02/04/2016 12:02 pm ET Updated Feb 04, 2017

Holding Health Systems Accountable for Patient Value

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What's the most important question facing any patient with a life-threatening illness?

"Which treatment option is best for me?"

By most accounts, this is a good problem to have; giving patients a range of treatment options, and the ability to make an informed choice about the regimen that most directly aligns with their personal health priorities is fundamental to high-quality, individualized health care. But along with these new methods for treatment come difficult questions. Do I want the more aggressive or conservative therapy? Is my quality of life during treatment more important than returning to work quickly? Which course of action has more tolerable side effects? Can I afford the care I need?

As an epilepsy patient myself, I fully appreciate the importance of these issues. And I'm grateful to be able to work with my provider to determine which treatment option is best for me, assuming we both have all the available relevant information to help me make my decision. In policy terms, I refer to this simple, yet important concept as "value to the patient." That's why I've spent my career--from authoring the Americans with Disabilities Act to shaping the development of the Patient-Centered Outcomes Research Institute (PCORI)--making sure that patients have a seat at the table when decisions are made about what treatment options should be available to them.

Unfortunately, I am continually disappointed when I come across proposals from the halls of academia that seek to impose an "algorithm" for value of health care that seeks to mechanically determine what tests and treatments are worth giving to patients and which are not. Indeed, I was surprised--to say the least--to recently be quoted by Dr. Ezekiel Emanuel in a Huffington Post blog that promoted the use of "quality-adjusted life years" (QALYs) as a legitimate measure of value in health care decision-making. Dr. Emanuel's piece was accurate insofar as it noted that I strongly oppose the use of QALYs as a measure of value.

My concern for the notion of QALYs as a measure of value stems from the fact that I have seen patients judged and "valued" by a health care system via the sort of "one-size-fits-all" standards that are often praised by academics. While some theorists may extol the use of cost and QALY thresholds in England, for example, they consistently fail to mention that the standards are so controversial that public pressure forced the country to create a separate fund to ensure patient access to cancer treatments that otherwise would have been rejected. In the real world, QALYs are supremely unpopular.

Nowhere in this "value" discussion do we see an honest consideration of the real-world impact these proposals would have on the individual patient or the person with a disability for whom an innovation may have significant value. Yet nothing is more dangerous to the practice of patient-centered care than an academically pristine algorithm in the hands of a bureaucrat. I say it often and I'll say it again: no patient is "average." And proposals that set national policy based on judgments of average value pose a grave risk to patients and especially, people with disabilities.

To understand what's at stake for patients, it's necessary to consider the values that drive these ideological approaches to measuring value. Underpinning QALY-based policy is the concept that some lives are worth more than others. Dr. Emanuel alludes to this in a personal way in his 2014 article in The Atlantic entitled 'Why I Hope to Die at 75.' Dr. Emanuel declares that living past 75 "robs us of our creativity and ability to contribute to work, society, the world... We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic." He states that one policy implication of his position "relates to using life expectancy as a measure of the quality of health care." Others speak to this in a more direct way. For example, Professor Peter Singer, in a 2009 article calling for health care rationing, explained clearly why QALYs necessarily (and in his view, appropriately) place less value on the lives of people with disabilities.

While Dr. Emanuel's desire to die at 75 is certainly his choice, it isn't mine. As someone nearing that milestone, I sincerely hope bureaucrats are not given the power to make that choice for me! (Indeed, I hope to have at least a few more good years left.)

The challenges of using these types of value judgments in health care are well-recognized - and not only by patient and disability rights advocates like me. Even the American Society for Clinical Oncology (ASCO) recognized the shortcomings of QALYs as a measure of value. In developing its own value framework, ASCO decided against using QALYs:

"There are significant limitations to the application of QALYs, because individuals with the same illness may have different preferences for a health state. For example, one individual with advanced cancer may prefer length of overall survival (OS) above all else, whereas another might view minimization of symptoms as the highest priority."

Even those advocating for use of QALYs would not call such a policy "patient-centered." In fact, Congress explicitly pointed to QALYs as an example of a policy that is inconsistent with patient-centered principles when it created the Patient-Centered Outcomes Research Institute (PCORI):

[PCORI] shall not develop or employ a dollars-per-quality adjusted life year (or similar measure that discounts the value of a life because of an individual's disability) as a threshold to establish what type of health care is cost effective or recommended... The Secretary shall not utilize such an adjusted life year (or such a similar measure) as a threshold to determine coverage, reimbursement, or incentive programs...

As a lifelong advocate for patients and people with disabilities, I will continue to fight to advance the rights of patients to have informed discussions with their doctors about their options, and to decide on the course of treatment that works best for them. Congress spoke to the centrality of patient-centeredness when it established PCORI to advance a new model of research that centers on the needs of patients and respects patient differences. We should be building upon this foundation and extending it more broadly into health care delivery and decision-making. Otherwise, someday, 74-year-old Americans may be less concerned with their treatment and more worried that they'll be told by a bureaucrat that they're all out of QALYs.