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

DHT DHTs adherence app application applications apps digital health digital health technologies digital health technology engagement mHealth mobile health mobile phone participatory participatory medicine retention wearable wearables

Journal

Journal of medical Internet research
ISSN: 1438-8871
Titre abrégé: J Med Internet Res
Pays: Canada
ID NLM: 100959882

Informations de publication

Date de publication:
03 Sep 2024
Historique:
received: 06 03 2024
accepted: 29 05 2024
revised: 12 04 2024
medline: 3 9 2024
pubmed: 3 9 2024
entrez: 3 9 2024
Statut: epublish

Résumé

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. 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. 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. 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. 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.

Sections du résumé

BACKGROUND 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 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 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 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 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.

Identifiants

pubmed: 39226552
pii: v26i1e57827
doi: 10.2196/57827
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

e57827

Informations de copyright

©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.

Auteurs

Sarah M Goodday (SM)

4YouandMe, Seattle, WA, United States.
Department of Psychiatry, University of Oxford, Oxford, United Kingdom.

Emma Karlin (E)

4YouandMe, Seattle, WA, United States.

Alexa Brooks (A)

4YouandMe, Seattle, WA, United States.

Carol Chapman (C)

Crohn's & Colitis Foundation, New York, NY, United States.

Christiana Harry (C)

4YouandMe, Seattle, WA, United States.

Nelly Lugo (N)

4YouandMe, Seattle, WA, United States.

Shannon Peabody (S)

4YouandMe, Seattle, WA, United States.

Shazia Rangwala (S)

Section of Urology and Renal Transplantation, Virginia Mason Francisan Health, Seattle, WA, United States.

Ella Swanson (E)

4YouandMe, Seattle, WA, United States.

Jonell Tempero (J)

4YouandMe, Seattle, WA, United States.

Robin Yang (R)

4YouandMe, Seattle, WA, United States.

Daniel R Karlin (DR)

4YouandMe, Seattle, WA, United States.
MindMed Inc, New York, NY, United States.
Tufts University School of Medicine, Boston, MA, United States.

Ron 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.

David Malkin (D)

Department of Paediatrics, University of Toronto, Toronto, ON, Canada.
Department of Pediatrics, University of Toronto, Toronto, ON, Canada.

Simon Travis (S)

Gasteroentology Unit, Oxford University Hospitals NHS Foundation Trust and Biomedical Research Centre, Oxford, United Kingdom.

Alissa Walsh (A)

Gasteroentology Unit, Oxford University Hospitals NHS Foundation Trust and Biomedical Research Centre, Oxford, United Kingdom.

Robert P Hirten (RP)

The Dr. Henry D. Janowitz Division of Gastroenterology, Icahn School of Medicine at Mount Sinai, New York, NY, United States.

Bruce E Sands (BE)

The Dr. Henry D. Janowitz Division of Gastroenterology, Icahn School of Medicine at Mount Sinai, New York, NY, United States.

Chetan Bettegowda (C)

Department of Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, MD, United States.

Matthias Holdhoff (M)

The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD, United States.

Jessica Wollett (J)

Department of Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, MD, United States.

Kelly Szajna (K)

Department of Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, MD, United States.

Kallan Dirmeyer (K)

Department of Neurosurgery, Johns Hopkins University School of Medicine, Baltimore, MD, United States.

Anna Dodd (A)

Princess Margaret Cancer Center, University Health Network, Toronto, ON, Canada.

Shawn Hutchinson (S)

Princess Margaret Cancer Center, University Health Network, Toronto, ON, Canada.

Stephanie Ramotar (S)

Princess Margaret Cancer Center, University Health Network, Toronto, ON, Canada.

Robert C Grant (RC)

Princess Margaret Cancer Center, University Health Network, Toronto, ON, Canada.

Adrien Boch (A)

Evidation Health Inc, Santa Mateo, CA, United States.

Mackenzie Wildman (M)

Sage Bionetworks, Seattle, WA, United States.

Stephen H 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.

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