Measuring — and Sharing — What Matters to Patients

How do you know how safe your hospital is? How do you know, in advance, what you’ll pay for care? How do you know the best place to have a major surgery or to deliver a baby?

In the not too distant past, answers to these questions were virtually impossible to get. You could ask around for recommendations from friends and family members. Most likely, you went where your doctor referred you. That’s changing; transparency tools jammed with information on costs and quality are proliferating, and the “Yelpification” of health care with online patient reviews has provided another source for patients to get information about providers. If you want to shop around for care, it is easier to be an informed and empowered consumer than it used to be.

But beware: not all of these tools are great. I’ve written before about “measurement madness” — literally thousands of measures are in use, and many of them aren’t meaningful or useful. Hospitals may find it burdensome to report on so many measures, and consumers may find the information difficult to navigate, interpret, and understand. Some sites are out of date or incomplete. Without a doubt, there’s room for improvement as the shift toward greater transparency in health care picks up speed.

What there shouldn’t be room for is to make information even less transparent and less available to patients and their family members. Yet that is exactly what could happen this fall if a proposed rule by the federal Centers for Medicare & Medicaid Services is enacted. As reported recently by USA Today, the plan “could halt the public disclosure of the ‘super bug’ MRSA, post-operative sepsis and surgical site infections, as well as accidents and injuries ranging from bedsores to respiratory failure after surgery.”

It is both baffling and troubling that the federal government would eliminate reporting of deadly infections, among other safety measures. Hundreds of thousands of Americans contract infections while in the hospital. It’s frankly not clear to me why a move to suppress reporting is even under consideration. And yet, instead of making health care quality reporting more patient-centered, the proposed rule change could in fact do the opposite: withhold life-and-death information that is undoubtedly meaningful to patients and their families.

Rather than getting rid of reporting requirements, the focus should be on ensuring that patients have easy-to-understand, accurate, relevant, and actionable information that can affect their decisions about their own health care. A report by the United Hospital Fund’s Quality Institute looked at 462 existing publicly-reported quality measures and found that few are relevant to what consumers are looking for in making health care decisions. Most quality measures focus on technical dimensions of health care — and use very technical language — that may not resonate with consumers. Available information is often several years old, and is rarely if ever provided in languages other than English. Information about specific health care conditions (for example five-year survival rate by stage for prostate cancer) and specific clinicians (for example, Dr. X at a particular hospital, rather than hospital-wide information) is largely absent. And yet, when it comes to quality and price information, that’s what patients want most. What they want to see is:

  • Condition- and Episode-Specific Information. In addition to seeing quality information about specific conditions like a particular type of cancer, patients want specific information about prices. It is much more meaningful for consumers to see the “all-in” price for a health care event — everything related to childbirth, for example, not just the delivery but also any costs associated with medication and a hospital stay. There are websites available (such as one developed by FAIR Health, called that enable consumers to estimate in-network costs and out-of-network costs for thousands of medical procedures in their geographic areas, and also to compare costs by provider for some common bundled procedures.
  • Clinician-Level Information, such as reputation, expertise, credentials, and history of legal action. These are either non-existent or hard to find in most transparency tools. Some of this information is not well tracked, such as hospital affiliation or information on malpractice claim results. When the information is tracked, it is often difficult to link it with information in other databases for the same providers related to price and quality.
  • Patient Experience and Patient-Reported Outcomes. Patients value the experiences of other patients. And patient experience is about much more than amenities like food and parking; it encompasses things like provider communication skills, respect, compassion, ratings by patients in similar circumstances, and quality of life. Patient experience measures coupled with patient reviews or narratives from sources like Yelp have also been found to be a promising source of information, but are rarely reported in a systematic way.

There’s a disconnect between what’s reported and what consumers are looking for: timely, easy-to-understand, relevant information that empowers them to make choices about where they get health care. Providers in New York have worked hard and successfully to reduce dangerous central-line associated bloodstream infections within hospitals and beyond. Why wouldn’t the Feds or anyone else want patients to know that — and then vote with their feet for hospitals with better safety records?

Patients are the most important health care stakeholders, not bystanders to their own care. Before taking information away from patients, policymakers should listen to and prioritize what patients say about the policies that affect their lives and their health.

By David Sandman, President and CEO, New York Health Foundation
Published in Medium on July 17, 2018