounds nice to say that digital is not ‘necessary’ for patient empowerment, in practice it is going to be pretty tough to do it properly/completely without digital.” Transplant recipient and rare disease patient, Carol McCullough (@Imonlyslightly ) also believes “digital literacy strengthens the empowerment process.” She too points to “access to your medical information online” as a key component of the empowerment process. “Knowing your personal medical data is strength, as is education about your illness,” she says.

Maternity campaigner, SeánaTalbot (@SeanaTalbot) believes that “those with long-term conditions and access to technology have a better chance of accessing information and support.”  Indeed many patients have found in the online world of peer-to-peer healthcare an environment in which they are supported to become a more empowered participant in their healthcare. As I look back on my own empowerment journey, my progress was advanced step-by-step by learning more about my disease initially from doctors, then through Internet searches, and most helpful of  all  through patient peers online. Finding and being part of a patient community can be an important step on the path to empowerment.

4. Self-Efficacy

Self-efficacy, as it relates to healthcare, is belief in your ability to effect change in outcomes so that you can achieve your personal health goals. The patient empowerment definition which comes to us from the European Patient Forum describes empowerment as a process that “helps people gain control over their own lives and increases their capacity to act on issues that they themselves define as important.”

Developing a sense of personal control over your health is in itself empowering. The empowered patient is confident in their ability to manage their condition. When unsure about where to go or what to do next they will feel confident to ask questions of the healthcare professionals providing their care.  This confidence comes easier to some than others, and even the most confident may need guidance from their doctors in managing their disease. Endocrinologist, Iris Thiele Isip Tan, MD (@endocrine_witch) points out that “some of my patients are surprised when I teach them how to adjust/titrate insulin doses. Apparently not all MDs ‘allow’ this. Some need handholding because they get anxious about the responsibility.”

Digital leader and physiotherapist, Linda Vernon (@VernonLinda), believes “for authentic patient engagement to occur, we need to establish what the patient brings to the table, something akin to an individual, personal take on Asset-Based Community Development – perhaps we could think of it as Asset-Based Personal Development, supporting the patient to tap into their own internal, community or environmental resources to improve their health and wellbeing.  Engaging patients should be as much about exploring what they can do for themselves and to help the health and care system, as what we professionals can offer to the patient.”

5. Mutual Respect

The healthcare professional is the most important contact point for the patient and the system and (dis)empowerment often manifests in the patient/professional relationship. At the heart of the empowerment approach is seeing the patient-professional relationship as a partnership of equals.  Carol McCullough describes it as a reciprocal process of “mutual respect for what each person knows and being allowed to make informed choices. It is not about command and control.”

This is a partnership approach that seeks to balance clinician expertise with patient preference. It recognizes that while healthcare professionals are the experts in their knowledge of a disease, patients are the experts by experience. The empowerment process is about sharing both knowledge and experience to set new goals and learn with and from each other. Dr Kit Byatt (@Laconic_doc) agrees. “Many patients are experts”, he says, “especially rare disease patients.  I’ve learned from many in my career.”

Building better relationships and seeing the patient as more than ‘just a patient’ was a recurring theme in the Twitter chat. Elena Vaughan (@StigmaStudyIE), who is researching the impact of HIV-related stigma in Ireland, believes that “an empowered patient is treated with respect, involved in shared decision-making regrading care and treatment, and is not patronised. For people with chronic conditions, effective communication, continuity of care and establishing a relationship of trust is very important.” Sometimes, as ME blogger and patient advocate, Sally Burch (@KeelaToo) points out, “not all patients are lacking confidence to speak. The problem is being heard.”

Patient and community advocate, Triona Murphy (@Murpht01) advises doctors to get to know your patients as individuals.  “Know your patient!!…and their family,” she says. “No one size fits all! BUT there was/is still a culture of the ‘person’ stops at the door of the hospital and that person is now a patient.’”  As antibiotic resistance campaigner, Vanessa Carter (@_FaceSA) says, “I might be a patient but I am also a creative director by profession. No one recognises me on that level. They see me as an underdog.”

6. Shared Decision Making

This partnership approach allows for Shared Decision-Making (SDM) – the conversation that happens between a patient and clinician to reach a healthcare choice together. Examples include decisions about surgery, medications, self-management, and screening and diagnostic tests. There is ample research which suggests that health outcomes are better in patients who are more involved in decisions about their treatment.

