Published on the Health Affairs blog on March 21, 2016.
Like most Health Affairs readers, I spend large parts of my day reading about, thinking about, and advocating for changes to health care.
The flaws with our system are beyond obvious by now: access can be limited or nonexistent; health care costs too much; quality and safety are not guaranteed; care is not well coordinated; and, disparities are stubbornly hard to erase. We compare ourselves to other industrialized nations—usually unfavorably—and wonder why we can’t be more like them, spending less and getting better outcomes. We celebrate mind-boggling scientific and medical advances but lament that they are too expensive and out of reach for many people. I could go on and on. We also have a long list of encouraging remedies and experiments to fix or improve this broken system. Some trendy things come and go, and the acronyms change (or multiply!), but a lot of genuinely promising approaches are being tried. Patient-centered medical homes, for example, have been touted and evaluated as one way to improve care and lower costs. Value-based insurance designs have been championed as a way to encourage more of the “right” kind of care and less of the “wrong” kind. Intensive care management programs are being applied with more precision to patients with complex and costly conditions. Care transition programs can reduce the likelihood of unnecessary readmissions. Payment reforms that put providers at financial risk are on the front burner. Again, I could go on and on. In theory, I support most of these innovations. I have given many speeches and written many pieces about the need for change and advocated for these and other reforms. It is impossible to examine the status quo and not to conclude that we can and must do better. Yet, I’m increasingly finding instances where I am not practicing what I preach when it comes to health care for myself or my family. There is a disconnect between what I do in my day job and what I do in my personal life. Let’s start with my primary care doctor, whom I’ll call Dr. C. Dr. C, who is one of a disappearing breed — a solo practitioner in Manhattan, still in the prime of his career, and with a very busy practice. There is nothing about his practice that resembles a patient-centered medical home or what modern primary care is supposed to look like. When you walk into his office, the first thing you see is a huge wall of paper charts; there is no electronic medical record (EMR) to be found. There is no such thing as a care team because there is no one but him. There is no after-hours access or open access; when he isn’t there, the office is closed. Period. And I’m pretty sure that he relies solely on his own experience and judgment instead of using clinical decision-support tools. Why do I keep going to Dr. C when his practice is so “deficient?” It’s pretty simple: he’s a good doctor. He knows me, my life, and my health history. When I finally get into the exam room after a long stint in the waiting room, he takes his time, and I never feel rushed. I feel like he genuinely cares about me. And without any data to support this, I believe that he provides high-quality care and that I would be in good hands if I did become seriously ill. All those things are more important to me than whether or not he uses an EMR or continues to use paper charts. The same kind of disconnect occurs when it comes to pharmaceuticals. I am pretty healthy and only take some common medications to manage my cholesterol. My insurer (its pharmacy benefits manager, really) has tried everything to keep costs down — they cajole and threaten me into switching to generics. They have tried to force me to use a mail-order pharmacy. They make me and my doctors repeatedly jump through all kinds of hoops—utilization review, medical review, and other layers—before they will approve these drugs. It seems like we need reauthorizations every few months. As a health care wonk, I know these might be considered efficacious and cost-saving best practices. But I really don’t want to be managed by a health plan that only seems interested in putting up barriers and cutting costs. I want to keep my health care between me and my doctor, and I wish they would stop hassling me and trying to deny me medications that are working. One last example of these disconnects: we health care wonks know there is an excessive amount of useless diagnostic testing that drives up costs without providing many benefits, and that might even cause harm. But when it comes to ourselves, isn’t there some comfort in knowing that our provider was “thorough” and checked everything, “just to be sure?” I have to admit that I might want that lab test, x-ray, or MRI just to know we’ve covered the bases. And if my own parent were near the end of life, I’m not sure I wouldn’t want everything possible to be done — even if the wonk in me knows it is to no avail. How should I feel about these disconnects between my life as a health policy professional and my personal life? The harshest judgement would be to say I’m a hypocrite. I prefer to simply conclude that I am human. I’m a firm believer in research and evidence. My work is about taking big picture, systemic views, and forming solutions that work on a large-scale population basis. Yet, I also recognize that health is among the most deeply personal and emotional matters; our hearts and our guts have to be taken into account along with evidence and policy. For those of us in the research and policy arenas, the lesson is clear: remember that policy is not abstract; it is about people. When setting policy, consider what we want for ourselves and our own families, and do unto others accordingly.