When I walked into the exam room, Jack started waving a bill at me. “You cost me $1,500!” he almost shouted. “Why didn’t you warn me about the price of that visit?”

When Jack called a few weeks earlier, I hadn’t been able to tell over the phone if he had pneumonia, the flu, or bronchitis, so I asked Jack, a retired medical colleague of mine, to come in to the office. As our health system’s finance office later explained to me, Jack’s new coverage was a high-deductible plan, and he had never before received a bill. My apologies and explanations were feckless. Jack observed ruefully, “I recovered from the bronchitis, but not from that bill.”

I was reminded of this costly experience as I sat through a presentation of the “transparency plan” that my employer, Massachusetts General Hospital, was rolling out at the behest of its parent organization, Partners HealthCare. This marketing campaign involved posting and publicizing patient satisfaction ratings for each physician, following the lead of many of our peer institutions. The transparency slide deck detailed several years of work, attention, and expense midwived by consultants and vendors — clearly a high priority for the system. But for patients? More than a decade of research has demonstrated that they depend surprisingly little on ratings when making decisions about their health care.

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So what kind of transparency do my patients really want from me and the health system? Topping the list is transparency about the cost of care I have arranged.

Diane, a hairdresser, dutifully filled the prescription I wrote for Symbicort, an inhaler used to treat her chronic obstructive pulmonary disease. At the next appointment, she mentioned the $500 cost and shrugged, “I figured that was the inhaler you wanted me to have.” In contrast, when Ron, a retired salesman, was told by a pharmacist that I had prescribed a $600 inhaler for his COPD, he exercised his consumer prerogative and walked out, shrugging off his shortness of breath until the next appointment.

I am not sure which outcome was worse — Diane poorer but less short of breath, or Ron breathing poorly but less short of cash. The brave ones like Jack come right out and ask, “How could you do this to me?”

But is it really my fault? Sure, I was the one who had used our system’s electronic health record (EHR) to arrange Jack’s check-up and click off the prescriptions for Diane and Ron. But I have no way of knowing how much the medical care I provide will cost my patients, and whether I might be inadvertently dispensing financial toxicity. This is due in part to every insurer having a different deal with the hospital and with pharmacy benefit managers, so making the connection between patient and cost is a nontrivial matter.

Mired in opacity, I cannot offer them any real transparency.

Are my patients expecting too much from me and my system’s electronic health record? There’s no question that EHRs, with their clunky interfaces, have changed the patient-doctor interaction, and not always for the better. But for the past decade, with a few clicks I have been able to show Diane her CT scans and answer her questions about the note her surgeon wrote after her operation. And since my health system recently joined its US News Honor Roll colleagues in using the Epic electronic health record system, Ron has watched me zap his prescriptions with smart-bomb precision to the correct CVS (CVS) pharmacy several states away, based only on his hazy recollection of the intersection.

When I ask my patients a clarifying question about their health, they often shoot me puzzled looks and lean across my desk to point at my computer screen. “You have my information,” they often chastise me. “It’s all in there, isn’t it?”

But the primary purpose of today’s electronic health records is financial management, not medical. My patients and I see the system’s financial health maintenance capabilities demonstrated daily. Before being ushered into the exam room, Diane had submitted to an insurance scan. In the exam room, as I ordered a test, the computer reprimanded me that, “This patient’s insurance company requires a diagnosis” in order to ensure payment to our health system. But regarding Diane’s out-of-pocket cost? Cybersilence.

These electronic systems are good at prioritizing the fiscal health of a medical practice or hospital, while remaining unconcerned about the need of patients and clinicians to avoid — or at least prepare for — big medical bills.

When large hospital systems find their financial health threatened, they are quick to reduce their own risk for financial toxicity by deploying “electronic diagnostics” on certain patients. The CEO of the Mayo Clinic, one of the country’s most prominent hospital systems, recently told his employees of the strategic need to “prioritize the commercial insured patients” in preference to those with Medicaid and Medicare. That’s a transparent priority.

Closer to home, my patients and I have seen the same reflex. When our system’s financial health was threatened by large losses in its recently acquired insurance division, our system’s chief financial officer transparently bemoaned the attractiveness of our hospitals and caregivers to our patients on Medicaid as “adverse selection.” Soon thereafter, our insurer was put under the electronic scalpel to trim its Medicaid cohort by 90%, followed by a public rebranding to complete its fiscal recuperation.

For the right kind of patient — meaning someone who will pay cash for their treatment — my electronic health record can put out the transparency welcome mat. Before Marcia could book an appointment from her home in the United Kingdom, the finance office asked me to itemize her appointments and procedures. Reviewing the subsequent price list, Marcia and I whittled down the tab. Her final bill, paid in full before she arrived, came within 5% of the original estimate — an impressive case of shared decision-making based on patient-centered transparency.

For my regular patients, I do the best that I can to avoid financial toxicity. I confess to them that I am blind and clueless about the cost of care, and warn them that they could risk some financial discomfort. En route to Diane’s $500 inhaler, I had halted my clicking and turned to explain to her, “We do have a lot of your information our system, but it can’t tell me accurately what inhaler is covered by your insurance or what the cost will be. If I call the pharmacy, they won’t or can’t tell me your costs or options. So I am going to start with Symbicort. You can check sites like GoodRx. If the pharmacist tells you that your cost is more than $50, please call my office immediately.” But later that day at the pharmacy, Diane, a line of people waiting behind her, panicked and paid. A medical error? Not exactly. A medical tragedy? Indeed.

