What are the opportunities and challenges of patient-generated health data (PGHD) use?

The proliferation of consumer health technologies, including smartphones, mobile applications (apps), and wearable devices, has increased the frequency, amount, and types of PGHD available. These advances can enable patients and their caregivers to independently and seamlessly capture and share their health data electronically with clinicians and researchers more frequently and from any location.

Various stakeholder groups can benefit from new opportunities yet also face some challenges arising from increasing PGHD use. A few are described below; more in-depth discussion can be found in the final white paper [PDF - .2.7MB]

Patients and Caregivers

New technologies can enable patients and their caregivers to generate important data outside of clinical settings as often as needed and share it with their providers to expand the depth, breadth, and continuity of information available to improve health care and outcomes. The increasing number of smart phones, mobile applications, and remote monitoring devices, coupled with providers’ deployment of electronic health records (EHRs), patient portals, and secure messaging, offer innovative ways to connect patients and providers and to strengthen consumers’ engagement in managing their health and health care. However, barriers to access, low health literacy, and concerns about privacy protections can limit PGHD collection, use, and sharing by patients and caregivers.

PGHD Patients and Families

Providers

The use of PGHD can provide a more holistic view of a patient’s health and quality of life over time, increase visibility into a patient’s adherence to a treatment plan, and enable timely intervention before a costly care episode. To integrate this new source of data, providers will need to set up analytical tools, build processes into their workflow, and evaluate whether and what information to include in the patient record. They will need to determine when to promote PGHD use as part of the care plan. Providers may be concerned about any potential negative impact to the efficiency of their workflow, increased liability and accountability, and setting realistic patient expectations. They may also need to address technical challenges such as confirming the accuracy and validity of PGHD from wellness devices, managing the security risk, and standardizing the data collected from multiple devices.

PGHD Providers

Researchers

Researchers can help identify what PGHD are most useful to improve health and care processes, as well as what types of consumer and provider education and support can ease its adoption and use. Researchers can look into how best to integrate consumer health technology and information into individuals’ daily lives and into providers' workflows.

PDHD Researchers

Policymakers

Federal and state policymakers can help encourage innovation and offer guidance to various stakeholder groups. For example, they can collaborate with other stakeholder groups to address important questions about what should (and should not) be documented in medical records, what standards are needed, how the patient’s data are shared, and what protections need to be put in place.

PGHD Policy Makers

Developers and Standards Bodies

Developers and standards bodies can provide the technical infrastructure and tools required to enable the capture, use, and sharing of PGHD. Measurements and data elements across devices may vary significantly, and the structure and format of PGHD may not be compatible across devices and apps, posing challenges for combining and comparing PGHD from disparate sources, including clinical data in an EHR. Increased standardization will help to ensure the functionality of these devices and apps as well as the accuracy and validity of data captured by these tools.

PGHD Developers

Payers and Employers

Payers can help align incentives between clinicians and patients and promote shared decision-making through their reimbursement policies. Payers can motivate interoperability and data sharing by reimbursing clinicians for using PGHD and other data during patients’ transitions of care. To increase access to consumer technologies for all patients, payers can support their members with devices and apps.

Employers can encourage the capture and use of PGHD by providing employees with discounted or free wearable activity trackers, prizes for reaching certain health milestones, and discounts on health insurance premiums. By offering these devices and monitoring programs to employees, employers may also receive discounts and reductions in the cost of offering insurance to their employees from payers.

Umbrella with Medical Case
Content last reviewed on January 23, 2018
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