Cost of Healthcare Transparency Is Trust in the American System

Jessie Gruman is president of the Center for the Advancement of Health.

Trust is the glue that holds an open, democratic society together. A successful democracy depends on our confidence that professionals and institutions are competent, that both private institutions and government at all levels operate within the bounds of the laws, that an independent judiciary enforces those laws, and that a free press shines a light on any of these guarantors when they fall short.

And so, of course, trust has always been central to healthcare. We must trust doctors and hospitals if we are to benefit from the care they offer. Without trust, who would allow a surgeon to cut open his chest and fiddle with his heart? Without trust, who would take noxious medicines or suffer radiation burns to cure a disease whose symptoms she cannot detect? We patients don't know how these things work, but we are willing to place our lives in the hands of those who say they do and have licenses affirming it.

Unfortunately our trust in healthcare is also eroding.

Why? Advances in information technology make increasingly transparent our idealized vision of healthcare. For example, new evidence about what treatments work has led to documentation of how infrequently they are delivered appropriately. The ability of researchers to examine the data underlying new and competing claims also allows us to view flawed findings and scientists' conflicts of interest. Reports rating the quality of care offered by different hospitals, health plans, and physicians provide statistics to inform our choices but vary widely in reliability and relevance. Combine these with an active press, a 24-hour news cycle, the proliferation of watchdog groups, and commercial interests that manipulate scientific claims to support their aims. The result is a media environment infused with messages that tell us that our every action increases our health risks, that science is uncertain, and that healthcare professionals and institutions are not living up to their obligations.

This loss of trust is deeply disruptive. It leads us to devalue professional opinions of our doctors, nurses, and pharmacists and become skeptical about their recommendations. We begin to regard all information as equal; scientific claims bear the same weight as commercial claims and are regarded with suspicion or naive enthusiasm, depending on what suits our fancy. We can no longer sort the wheat from the chaff.

"But this is reality," one may say. "Doesn't such evidence point to the need for all of us to act as vigilant consumers of information and services? The responsibility is ours: we have to be careful; we have to become experts; we have to question everything."

Indeed, this new transparency reveals a more realistic picture of what is now required for each of us to benefit from healthcare. The lengthening of Americans' lifespan and improvement in quality of life made possible by impressive advances in scientific knowledge and technology can be realized only if we make informed decisions about our healthcare, modify lifelong habits, and manage complicated medical regimens—often while ill. We must learn how to test what we're told and when to challenge our care. Thus, the new transparency imposes new obligations on us as patients while at the same time making it more difficult to satisfy these obligations.

Such demands represent a radical change from the passive patient role that has been characteristic of Americans' traditional approach to healthcare. Acquiring the knowledge, skills, and motivation and finding the time to become effectively involved in our care is not simply a matter of picking the right information off one of the 1.3 billion health-related sites now online. It requires broad recognition of our role in the success of care and a commitment on our part and the part of all those with a role in healthcare to ensure that all who seek care have the opportunity to participate in it effectively.

In the meantime, however, many of us have become uncertain whether our doctors know enough to ease our suffering, whether the medications they prescribe will hurt us or heal us, or if our hospital is a safe place to be cared for when we are ill. And we aren't sure where to find reliable counsel on these questions. Over time we will adapt to this new reality: we will forge a more accurate understanding of what healthcare can do and what we must do. And with this knowledge, we will recover our trust, but that trust will necessarily be more measured, tempered by the newly visible promises, limitations, and demands of American healthcare in the 21st century.