About healthcare data

What is healthcare data?

Healthcare data includes everything from one patient’s demographic information and physical address to the results of clinical research trials with hundreds of subjects. The volume of healthcare data is expected to increase 36% through 2025, according to an International Data Corporation report. Where does it all come from? By one estimate, a single patient generates over 80MB of data each year, according to Frontiers in ICT.

Sources of healthcare data include:

Electronic health records (EHRs): Patient records that include location, demographics, and medical history
Clinical data: Data compiled from diagnoses and outcomes, medical prescriptions, clinical trials, and the like
Administrative data: Data from billing, payments, scheduling, coding, insurance reimbursements, and more
Imaging data: Mammograms, MRIs, X-rays, and other scans
Wearables: Data collected from consumer health products such as Fitbits and from prescribed technology such as mobile heart monitors

What Drives the Growth in Healthcare Data?

The convergence of technology and public policy are the main drivers of healthcare data growth. When the Affordable Care Act was enacted in 2010, it called for patient EHRs to replace paper files.

Clinical technology, such as digital mammograms and other scans, produce still more data, as do wearable tech devices. Analytical tools that provide insights and office administrative tools also drive the use of healthcare data.

Finally, the transition from a fee-for-service model to a value-based care model is also propelling the growth of healthcare data.

WHAT IS PGHD?

Defined by the Office of the National Coordinator for Health IT, patient-generated health data is “health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern,” the agency says on its website.

PGHD can take virtually any form, ranging from sophisticated reads from a patient’s blood glucose monitor all the way down to a handwritten list of symptoms. The former is becoming more common than the latter, and with the rise in both patient- and provider-facing technology, it is also easier to use.

According to the Agency for Healthcare Research and Quality (AHRQ), PGHD can include, but is not limited to:
Health history
Treatment history
Biometric data
Symptoms
Lifestyle choices

AHRQ emphasizes that PGHD is distinct from clinical data collected by a provider because it originates with the patient or a family caregiver. Additionally, patients and their caregivers are entirely in charge of deciding how, and how much, they will share with clinicians.

WHY IS PGHD IMPORTANT?
Healthcare professionals value PGHD largely because it provides insights into patient health and wellness outside the four walls of the clinic or hospital. For example, the read from the above-mentioned blood glucose monitor will tell a provider how well a patient with diabetes is managing her condition outside the context of a clinic encounter.

Can patients access to their data?

Per the ONC rule, medical providers must offer patients access to their electronic health data, free of charge. This requirement is different from those elucidated in the HIPAA Privacy Rule because it requires patients to have immediate access to their digital data, such as via a patient portal.

On the whole, providers must be able to make eight types of patient data available to all patients, free of charge:

Consultation notes
Discharge summary notes
History and physical
Imaging narratives
Laboratory report narratives
Pathology report narratives
Procedure notes
Progress notes