Patient-generated health data can be used to improve patients’ health – here’s how

By Emily Mitchell

About the author: Emily Mitchell (PMP) is a senior manager within the Accenture Federal Services Health and Public Service practice. She has more than 16 years of experience providing consulting services to public service and private clients with a primary focus on program management and team leadership. As Client Account Lead, she supports the Office of the National Coordinator for Health IT (ONC), including overseeing ONC's Patient-Generated Health Data (PGHD) project. Mitchell has worked with ONC since 2011, supporting the Standards & Interoperability Framework. She is one of the authors of Accenture's "Blockchain: Securing a New Health Interoperability Experience" paper, which was selected as one of fifteen winners in ONC's Blockchain Challenge in August 2016. She currently serves as the Civilian Health Liaison and a mentor to startups in Accenture's partnership with the global incubator and seed fund 1776, and serves as the Vice-Chair for the HIMSS Government Relations Roundtable. 

The rise of innovative digital health technologies has increased the ease of capture, use, and sharing of Patient-Generated Health Data (PGHD). PGHD, gathered using digital health tools such as online questionnaires, personal health records, mobile apps, wearables, and connected medical devices, can help patients become more engaged in their care.
The interest of consumers in capturing their own health data has grown considerably, introducing new challenges and also tremendous opportunities for clinicians and researchers to gain insights from the data. This is why many health practitioners are actively looking for ways to capitalize on the pervasiveness of these devices and find opportunities to use the abundance of data that patients are generating.

Healthcare professionals often don’t have real-time access to data about a patient’s life outside of the clinical setting. This limits the potential for a holistic perspective of their patients’ health and care. The use and sharing of PGHD for clinical care and research are not yet in widespread practice, in part due to several barriers across the health ecosystem.
Many health care systems and research institutions currently lack the technical infrastructure, workforce capacity, and training to support PGHD intake. Patients may not understand the advantages of capturing and sharing PGHD with clinicians and researchers.  Lack of access to PGHD technologies, varying levels of health and technology literacy, and patient concerns about data privacy and security may also prevent patients from participating.
To help address these issues, Accenture recently completed two reports for the Office of the National Coordinator for Health Information Technology (ONC). Our team conducted research and industry outreach to better understand how organizations are currently using PGHD, and the challenges that are impeding it successful utilization. The research helped to identify best practices, gaps, and opportunities for progress in the capture, use and sharing of PGHD. 
Findings from two pilot demonstrations were synthesized with our team’s research and analysis. The resulting white paper, Conceptualizing a Data Infrastructure for the Capture, Use, and Sharing of Patient-Generated Health Data in Care Delivery and Research through 2024, suggests actions that patients and caregivers, clinicians, researchers, policymakers, developers and standards bodies, and payers and employers can take to collaborate and advance the use of PGHD.
A Practical Guide was also created that offers suggested practices and questions to consider for the implementation of its capture and use, recognizing the need for guidance and best practices for incorporating PGHD into care delivery and research.
The research highlights many important findings, including that fact that PGHD use can supplement, but does not replace, human interaction. We learned that it is important to establish and maintain a positive feedback loop between the care team and the patients, so patients understand the importance of providing their data, and learn what their data means to their health outcomes. We also observed that PGHD doesn’t have to cause data overload: by incorporating the right analytics tools and establishing a clinical workflow to support use of the data, care teams can more efficiently treat some patient populations.
The whitepaper envisions a future where PGHD is seamlessly and electronically captured and shared among patients, clinicians and researchers as part of routine care and research. As the use of PGHD continues to mature, it will support a more collaborative relationship between patients and clinicians and empower patients to actively engage in monitoring their own health. PGHD can provide clinicians with a more comprehensive view of patients’ health, supporting better-informed decision making, and enable intervention before a costly care episode. It can also contribute to more successful research studies due to increased access to patients and the ability for them to participate remotely.
The capture of PGHD alone is not sufficient to cause change. Joint action from across the healthcare ecosystem is necessary to overcome the current barriers. Through collaboration, these barriers can be addressed, resulting in improved insights for clinicians and researchers and improved care for patients.