Historically, clinicians have had limited access to data on patients’ health and well-being. They’ve made do with information collected during patient visits, like self-reported lifestyle habits and family health histories.

Technology is transforming our ability to collect accurate, reliable patient data.

Adults with chronic conditions are most likely to track health indicators, like blood pressure or symptoms, than those without.⁷⁰

Using technology, patients can also share information that’s critical for health care decision-making but often too time-consuming or cumbersome for clinicians to gather — like family medical histories. What’s more, patients can provide this data from home, so that clinicians can maximize precious office visit time.

This chapter describes how you can use the patient portal to systematically collect patient-generated data and harness them to improve clinical care and patient health.

Across the nation, patients’ phones and computers are teeming with patient-generated health data: health-related data that patients create, record, or gather to help address a health concern. They include:

• Health history
• Treatment history
• Biometric data, like blood pressure readings
• Symptoms
• Lifestyle choices, like diet and exercise habits^{71, 72}

As the amount of available data has grown, so too has our ability to collect, organize, and make sense of it all. More and more health systems are aggregating patient-generated health data in their EHRs and relying on these data to conduct remote monitoring — that is, to track patients’ wellness outside the clinic.

Clinicians can take advantage of these patient-generated health data to fill information gaps — and, ultimately, improve clinical decision-making, care delivery, and health outcomes.

The results are real for practices as well as patients:

• Fewer hospital readmissions, which can help avoid penalties for excessive readmission imposed by Centers for Medicare & Medicaid Services⁷³
• Efficient diagnosis of illnesses, which saves practice resources
• Enhanced patient-centered care, so that clinicians can identify treatments and health behaviors that patients will follow through with
• Effective management of complex chronic conditions, so that patients can control their own health with less clinician intervention

Tips for Clinicians

Clinicians can use patient-generated health data to:

• Show how a patient is doing between visits
• Illustrate a patient’s health and behavior over time
• Inform strategies for preventive care and chronic disease management
• Improve patient safety by providing insight into medication adherence and allergies⁷⁵
• Spark and support conversations with patients that result in shared decision making⁷⁶
• Predict hospital readmission risk

Portals can streamline data collection by giving patients a platform for securely sharing information and completing online questionnaires. Clinicians can use the portal to send patients reminders to submit data and to follow up with patients as needed.

Tips for Practice Administrators

Consider taking steps to integrate patient-generated health data into your practice:

• Talk to staff about how patient-generated health data can improve care and efficiency
• Assess what data you’re already gathering and what additional data would be valuable
• Develop policies and procedures, like when to accept data and who will review them
• Educate patients and families about the value of and expectations for sharing patient-generated health data
• Start small — for example, by launching a pilot to collect symptoms for patients managing a chronic disease — and make changes as needed⁷⁷

See HealthIT.gov for more information on patient-generated health data.

Family health history can help predict a patient’s disease risk — essentially, it’s the simplest and least expensive form of genetic assessment.⁹⁵ Traditionally, collecting and analyzing this information hasn’t been a routine part of primary care because of challenges like patients’ lack of knowledge about family history and clinicians’ limited time.

Now, technology-driven tools are changing the standard of risk assessments. These tools enable patients to systematically collect family health histories and report back to their clinicians. Clinicians can then ensure high-risk patients get necessary screenings and specialist care.⁹⁶

Tips for Practice Administrators

To collect family histories efficiently and effectively, consider taking these steps:

• Encourage patients to enter pertinent family history through the patient portal — so they don’t have to recall family details during the visit
• Ask medical assistants to review family history before a visit — so clinicians don’t waste valuable visit time collecting that information
• Conduct clinical training about how to recognize genetic diseases and manage high-risk patients⁹⁷