Acceptance of Mobile Health in Communities Underrepresented in Biomedical Research: Barriers and Ethical Considerations for Scientists

Nebeker, Camille; Murray, Kate; Holub, Christina; Haughton, Jessica; Arredondo, Elva M.

doi:10.2196/mhealth.6494

Cited by 55 publications

(53 citation statements)

References 15 publications

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“…With the exception of Brighten study, the recruited sample was also inadequately diverse highlighting a persistent digital divide 54 and continued challenges in the recruitment of racial and ethnic underserved communities 55 . Additionally, the underrepresentation of States in the southern, rural and midwest regions indicates that areas of the US that often bear a disproportionate burden of disease 56 are under-represented in digital research 57 , 56 , 58 .…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2020

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Digital technologies such as smartphones are transforming the way scientists conduct biomedical research using real-world data. Several remotely-conducted studies have recruited thousands of participants over a span of a few months. Unfortunately, these studies are hampered by substantial participant attrition, calling into question the representativeness of the collected data including generalizability of findings from these studies. We report the challenges in retention and recruitment in eight remote digital health studies comprising over 100,000 participants who participated for more than 850,000 days, completing close to 3.5 million remote health evaluations. Survival modeling surfaced several factors significantly associated(P < 1e-16) with increase in median retention time i) Clinician referral(increase of 40 days), ii) Effect of compensation (22 days), iii) Clinical conditions of interest to the study (7 days) and iv)Older adults(4 days). Additionally, four distinct patterns of daily app usage behavior that were also associated(P < 1e-10) with participant demographics were identified. Most studies were not able to recruit a representative sample, either demographically or regionally. Combined 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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Section: Discussionmentioning

confidence: 99%

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

et al. 2020

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“…A total of 32 references has been included in this review. (Figure 1) Of these, 18 references were journal articles, [9][10][11][12][13][14][15][16][17][18][19][20][21][22][23][24][25][26] seven reviews, [27][28][29][30][31][32][33] three systematic reviews, [34][35][36] two survey results from Australia 37 and the USA, 38 one study report from Germany 6 and one qualitative study from Australia. 39 For further discourse, the principles of biomedical ethics defined by Beauchamp and Childress function as ethical endpoints.…”

Section: Resultsmentioning

confidence: 99%

“…12,35,37 One reference examined the use of mobile applications against the background of different social circumstances and settings and two publications address the ethical challenges linked with health and medical apps in aging societies. 18,36,38 Only one reference deals with the perspective of service providers. 25 In addition, several publications have highlighted the use of health applications in research and related ethical challenges.…”

Section: Resultsmentioning

confidence: 99%

Development and Presentation of an Ethical Framework for Health and Medical Apps

Tokgöz¹,

Eger²,

Funke³

et al. 2019

J Int Soc Telemed eHealth

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The ubiquity of mobile applications makes it difficult to weigh up opportunities and potential risks. One significant aspect of an ethical assessment regarding the development and use of health and medical apps is the lack of clear and consistent guidelines and measures of value. Aim: The aim of this paper was to identify the main ethical determinants associated in the context of health and medical apps and develop a framework for ethical reflection. Methods: A systematic literature search in the database PubMed was undertaken and the journal Biomed Central Medical Ethics was hand searched and 32 met the review criteria. On this basis of the review an interview guide was developed and five purposively selected experts on the field of payers, science, consumers, medical ethics and society were interviewed regarding health and medical apps. Results: There is a lack of consistent and clear guidelines regarding the use of health and medical apps in literature. Indeed, findings refer to established biomedical principles. The interviews identified that several insecurities related to legal and regulatory issues are common. On the other hand, many advantages of the use of health and medical apps have been pointed out by experts. Conclusion: Debates on ethics and the use of health and medical apps should play a significant role in public discussion. Ethical endpoints cannot be considered isolated from each other, and must be regarded as a complex network of aspects connected with each other. Further research should concentrate on the development of consistent guidelines and a framework for reflection of occurring ethical concerns.

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“…One week later, the researcher returned to gather the measurement tools and found that no data had been collected. Turns out a wrist-worn mobile technology was culturally unacceptable and drew unwanted attention to the women, so they did not wear it [53]. This story sheds light on the fact that while digital tools should improve access to health research and health care, they can also perpetuate disparities and prevent access if not well designed and deployed.…”

Section: Part Ii: Security Ethical Legal and Regulatory Consideratmentioning

confidence: 99%

Digital Medicine: A Primer on Measurement

et al. 2019

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Technology is changing how we practice medicine. Sensors and wearables are getting smaller and cheaper, and algorithms are becoming powerful enough to predict medical outcomes. Yet despite rapid advances, healthcare lags behind other industries in truly putting these technologies to use. A major barrier to entry is the cross-disciplinary approach required to create such tools, requiring knowledge from many people across many fields. We aim to drive the field forward by unpacking that barrier, providing a brief introduction to core concepts and terms that define digital medicine. Specifically, we contrast “clinical research” versus routine “clinical care,” outlining the security, ethical, regulatory, and legal issues developers must consider as digital medicine products go to market. We classify types of digital measurements and how to use and validate these measures in different settings. To make this resource engaging and accessible, we have included illustrations and figures throughout that we hope readers will borrow from liberally. This primer is the first in a series that will accelerate the safe and effective advancement of the field of digital medicine.

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Acceptance of Mobile Health in Communities Underrepresented in Biomedical Research: Barriers and Ethical Considerations for Scientists

Cited by 55 publications

References 15 publications

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

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

Development and Presentation of an Ethical Framework for Health and Medical Apps

Digital Medicine: A Primer on Measurement

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