Published On January 18, 2017
Please Share—But Take Care
“Please Share” (Fall 2016) urges reporting results—and making complete data public—from clinical trials. I agree that reporting is essential; so is data sharing. I have advocated data sharing and offered the tools to support it for more than a decade. But caution is needed before making “public all of the information collected on each participant in a clinical trial.”
Patients recruited for clinical trials need to be assured that their privacy will be protected, and there are of course strict and important rules for doing this. To be made public, data must be carefully “de-identified,” that is, be stripped of those personal details, and be subjected to additional protections. But the more detailed these data, the easier it will be for rogue software programs to put a name to the numbers. More shared data, more specific data and more powerful software make the risk of privacy violations a greater threat.
Sharing data will rarely offer new and unexpected findings, as the story suggests. Good trials have statistically robust designs that state their end points and calculations in advance. These are almost always more certain than those derived by re-analyzing data or separating subjects in new ways after the fact.
Daniel Gardner // Head, Laboratory of Neuroinformatics, Weill Cornell Medical College, New York, N.Y.
Let the Patient In
Medicine has been a guild-style profession since the time of Hippocrates, with practitioners maintaining specialized knowledge that is inaccessible to laypeople. In some ways, modern physician notes—replete with esoteric jargon stemming from ancient Greek and Latin—reflect this secrecy. The transparency fostered by the OpenNotes program (“Should Patients Read Their Progress Notes?” Fall 2016) transforms the patient-provider relationship. The program has enabled millions of Americans to have access to read their physicians’ notes.
Our research explores how transparency of physician notes can engage patients and families in the complex process of hospital care. The ability and willingness of patients to participate in their hospital care is striking, and we have observed how note sharing improves communication and prevents medical errors.
Instead of limiting the target audience for doctors’ notes to other clinicians, lawyers, payers, and administrators, perhaps it’s time to consider patients as equally important stakeholders. Health care providers owe it to their patients and to themselves to embrace the benefits that come from sharing notes with patients.
David Vawdrey / / Vice President, Analytics, NewYork-Presbyterian Hospital New York, N.Y.
Stay on the frontiers of medicine
- Please Share
Troves of data are gathered during clinical trials, but most of it stays locked away. Could freeing it lead to new cures?
- Should Patients Read Their Progress Notes?
A nationwide program advocates that patients should have seamless access to their doctors’ notes. But not everyone thinks this is a good idea.
- Comprehension Test
For patients to be effective partners in their own care requires a basic grasp of medical terms that, shockingly, many don’t have.