healthcare technology

Though the industry has made outstanding progress in adopting EMRs, the practice of data acquisition from patients remains cloudy.

A recommendation from the HITSC Meaningful Use Workgroup would require practices with electronic health records (EHRs) to allow 10 percent of patients to report PGHD electronically.

If approved in meaningful use stage 3, the final stage of HealthIT.gov’s EHR incentive program, it could push hospitals to incorporate patient-generated data.

This requirement may seem like a relatively simple intervention, but the ramifications are quite significant. If clinical decision-making is made on the basis of data supplied by patients and documented in the EMR, how can clinicians be sure that such data is complete, correct and valid? And will clinicians like me learn to rely on it, or will we disregard it due to concerns about its validity or barriers to integrating it into care flow?

Furthermore, if a patient is in control of her health data entry, who is ultimately responsible for its completeness and accuracy — the patient or the clinician?

Incorporating biometric data into the EMR, an exciting prospect, is even more complex. Though clinicians are quite familiar with data entry from FDA-approved medical devices such as blood glucose meters, pacemakers and pulmonary function units, data from a myriad of consumer-driven health devices (Fitbit and others) will soon seek to flex their way into EMRs.

Patients clearly value these data; a recent Pew Research report noted that 60 percent of adults claim to track their exercise routine, weight or diet, meaning providers have some catch-up to do in order to meet patients halfway. Some health systems, such as Partners HealthCare, have already been experimenting with the incorporation of PGHD from remote devices into the EMR, and other institutions should follow.

Consumer health data devices are moving ahead at a staggering pace, and while the health care system can’t quite keep up, strategic planning should be happening now.

Despite the challenges, incorporating PGHD is a necessary evolutionary step for health care. Intelligently designed, well-executed systems that fully incorporate and display PGHD in a meaningful way will improve shared decision-making and enable patients as active care partners. Keen clinicians and patients will stay closely tuned to the numerous transformations to come.

As patients become familiar with medical records and clinical notes, they consider new opportunities and risks. Some say they have become more careful about what information they share with clinicians, and some ask for more control over access to their information.

Providers are experimenting with strategies that help patients protect their privacy with regard to mental health, sexual function, suspected abuse, or other sensitive topics. And though family caregivers may find that reading notes improves their understanding of care plans and reduces stress, it's a complex task to establish separate proxy access based on patients' preferences about who gets to see what.