Twenty years ago, the Institute of Medicine’s report on quality and safety in health care refocused the responsibility for reducing errors from the individual practitioner to the health care system. My requests for systematic responses to financial toxicity — calling the billing office to protest surprise bills like Jack’s, pleading with administrators for a rudimentary glimpse of medication costs — get nods of commiseration but no solutions. Everyone is busy.

But it’s not just busyness — it’s business. As Jack said, “If I had known what it was going to cost, I wouldn’t have come in.” Opacity pays the bills. And in the era of high-deductible plans, those bills are very personal.

What are other obstacles to easing financial toxicity? “It’s not available.” “It’s not technically possible.” And, of course, “It’s not allowed.” These objections are dubious and deceptive. The electronic health record I use contains extensive crosschecking systems to reduce or eliminate adverse drug reactions that might emerge from the prescriptions I write. It can and should offer at least rudimentary warnings to me and my patients about the cost of the tests I order or the medications I prescribe.

We could start locally. Even if my system does not yet generate real bills in advance, it could give Jack, as he took care of his co-pay, a guesstimate that his insurance “might not cover the facility fee of $____” for his visit. If electronic health records would embed drug pricing apps to access the patient information that’s already “all in there,” they could generate relatively accurate estimates of medication costs at the time of prescription.

Anything would be an improvement over the surprise bills that health systems like mine send after the fact, part of a coast-to-coast epidemic.

My large, successful health care system, alone or with colleagues, could take on the behemoths behind my screen, like pharmacy benefits managers, the duopoly of EHR vendors, and federal agencies, to make even a modest advance in the journey toward financial transparency for patients. But judging by the marketing slide deck that I endured, the country’s leading health care systems are more preoccupied with offering a sliver of faux transparency in popularity scores to entice prospective patients.

Meanwhile, clicking away in the digital darkness of my exam room, using my health care system’s electronic health record “as directed,” I epitomize the moral injury of modern medicine as I systematically dispense doses of financial toxicity.

We can do better, starting now. As my patients point out, it’s all in there, isn’t it? Remedying this is not a matter of possibility, but of priority.

Walter J. O’Donnell, M.D., is a pulmonary and critical care physician at Massachusetts General Hospital and Harvard Medical School in Boston. The views expressed here are those of the author.

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  • You are absolutely correct that this is an immense problem and with the assist of clinical analysts and coders from Epic etc. and they can do a fix for this neglected issue.
    Insurance websites, merged with epic, may need to be incorporated as well for their pharmacy benefits, costs, coverages etc. so you can alert the pt in advance or see what other drug option is affordable. Goodrx also has a website to determine costs of medications and options where to purchase them (if one chooses this option then they cannot utilize their insured pharmacy benefits) so, I see no reason that your EMR program cannot design a, may cost more money, program of this type or choose an EMR program that includes this, there are so many other EMR’s out there. Only then can those issues can be resolved and transparent.
    The part of my particular medical care, hospitalization billing, that is totally insane is balance/surprise billing from non-network providers from whom you have no say so in the matter!I have even gone so far as to write on my consent form that I want ‘no non-network providers’ and I still get balance/surprise bills from labs, physician’s I have never seen or met etc., whether it be a medical or surgical situation! That is SOOOOOO wrong and deceiving too especially if the facility I utilize is in network. Yes, I can go through an appeal process and wait for them to decline my appeal or reduce it a a medicare allowable amount and then get billed for the remainder, (hence balance/surprise billing) and even write to the state insurance commissioner to no avail! That needs to be fixed as well!

  • excellent….silly me…i thought the electronic medical record was all about improving my health care…..now i know .. it is all about finances

  • Very nice thoughts – a perfect description of what is wrong with medicine today.

    If you had a complete system, your EHR could show you the price of the drugs, tests, and the office visit filtered by patient insurance. What you are describing is a pretty standard functionality of any current relational database. Maybe your administration simply decided not to pay more for the add-on that would have filled in the tables needed.

    • Thanks for the comments, Allen and Ron and cuibono.
      Allen, you are right, such functionality was exploited a decade or more ago in every other sphere of our lives. I live in a high-tech mecca, but solving this for patients is the responsibility of my health care system and the IT vendor, and as outlined, they have a lot of higher priorities. Ron, wonderful that your system is a rare one that does this for prescriptions, but the big bills in the new world of high deductibles are for office visits and testing, and in the vast majority of cases, patients are not warned.

      cuibono – the majority of my patients whacked with these bills have Medicare as their insurer, and it was a government-led coalition that passed the HITECH Act mandating these EHRs that prioritized checklists and administrative functions over patient needs, so there are no saints nor single simple answers.

  • Our EMR provides cost of prescriptions before I hit “send” and therefore I have an opportunity to often choose another medicaton. And I most always try to utilize a generic alternative if one is available.

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