Consumer Views on Health Applications of Consumer Digital Data and Health Privacy Among US Adults: Qualitative Interview Study.
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ABSTRACT: Background
In 2020, the number of internet users surpassed 4.6 billion. Individuals who create and share digital data can leave a trail of information about their habits and preferences that collectively generate a digital footprint. Studies have shown that digital footprints can reveal important information regarding an individual's health status, ranging from diet and exercise to depression. Uses of digital applications have accelerated during the COVID-19 pandemic where public health organizations have utilized technology to reduce the burden of transmission, ultimately leading to policy discussions about digital health privacy. Though US consumers report feeling concerned about the way their personal data is used, they continue to use digital technologies.Objective
This study aimed to understand the extent to which consumers recognize possible health applications of their digital data and identify their most salient concerns around digital health privacy.Methods
We conducted semistructured interviews with a diverse national sample of US adults from November 2018 to January 2019. Participants were recruited from the Ipsos KnowledgePanel, a nationally representative panel. Participants were asked to reflect on their own use of digital technology, rate various sources of digital information, and consider several hypothetical scenarios with varying sources and health-related applications of personal digital information.Results
The final cohort included a diverse national sample of 45 US consumers. Participants were generally unaware what consumer digital data might reveal about their health. They also revealed limited knowledge of current data collection and aggregation practices. When responding to specific scenarios with health-related applications of data, they had difficulty weighing the benefits and harms but expressed a desire for privacy protection. They saw benefits in using digital data to improve health, but wanted limits to health programs' use of consumer digital data.Conclusions
Current privacy restrictions on health-related data are premised on the notion that these data are derived only from medical encounters. Given that an increasing amount of health-related data is derived from digital footprints in consumer settings, our findings suggest the need for greater transparency of data collection and uses, and broader health privacy protections.
SUBMITTER: Grande D
PROVIDER: S-EPMC8262668 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description: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 < .001), followed by data deletion (difference, 0.16; 95% CI, 0.13-0.18; P < .001), oversight (difference, 0.13; 95% CI, 0.10-0.15; P < .001), and transparency of data collected (difference, 0.08; 95% CI, 0.05-0.10; P < .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.
| S-EPMC9982693 | biostudies-literature
Project description:ImportanceCurbing COVID-19 transmission is currently the greatest global public health challenge. Consumer digital tools used to collect data, such as the Apple-Google digital contact tracing program, offer opportunities to reduce COVID-19 transmission but introduce privacy concerns.ObjectiveTo assess uses of consumer digital information for COVID-19 control that US adults find acceptable and the factors associated with higher or lower approval of use of this information.Design, setting, and participantsThis cross-sectional survey study obtained data from a nationally representative sample of 6284 US adults recruited by email from the web-based Ipsos KnowledgePanel in July 2020. Respondents evaluated scenarios reflecting uses of digital data for COVID-19 control (case identification, digital contact tracing, policy setting, and enforcement of quarantines).Main outcomes and measuresLevels of support for use of personal digital data in 9 scenarios to mitigate the spread of COVID-19 infection, rated on a Likert scale, ranging from 1 (strongly disagree) to 5 (strongly agree). Multivariable linear regression models were fitted for each scenario and included factors hypothesized to be associated with views about digital data use for COVID-19 mitigation measures. Black and Hispanic survey respondents were oversampled; thus, poststratification weights were used so that results are representative of the general US population.ResultsOf 6284 individuals invited to participate in the study, 3547 responded, for a completion rate of 56%. A total of 1762 participants (52%) were female, 715 (21%) identified as Black, 790 (23%) identified as Hispanic, and 1224 (36%) were 60 years or older; mean (SD) age was 51.7 (16.6) years. Approval of scenarios was low, ranging from 28% to 43% (52%-67% when neutral responses were included). Differences were found based on digital data source (smartphone vs social media: coefficient, 0.29 [95% CI, 0.23-0.35]; P < .001; smart thermometer vs social media: coefficient, 0.09 [95% CI, 0.03-0.16]; P = .004). County COVID-19 rates (coefficient, -0.02; 95% CI, -0.16 to 0.13 for quartile 4 compared with quartile 