The Patient Empowerment Paradox… and Solution

— Jonathan A. Handler, MD, FACEP, FAMIA

The Problem

A common phrase — so common it seems clichéd to me now — is that patients need to be “empowered” to manage their own healthcare. The actual definition of “patient empowerment” seems reasonable:

A process in which patients understand their role, are given the knowledge and skills by their health-care provider to perform a task in an environment that recognizes community and cultural differences and encourages patient participation.”

However, I see some challenges with this in real-world implementation:

  • The patients understand their role. Who defines the patient’s role? Do patients define their own roles for themselves? I assume not, otherwise the patients would always understand their roles because they themselves defined it. If the healthcare provider defines the patient’s role, how can the provider know what the patient will understand and be able to do? Instead, perhaps the provider and patient should define the patient’s role together, as a team. If so… a typical doctor’s appointment lasts 15 (maybe 20) minutes. Studies suggest about seven (or more) of the 15 minutes are spent dealing with the electronic health record (EHR), doing things like documenting the visit. That leaves just eight minutes to talk with the patient about the main reason for their visit, collect the other information, do the physical exam, and discuss their plan with the patient. In most cases, providers need much more than eight minutes to do all that well. On top of all that, in the real world with that little time allotted for the visit, how often does it really happen that the patient and provider have a collaborative discussion to thoughtfully explore and agree upon an appropriate role for the patient?
  • The patients are given the knowledge and the skills by their healthcare provider needed to perform the tasks required by their role: In the eight allotted minutes, the patients will get the knowledge and skills needed? A physician has likely had four years of college + four years of med school + three to seven (or more) years of residency + perhaps fellowship training. That’s at least 11 years of study after high school, and a lot more in many cases. Then add on all the learning and experience from ongoing clinical practice. Now, consider the patient with far less healthcare education than the doctor. How will that patient learn everything needed in the allotted eight minutes? Enter the old bromide of “patient empowerment,” in which most of the responsibility for learning is assigned to the patient. “We’ll send you home with educational material! Here’s a seven-page printout on all you need to know about acetaminophen!” Or, “We’ll give you a series of educational videos to watch!” Or, “It’s all on the internet — just do a Google search.” Are these reasonable expectations for patients from all walks of life, many of whom are struggling to manage one or more illnesses while leading busy lives full of challenges?
  • Community and cultural differences are recognized: Presumably this does not mean making generalizations about a patient given their community and culture. Instead, maybe providers should discuss with patients who they consider their community, with what culture they identify, and then uncover relevant differences to be recognized. That’s even more to do in the allotted eight minutes…

To put things into even starker perspective, a recent study suggests that primary care providers would need nearly 27 hours per day to provide guideline recommended care. It seems that the laudable aims of patient empowerment cannot be achieved by our health system as it exists today. The health system has high costs, high process burden on clinicians, and an inadequate supply of providers to meet patient demand. The end result of these economic forces is the 15-minute visit. Recognizing the impossibility of achieving all the goals of the visit during the allotted time, health systems have sought solutions. Not surprisingly, the most cost-effective solutions often shift much of the work from the provider to the patient under the guise of “patient empowerment,” even though such solutions may not be the most effective. When compared to not having the solutions at all, many prove better than nothing. Often the solutions prove effective for just a few while having no effect on the rest, leading to a statistical improvement in the average. But is “nothing at all” the right comparator? Better than nothing does not necessarily equate to good, or even good enough.

The Patient Empowerment Paradox is that healthcare providers have shifted responsibilities to patients under the guise of “patient empowerment” even though the providers can actually best serve patients by shouldering more of those responsibilities, not less. Appropriate patient empowerment involves tasks that patients can and should do. Too often, empowerment involves tasks that patients cannot do or should not have to do. These tasks get transferred to the patient because, nowadays, accomplishing those tasks is even harder than it used to be and the clinician no longer has the time to do them on behalf of the patient.

Many things were better in the old days, when the primary care physician/provider (PCP) had more time to spend with each patient and shouldered a greater responsibility for each patient’s care.

In the old days, as a patient, when you needed a specialist, your PCP would pick up the phone and call a buddy who’s a specialist in the area and you’d be seen quickly. Now they write an order for a consultation and it’s up to you to call the office and try to schedule an appointment. Or maybe online scheduling is available, and it’s up to you to figure everything out. Do they take your insurance? Do they have an appointment within the next three months? Six months even? How far away is the office? Can you get there and back without getting fired from work? What if the answer to these questions is no? Should you see another specialist in the same field? If so, who’s good? Who specializes in your problem? Today, the responsibility for dealing with all of this is often left up to you, the patient.

In the old days, when you were ill and your doctor prescribed some treatment, it wouldn’t be surprising if the doctor called you back to see how you were doing. Today, the responsibility lies with you to call if things aren’t better. In the old days, if you did initiate the call because you still felt badly, even at night, you were reasonably likely to actually reach your doctor who knew you and could give you helpful advice. Today, if you call at nighttime with a problem, you first get a message telling you it’s your responsibility to figure out if your problem is an emergency, and if so, to call 911 or go to the emergency room. If you manage to reach someone, it’s almost never your own doctor. Very often, it feels to patients as if the on-call responder’s goal is just to make sure you can survive until tomorrow, leaving you with the responsibility of reaching your doctor in the morning (who may not even be working that day) to try to get definitive treatment.

