Indicators of retention in remote digital health studies: a cross-study evaluation of 100,000 participants

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Abstract

Digital technologies such as smartphones are transforming the way scientists conduct biomedical research. Several remotely conducted studies have recruited thousands of participants over a span of a few months allowing researchers to collect real-world data at scale and at a fraction of the cost of traditional research. Unfortunately, remote studies have been hampered by substantial participant attrition, calling into question the representativeness of the collected data including generalizability of outcomes. We report the findings regarding recruitment and retention from eight remote digital health studies conducted between 2014–2019 that provided individual-level study-app usage data from more than 100,000 participants completing nearly 3.5 million remote health evaluations over cumulative participation of 850,000 days. Median participant retention across eight studies varied widely from 2–26 days (median across all studies = 5.5 days). Survival analysis revealed several factors significantly associated with increase in participant retention time, including (i) referral by a clinician to the study (increase of 40 days in median retention time); (ii) compensation for participation (increase of 22 days, 1 study); (iii) having the clinical condition of interest in the study (increase of 7 days compared with controls); and (iv) older age (increase of 4 days). Additionally, four distinct patterns of daily app usage behavior were identified by unsupervised clustering, which were also associated with participant demographics. Most studies were not able to recruit a sample that was representative of the race/ethnicity or geographical diversity of the US. Together these findings can help inform recruitment and retention strategies to enable equitable participation of populations in future digital health research.

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Just-in-Time Adaptive Interventions (JITAIs) in Mobile Health: Key Components and Design Principles for Ongoing Health Behavior Support

Inbal Nahum-Shani, Shawna Smith, Bonnie J Spring … (2017)

Background The just-in-time adaptive intervention (JITAI) is an intervention design aiming to provide the right type/amount of support, at the right time, by adapting to an individual’s changing internal and contextual state. The availability of increasingly powerful mobile and sensing technologies underpins the use of JITAIs to support health behavior, as in such a setting an individual’s state can change rapidly, unexpectedly, and in his/her natural environment. Purpose Despite the increasing use and appeal of JITAIs, a major gap exists between the growing technological capabilities for delivering JITAIs and research on the development and evaluation of these interventions. Many JITAIs have been developed with minimal use of empirical evidence, theory, or accepted treatment guidelines. Here, we take an essential first step towards bridging this gap. Methods Building on health behavior theories and the extant literature on JITAIs, we clarify the scientific motivation for JITAIs, define their fundamental components, and highlight design principles related to these components. Examples of JITAIs from various domains of health behavior research are used for illustration. Conclusions As we enter a new era of technological capacity for delivering JITAIs, it is critical that researchers develop sophisticated and nuanced health behavior theories capable of guiding the construction of such interventions. Particular attention has to be given to better understanding the implications of providing timely and ecologically sound support for intervention adherence and retention We clarify the scientific motivation for the Just-In-Time Adaptive Interventions, define its fundamental components, and discuss key design principles for each component.

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Understanding factors affecting patient and public engagement and recruitment to digital health interventions: a systematic review of qualitative studies

Siobhan O’Connor, Peter Hanlon, Catherine A O'Donnell … (2016)

Background Numerous types of digital health interventions (DHIs) are available to patients and the public but many factors affect their ability to engage and enrol in them. This systematic review aims to identify and synthesise the qualitative literature on barriers and facilitators to engagement and recruitment to DHIs to inform future implementation efforts. Methods PubMed, MEDLINE, CINAHL, Embase, Scopus and the ACM Digital Library were searched for English language qualitative studies from 2000 – 2015 that discussed factors affecting engagement and enrolment in a range of DHIs (e.g. ‘telemedicine’, ‘mobile applications’, ‘personal health record’, ‘social networking’). Text mining and additional search strategies were used to identify 1,448 records. Two reviewers independently carried out paper screening, quality assessment, data extraction and analysis. Data was analysed using framework synthesis, informed by Normalization Process Theory, and Burden of Treatment Theory helped conceptualise the interpretation of results. Results Nineteen publications were included in the review. Four overarching themes that affect patient and public engagement and enrolment in DHIs emerged; 1) personal agency and motivation; 2) personal life and values; 3) the engagement and recruitment approach; and 4) the quality of the DHI. The review also summarises engagement and recruitment strategies used. A preliminary DIgital Health EnGagement MOdel (DIEGO) was developed to highlight the key processes involved. Existing knowledge gaps are identified and a number of recommendations made for future research. Study limitations include English language publications and exclusion of grey literature. Conclusion This review summarises and highlights the complexity of digital health engagement and recruitment processes and outlines issues that need to be addressed before patients and the public commit to digital health and it can be implemented effectively. More work is needed to create successful engagement strategies and better quality digital solutions that are personalised where possible and to gain clinical accreditation and endorsement when appropriate. More investment is also needed to improve computer literacy and ensure technologies are accessible and affordable for those who wish to sign up to them. Systematic review registration International Prospective Register of Systematic Reviews CRD42015029846 Electronic supplementary material The online version of this article (doi:10.1186/s12911-016-0359-3) contains supplementary material, which is available to authorized users.

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Delivering interventions for depression by using the internet: randomised controlled trial.

Helen Christensen, Kathleen Griffiths, Anthony F. Jorm (2004)

To evaluate the efficacy of two internet interventions for community-dwelling individuals with symptoms of depression--a psychoeducation website offering information about depression and an interactive website offering cognitive behaviour therapy. Randomised controlled trial. Internet users in the community, in Canberra, Australia. 525 individuals with increased depressive symptoms recruited by survey and randomly allocated to a website offering information about depression (n = 166) or a cognitive behaviour therapy website (n = 182), or a control intervention using an attention placebo (n = 178). Change in depression, dysfunctional thoughts; knowledge of medical, psychological, and lifestyle treatments; and knowledge of cognitive behaviour therapy. Intention to treat analyses indicated that information about depression and interventions that used cognitive behaviour therapy and were delivered via the internet were more effective than a credible control intervention in reducing symptoms of depression in a community sample. For the intervention that delivered cognitive behaviour therapy the reduction in score on the depression scale of the Center for Epidemiologic Studies was 3.2 (95% confidence interval 0.9 to 5.4). For the "depression literacy" site (BluePages), the reduction was 3.0 (95% confidence interval 0.6 to 5.2). Cognitive behaviour therapy (MoodGYM) reduced dysfunctional thinking and increased knowledge of cognitive behaviour therapy. Depression literacy (BluePages) significantly improved participants' understanding of effective evidence based treatments for depression (P < 0.05). Both cognitive behaviour therapy and psychoeducation delivered via the internet are effective in reducing symptoms of depression.