1) and prior family diagnosis of COVID-19 (coefficient, 0.00; 95% CI, -0.25 to 0.25) were not associated with support. Compared with self-described liberal individuals, conservative (coefficient, -0.81; 95% CI, -0.96 to -0.66; P < .001) and moderate (coefficient, -0.52; 95% CI, -0.67 to -0.38; P < .001) individuals were less likely to support the scenarios. Similarly, large political differences were observed in support of the Apple-Google digital contact tracing program, with less support from conservative (coefficient, -0.99; 95% CI, -1.11 to -0.87; P < .001) and moderate (coefficient, -0.59; 95% CI, -0.69 to -0.48; P < .001) individuals compared with liberal individuals. Respondents from racial/ethnic minority groups were more supportive of the scenarios than were White, non-Hispanic respondents. For example, compared with White respondents, Black respondents were more supportive of the Apple-Google contact tracing program (coefficient, 0.20; 95% CI, 0.07-0.32; P = .002).Conclusions and relevanceIn this survey study of US adults, many were averse to their information being used on digital platforms to mitigate transmission of COVID-19. These findings suggest that in current and future pandemics, public health departments should use multiple strategies to gain public trust and accelerate adoption of tools such as digital contact tracing applications.
| S-EPMC8134997 | biostudies-literature
Project description:BackgroundMental health digital apps hold promise for providing scalable solutions to individual self-care, education, and illness prevention. However, a problem with these apps is that they lack engaging user interfaces and experiences and thus potentially result in high attrition. Although guidelines for new digital interventions for adults have begun to examine engagement, there is a paucity of evidence on how to best address digital interventions for adolescents. As adolescence is a period of transition, during which the onset of many potentially lifelong mental health conditions frequently occurs, understanding how best to engage this population is crucial.ObjectiveThe study aims to detect potential barriers to engagement and to gather feedback on the current elements of app design regarding user experience, user interface, and content.MethodsThis study used a qualitative design. A sample of 14 adolescents was asked to use the app for 1 week and was interviewed using a semistructured interview schedule. The interviews were transcribed and analyzed using thematic analysis.ResultsOverall, 13 participants completed the interviews. The authors developed 6 main themes and 20 subthemes based on the data that influenced engagement with and the perceived usefulness of the app. Our main themes were timing, stigma, perception, congruity, usefulness, and user experience.ConclusionsIn line with previous research, we suggest how these aspects of app development should be considered for future apps that aim to prevent and manage mental health conditions.
| S-EPMC8433947 | biostudies-literature
Project description:BackgroundMedical students show a relatively high prevalence for common mental disorders. Only few of those in need for treatment seek professional help. Therefore, easily accessible interventions are required. While several evidence-based internet- and mobile-based interventions (IMIs) have been proposed, little is known about medical students' attitudes towards using them.ObjectiveWe aimed to explore the views of medical students on IMIs as well as facilitators and barriers to use them and gain first insights into their preferences for tailored IMIs.MethodsWe conducted four focus groups with 26 medical students enrolled at a German medical school in March 2020. Focus groups were audio-recorded, transcribed and analyzed following established approaches for qualitative content analysis.ResultsMedical students valued IMIs for their low-threshold and flexible access, their potential to bridge waiting times and as a first step towards face-to-face-therapy. However, medical students preferred face-to-face interventions in case of severe mental health problems. The main disadvantages named by students included difficulties to find or decide on suitable IMIs based on clear quality criteria, fear of a misdiagnosis and lack of personalisation and human interaction. Some students also questioned the effectiveness of IMIs. Easy handling, flexible use, data safety and easily understandable terms of use were believed to facilitate the uptake of IMIs, whereas technical problems, frequent notifications, required internet access, need to register, lack of anonymity, high time expenditure and costs were reported to hinder their use. Most students did not prefer IMIs tailored to medical students but rather wanted to use IMIs suitable for students of all disciplines.ConclusionOur results suggest overall positive views regarding IMIs for mental health promotion but concerns regarding their use for severe mental disorders and acute crises. Our findings indicate that IMIs may represent promising tools for stress prevention and early interventions for medical students. Students explicitly stated to prefer quality-approved IMIs recommended and provided by their university.
