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The ONC White Paper “Infrastructure for Patient-Generated Health Data Through 2024” – Recap and Reflections

Janice MacLeod, MA, RDN, LDN, CDE |

Early in 2018 the Office of the National Coordinator for Health Information Technology, simply known as ONC, released the white paper, “Conceptualizing a Data Infrastructure for the Capture, Use, and Sharing of Patient-Generated Health Data (PGHD) in Care Delivery and Research through 2024.”1 This white paper is, in essence, a policy framework that identifies best practices, gaps, and opportunities for progress in the collection and use of PGHD in care delivery and research through 2024. This Insights offers my reflections on this report as a clinician deeply engaged in the integration of digital health in the transformation of healthcare delivery.

Define Patient-Generated Health Data

PGDH is defined as health-related data created, recorded, or gathered by the individual (or other caregivers) to help address a health concern. PGHD may include health and treatment history, biometric data and/or symptoms and lifestyle choices.1 PGHD differs from clinical data in that the individual, not the providers, record and provide the data and then share it with their healthcare providers and other stakeholders. This puts the individual at the center of their care.

Today’s Current Use of PGHD in Healthcare Delivery

PGHD has proliferated with the wide adoption of smartphones and use of lifestyle tools, digital health therapeutics and remote monitoring devices. The ability for consumers to track, monitor and share PGHD remotely with their healthcare providers has begun to and will increasingly offer clinicians a valuable stream of data to utilize in clinical decision making and perhaps increase the use of shared decision making – a valuable tool in disease prevention and self-management.

This ONC white paper details how providers who incorporate PGHD into their clinical workflows need guidance, best practices and training to minimize implementation challenges. The white paper recommends that consumers, clinicians, researchers and payers to work together to identify health conditions where the integration of PGHD into clinical workflows and research designs can have maximal impact and value across all areas of the healthcare system.

A Glimpse of the Future State – 2024

The ONC white paper presents a PGHD Adoption Curve (Figure 1 on page 10 of the white paper1) to offer a vision the future state when PGHD is fully integrated into healthcare delivery and clinical research.1 The figure divides the time span between 2012 -2024 into 4 phases from early Exploration & Investment to Maturity in 2024.

It is estimated that 60% or greater of the impact on health outcomes reflects a combination of social determinants, the environment and behavior and is not associated with biologic information. This point clarifies why PGHD in clinical care, particularly for chronic conditions such as diabetes, hypertension, congestive heart failure, can provide clinicians with a more holistic picture of person’s situation.2 When data are collected, either by the individual or the clinician, the PGHD can be “viewed” at or between care encounters. These new tools enable achieving several goals that can improve care delivery and outcomes in the following ways:

  • Empower the individual, whether in a healthy or ill state, to implement better care and self-management
  • Strengthen the conversation between the individual or caregiver by being able to provide the provider a more complete picture of the person’s health status over time
  • Facilitate the use of shared clinical decision making
  • Develop a more collaborative and realistic care plan to maximize adherence
  • Reduce the time, effort, and cost associated with physical clinician visits to discuss changes in care

Application of PGHD in Clinical Practice: A Real-World Study

In my role as a digital health clinician for WellDoc, I have had the opportunity to witness the application of PGHD first hand. One example was from a small (n=43) real-world study conducted in a collaboration between healthcare providers, WellDoc, my employer, and the Peers for Progress program based at the University of North Carolina, Gillings School of Public Health.3

This 6-month observational study was designed to evaluate the use of a lay coach in primary care settings along with the medical mobile app BlueStar, Welldoc’s FDA-cleared digital health therapeutic to assist adults with type 2 diabetes to improve their care and outcomes.

The study clinicians were intrigued to observe how viewing PGHD and seeing just how the individual was implementing diabetes self-care enriched the conversations between the lay coach and the individual. Access to PGHD proved a valuable indicator of the person’s interest in their diabetes self-care. Additionally, having access to the summarized clinical PGHD enabled by the BlueStar device facilitated focused care coordination efforts, timely care plan progression, and collaboration among healthcare team members. Using this eHealth-assisted lay health coaching model in this small study resulted in an average A1c reduction of 1.7% from an average baseline A1C of 9.7% among participants who actively engaged in the program.


As a digital health clinician who has worked in a wide variety of practice settings that are at various stages of adoption with PGHD and digital health therapeutics, I eagerly await the future vision described in this ONC white paper. I’m optimistic that between changes in healthcare delivery, value-based payment models, coverage and reimbursement, lightning speed changes in technology and consumer expectations, the use of PGHD will become the usual currency to drive healthcare and increase positive outcomes. This valuable far-reaching white paper methodically lays out the steps that must occur for us to reach this goal.


  1. Accenture Federal Services for the Office of the National Coordinator for Health Information Technology. Conceptualizing a data infrastructure for the capture, use, and sharing of patient-generated health data in care delivery and research through 2024. White Paper Order No. HHSP23337001T, January 2018. (Accessed April 6, 2018)
  2. Taylor LA, Tan AX, Coyle CE, Ndumele C, Rogan E, Canavan M, Curry LA, Bradley EH. Leveraging the social determinants of health: what works? PLoS ONE . 2016;11(8)1-20. April 6, 2018)
  3. Tang P, Peeples M, Duni J, Peskin S, Macleod J, Kowitt, S, Fisher E. eHealth-assisted lay health coaching for diabetes self-management support. American Diabetes Association Scientific Sessions, New Orleans, LA. 2016. (Poster)  (Accessed April 6, 2018)

The information we provide at and is not medical advice, nor is it intended to replace a consultation with a medical professional. Please inform your physician of any changes you make to your diet or lifestyle and discuss these changes with them. If you have questions or concerns about any medical conditions you may have, please contact your physician.