There was a time that medical information flowed in only one direction – from doctor to patient. That time has passed. With the advent of several factors – in the U.S., the Meaningful Use standard that governs the use of Electronic Health Records (EHR) and the exchange of patient clinical data among healthcare providers as well as between healthcare providers and insurers or patients1, the Affordable Care Act and incentive-based reimbursement, and global population health trends – a push has emerged that is shifting the patient’s role from passive recipient of care to active member of the care team2. Consequently, regulators and providers are searching for solutions to increase patient engagement. This is causing patient-generated health data (PGHD) to emerge as a hot topic.
What is Patient-Generated Health Data?
PGHD, at its most basic level, is any information a patient shares with a provider. Traditionally, this would encompass symptoms as well as family history. However, patients today are increasingly collecting their own biometric data, using an ever-expanding array of personal monitors that can record everything from heart rates and rhythms to steps and glucose levels in real time3.
PGHD is also generating new challenges for healthcare providers due to the fact that participating providers must integrate PGHD into electronic health records as part of Meaningful Use Stage 3 rules by 2018. Even in countries where this requirement is not an issue, healthcare providers will still have to meet the challenge of integrating PGHD into their patient health records.
Indeed, Dr. Gregory Abowd, Distinguished Professor of the School of Interactive Computing at Georgia Tech, predicted in 2011 at an industry forum that “Within five years, the majority of clinically relevant data will be collected outside of clinical settings4.” In the five years since that statement, the volume of such data has increased substantially – perhaps not the majority at this point, but still, enough to warrant attention.
PGHD is distinct from data generated within clinical settings in two important ways5:
- Patients, not providers, are primarily responsible for capturing and
recording the data
- Patients decide how to share or distribute these data to healthcare
providers and others
In Europe, collection of patient reported outcome measures, or PROMs (the continent’s PGHD equivalent) has been under way for some time. In the Netherlands, for example, collection of PROMs is mandated for certain types of patients and conditions – mandated, that is, for the providers, who in turn are required to ensure that their patients participate and respond to questionnaires. To meet this need, tools are used that electronically and automatically select validated survey instruments from an integrated library and administer them to patients at appropriate intervals (before, during, and after treatment as indicated), based on the diagnoses. These tools are generally integrated via standards-based methods with each provider’s electronic medical record (EMR).
According to the European Patients’ Academy, patient-reported outcomes are important because they provide a patient perspective on a disease or treatment that might not be captured by a clinical measurement, but may be as important to the patient (and their adherence to the treatment) as a clinical measurement6.
Insurers today are continually seeking surrogate data as an alternative to more traditional sources of underwriting data (e.g., paramedical exams and attending physician statements). For example, some insurers are incorporating data elements generated by wearable devices into their pricing and underwriting considerations.