The opportunities and challenges of patient-generated health data
As the proliferation of wearables, connected medical devices, personal health records and mobile apps continues, consumers are becoming increasingly interested in capturing, analyzing and sharing their own health data.
While providing both challenges and opportunities for physicians, this information, also known as patient-generated health data (PGHD), can help people become more engaged in their own care.1,2
Until recently, individuals’ health information, such as biometric data, symptoms, medication effects, and patient preferences, has been predominantly collected by healthcare providers (HCPs) in a clinical setting, or through in-home devices for remote monitoring. But thanks to the surge in consumer health technologies and public interest in health data capture, both the quantity and quality of available PGHD has increased. A decade ago, mobile health (mHealth) and wearables were only just finding their feet in the consumer space; whereas nowadays, we most likely see someone wearing a Fitbit® or an Apple Watch® on a daily basis.1,3
The rapidly expanding digital health ecosystem presents an array of opportunities for both patient and provider. The propagation of the Internet of Things (IoT) and connected health tools in daily life allows individuals to capture and track their health data, encouraging greater patient engagement and a shift towards patient-centric care. While some are concerned that this may threaten the traditional doctor-patient relationship, moving away from a paternal care model and towards collaborative, shared decision-making has the potential to lead to more informed health decisions. When utilized by physicians, PGHD can offer a more holistic view of an individual’s health and wellbeing over time, providing insight into treatment adherence and the tools to develop a personalized care plan. There is hope that the data generated by these new technologies can also aid HCPs in moving beyond predominantly reactive care; enabling them to take proactive, predictive and preventive action, to avoid a costly hospitalization or emergency room visit.1,3
But the use of PGHD isn’t without its challenges. For HCPs concerns include the risk of information overload, and considerations around whether the data collected is actionable and of high enough quality for decision-making. There are worries around the potential for increased workload, accountability if timely actions are not taken based on the data collected, and a concern that the data may threaten clinical autonomy.4 For patients, lack of access to technologies, disparate levels of digital health literacy, and concerns over privacy and security are all barriers which may prevent them from engaging with such interventions.1
Despite this, the industry remains positive about the potential of PGHD, and the benefits it can bring. As digital health technology becomes increasingly sophisticated and prevalent, we need to ensure we are ready to utilize the data it generates, and overcome the challenges it currently presents.
- Conceptualizing a Data Infrastructure for the Capture, Use, and Sharing of Patient-Generated Health Data in Care Delivery and Research through 2024. White Paper. Available at: https://www.healthit.gov/sites/default/files/onc_pghd_final_white_paper.pdf. Accessed: February 2019.
- Patient-generated health data can be used to improve patients’ health – here’s how. Available at: https://www.mobihealthnews.com/content/patient-generated-health-data-can-be-used-improve-patients%E2%80%99-health-%E2%80%93-here%E2%80%99s-how. Accessed: February 2019.
- Nittas V et al. BMJ Open 2018; 8: e021245.
- Chung AE and Basch EM. J Oncol Pract 2015; 11(3): 195–197.