Applying the Digital Health Social Justice Guide

Figueroa, Caroline A.; Murayama, Hikari; Amorim, Priscila Carcamo; White, Alison; Quiterio, Ashley; Luo, Tiffany; Aguilera, Adrián; Smith, Angela D. R.; Lyles, Courtney R.; Robinson, Victoria; Vacano, Claudia von

doi:10.3389/fdgth.2022.807886

Cited by 21 publications

(12 citation statements)

References 53 publications

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“…Applied to remote digital health studies, high-complexity tasks come in the form of many required tasks over long study periods. Provision of assistance during participant onboarding may improve digital literacy skills of participants, while also instilling a sense of trust between the participant and the researcher through personal interactions [ 42 , 43 ].…”

Section: Introductionmentioning

confidence: 99%

Enrollment and Retention of Participants in Remote Digital Health Studies: Scoping Review and Framework Proposal

Daniore¹,

Nittas²,

Wyl³

2022

J Med Internet Res

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Background Digital technologies are increasingly used in health research to collect real-world data from wider populations. A new wave of digital health studies relies primarily on digital technologies to conduct research entirely remotely. Remote digital health studies hold promise to significant cost and time advantages over traditional, in-person studies. However, such studies have been reported to typically suffer from participant attrition, the sources for which are still largely understudied. Objective To contribute to future remote digital health study planning, we present a conceptual framework and hypotheses for study enrollment and completion. The framework introduces 3 participation criteria that impact remote digital health study outcomes: (1) participant motivation profile and incentives or nudges, (2) participant task complexity, and (3) scientific requirements. The goal of this study is to inform the planning and implementation of remote digital health studies from a person-centered perspective. Methods We conducted a scoping review to collect information on participation in remote digital health studies, focusing on methodological aspects that impact participant enrollment and retention. Comprehensive searches were conducted on the PubMed, CINAHL, and Web of Science databases, and additional sources were included in our study from citation searching. We included digital health studies that were fully conducted remotely, included information on at least one of the framework criteria during recruitment, onboarding or retention phases of the studies, and included study enrollment or completion outcomes. Qualitative analyses were performed to synthesize the findings from the included studies. Results We report qualitative findings from 37 included studies that reveal high values of achieved median participant enrollment based on target sample size calculations, 128% (IQR 100%-234%), and median study completion, 48% (IQR 35%-76%). Increased median study completion is observed for studies that provided incentives or nudges to extrinsically motivated participants (62%, IQR 43%-78%). Reducing task complexity for participants in the absence of incentives or nudges did not improve median study enrollment (103%, IQR 102%-370%) or completion (43%, IQR 22%-60%) in observational studies, in comparison to interventional studies that provided more incentives or nudges (median study completion rate of 55%, IQR 38%-79%). Furthermore, there were inconsistencies in measures of completion across the assessed remote digital health studies, where only around half of the studies with completion measures (14/27, 52%) were based on participant retention throughout the study period. Conclusions Few studies reported on participatory factors and study outcomes in a consistent manner, which may have limited the evidence base for our study. Our assessment may also have suffered from publication bias or unrepresentative study samples due to an observed preference for participants with digital literacy skills in digital health studies. Nevertheless, we find that future remote digital health study planning can benefit from targeting specific participant profiles, providing incentives and nudges, and reducing study complexity to improve study outcomes.

