Value of Engagement in Digital Health Technology Research: Evidence Across 6 Unique Cohort Studies.

Autor: Goodday SM; 4YouandMe, Seattle, WA, United States.; Department of Psychiatry, University of Oxford, Oxford, United Kingdom., Karlin E; 4YouandMe, Seattle, WA, United States., Brooks A; 4YouandMe, Seattle, WA, United States., Chapman C; Crohn's & Colitis Foundation, New York, NY, United States., Harry C; 4YouandMe, Seattle, WA, United States., Lugo N; 4YouandMe, Seattle, WA, United States., Peabody S; 4YouandMe, Seattle, WA, United States., Rangwala S; Section of Urology and Renal Transplantation, Virginia Mason Francisan Health, Seattle, WA, United States., Swanson E; 4YouandMe, Seattle, WA, United States., Tempero J; 4YouandMe, Seattle, WA, United States., Yang R; 4YouandMe, Seattle, WA, United States., Karlin DR; 4YouandMe, Seattle, WA, United States.; MindMed Inc, New York, NY, United States.; Tufts University School of Medicine, Boston, MA, United States., Rabinowicz R; Department of Paediatrics, University of Toronto, Toronto, ON, Canada.; Department of Pediatric Hematology/Oncology, Schneider Children's Medical Center of Israel, Petach-Tikva, Israel., Malkin D; Department of Paediatrics, University of Toronto, Toronto, ON, Canada.; Department of Pediatrics, University of Toronto, Toronto, ON, Canada., Travis S; Gasteroentology Unit, Oxford University Hospitals NHS Foundation Trust and Biomedical Research Centre, Oxford, United Kingdom., Walsh A; Gasteroentology Unit, Oxford University Hospitals NHS Foundation Trust and Biomedical Research Centre, Oxford, United Kingdom., Hirten RP; The Dr. Henry D. Janowitz Division of Gastroenterology, Icahn School of Medicine at Mount Sinai, New York, NY, United States., Sands BE; The Dr. Henry D. Janowitz Division of Gastroenterology, Icahn School of Medicine at Mount Sinai, New York, NY, United States., Bettegowda C; Department of Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, MD, United States., Holdhoff M; The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD, United States., Wollett J; Department of Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, MD, United States., Szajna K; Department of Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, MD, United States., Dirmeyer K; Department of Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, MD, United States., Dodd A; Princess Margaret Cancer Center, University Health Network, Toronto, ON, Canada., Hutchinson S; Princess Margaret Cancer Center, University Health Network, Toronto, ON, Canada., Ramotar S; Princess Margaret Cancer Center, University Health Network, Toronto, ON, Canada., Grant RC; Princess Margaret Cancer Center, University Health Network, Toronto, ON, Canada., Boch A; Evidation Health Inc, Santa Mateo, CA, United States., Wildman M; Sage Bionetworks, Seattle, WA, United States., Friend SH; Department of Psychiatry, University of Oxford, Oxford, United Kingdom.; Section of Urology and Renal Transplantation, Virginia Mason Francisan Health, Seattle, WA, United States.
Jazyk: angličtina
Zdroj: Journal of medical Internet research [J Med Internet Res] 2024 Sep 03; Vol. 26, pp. e57827. Date of Electronic Publication: 2024 Sep 03.
DOI: 10.2196/57827
Abstrakt: Background: Wearable digital health technologies and mobile apps (personal digital health technologies [DHTs]) hold great promise for transforming health research and care. However, engagement in personal DHT research is poor.
Objective: The objective of this paper is to describe how participant engagement techniques and different study designs affect participant adherence, retention, and overall engagement in research involving personal DHTs.
Methods: Quantitative and qualitative analysis of engagement factors are reported across 6 unique personal DHT research studies that adopted aspects of a participant-centric design. Study populations included (1) frontline health care workers; (2) a conception, pregnant, and postpartum population; (3) individuals with Crohn disease; (4) individuals with pancreatic cancer; (5) individuals with central nervous system tumors; and (6) families with a Li-Fraumeni syndrome affected member. All included studies involved the use of a study smartphone app that collected both daily and intermittent passive and active tasks, as well as using multiple wearable devices including smartwatches, smart rings, and smart scales. All studies included a variety of participant-centric engagement strategies centered on working with participants as co-designers and regular check-in phone calls to provide support over study participation. Overall retention, probability of staying in the study, and median adherence to study activities are reported.
Results: The median proportion of participants retained in the study across the 6 studies was 77.2% (IQR 72.6%-88%). The probability of staying in the study stayed above 80% for all studies during the first month of study participation and stayed above 50% for the entire active study period across all studies. Median adherence to study activities varied by study population. Severely ill cancer populations and postpartum mothers showed the lowest adherence to personal DHT research tasks, largely the result of physical, mental, and situational barriers. Except for the cancer and postpartum populations, median adherences for the Oura smart ring, Garmin, and Apple smartwatches were over 80% and 90%, respectively. Median adherence to the scheduled check-in calls was high across all but one cohort (50%, IQR 20%-75%: low-engagement cohort). Median adherence to study-related activities in this low-engagement cohort was lower than in all other included studies.
Conclusions: Participant-centric engagement strategies aid in participant retention and maintain good adherence in some populations. Primary barriers to engagement were participant burden (task fatigue and inconvenience), physical, mental, and situational barriers (unable to complete tasks), and low perceived benefit (lack of understanding of the value of personal DHTs). More population-specific tailoring of personal DHT designs is needed so that these new tools can be perceived as personally valuable to the end user.
(©Sarah M Goodday, Emma Karlin, Alexa Brooks, Carol Chapman, Christiana Harry, Nelly Lugo, Shannon Peabody, Shazia Rangwala, Ella Swanson, Jonell Tempero, Robin Yang, Daniel R Karlin, Ron Rabinowicz, David Malkin, Simon Travis, Alissa Walsh, Robert P Hirten, Bruce E Sands, Chetan Bettegowda, Matthias Holdhoff, Jessica Wollett, Kelly Szajna, Kallan Dirmeyer, Anna Dodd, Shawn Hutchinson, Stephanie Ramotar, Robert C Grant, Adrien Boch, Mackenzie Wildman, Stephen H Friend. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 03.09.2024.)
Databáze: MEDLINE