In the SDM model, the clinician provides current, evidence-based information about treatment options, describing their risks and benefits, and the patient expresses his or her preferences and values. Matthew Loxton points to how seldom we have metrics to track whether patient goals are being met. “Yet this,” he believes, “is THE most important part of quality.”

7. A Facilitating Environment

Linda Vernon defines patient engagement as “activating the person’s inner assets and supporting them to make the best use of them.” Being supported is a key component of patient empowerment. Many patients would like to take more responsibility for their own health and care, given the opportunities and support to do so. Empowerment does not happen in a vacuum: it is a two-way process. The patient needs a counterpart in the health professional who welcomes the patient’s involvement and knows how to create an enabling healthcare environment. Kayoko Ky Corbet states she became an independent patient advocate when she realized most doctors simply do not have the time (and often skills) to take this facilitating role and promote shared decision-making that patients desperately need. As Patient Critical Co-op (@PatientCritical) puts it, “if you have a patient who wants to advocate for themselves, and become informed, you also need a doctor that respects the patient’s right to share decision making.”

Is It Empowerment or Participation?

Not everyone likes to use the term “empowerment”, as it implies that it is an authority given to someone to do something. “I balk at the idea that professionals can ‘give’ (usually on their terms) power to the powerless,” says Alison Cameron (@allyc375). “We need to create conditions whereby people can “empower” themselves.” Seána Talbot agrees that patient empowerment “doesn’t mean ‘giving’ people power.’ Rather it’s about ‘enabling’ them to recognise and use their power.”

Perhaps the term ‘participation’ (which is a more active state) is preferable? This distinction is important because empowerment cannot be imposed ‘top down’ (although it can be facilitated).  Sharon Thompson (@sharontwriter) believes that “patients should not be pressurised or need to be in a position of ‘power.’ It should be automatic that a patient is central and key to their care. Patients are automatically empowered when they are respected as being people who are entitled to understand and know about their care.”

Neither is patient empowerment about the patient taking full control or shifting responsibility to the patient.  “If the empowerment amounts to abandonment”, says Matthew Loxton, “then the patient’s health goals are not being met. Patient empowerment should never be an excuse for abandoning or burdening the patient.”

Rather, the empowerment approach, as defined by the European Patient Foundation (EPF) “aims to realise the vision of patients as ‘co-producers’ of health and as integral actors in the health system.”  Caregiver Reinhart Gauss (@ReinhartG) agrees that “patient advocates want to work with not against doctors – to share experiences and to grow in knowledge.”  Vanessa Carter is clear that “we still want our doctors, but they are not there 24/7 so patients need the right tools to make self-care possible.”

Equally, it is about recognizing that there are degrees of involvement and not all patients wish to be ‘empowered.’  There is a spectrum of interest in wanting to assume an active role in care – from being passively receptive to fully engaged. It is up to the patients themselves to choose their own level of engagement. Pharmacist Chris Maguire (@chris_magz) sees this choice as the essence of empowerment. Patients “get to decide how much they want to look into things and take control. Or they want to be guided on the journey and have trust in their healthcare providers. But the key is that they decide the level of interaction and are not dictated to.”  Kayoko Ky Corbet agrees that “true patient empowerment should be about helping patients get involved at their highest potential or at the level they choose.” However, she says “it’s also important to keep the option of involvement open. Ideally patients should get opportunities to change their minds to participate in decision-making later.”

Empowerment as an Ongoing Process

Empowerment is a non-binary, non-linear process. Your needs may change over time. You might feel empowered in a certain context, but disempowered in another. Healthcare communicator, Michi Endemann (@MichiEndemann) makes the distinction that “talking about empowerment as a healthy person is quite different than talking about it as a patient.”  As patient advocate, Rachel Lynch (@rachelmlynch) puts it, “it can be quite tiring being empowered when all you want to be is well.” A sentiment echoed by Kathy Kastner (@KathyKastner), founder of Best Endings, who clarifies how “to me ‘empowered’ assumes I’m feeling physically and mentally up to the task of ‘being engaged’. I’ve seen powerhouses who cannot bring themselves to take responsibility for their own health.”

Mental health advocate and co-founder of #DepressionHurts, Norah (@TalentCoop) calls attention to the fragile nature of empowerment. “Even the strongest can quickly feel disempowered by a deterioration in health,” she says. “Fear disempowers. Sometimes it’s a case of ‘can’t’ not ‘won’t.’”