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Section: Introductionmentioning

confidence: 99%

Enrollment and Retention of Participants in Remote Digital Health Studies: Scoping Review and Framework Proposal

Daniore¹,

Nittas²,

Wyl³

2022

J Med Internet Res

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“…Furthermore, these results may reflect areas of CVH literacy that are of high interest to African American patients. Thus, digital health interventions should contextualize health education features to meet the learning priorities of African American patients as a form of digital health social justice [ 73 ].…”

Section: Discussionmentioning

confidence: 99%

mHealth Intervention for Promoting Hypertension Self-management Among African American Patients Receiving Care at a Community Health Center: Formative Evaluation of the FAITH! Hypertension App

Brewer¹,

Jones²,

Slusser³

et al. 2023

JMIR Form Res

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Background African American individuals are at a higher risk of premature death from cardiovascular diseases than White American individuals, with disproportionate attributable risk from uncontrolled hypertension. Given their high use among African American individuals, mobile technologies, including smartphones, show promise in increasing reliable health information access. Culturally tailored mobile health (mHealth) interventions may promote hypertension self-management among this population. Objective This formative study aimed to assess the feasibility of integrating an innovative mHealth intervention into clinical and community settings to improve blood pressure (BP) control among African American patients. Methods A mixed methods study of African American patients with uncontrolled hypertension was conducted over 2 consecutive phases. In phase 1, patients and clinicians from 2 federally qualified health centers (FQHCs) in the Minneapolis-St Paul, Minnesota area, provided input through focus groups to refine an existing culturally tailored mHealth app (Fostering African-American Improvement in Total Health! [FAITH!] App) for promoting hypertension self-management among African American patients with uncontrolled hypertension (renamed as FAITH! Hypertension App). Phase 2 was a single-arm pre-post intervention pilot study assessing feasibility and patient satisfaction. Patients receiving care at an FQHC participated in a 10-week intervention using the FAITH! Hypertension App synchronized with a wireless BP monitor and community health worker (CHW) support to address social determinants of health–related social needs. The multimedia app consisted of a 10-module educational series focused on hypertension and cardiovascular risk factors with interactive self-assessments, medication and BP self-monitoring, and social networking. Primary outcomes were feasibility (app engagement and satisfaction) and preliminary efficacy (change in BP) at an immediate postintervention assessment. Results In phase 1, thirteen African American patients (n=9, 69% aged ≥50 years and n=10, 77% women) and 16 clinicians (n=11, 69% aged ≥50 years; n=14, 88% women; and n=10, 63% African American) participated in focus groups. Their feedback informed app modifications, including the addition of BP and medication tracking, BP self-care task reminders, and culturally sensitive contexts. In phase 2, sixteen African American patients were enrolled (mean age 52.6, SD 12.3 years; 12/16, 75% women). Overall, 38% (6/16) completed ≥50% of the 10 education modules, and 44% (7/16) completed the postintervention assessment. These patients rated the intervention a 9 (out of 10) on its helpfulness in hypertension self-management. Qualitative data revealed that they viewed the app as user-friendly, engaging, and informative, and CHWs were perceived as providing accountability and support. The mean systolic and diastolic BPs of the 7 patients decreased by 6.5 mm Hg (P=.15) and 2.8 mm Hg (P=.78), respectively, at the immediate postintervention assessment. Conclusions A culturally tailored mHealth app reinforced by CHW support may improve hypertension self-management among underresourced African American individuals receiving care at FQHCs. A future randomized efficacy trial of this intervention is warranted. Trial Registration ClinicalTrials.gov NCT04554147; https://clinicaltrials.gov/ct2/show/NCT04554147

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“…Zudem liegen soziologische Arbeiten vor zur Notwendigkeit, mHealth und Eigenverantwortung für Gesundheit vor dem Hintergrund ungleicher sozialer Bedingungen und dem politischen und wirtschaftlichen Kontext zu diskutieren [ 11 ]. Eine vertiefte Diskussion zu Eigenverantwortung für Gesundheit, sozialer Gerechtigkeit und populationsbezogenen Vulnerabilitäten, wie sie in der Public-Health-Ethik in Bezug auf andere Themen kenntnisreich geführt wird, beginnt bisher jedoch erst in Ansätzen [ 12 – 16 ]. Die spezifische ethische Diskussion von Gerechtigkeitsaspekten zu mHealth im Bereich T2DM ist dadurch erschwert, dass nur spärliche empirische Ergebnisse zu sozialen Ungleichheiten in der Nutzung in diesem Bereich vorliegen.…”

