"All your Prepared Patient essays do is complain about your health care and your doctors. That's why I don't read them."
Yowzah! Every week I work to vividly describe insights that might shine a little light on this project that patients, caregivers, clinicians and policymakers – well, the list goes on – share of trying to make health care more effective and fair... and then I am dinged for complaining.
Do I really complain? Not to be defensive, but I don't think so.
In general, I try to write short pieces that consist of observations about health care as I have experienced it as both a long-time patient and as a behavioral scientist who has spent her career looking at health care delivery and policy through the lens of that discipline. I also draw from surveys and interviews with hundreds of people who are in the same boat as I am: doing the best we can to benefit from our investments of time, money and energy to make the most of the health care available to us.
Some of my essays are reminders that knowledge alone is not sufficient to lead us to act. There are significant inconsistencies between how we think people should behave and how, for a variety of reasons, we actually behave. For example, it would be great if once we come to understand the evidence on any given problem, our desires and preferences would line right up and we'd act accordingly. It would also be ideal if when we learned about the value of vaccinations; taking medication as prescribed; getting the screening test when directed to – then we'd just take the right action. Alas. There is plenty of evidence – anecdotal and empirical – that we are not rational actors even under the best of circumstances, and that a variety of contingencies distract us from a straight and narrow path of evidence-based actions.
At other times my essays seek to remind frustrated clinicians, policymakers and health care innovators, that health care is a tiny part of what patients and caregivers do. How we behave and what we do meanders in different directions: We should ask questions but we don't; we should remember where we put all our health plan information but we forget; we should know where to find good information fast about whether our kid's black eye requires a trip to the ER on a Sunday evening. But we don't. People who are trying to fashion elaborate information and administrative systems to help us get good health care often forget to take into account the immense competition for our attention and our need for simple, practical information as significant factors that can undermine the utility of their efforts. The essays I write seek to point out places where our all-too-human characteristics have been overlooked in the quest to deliver more effective health care.
Some of my essays question assumptions experts have about the availability of resources to help patients and caregivers find good health care and make the most of it – that they exist, that we know we need them and that it is easy to find and use them. Acting as if price, quality and effectiveness information is easily available and relevant to us is misguided. Beliefs that if only we would participate in making shared decisions with our clinicians we would feel more confident and be more involved in our care are not enough. Most of us don't know whether or how to ask for this kind of help. But it's not just us: Our clinicians often lack the skills, time, awareness and data to actually engaging in helping us make good decisions. How can we apply the best knowledge about decision making, behavior change and technology to developing and disseminating resources that maximize investments and minimize disruption?
Patient and caregiver perspectives are rarely included when they are most needed. New models for health care delivery and high-tech tools to engage patients often fail in part because patients are seldom included in their mission, design and application from inception. Consumer-driven health care, patient experience surveys and redesign of health care delivery are just a few of the ambitious plans afoot for patients and families to take the lead in transforming health care. Note, for example, the attention paid to creating and promoting elaborate patient portals. Since many of us receive care from disparate clinicians, the simple lack of transportability of health information among providers is what erodes its utility and increases the burden of information coordination on patients and families.
Those of us who seek to improve health care are working to develop new ways of delivering it that aren't done in by the limitations of the old norms. It is terrifically complicated to try to coordinate the personnel, the training, the money flow, the resources, the monitoring – everything required to deliver good care while at the same time taking into account the increased role of patients and families. Meanwhile, most of us patients just want to get better, return home and not have to go to "patient college" to learn how to care for ourselves.
All of us are performing our roles under a good deal of pressure. You'll find no attributions of laziness or ill will or carelessness here; just a little wistfulness about the limitations of the human condition. While the time, urgency and performance demands are different for clinicians, administrators, patients and planners, everyone is feeling a lot of pressure and is doing their best to figure out what magic bullet or tweak will contribute to improvements so that all of us can live as well as we can for as long as we can.