Transparency: A Patient’s Right to Know

By Toby Cosgrove
May 17, 2013 | Commentary

A generation ago, the doctor always knew best. Medical decision-making was cloaked in secrecy. Medical charts and Xrays were handled clandestinely. And hospitals’ outcomes, volumes, and mortality rates were not available for general consumption—if the data were collected at all.

Today, we have access to all this and more. The era of transparency is upon us, and it’s redefining the way hospitals deliver care to patients. As health care moves from a system that rewards volume (by paying for every procedure) to one that rewards value (by paying for outcomes), transparency is not only the right thing to do, but also the pragmatic thing to do.

At Cleveland Clinic, transparency has become simply part of our mission, from patient-friendly electronic medical records to published outcomes to the disclosure of doctors’ industry relationships. The curtains have been pulled back, offering patients a clear window into their medical information.

When Cleveland Clinic patients visit their doctors, their medical charts are at the fingertips of every doctor and nurse they encounter—test results, blood pressure trends, X-rays and images, prescriptions, and allergies. It’s all there on the computer screen, open and available to see and discuss. When patients go home, they can sign in to MyChart and review all of the same information, as well as renew prescriptions, request appointments, and communicate with doctors’ offices—all without sacrificing the privacy and confidentiality that is at the heart of the doctor-patient relationship.

Access to personal medical information is just one part of transparent health care, though. Transparency must also include broader information that allows patients to make informed decisions about where to go for their care.

A patient coming to Cleveland Clinic for heart valve surgery, for example, should be able to find out how many valve surgeries we’ve performed (2,816 in 2011), how many were complex re-operations (786), and the associated mortality rates (0 for mitral valve repair and 5 percent for combined bypass and mitral valve repair, both below the national average). Patients should have access to similar details about lung transplants, hip replacements, supratentorial craniotomies, or whatever procedure they need.

Hospitals need to measure health outcomes for the thousands of conditions and illnesses we treat, and for every service we offer. We need to establish benchmarks. And we need to make these data public.

We’ve accomplished this at Cleveland Clinic by requiring all of our institutes to measure quality benchmarks, which are publicly reported every year in Outcomes Books that are printed as booklets and published on our website for the public to see. Every year these data get more granular and useful. Every year, our staff look at their data and say, “We can do even better.”

That’s the beauty of transparency. It holds us accountable. It makes us better. For instance, at Cleveland Clinic, because heart surgery patients who received blood transfusions during surgery were experiencing higher complication rates and lower long-term survival, strict guidelines were adopted to limit the use of transfusions. As a result of this new policy, in combination with other transparency initiatives—monthly outcomes reviews with
surgeons and a surgical checklist to limit postsurgical bleeding, among others—mortality rates for cardiac surgeries at Cleveland Clinic dropped from 3 percent in 2008 to 1.5 percent in 2012 (while the industry average sits at 4 percent). As another example, the rate of central line infections has plummeted from 8 per 1,000 patients to 1 per 1,000 in only 2 years due to careful review of outcomes data.

Gandhi said, “Truth never damages a cause that is just.” The same is true of transparency. In 2006, Cleveland Clinic became the first medical center in America to require all its doctors to disclose their trade and industry relationships on our website, where they can be viewed along with each doctor’s professional profile. Therefore, patients coming to Cleveland Clinic can find out if the doctor who prescribed them a medication or ordered a procedure is being paid to consult or give speeches for the companies making the drug or product.

Patients entrust us with their health and their lives. They are entitled to know the intimate details of their own medical records, to study hospitals’ track records, and to discover conflicts of interest among their caregivers.

Increasingly, patients are benefitting from greater transparency. Unfortunately, not every health care organization is joining the transparency trend. They won’t be able to resist for long, however. At a time when “big data” reigns in corporate America, the best institutions are realizing that the more patients know, the more they can participate in their health care; and the more patients participate in their health care, the better outcomes they’ll have.

 

DOI

https://doi.org/10.31478/201305g

Suggested Citation

Cosgrove, T. 2013. Transparency: A patient’s right to know. NAM Perspectives. Commentary, Institute of Medicine, Washington, DC. https://doi.org/10.31478/201305g

Author Information

Toby Cosgrove is President and CEO of the Cleveland Clinic.

Note

Authored commentaries in this IOM Series draw on the experience and expertise of field leaders to highlight health and health care innovations they feel have the potential, if engaged at scale, to foster transformative progress toward the continuously learning health system envisioned by the IOM. Statements are personal, and are not those of the IOM or the National Academies.

In this commentary, Toby Cosgrove, President and CEO of Cleveland Clinic, describes the integral role of transparency in health care outcomes, illustrating the benefits of Cleveland Clinic’s commitment to full transparency by describing improvements in cardiac surgery mortality and central line infection rates in response to careful review of outcomes data. His discussion touches on several concepts central to continuously improving
care, including the potential gains from:

  • Universal patient and clinician access to medical records throughout each phase of the care process;
  • Interactive, electronic systems that allow for remote prescription renewal, appointment scheduling, and communicating with clinicians;
  • Access to transparent, publicly available provider and health system outcomes data to facilitate informed,
  • Patient-centered decision making; and
  • Outcomes reporting and analysis for health system assessment, planning, and improvement

 

Disclaimer

The views expressed in this commentary are those of the author and not necessarily of the author’s organization or of the Institute of Medicine. The commentary is intended to help inform and stimulate discussion. It has not been subjected to the review procedures of the Institute of Medicine and is not a report of the Institute of Medicine or of the National Research Council.


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