Section: Hintergrundunclassified

“…Die digitale Partizipation innerhalb der Bevölkerung ist ungleich verteilt, was in der Literatur als Digital Divide beschrieben wird [ 51 ]: Menschen ohne Internetzugang oder Zugang zu digitalen Angeboten werden von den potenziell positiven Versorgungseffekten durch mHealth ausgeschlossen. Anders als oft vermutet, spielt dabei nicht nur das Alter eine entscheidende Rolle, sondern auch Bildung, Einkommen, Geschlecht und Migrationshintergrund [ 12 , 13 , 51 ].…”

Section: Verringert Oder Verschärft Die Nutzung Von Mhealth Im Bereic...unclassified

“…Diese Einschreibungsprozesse in der Technologieentwicklung müssen erkannt und stärker reflektiert werden, sonst besteht die Gefahr, dass sich soziale Gesundheitsungerechtigkeiten noch verschärfen, weil bestimmte Bevölkerungsgruppen nicht im gleichen Maße profitieren können wie der „ideale Prototyp“. Hier gibt es auch erste Ideen zur Gegensteuerung, wie beispielsweise das Digital Health Social Justice Tool Kit , konzipiert mit Technologieentwickler*innen als Zielgruppe [ 12 ]. Ob gesundheitliche Ungerechtigkeit aufgrund rassistischer Verzerrungen in digitalen Gesundheitstechnologien angesichts solcher Toolkits erkannt und adressiert werden können, muss sich noch erweisen.…”

Section: Verringert Oder Verschärft Die Nutzung Von Mhealth Im Bereic...unclassified

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Mobile health technologies, social justice and population-based vulnerabilities

Jansky

Machleid

Wild

2023

Bundesgesundheitsbl

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ZusammenfassungMobile Gesundheitstechnologien (mHealth) fördern den Trend hin zu Eigenverantwortung und Selbstmanagement. Ziel des Beitrags ist es, am Beispiel von Diabetes mellitus Typ 2 (T2DM) die Diskussion zu mHealth, Eigenverantwortung und Gerechtigkeit – welche es bisher nur in Ansätzen gibt – aus einer Public-Health-ethischen Perspektive zu vertiefen. Dabei zeigt sich, dass mHealth im Bereich T2DM soziale Gesundheitsgerechtigkeit einerseits verbessern, andererseits aber auch soziale Gesundheitsungerechtigkeiten verschärfen kann. Aus einer gerechtigkeitsfokussierten, Public-Health-ethischen Perspektive auf T2DM-mHealth ist es notwendig, besser zu verstehen, ob und wie vulnerable Bevölkerungsgruppen bei mHealth-Entwicklung und -Einsatz mitbedacht werden, wie sie die Nutzung der Technologie erleben, welche sozialepidemiologischen Auswirkungen der zunehmende Einsatz von mHealth haben kann, welche gesundheitlichen Ungleichheiten im Bereich T2DM ungerecht sind, inwieweit die Eigenverantwortung in die Hände der Nutzenden gelegt werden soll und wo die Grenzen der Eigenverantwortung liegen. Die Berücksichtigung der sozialen Diversität und der sozialen Determinanten von Gesundheit ist ein stetiger Prozess und muss alle Phasen der Entwicklung und des Einsatzes von mHealth durchziehen.

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Applying the Digital Health Social Justice Guide

Cited by 21 publications

References 53 publications

Enrollment and Retention of Participants in Remote Digital Health Studies: Scoping Review and Framework Proposal

Enrollment and Retention of Participants in Remote Digital Health Studies: Scoping Review and Framework Proposal

mHealth Intervention for Promoting Hypertension Self-management Among African American Patients Receiving Care at a Community Health Center: Formative Evaluation of the FAITH! Hypertension App

Mobile health technologies, social justice and population-based vulnerabilities

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