| S-EPMC8122007 | biostudies-literature
Project description:The National Academy of Medicine has long advocated for a "learning healthcare system" that produces constantly updated reference data during the care process. Moving toward a rapid learning system to solve intractable problems in health demands a balance between protecting patients and making data available to improve health and health care. Public concerns in the U.S. about privacy and the potential for unethical or harmful uses of this data, if not proactively addressed, could upset this balance. New federal laws prioritize sharing health data, including with patient digital tools. U.S. health privacy laws do not cover data collected by many consumer digital technologies and have not been updated to address concerns about the entry of large technology companies into health care. Further, there is increasing recognition that many classes of data not traditionally considered to be healthcare-related, for example consumer credit histories, are indeed predictive of health status and outcomes. We propose a multi-pronged approach to protecting health-relevant data while promoting and supporting beneficial uses and disclosures to improve health and health care for individuals and populations. Such protections should apply to entities collecting health-relevant data regardless of whether they are covered by federal health privacy laws. We focus largely on privacy but also address protections against harms as a critical component of a comprehensive approach to governing health-relevant data. U.S. policymakers and regulators should consider these recommendations in crafting privacy bills and rules. However, our recommendations also can inform best practices even in the absence of new federal requirements.
| S-EPMC7782585 | biostudies-literature
Project description:Driven by data proliferation, digital technologies have transformed the marketing landscape. In parallel, significant privacy concerns have shaken consumer-firm relationships, prompting changes in both regulatory interventions and people's own privacy-protective behaviors. With a comprehensive analysis of digital technologies and data strategy informed by structuration theory and privacy literature, the authors consider privacy tensions as the product of firm-consumer interactions, facilitated by digital technologies. This perspective in turn implies distinct consumer, regulatory, and firm responses related to data protection. By consolidating various perspectives, the authors propose three tenets and seven propositions, supported by interview insights from senior managers and consumer informants, that create a foundation for understanding the digital technology implications for firm performance in contexts marked by growing privacy worries and legal ramifications. On the basis of this conceptual framework, they also propose a data strategy typology across two main strategic functions of digital technologies: data monetization and data sharing. The result is four distinct types of firms, which engage in disparate behaviors in the broader ecosystem pertaining to privacy issues. This article also provides directions for research, according to a synthesis of findings from both academic and practical perspectives.
| S-EPMC8897618 | biostudies-literature
Project description:BACKGROUND:A range of digital technologies are available to lay people to find, share, and generate health-related information. Few studies have directed attention specifically to how women are using these technologies from the diverse array available to them. Even fewer have focused on Australian women's use of digital health. OBJECTIVE:The Australian Women and Digital Health Project aimed to investigate which types of digital technologies women used regularly for health-related purposes and which they found most helpful and useful. Qualitative methods-semistructured interviews and focus groups-were employed to shed light on the situated complexities of the participants' enactments of digital health technologies. The project adopted a feminist new materialism theoretical perspective, focusing on the affordances, relational connections, and affective forces that came together to open up or close off the agential capacities generated with and through these enactments. METHODS:The project comprised two separate studies including a total of 66 women. In study 1, 36 women living in the city of Canberra took part in face-to-face interviews and focus groups, while study 2 involved telephone interviews with 30 women from other areas of Australia. RESULTS:The affordances of search engines to locate health information and websites and social media platforms for providing information and peer support were highly used and valued. Affective forces such as the desire for trust, motivation, empowerment, reassurance, control, care, and connection emerged in the participants' accounts. Agential capacities generated with and through digital health technologies included the capacity to seek and generate information and create a better sense of knowledge and expertise about bodies, illness, and health care, including the women's own bodies and health, that of their families and friends, and that of their often anonymous online social networks. The participants referred time and again to appreciating the feelings of agency and control that using digital health technologies afforded them. When the technologies failed to work as expected, these agential capacities were not realized. Women responded with feelings of frustration, disappointment, and annoyance, leading them to become disenchanted with the possibilities of the digital technologies they had tried. CONCLUSIONS:The findings demonstrate the nuanced and complex ways in which the participants were engaging with and contributing to online sources of information and using these sources together with face-to-face encounters with doctors and other health care professionals and friends and family members. They highlight the lay forms of expertise that the women had developed in finding, assessing, and creating health knowledges. The study also emphasized the key role that many women play in providing advice and health care for family members not only as digitally engaged patients but also as digitally engaged carers.
