The U.S. Department of Health and Human Services – Office of the National Coordinator for Health Information Technology (ONC) is helping to explore the potential of PGHD.
Whether monitoring chronic illnesses or tracking fitness levels, consumers have become much more interested in capturing their own health data—and engaging more in their own wellness. This unprecedented collection of information can potentially provide clinicians with a more holistic view of patients’ lives outside the clinical setting.
The U.S. Department of Health and Human Services - Office of the National Coordinator for Health Information Technology (ONC) is helping to explore the potential of PGHD. After identifying PGHD use as an important issue for advancing patient engagement, care delivery, and research, ONC initiated a series of activities to gain more information about its value and approaches to implementing it. Building on prior policy work, ONC began collaborating with Accenture Federal Services in 2015. The goal: to dig deep into what’s possible, what’s standing in the way, and options for overcoming those barriers.
Accenture conducted research and industry outreach to better understand how organizations are currently using PGHD, as well as the challenges impeding its successful utilization. The project team explored seven different policy topic areas relevant to PGHD, developed extensive environmental scans and literature reviews, met with more than 60 industry subject-matter experts, and coordinated two pilot demonstrations to test the findings in a real-world clinical setting. The research helped to identify best practices, gaps, and opportunities for progress in the capture, use, and sharing of PGHD.
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. Ultimately, it lays the groundwork for creating a well-defined yet flexible policy framework to help in unleashing PGHD’s potential for all healthcare stakeholders.
Recognizing the need for guidance and best practices for incorporating PGHD into care delivery and research, the team also created a Practical Guide that offers suggested practices and questions to consider when implementing PGHD capture and use.
The team set out to understand the key barriers to greater use of PGHD. The white paper points to a number of challenges around the capture, use, and sharing of PGHD. Among them:
Patients may not understand the advantages of capturing and sharing their data with clinicians and researchers. Not all patients have access to technologies that capture, use, and share PGHD. Patients may have varying levels of health and technology literacy. What’s more, their concerns about data privacy and security may prevent them from participating
Healthcare systems, clinical practices, and research institutions may not have the technical infrastructure, functional workflows, workforce capacity, and training to support PGHD intake. They may be unsure how to generate actionable insights from the voluminous data. And, they may worry about how PGHD could add to their workloads and disrupt their workflows.
All healthcare stakeholders may face data- and device-related concerns. For example, consumers may abandon their devices, and researchers may be challenged to verify the accuracy and validity of PGHD from wellness devices. For clinicians, PGHD use may introduce new liability concerns. What if inaccurate PGHD is used in clinical decisions? What if a physician chooses not to review or act on PGHD received? Meanwhile, the devices introduce new security risks, and they produce data which need to be standardized against other formats before it can be helpful.
An important goal of the project was to test the initial findings and recommendations in the real world for inclusion in the final white paper. Accenture engaged with two digital health technology organizations and their care delivery partners to see how the concepts would perform with actual clinicians and patients:
At the heart of the project is the team’s examination of seven PGHD policy topic areas:
Patient Recruitment for Research Studies and Trials
how PGHD can be used to identify patients for research studies and trials and to connect patients directly with researchers
Collection and Validation of Data and Tools
exploring existing and emerging tools for capturing PGHD, as well as the types of PGHD that clinicians and researchers collect and how they validate the data and tools
studying patient expectations for sharing data with clinicians and researchers, including existing and emerging methods for “donating” data for research
Ability to Combine PGHD with Medical Record Data in Multiple Ways
examining opportunities to combine PGHD with clinical data for analysis and patient care, including methods for combining data from multiple sources and standards and technology needed to support this practice
researching benefits of and barriers to increased interoperability between the health IT system and devices used to capture PGHD
Big Data Analysis
assessing the technical and cultural challenges to using PGHD in big data analysis, including patient concerns about data privacy, storing and transmitting potentially large volumes of data, and providing clinically useful presentations of PGHD
discussing the current federal statutory and regulatory paradigms relevant to PGHD, including the tools and technologies used to capture PGHD
Accenture’s work with ONC affirmed the potential value of PGHD in care delivery and health research and provides flexible and actionable recommendations for how healthcare stakeholders can collaborate to realize that value together.
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