Patient Data Access News

3 Benefits of Patient-Generated Health Data, Patient Engagement

Between improving chronic disease management, boosting the Precision Medicine Initiative, and driving patient satisfaction, patient-generated health data has many healthcare benefits.

By Sara Heath

- Through the current health technology boom amongst patients and the near-ubiquitous adoption of EHRs amongst providers, patient-generated health data has become an important aspect of patient engagement.


As defined by the Office of the National Coordinator for Health IT, patient-generated health data are “health-related data—including health history, symptoms, biometric data, treatment history, lifestyle choices, and other information—created, recorded, gathered, or inferred by or from patients or their designees to help address a health concern.”

As indicated by its name, patient-generated health data requires the engagement and participation of the patient. Through a collection of mHealth apps and remote patient monitoring systems, patients collect their own health data, later to be integrated into their overall health file.

But patient-generated health data does more than just add more information to an EHR – it changes the way providers interact with their patients outside of the hospital, helps healthcare experts develop new treatment plans, and even makes the patient feel like an important partner in care.

By supporting patient-generated health data collection, providers are able to better the healthcare industry by helping build a wealth of information clinicians, researchers, and patients can all use.

READ MORE: Patients Lack Info Needed for Chronic Disease Self-Management

Improving chronic disease management

Patient-generated health data is closely tied with remote patient monitoring and chronic disease management because the data is often mined from mHealth devices that collect biometric data.

Remote monitors like Bluetooth scales and blood pressure cuffs can be used to collect vital data while the patient is recovering at home, helping providers to understand the next steps needed in managing a chronic illness.

Take, for example, Donna Cryer, a liver transplant patient whose story was told last year in a HealthIT Buzz blog post. Cryer’s liver transplant, subsequent health issues, and notable relocations around the country made it difficult for providers to manage and coordinate her care. Through her personal efforts to monitor her health and aggregate her health data, Cryer was able to improve her health tremendously.

“One of the major advances in recent years is the availability of wearable and wireless devices and mobile applications to record and visualize the information about the vast majority of my life spent outside the doctors’ offices,” Cryer said in the post. “Using these tools – a wireless scale and bracelet-style activity tracker – my doctors and I have been able to assess intervention effectiveness, adjust dosages, unearth side effects, and clarify decision points.”

READ MORE: Patient Engagement Strategies for Post-Discharge Follow-Up Care

Driving the Precision Medicine Initiative

Patient-generated health data also plays a critical role in the Precision Medicine Initiative (PMI), a project spearheaded by the President that calls for patients to volunteer their health data to clinical analysts and researchers to develop optimized treatment plans.

In fact, patient-generated health data is arguably the crux of PMI. Alongside an array of EHR data, PMI operates off of patient-generated health data and health data contributed by patients themselves.

According to David McCallie, MD, senior vice president of medical informatics at EHR vendor Cerner Corporation, the data patients collect through wearable sensors and remote monitoring systems is critical to help enhance the information physicians already have.

“A lot of people assume [precision medicine] is just about genetics. It’s really about the broad compilation of the environmental, social and lifestyle factors, in addition to the genetic makeup of the patient,” he said during a live Periscope chat at the start of February.

READ MORE: Understanding Mental Barriers to Patient Medication Adherence

However, in order to make this happen, it’s important that healthcare experts make patient data sharing and patient access to data widely available. Following the Precision Medicine Summit last month, industry leaders like OpenNotes and the College of Healthcare Information Management Executives partnered to improve the flow of health data between patients and providers.

Empowering the patient

Patient-generated health data also has benefits that can’t always be tangibly seen in technical health projects. The simple act of empowering the patient and making her feel in control as contributor to her care often makes a great deal of difference in care.

Research shows that patients want to be involved in their own care. Between viewing EHR information on a patient portal to collecting their data, patients feel like an integral part of the care when they can contribute something to the decision-making process.

According to the Healthcare Information and Management Systems Society (HIMSS), patient-generated health data causes the patient to stake a tangible claim in his healthcare, and often inspires him to further engage in his care.

As the healthcare industry continues to shift toward more patient-centered models, providers will need to boost patient engagement to be truly successful. Physicians can accomplish that by encouraging patients to contribute their own personally-collected health data, as well as add to the breadth of information that is necessary for an overall stronger healthcare system.


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