{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T23:24:17Z","timestamp":1787009057451,"version":"3.56.0"},"reference-count":18,"publisher":"Oxford University Press (OUP)","issue":"10","license":[{"start":{"date-parts":[[2019,4,22]],"date-time":"2019-04-22T00:00:00Z","timestamp":1555891200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/journals\/pages\/open_access\/funder_policies\/chorus\/standard_publication_model"}],"funder":[{"DOI":"10.13039\/100000905","name":"The Commonwealth Fund","doi-asserted-by":"crossref","award":["20171044"],"award-info":[{"award-number":["20171044"]}],"id":[{"id":"10.13039\/100000905","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2019,10,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>Although patient generated health data (PGHD) has stimulated excitement about its potential to increase patient engagement and to offer clinicians new insights into patient health status, we know little about these efforts at scale and whether they align with patient preferences. This study sought to characterize provider-led PGHD approaches, assess whether they aligned with patient preferences, and identify challenges to scale and impact.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Materials and Methods<\/jats:title>\n                    <jats:p>We interviewed leaders from a geographically diverse set of health systems (n\u2009=\u20096), leaders from large electronic health record vendors (n\u2009=\u20093), and leaders from vendors providing PGHD solutions to health systems (n\u2009=\u20093). Next, we interviewed patients with 1 or more chronic conditions (n\u2009=\u200910), half of whom had PGHD experience. We conducted content analysis to characterize health system PGHD approaches, assess alignment with patient preferences, and identify challenges.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>In this study, 3 primary approaches were identified, and each was designed to support collection of a different type of PGHD: 1) health history, 2) validated questionnaires and surveys, and 3) biometric and health activity. Whereas patient preferences aligned with health system approaches, patients raised concerns about data security and the value of reporting. Health systems cited challenges related to lack of reimbursement, data quality, and clinical usefulness of PGHD.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>Despite a federal policy focus on PGHD, it is not yet being pursued at scale. Whereas many barriers contribute to this narrow pursuit, uncertainty around the value of PGHD, from both patients and providers, is a primary inhibitor.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Our results reveal a fairly narrow set of approaches to PGHD currently pursued by health systems at scale.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/jamia\/ocz045","type":"journal-article","created":{"date-parts":[[2019,3,19]],"date-time":"2019-03-19T17:04:19Z","timestamp":1553015059000},"page":"952-959","source":"Crossref","is-referenced-by-count":41,"title":["Early experiences with patient generated health data: health system and patient perspectives"],"prefix":"10.1093","volume":"26","author":[{"given":"Julia","family":"Adler-Milstein","sequence":"first","affiliation":[{"name":"Department of Medicine, School of Medicine, University of California San Francisco, San Francisco, California, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paige","family":"Nong","sequence":"additional","affiliation":[{"name":"Department of Learning Health Sciences, University of Michigan Medical School, Ann Arbor, Michigan, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2019,4,22]]},"reference":[{"key":"2020110613070429600_ocz045-B1","article-title":"Washington, DC: Accenture Federal Services","author":"Office of the National Coordinator (ONC)","year":"2016","journal-title":"Conceptualizing a Data Infrastructure for the Capture, Use and Sharing of Patient-Generated Health Data in Care Delivery and Research through 2024: Draft White Paper for a PGHD Policy Framework"},{"key":"2020110613070429600_ocz045-B2","volume-title":"Final Report: Demonstrating the Effectiveness of Patient Feedback in Improving the Accuracy of Medical 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Diabetes","volume":"17","author":"Wong","year":"2015","journal-title":"Technol Ther"},{"key":"2020110613070429600_ocz045-B13","article-title":"Medicare and Medicaid programs; Electronic Health Record Incentive Program-Stage 3 and modifications to Meaningful Use in 2015 through 2017","author":"Centers for Medicare and Medicaid Services (CMS)"},{"key":"2020110613070429600_ocz045-B14","article-title":"2015 Edition Base Electronic Health Record (EHR) Definition, and ONC Health IT Certification Program Modifications, 80 Fed. Reg. 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