US policy requires immediate release of records to patients

Dear Editor

At Patients Know Best (PKB), we welcome the US government’s legislation to give all patients all their data. This was our founding mission, and we help providers in Europe and India to deliver all data to all patients.

Unfortunately the legislation is unnecessarily blunt as a reaction to the health care industry’s decades of resistance to patients’ needs. As the article rightly points out, mandating immediate release of all data can lead to unnecessary harm from a small minority of distressing test results, such as cancer diagnoses.

There are better ways to combine patient empowerment with clinical care. PKB allows providers to delay the release of this small minority of distressing results. Our software immediately informs the patient that their biopsy result is available, but delays the appearance of the full result according to the configuration of the author of the result. This gives the patient time to hear bad news with their doctor, receiving care and counselling from their clinicians. Full results automatically appear after the delay, This is a failsafe – if for any reason no clinician has told the patient the bad news, the patient needs to hear it quickly enough without waiting for the clinician. This nuanced approach delivers the best of both worlds.

Unless clinicians outside the USA embrace the appropriate release of all data, their governments will follow the example of the USA, releasing all data even when not appropriate. Unless clinicians roll out nuanced approaches quickly, they will face the blunt approaches eventually. They must change and patients must benefit.