A frequently heard expression in some digital circles says that data “wants to be free.” Whether or not that’s true (your cable provider might disagree), clearly health records are more accessible now than they were not all that long ago.
A few decades back, the only way most people could get access to their medical records kept by a healthcare provider would be to take the provider to court. That had begun to change, even before the landmark enactment of HIPAA in 1996, which wrote into the nation’s law privacy protections for a patient’s personally identifiable health records, and made explicit a patient’s right to access his or her own medical information.
Of course, just having that right did not automatically make gaining access easy or convenient. But as technology evolves and some healthcare providers become more attuned to health consumers’ needs and interests for access to data, they are increasingly finding ways to leverage new electronic health records systems to make the process easier.
One prominent example is a recent 12-month trial carried out by three U.S. health care systems — Boston’s primary care and teaching hospital Beth Israel Deaconess Medical Center, with its suburban clinics; Pennsylvania’s Geisinger Health System, an integrated network of rural clinics; and the University of Washington-affiliated safety-net hospital, Harborview Medical Center. They tested the OpenNotes system, which offers healthcare providers a way to share their clinical notes with their patients.
The demonstration project involved 105 volunteer primary-care physicians and about 19,000 patients, who were registered into a secure internet portal and told their physician would use it to let them see online their test results, notes on their medications, and other portions of their medical records.
As reported in the British Medical Journal this February, by the end of the year-long study, two-thirds of the patients viewed the OpenNotes system positively, saying it helped them better understand the state of their health, how to care for themselves, and the need to keep taking their prescriptions. Although doctor-patient communications improved, physicians reported it did not cause a significant increase in demands on their time.
Greater openness of healthcare records is also aided by the profusion of technology easing access. Providers are moving away from keeping records on proprietary servers, and towards making use of cloud storage. Wider adoption of consumer-accessible devices like tablets and mobile and wearable devices is being seen in delivery of care and clinical research.
Even before the recent, much-ballyhooed appearance of the Apple Watch, wearable devices that monitor the user’s health and fitness had become big business. Fitbit, for example, says it has sold about 21 million devices since launching in 2007, and over half that total were sold in 2014 alone. Some devices can capture data on your sleep cycle or report in extensive detail on how well your heart is functioning, or monitor reproductive cycles.
Many clinical researchers view both these trends as potentially helpful. Greater information sharing can assist trial recruitment efforts, and advances in areas such as wearable devices can simplify data collection, often providing it in real time, and aid in monitoring clinical trial participants.