For those who feel ready for a greater degree of participation in their healthcare (and that of their family and loved ones), Jennifer advises that “being willing to self-advocate, along with self-confidence, communication skills, compromise, research skills, and relationship building” are some of the key traits and skills you need to become an empowered patient. Terri Coutee (@6state), patient advocate and founder of DiepCjourney Foundation, adds that “empowered patients do their research, ask questions, go to appointments organized, and take a friend to help listen.”

Barriers to Patient Empowerment and Overcoming Challenges

What are some of the current barriers to involving patients more in their care? Jennifer points to a “lack of adequate time during the doctor’s visit (on both sides), language barriers, technology barriers, generation gaps, and cultural gaps.”  The solution?  “All solved by building good relationships,” says Jennifer.

Norah also calls attention to the technology barriers. “For older patients simple things like communication (hearing), or uninformed changes are extremely disempowering; as is over reliance on technology for a generation who may not have ‘tech’ understanding or access.”  Tim Delaney (@FrancosBruvva), Head of Pharmacy at a leading hospital in Ireland highlights the fact that “in acute hospitals we treat huge numbers of elderly people whose engagement with social media and new technology is lower. We need to design technology that meets their usability needs AND use whatever suits them best be it old tech or new.” Soo Hun agrees that “the tech savvy few have quicker and better access to health information and therefore can have choice and autonomy. To reverse that we need to make technology ubiquitous and make health information and choice easily accessible.”

Whilst Vanessa believes it should be “governmental policy to have digital resources in place, for example, disease specific websites / apps supported by health authorities,” Kayoko believes it can start with “tech-savvy advocates (like me) who could help patients learn to use simple digital tools.”

Matthew Loxton sees a core barrier to empowerment to be “the large knowledge/power gradients between patients and health care providers. Without access to their data, trustworthy sources of medical knowledge, and the power to execute their choices in achieving health goals, empowerment is an empty phrase.”  Triona Murphy echoes this systemic challenge by clarifying that “the whole system needs to understand the patient’s right to be equal partners in their care. IF that is what the patient wants.”

Sometimes the fear of being labelled a difficult patient can be a barrier to empowerment. “Some patients feel uncomfortable challenging the judgement or actions of their caregivers for the fear of being labelled as ‘difficult’, of offending staff and/or because of concerns of compromising their healthcare and safety,” says Tim Delaney.

Final Thoughts

Not everyone wants to be empowered in making decisions about their care, and not every doctor wants to take the time. Some doctors use medical terminology which is incomprehensible to patients, while some patients have low health literacy skills or come from cultural backgrounds that lack a tradition of individuals making autonomous decisions.  That said, Carol McCullough points out that while “not everyone may want to be empowered, for the health service to be sustainable, more people are going to have to take on more responsibility.”

Medical Doctor and Chair of Technical Advisory Board, Pavilion Health, Dr Mary Ethna Black (@DrMaryBlack) points to the inevitability of the shift towards patient empowerment. “Empowerment is an inevitable shift that is happening anyway, “she says. “We cannot turn back the tide or turn off the internet.”

Kayoko Ky Corbet agrees that we “must understand that patients making informed decisions is the ultimate way to reduce waste, pain and regrets in healthcare. It’s also morally the right thing to do!”  Patient Critical Co-op also believes in the moral imperative that “empowerment essentially means a group or society recognizing your right. Patient empowerment exists as an action patients can take to improve themselves, but the key to achieving that improvement is having a group, organization, or state enshrine and recognize those rights.” In fact, the Alma Ata Declaration defined civic involvement in healthcare as both a right and a duty: “The people have the right and duty to participate individually and collectively in the planning and implementation of their healthcare.” The Declaration highlights the collective dimension of empowerment and the importance of action towards change. By working together to think internationally and act nationally we can draw on each other’s experiences so that as individuals and as a collective we can work towards better outcomes for all patients.  To quote Terri Coutee, “When we gather our collective empowered voices, we feel a strong responsibility to give voice to others.”


I would like to acknowledge the assistance of Dr Liam Farrell in facilitating the Twitter discussion on which this article is based.

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.

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.

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.

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.

Health Cost Literacy: “How much is that?”

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

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

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!