PGHD is defined by the US Office of the National Coordinator for Health Information Technology (ONC), patient-generated health data is “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 (ie, care partners or those who assist them) to help address a health concern.” Including vital signs, step counts, and sleep quality, PGHD can be captured through mobile apps, survey-based instruments, and wearable devices.
How is it used?
In clinical care, patients are creating, generating, and sharing their own health information in their everyday lives and subsequently producing rich, high quality, real-world health data. Traditionally, clinicians would gather brief snapshots of their patient’s pathophysiology, within the confined walls of an in-person health visit. Despite the rise of telehealth check-ups, providers face considerable losses in valuable patient health data. Using PGHD, providers gain a much more holistic view of the patient.
In clinical research, PGHD from wearable devices may be integrated into research in three ways. First, researchers may gather wearable devices and recruit participants, who then wear the devices for a period of time; second, researchers can reuse pre-existing wearable device data. Third and most promising, PGHD from wearable devices can be used in larger, longitudinal studies to gather robust real-world data, increase participation diversity, and generate key insights for long-term health management.
What are the benefits of PGHD? Why is it important?
The globalized digital revolution and move towards patient-centered care have accelerated the use of PGHD. This valuable data source, which disrupts the traditional data collection ecosystem, reduces health information gaps, enhances patient engagement, and expands patient-provider interactions.
Patient-generated health data fills in gaps in clinical knowledge and provides rich insights on prevention and disease management. This is particularly helpful for conditions and populations that are difficult to measure. A 2020 randomized controlled trial evaluated the effectiveness of clinically integrated, sensored- based monitoring intervention among a racially and socioeconomically diverse sample of 4-17 years old children with moderate-to-severe asthma. The researchers found that, combined with other interventions, the monitoring of PGHD may improve asthma symptom control and caregiver quality of life. By enhancing knowledge on health conditions and risks, PGHD can improve health outcomes, reduce illness burdens, and decrease the demand for expensive medical treatments.
Additionally, PGHD enhances patient engagement and awareness. In 2018, 77% of American adults had access to or owned a smartphone, and 64% of teens and young adults reported using mobile health apps to track their health data. The collection of real-world patient-generated health data is not limited to just the provider or the researcher, but it has expanded to the patient and the participant. Patients are taking ownership of their health information, choosing how much to share, to whom, and when to distribute, and they are also empowered and held more accountable for their health management. A recent systematic review of PGHD found that roughly 50% of patients who collected their own health data adopted new behaviors to maintain their health, including “asking their clinicians new questions, seeking second opinions, finding social support, and moving towards healthier practices.” PGHD can motivate patients to become key decision-makers in their healthcare journey.
Finally, higher engagement leads to collaborative care and improved patient-provider communication. PGHD increases access and frequency of care and facilitates remote patient monitoring. Patients at high risk for chronic diseases, overweight individuals for example, can monitor their physical activity, report their diet, and share their records with their clinician easily. This provides the opportunity for rapid feedback, personalized treatments, and preventative health promotion plans. Ultimately, PGHD enables stronger, more efficient provider-patient interactions on mobile health platforms.
What are the challenges of PGHD?
Because patient-generated health data is dependent on technology, health stakeholders may face limited access to the Internet and worry about the accuracy of the collected data. Patients’ illness or limited technical literacy may impact the accessibility to and accuracy of PGHD.
Another obstacle healthcare providers and research institutions may face is the inability to integrate PGHD into their clinical workflows. These parties may lack the adequate technical infrastructure, workforce capacity and training, and integration with electronic health records, all of which hinder the implementation of PGHDs.
Lastly, patients may have data privacy and security concerns. Issues around data governance, lacking regulatory authorities, and unclear data sharing may arise which discourage patients from distributing their health data. Additional research and progress are needed to improve data management and ensure quality and accuracy of collected data.
Despite these challenges, PGHD has the exciting potential to improve health outcomes, engage patients, and enhance patient-provider communication channels. This exciting source of passive data could drastically alter the quality of research and move towards a more equitable, patient-centered care.
Want to know more about incorporating PGHD into your next clinical study?
Smart Omix enables researchers to collect rich, affordable real-world data at scale via smartphones, including PGHD across wearables, iOS and Android devices. To learn more about how to add PGHD to your clinical research, contact us.