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

Janice MacLeod, MA, RDN, LDN, CDE
April 9, 2018

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)