Consumer Views on Health Applications of Consumer Digital Data and Health Privacy Among US Adults: Qualitative Interview Study

Grande, David; Marti, Xochitl Luna; Merchant, Raina M.; Asch, David A.; Dolan, Abby; Sharma, Meghana; Cannuscio, Carolyn C.

doi:10.2196/29395

Cited by 10 publications

(7 citation statements)

References 19 publications

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“… 27 The conjoint attributes and levels were selected based on qualitative interviews with consumers and subject matter experts. 3 , 28 We conducted interviews 29 to evaluate the survey instrument for clarity and participant comprehension prior to administration.…”

Section: Methodsmentioning

confidence: 99%

Consumer Willingness to Share Personal Digital Information for Health-Related Uses

et al. 2022

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Key Points Question What factors are associated with consumers’ willingness to share their digital information for health-related uses? Findings In this survey study of 3543 US adults, consumer willingness to share digital data was associated with a range of factors, most importantly the source and type of data. Certain data (eg, financial, social media, public cameras) were viewed as more sensitive than electronic health record data, but underlying views on digital health privacy were strongly associated with consumer views on sharing any digital information. Meaning In this study, many consumers were reluctant to share their digital data for health-related uses, suggesting that new privacy protections may be needed to increase consumer trust.

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Section: Methodsmentioning

confidence: 99%

Consumer Willingness to Share Personal Digital Information for Health-Related Uses

et al. 2022

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“…28 The conjoint attributes and levels were selected based on qualitative interviews with consumers and subject matter experts. 29,30 We conducted cognitive interviews 31 to evaluate the survey instrument for clarity and participant comprehension prior to administration. Participants were asked to evaluate 9 scenarios (ie, profiles) randomly selected from the 192 total.…”

Section: Survey Administration and Conjoint Scenariosmentioning

confidence: 99%

Consumer Views on Privacy Protections and Sharing of Personal Digital Health Information

et al. 2023

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ImportanceDigital health information has many potential health applications, but privacy is a growing concern among consumers and policy makers. Consent alone is increasingly seen as inadequate to safeguard privacy.ObjectiveTo determine whether different privacy protections are associated with consumers’ willingness to share their digital health information for research, marketing, or clinical uses.Design, Setting, and ParticipantsThis 2020 national survey with an embedded conjoint experiment recruited US adults from a nationally representative sample with oversampling of Black and Hispanic individuals. Willingness to share digital information across 192 different scenarios reflecting the product of 4 possible privacy protections, 3 uses of information, 2 users of information, and 2 sources of digital information was evaluated. Each participant was randomly assigned 9 scenarios. The survey was administrated between July 10 and July 31, 2020, in Spanish and English. Analysis for this study was conducted between May 2021 and July 2022.Main Outcomes and MeasuresParticipants rated each conjoint profile on a 5-point Likert scale measuring their willingness to share their personal digital information (with 5 indicating the most willingness to share). Results are reported as adjusted mean differences.ResultsOf the 6284 potential participants, 3539 (56%) responded to the conjoint scenarios. A total of 1858 participants (53%) were female, 758 (21%) identified as Black, 833 (24%) identified as Hispanic, 1149 (33%) had an annual income less than $50 000, and 1274 (36%) were 60 years or older. Participants were more willing to share health information with the presence of each individual privacy protection, including consent (difference, 0.32; 95% CI, 0.29-0.35; P &lt; .001), followed by data deletion (difference, 0.16; 95% CI, 0.13-0.18; P &lt; .001), oversight (difference, 0.13; 95% CI, 0.10-0.15; P &lt; .001), and transparency of data collected (difference, 0.08; 95% CI, 0.05-0.10; P &lt; .001). The relative importance (importance weight on a 0%-100% scale) was greatest for the purpose of use (29.9%) but when considered collectively, the 4 privacy protections together were the most important (51.5%) factor in the conjoint experiment. When the 4 privacy protections were considered separately, consent was the most important (23.9%).Conclusions and RelevanceIn this survey study of a nationally representative sample of US adults, consumers’ willingness to share personal digital health information for health purposes was associated with the presence of specific privacy protections beyond consent alone. Additional protections, including data transparency, oversight, and data deletion may strengthen consumer confidence in sharing their personal digital health information.

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“…Currently, health data goes beyond the professional's office. Due to the ever-increasing amount of data derived from digital technologies, there is a need for greater transparency in collection and use of this information and broader health privacy safeguards 24 . Therefore, choosing to use safer frameworks, such as linking users to an institution and requiring registration, is a security measure.…”

Section: /15mentioning

confidence: 99%

Codesign of a Care-Educational App for People With Heart Failure: Design, Prototyping and Co-Implementation

Cestari

Florêncio

Garcês

et al. 2022

Texto contexto - enferm.

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Objective to describe the process corresponding to the design, prototyping and co-implementation of a care-educational app prototype for vulnerable people with heart failure, their family members/caregivers and the health team. Method a methodological study with five phases: Construct, Design, Prototyping, Co-implementation and Adaptation, all performed from September 2020 to July 2021. The Codesign team involved 72 actors (15 patients with HF, 19 family members/caregivers, 35 health professionals, two researchers and a designer and developer), who contributed with linguistic and visual data. Results the InCare® prototype was produced, represented by the flowchart corresponding to the user's interaction and structural sketches. Colors were defined to compose the screens and the prototype resources were chosen, outlining the description, proposal and functional requirements. The app involved relevant themes (definition of the disease and vulnerability, etiology, classification, signs and symptoms, daily care measures and palliative approaches, treatments, diet, physical activity and support networks, benefits) and gathered functionalities according to the team's needs and preferences, being considered innovative and encouraging for self-care. Conclusion codesign allowed designing resources, contents, screen sketches, user flow, prototyping and prototype name, in a creative and participatory process to promote the health of people with heart failure in vulnerable health situations.

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Consumer Views on Health Applications of Consumer Digital Data and Health Privacy Among US Adults: Qualitative Interview Study

Cited by 10 publications

References 19 publications

Consumer Willingness to Share Personal Digital Information for Health-Related Uses

Consumer Willingness to Share Personal Digital Information for Health-Related Uses

Consumer Views on Privacy Protections and Sharing of Personal Digital Health Information

Codesign of a Care-Educational App for People With Heart Failure: Design, Prototyping and Co-Implementation

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