| S-EPMC6367665 | biostudies-literature
Project description:BackgroundSuccess with lifestyle change, such as weight loss, tobacco cessation, and increased activity level, using electronic health (eHealth) has been demonstrated in numerous studies short term. However, evidence on how to maintain the effect long-term has not been fully explored, even though there is a pressing need for long-term solutions. Recent studies indicate that weight loss can be achieved and maintained over 12 and 20 months in a primary care setting using a collaborative eHealth tool. The effect of collaborative eHealth in promoting lifestyle changes depends on competent and skilled dieticians, nurses, physiotherapists, and occupational therapists acting as eHealth coaches. How such health care professionals perceive delivering asynchronous eHealth coaching and which determinants they find to be essential to achieving successful long-term lifestyle coaching have only been briefly explored and deserve further exploration.ObjectiveThe aim of this study is to analyze how health care professionals perceive eHealth coaching and to explore what influences successful long-term lifestyle change for patients undergoing hybrid eHealth coaching using a collaborative eHealth tool.MethodsA total of 10 health care professionals were recruited by purposive sampling. They were all women aged 36 to 65 years of age with a mean age of 48 years of age. A total of 8/10 (80%) had more than 15 years of experience in their field, and all had more than six months of experience providing eHealth lifestyle coaching using a combination of face-to-face meetings and asynchronous eHealth coaching. They worked in 5 municipalities in the Region of Southern Denmark. We performed individual, qualitative, semistructured, in-depth interviews in their workplace about their experiences with health coaching about lifestyle change, both for their patients and for themselves, and mainly how they perceived using a collaborative eHealth solution as a part of their work.ResultsThe health care professionals all found establishing and maintaining an empathic relationship essential and that asynchronous eHealth lifestyle coaching challenged this compared to face-to-face coaching. The primary reason was that unlike typical in-person encounters in health care, they did not receive immediate feedback from the patients. We identified four central themes relevant to the health care professionals in their asynchronous eHealth coaching: (1) establishing an empathic relationship, (2) reflection in asynchronous eHealth coaching, (3) identifying realistic goals based on personal barriers, and (4) staying connected in asynchronous coaching.ConclusionsEstablishing and maintaining an empathic relationship is probably the most crucial factor for successful subsequent eHealth coaching. It was of paramount importance to get to know the patient first, and the asynchronous interaction aspect presented challenges because of the delay in response times (both ways). It also presented opportunities for reflection before answering. The health care professionals found they had to provide both relational communication and goal-oriented coaching when using eHealth solutions. Going forward, the quality of the health care professional-patient interaction will need attention if patients are to benefit from collaborative eHealth coaching fully.
