The Quest for Transparency in Health Care

I wish that every human life might be pure transparent freedom

Simone de Beauvoir (19809-1986), The Blood of Others (1946)

One central component of the records, the notes composed by clinicians , has remained largely hidden from patients.  But now OpenNotes, an initiative fueled primarily by the Robert Wood Johnson Foundation, is exploring the effect of providing access to these notes.

Jan Walker, Jonathan Darer, Joann Elmore, and Tom Delbarco, “The Road toward Fully Transparent Medical Records,” New England Journal of Medicine, January 2, 2014

One hallmark of American Medicine has been its secrecy about its pricing and its clinical findings.   Some of the reasons for this secrecy are 3^rd party payments with insensitivity to price, fear of malpractice litigation, concerns  patients can’t handle the truth,,  and confidentially and security will be breached.

The secrecy is slowly breaking down.   Forty years ago, Shenkin and Warner argued giving patients their medical records would help patient participate in their own care (1).  In 2001, the Institute of Medicine set forth 10 rules for improving 21 century medicine:

These rules included:

1)      Care based on continuous healing relationships.

2)      Care customized according to patient needs and values.

3)      The patient as the source of control.

4)      Knowledge is shared and information flows freely.

5)      Decision-making is evidence-based.

6)      Safety is a system-property.

7)      Transparency is necessary.

8)      Needs are anticipated.

9)      Waste is continuously decreased.

10)  Cooperation among  clinicians is a priority.

Along the road  to transparency Robert Berry, MD, a family physician in Greenville, Tennessee, testified before Congress, that he posted prices in his front office; SimpleCare of Renton, Washington, a national primary care organization,  announced fixed prices for 15 minutes, 30 minute, one hour and longer office visits;  an Oklahoma City surgical center posted its prices for procedures online and in other media.

And beginning in 2010, more than 100 primary care physicians at  Beth Israel Deaconness Medical Center in Boston, Geisinger Medical Center in rural Pennsylvania, and Harborview Medical Center in Seattle invited 20,000 patients to read their clinical notes securely online.  After the first year, 99% of patients surveyed wanted “OpenNotes” to continue;   85% of patients said ready access to these notes would be important in their future choice of a provider or system;  and no doctors chose to discontinue providing OpenNotes.   Other leading health care organizations – MD Anderson Cancer Center, Mayo Clinics, and the Veterans Administration are experimenting with OpenNotes.  About 2 million Americans now have access to OpenNotes.  

The authors of the New England Journal article conclude:  

“We  believe that ultimately notes will be signed by both patients and providers, as they become the foundations for planning care, monitoring the course of health and illness, and evaluating care processes and outcomes.”

Many clinicians will have reservations about sharing notes with patients on on sensitive topics  like cancer, mental health, substance abuse, and obesity,  but transparency of clinical notes is gaining ground,  and transparency in sharing with patients with what things really cost is likely to follow as a means of  creating competition, cutting costs, and rationalizing pricing.

Tweet:   As health reform progesses,  more openness and transparency in sharing clinical notes and prices with patients is evolving