Patient-generated health data management and quality challenges in remote patient monitoring. Issue 4 (20th September 2019)

• Record Type: Journal Article
• Authors: Abdolkhani, Robab; Gray, Kathleen; Borda, Ann; DeSouza, Ruth
• Is Part Of: JAMIA open. Volume 2:Issue 4(2019)
• Page Start: 471
• Page End: 478
• Publication Date: 2019-09-20
• Subjects: remote sensing technology -- data management -- data quality assurance -- patient generated health data -- wearable devices; Medical informatics -- Periodicals; 610.285
• DOI: 10.1093/jamiaopen/ooz036
• Languages: English
• ISSNs: 2574-2531

Abstract

Abstract: Background: Patient-Generated Health Data (PGHD) in remote monitoring programs is a promising source of precise, personalized data, encouraged by expanding growth in the health technologies market. However, PGHD utilization in clinical settings is low. One of the critical challenges that impedes confident clinical use of PGHD is that these data are not managed according to any recognized approach for data quality assurance. Objective: This article aims to identify the PGHD management and quality challenges that such an approach must address, as these are expressed by key PGHD stakeholder groups. Materials and Methods: In-depth interviews were conducted with 20 experts who have experience in the use of PGHD in remote patient monitoring, including: healthcare providers, health information professionals within clinical settings, and commercial providers of remote monitoring solutions. Participants were asked to describe PGHD management processes in the remote monitoring programs in which they are involved, and to express their perspectives on PGHD quality challenges during the data management stages. Results: The remote monitoring programs in the study did not follow clear PGHD management or quality assurance approach. Participants were not fully aware of all the considerations of PGHD quality. Digital health literacy, wearable accuracy, difficulty in data interpretation, and lack of PGHD integration with electronic medical record systems were among the key challenges identified that impact PGHD quality. Conclusion: Co-development of PGHD quality guidelines with relevant stakeholders, including patients, is needed to ensure that quality remote monitoring data from wearables is available for use in more precise and personalized patient care.