A few months ago, I spent 15 minutes filling out a detailed health data form at the doctor’s office. The paper form contained multiple questions about my health, family history, medications and basic demographic information. I assumed that an administrative specialist would code it into the practice’s electronic medical record (EMR) to be put to use. So it came as a surprise when I spent another 5 minutes reviewing the form with my physician, who then proceeded to type this information into the EMR herself. I’m confident neither my physician nor I felt enabled by the experience.
Countless people have had a similar experience — or worse, filled out a form with no sign that any clinician ever saw the information. Though the industry has made outstanding progress in adopting EMRs, the practice of data acquisition from patients remains cloudy. Patient-generated health data (PGHD), a term encompassing all forms of data that patients provide on their own, is a relatively new concept in health care. It falls into two broad groups: historical data and biometric data.
Historical data is the type that clinicians are familiar with obtaining from patients: It includes the patient’s medical history, allergies, medications, family history and lifestyle features. Biometric data, little used at present, are health data gathered by consumer medical devices, such as blood glucose meters and fitness trackers.
Scenarios like mine above underscore how ill-prepared the health care infrastructure is for the sharp rise in both opportunities and requirements for PGHD, and the challenges of wrestling these data into the workflow of clinicians. Now, however, an important milestone is on the horizon. 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.
Meanwhile, patients are flocking to sites like PatientsLikeMe and 23andMe to compare and track health data, symptoms and treatment results. Though the connection between clinical medicine and these services is still quite murky, the data show that large contingents of our patients value the notion of comparing and visualizing their health data.
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.
Israel Green-Hopkins is a pediatric emergency medicine fellow who blogs at Vector, the Boston Children’s Hospital science and clinical innovation blog.
