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

Today, research shows that factors outside the clinical setting — socioeconomic, environmental, and health behaviors — all play a role in people's health and well-being. Patients and family caregivers are often the best sources for getting health and well-being data, including patient-generated health data. These data can be integrated into patients’ EHRs and support doctors’ decision-making for better care, prevention, better health outcomes, and lower costs.

A nationwide survey of adults by the National Partnership for Women & Families found that patients want more than just electronic access to view their health information. Patients also expect to be able to communicate with their providers and to share patient-generated health data about their health and conditions in real time. They expect to be partners in their care, with access and sharing in both directions.⁸⁰

Today, health IT is transforming our ability to collect and integrate accurate, reliable patient data from different sources into EHRs. Clinical practices can use portals and application programming interfaces (APIs) to integrate patients’ health data from devices, remote monitoring, wearables, and more. Each year, the U.S. Core Data for Interoperability (USCDI)—the minimum, standardized set of structured data elements that certified EHR technology must integrate and exchange—adds more data elements capable of collecting patient-generated health data, such as Family Health History, Reported Medication, Pregnancy Status (i.e., the intent to become pregnant), Nutrition & Diet, SDOH Problems/Health Concerns, and Travel Information.⁸¹ In addition, the best practice is for clinicians to collect and record the patient’s self-reported values for certain health data, such as race, ethnicity, sexual orientation, gender identity, disability, and pregnancy status.⁸²

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 these data from home, so that clinicians can maximize precious office visit time. At home, patients and family caregivers can refer to actual records and data rather than fill out forms from imperfect memory in the doctor’s office.

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

• Health history
• Treatment history
• Patient-reported outcomes
• Medication adherence
• BBiometric data, such as blood pressure, temperature, weight, and blood glucose levels
• Symptoms, such as nausea, headaches, and diarrhea
• Advance directives and birth plans
• Lifestyle choices, such as diet and exercise^{85, 86}

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’ health and wellness outside the clinic.

Clinicians can take advantage of these patient-generated health data to fill information gaps between appointments — 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 Services⁸⁷
• 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

“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.

Without the objective measure provided by my activity tracker, we would be basing our decision on my subjective assessments of getting worse… By putting my data to work for me, we can now do better.”

— Donna Cryer, liver transplant survivor⁸⁸

Options for Integrating Patient-Generated Health Data

Across practices and electronic health records, it varies how EHRs integrate patient-generated health data and whether and when patients could write data directly to the EHR (e.g., research study data), or whether health system review and prior approval were required to authorize the data to be written into the EHR (e.g., patient-submitted corrections or amendments to the medical record).^{89 90 91}

Patient Reported Outcomes

Patient reported outcomes are outcomes reported directly by the patient, such as symptoms, changes in symptoms, and effects of treatments. Patients might report these outcomes in person during an office visit, or through a patient portal as patient-generated health data. Collecting and tracking patient reported outcomes in real time can increase patient engagement and patient-provider partnership, improve care, and decrease emergency department visits and hospitalizations.

For example, see Advancing the Collection and Use of Patient-Reported Outcomes (PROs) through Health Information Technology, or see below for another example of patient reported outcomes in cancer care.

“My goal over the past year has been to have the family history for most of my patients completed at least involving all first degree relatives. I did not find that this caused extra work or took much extra time – in fact it saved time and provided me valuable information for my practice.”

— Dr. Bruce Peyser, Medical Director, Pickett Road Clinic

Family health history can help predict a patient’s disease risk — essentially, it’s the simplest and least expensive form of genetic assessment.¹¹⁰ Traditionally, collecting and analyzing this information hasn’t been a routine part of primary care because of challenges like patients’ lack of knowledge (or memory lapse) about family history and clinicians’ limited time.

Now, technology-driven tools are changing the standard of risk assessments. For example, as mentioned above, the USCDI includes a Family Health History data element to help collect, use, and exchange standardized, structured data about patients’ family health histories. These tools enable patients to systematically collect family health histories and report back to their clinicians. Patients can complete these health histories at home with relevant records at hand rather than try to complete them by memory in the waiting room, which ensures accuracy and detail. Practice administrators can synthesize the data in the EHR, and doctors can review in advance. Clinicians can then ensure high-risk patients get necessary screenings and specialist care.¹¹¹

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 know the results before the patient visit and don’t waste valuable visit time collecting that information
• Conduct clinical training about how to recognize genetic diseases and manage high-risk patients¹¹²