In the old days, the clinician had time to look through your chart (even the paper one) to see if the “diet and exercise” task you were assigned to combat your high LDL cholesterol had been effective in reducing your risk of early death. Your doctor might have quickly recognized that medications are needed. Nowadays, clinicians can graph anything in a couple of clicks, but there’s so much data and so little time that clinicians commonly only review the latest results rather than trends over time for all relevant data. “Clinical inertia” — a euphemism for failure to provide effective treatment — may result from the failure to recognize that moderately abnormal findings have actually persisted for years. Its benign-sounding name whitewashes its deadly impact to patients: clinical inertia may contribute to up to 80% of strokes and heart attacks. Patients finally have access to their test results (thanks to patient empowerment), but too often the work now falls to the patients themselves to recognize concerning trends and fight for effective treatment.

Unfortunately, absent a willingness to substantially grow healthcare spending even further coupled with rapid growth in the supply of capable providers, substantially increasing the availability and time for each patient visit seems an infeasible solution. Reducing the process overhead (e.g., required documentation, etc.) can help, but that can only go so far because even zero overhead does not allow enough time for all that we hope to accomplish. Primary care providers already spend very significant “pajama time” after hours, before work and in-between patient visits managing their inbox, checking results, reaching out to patients to discuss results and answer questions, and handling emergencies. There’s just not enough time in the day for clinicians to optimally address all of their patients’ needs or all the expectations of our society.

The Solution

Solutions to the situation will likely come from technology and the enablement of new and better human processes by that technology. Unfortunately, solutions so far seem insufficient, mostly because they transfer too much responsibility away from the healthcare system and onto the patient, creating unreasonable demands of the patient that can’t be met.

Instead, we need to demand much more from technology, and from the people and processes that support it. We need to use the technology, people, and processes to relieve the patients of unreasonable responsibility rather than using technology to burden them with it.

To cost-efficiently target efforts to those who need it, and to effectively tailor efforts to optimize the likelihood of clinical success, we need to measure clinical performance. We need to know what is working and what isn’t. However, healthcare systems tend to measure performance only for the “mega-hit diseases,” like assessing diabetes control, hypertension control, congestive heart failure readmissions, sepsis bundle adherence, post-surgical mortality rates, and screening rates for certain cancers. Performance metrics largely ignore “the long tail” of medicine: the zillions of other conditions, each suffered by a smaller number of patients than the megahits, but in total amounting to half of all the patients who are suffering at any point in time. Health systems also typically measure performance only in the aggregate, with individual interactions assessed only when anecdotally recognized as far out of bounds (e.g. via error-reporting, malpractice allegations, or recognition of surprisingly bad near-term outcomes). Even though our healthcare system has been proven unreliable (perhaps especially when it comes to diagnosis), it still largely operates on trust. Unless explicitly discovered to be otherwise, health systems trust that every diagnosis is correct and every therapy is optimally effective. If health system leaders don’t actually believe that, they generally act as if that’s true.

We need to assess the quality of every clinical interaction, measuring at least the following basic clinical metrics for every patient, all the time:

  • Diagnosis
    1. Did the patient receive a diagnosis at all? Or did the patient receive a “diagnosis” code that most clinicians would actually consider a symptom or finding?
    2. Is that diagnosis correct?
    3. How long did it take to make the correct diagnosis?
  • Therapy
    1. Is the patient getting therapy for the diagnosis?
    2. Is that therapy the optimal therapy for that diagnosis in that patient?
    3. How long did it take to get the patient on optimal therapy?

First and foremost, we have to develop a scalable way to measure these basic clinical metrics at every interaction. Then healthcare providers need a system to track those metrics over time for each patient, and automatically and effectively intervene when patients are not rapidly and effectively progressing toward optimally achievable health. When we have this in place, patient empowerment will no longer mean healthcare systems offloading responsibility onto the shoulders of their patients. Rather, I (and every other patient) will be empowered to assign more responsibility to my providers, and I will have the objective performance metrics needed to continually evaluate if the healthcare system has provided me with the best possible care. Not whether it performs well for some other people, not how it performs on average across a population of patients, but how well (or poorly) it performs on me at every visit and on every day between visits. Only then will I actually be empowered to hold my providers accountable for providing the highest quality care, and I’ll be empowered to quickly and effectively change course if they don’t. Optimally, they’ll already be looking at the same metrics and making changes before I have to do it for them.

I have taken the first step on this path by developing a “diagnosisness” metric (Diagnosis Metric #1 above) that automatically rates from 0 to 100% how much of a “diagnosis” each diagnosis code represents in order to help determine if a patient has a diagnosis at all. For example, “abdominal pain” might get a diagnosisness value of 0%, “appendicitis” might get a value of 100%, and “abnormal abdominal CT scan” might get an intermediate value. We are in the process of validating the metric, and the metric is not yet perfect. However, if it validates and proves useful, it may represent a critical first step in achieving true patient empowerment.

When the diagnosisness metric development is complete, and if it is successfully validated, then I aim to post the code that generates the metric on GitHub, along with information about how it was developed. Then others can use it as they see fit. Over time, hopefully it will get better and better, perhaps with the help of others in the medical informatics community.

True patient empowerment can be achieved. Paradoxically, doing that means reassigning some responsibility back onto the shoulders of the healthcare systems. The right innovations in medical informatics can make that possible, and hopefully, with the diagnosisness metric, we’re taking that first step.

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