| S-EPMC6053604 | biostudies-literature
Project description:BackgroundDigital mental health interventions (DMHIs) represent a promising solution to address the growing unmet mental health needs and increase access to care. Integrating DMHIs into clinical and community settings is challenging and complex. Frameworks that explore a wide range of factors, such as the Exploration, Preparation, Implementation, Sustainment (EPIS) framework, can be useful for examining multilevel factors related to DMHI implementation efforts.ObjectiveThis paper aimed to identify the barriers to, facilitators of, and best practice recommendations for implementing DMHIs across similar organizational settings, according to the EPIS domains of inner context, outer context, innovation factors, and bridging factors.MethodsThis study stems from a large state-funded project in which 6 county behavioral health departments in California explored the use of DMHIs as part of county mental health services. Our team conducted interviews with clinical staff, peer support specialists, county leaders, project leaders, and clinic leaders using a semistructured interview guide. The development of the semistructured interview guide was informed by expert input regarding relevant inner context, outer context, innovation factors, and bridging factors in the exploration, preparation, and implementation phases of the EPIS framework. We followed a recursive 6-step process to conduct qualitative analyses using inductive and deductive components guided by the EPIS framework.ResultsOn the basis of 69 interviews, we identified 3 main themes that aligned with the EPIS framework: readiness of individuals, readiness of innovations, and readiness of organizations and systems. Individual-level readiness referred to the extent to which clients had the necessary technological tools (eg, smartphones) and knowledge (digital literacy) to support the DMHI. Innovation-level readiness pertained to the accessibility, usefulness, safety, and fit of the DMHI. Organization- and system-level readiness concerned the extent to which providers and leadership collectively held positive views about DMHIs as well as the extent to which infrastructure (eg, staffing and payment model) was appropriate.ConclusionsThe successful implementation of DMHIs requires readiness at the individual, innovation, and organization and system levels. To improve individual-level readiness, we recommend equitable device distribution and digital literacy training. To improve innovation readiness, we recommend making DMHIs easier to use and introduce, clinically useful, and safe and adapting them to fit into the existing client needs and clinical workflow. To improve organization- and system-level readiness, we recommend supporting providers and local behavioral health departments with adequate technology and training and exploring potential system transformations (eg, integrated care model). Conceptualizing DMHIs as services allows the consideration of both the innovation characteristics of DMHIs (eg, efficacy, safety, and clinical usefulness) and the ecosystem around DMHIs, such as individual and organizational characteristics (inner context), purveyors and intermediaries (bridging factor), client characteristics (outer context), as well as the fit between the innovation and implementation settings (innovation factor).
| S-EPMC10230355 | biostudies-literature
Project description:BackgroundGene drive technologies (GDTs) promote the rapid spread of a particular genetic element within a population of non-human organisms. Potential applications of GDTs include the control of insect vectors, invasive species and agricultural pests. Whether, and if so, under what conditions, GDTs should be deployed is hotly debated. Although broad stances in this debate have been described, the convictions that inform the moral views of the experts shaping these technologies and related policies have not been examined in depth in the academic literature.MethodsIn this qualitative study, we interviewed GDT experts (n = 33) from different disciplines to identify and better understand their moral views regarding these technologies. The pseudonymized transcripts were analyzed thematically.ResultsThe respondents' moral views were principally influenced by their attitudes towards (1) the uncertainty related to GDTs; (2) the alternatives to which they should be compared; and (3) the role humans should have in nature. Respondents agreed there is epistemic uncertainty related to GDTs, identified similar knowledge gaps, and stressed the importance of realistic expectations in discussions on GDTs. They disagreed about whether uncertainty provides a rationale to refrain from field trials ('risks of intervention' stance) or to proceed with phased testing to obtain more knowledge given the harms of the status quo ('risks of non-intervention' stance). With regards to alternatives to tackle vector-borne diseases, invasive species and agricultural pests, respondents disagreed about which alternatives should be considered (un)feasible and (in)sufficiently explored: conventional strategies ('downstream solutions' stance) or systematic changes to health care, political and agricultural systems ('upstream solutions' stance). Finally, respondents held different views on nature and whether the use of GDTs is compatible with humans' role in nature ('interference' stance) or not ('non-interference stance').ConclusionsThis interview study helps to disentangle the debate on GDTs by providing a better understanding of the moral views of GDT experts. The obtained insights provide valuable stepping-stones for a constructive debate about underlying value conflicts and call attention to topics that deserve further (normative) reflection. Further evaluation of these issues can facilitate the debate on and responsible development of GDTs.
| S-EPMC7938529 | biostudies-literature