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

Importance: Digital 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. Objective: To 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 Participants: This 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 Measures: Participants 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. Results: Of 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 Relevance: In 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.

How can healthcare organizations improve cost-of-care conversations? A qualitative exploration of clinicians' perspectives.

OBJECTIVES: Clinicians increasingly believe they should discuss costs with their patients. We aimed to learn what strategies clinicians, clinic leaders, and health systems can use to facilitate vital cost-of-care conversations. METHODS: We conducted focus groups and semi-structured interviews with outpatient clinicians at two US academic medical centers. Clinicians recalled previous cost conversations and described strategies that they, their clinic, or their health system could use to facilitate cost conversations. Independent coders recorded, transcribed, and coded focus groups and interviews. RESULTS: Twenty-six clinicians participated between December 2019 and July 2020: general internists (23%), neurologists (27%), oncologists (15%), and rheumatologists (35%). Clinicians proposed the following strategies: teach clinicians to initiate cost conversations; systematically collect financial distress information; partner with patients to identify costs; provide accurate insurance coverage and/or out-of-pocket cost information via the electronic health record; develop local lists of lowest-cost pharmacies, laboratories, and subspecialists; hire financial counselors; and reduce indirect costs (e.g., parking). CONCLUSIONS: Despite considerable barriers to discussing, identifying, and reducing patient costs, clinicians described a variety of strategies for improving cost communication in the clinic. PRACTICE IMPLICATIONS: Health systems and clinic leadership can and should implement these strategies to improve the financial health of the patients they serve.

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

Importance: Consumers routinely generate digital information that reflects on their health. Objective: To evaluate the factors associated with consumers' willingness to share their digital health information for research, health care, and commercial uses. Design, Setting, and Participants: This national survey with an embedded conjoint experiment recruited US adults from a nationally representative sample, with oversampling of Black and Hispanic panel members. Participants were randomized to 15 scenarios reflecting use cases for consumer digital information from a total of 324 scenarios. Attributes of the conjoint analysis included 3 uses, 3 users, 9 sources of digital information, and 4 relevant health conditions. The survey was conducted from July 10 to 31, 2020. Main Outcomes and Measures: Participants rated each conjoint profile on a 5-point Likert scale (1-5) measuring their willingness to share their personal digital information (with 5 indicating the most willingness to share). Results reflect mean differences in this scale from a multivariable regression model. Results: Among 6284 potential participants, 3543 (56%) responded. A total of 1862 participants (53%) were female, 759 (21%) identified as Black, 834 (24%) identified as Hispanic, and 1274 (36%) were 60 years or older. In comparison with information from electronic health care records, participants were less willing to share information about their finances (coefficient, -0.56; 95% CI, -0.62 to -0.50), places they visit from public cameras (coefficient, -0.28; 95% CI, -0.33 to -0.22), communication on social media (coefficient, -0.20; 95% CI -0.26 to -0.15), and their search history from internet search engines (coefficient, -0.11; 95% CI, -0.17 to -0.06). They were more willing to share information about their steps from applications on their phone (coefficient, 0.22; 95% CI, 0.17-0.28). Among the conjoint attributes, the source of information (importance weight: 59.1%) was more important than the user (17.3%), use (12.3%), and health condition (11.3%). Four clusters of consumers emerged from the sample with divergent privacy views. While the context of use was important, these 4 groups expressed differences in their overall willingness to share, with 337 participants classified as never share; 1116 classified as averse to sharing (mean rating, 1.64; 95% CI, 1.62-1.65); 1616 classified as uncertain about sharing (mean rating, 2.84; 95% CI, 2.81-2.86); and 474 classified as agreeable to sharing (mean rating, 4.18; 95% CI, 4.16-4.21). Respondents who identified as White and non-Hispanic, had higher income, and were politically conservative were more likely to be in a cluster that was less willing to share (ie, never or averse clusters). Conclusions and Relevance: These findings suggest that although consumers' willingness to share personal digital information for health purposes is associated with the context of use, many have strong underlying privacy views that affect their willingness to share. New protections may be needed to give consumers confidence to be comfortable sharing their personal information.

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

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.

Consumer Views on Using Digital Data for COVID-19 Control in the United States.

Importance: Curbing 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. Objective: To 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 Participants: This 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 Measures: Levels 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. Results: Of 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 Relevance: In 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.

Overdose Awareness and Reversal Trainings at Philadelphia Public Libraries.

PURPOSE: To evaluate an overdose response training program in public libraries. DESIGN: Mixed methods evaluation including pre- and post-intervention questionnaires and debriefing interviews. SETTING: Ten Philadelphia public libraries. SAMPLE: Overdose response training participants (library staff and community members). INTERVENTION: Public, hour-long overdose response trainings run by the Philadelphia Department of Public Health, the Free Library of Philadelphia, and the University of Pennsylvania between March and December 2018. MEASURES: Questionnaires assessed motivation for attending trainings, overdose response readiness, and intention to acquire and carry naloxone. Debriefing interviews elicited training feedback. ANALYSIS: We assessed changes in overdose response readiness and intention to carry naloxone and performed thematic analysis on interview data. RESULTS: At 29 trainings, 254 people attended, of whom 203 (80%) completed questionnaires and 23 were interviewed. 30% of participants had witnessed an overdose, but only 3% carried naloxone at baseline. Following training, overdose response readiness and intention to acquire/carry naloxone improved significantly (P < .01). Interviewees nonetheless noted that they experienced barriers to naloxone acquisition, including cost, stigma, and concern regarding future insurability. Trainings subsequently included naloxone distribution. Interviewees reported that public libraries were welcoming, nonstigmatizing venues. CONCLUSION: In Philadelphia, library-based overdose response trainings were well-attended and reached a population with prior overdose encounters. Similar trainings could be deployed as a scalable overdose prevention strategy in the nation's 16 568 public libraries.

Local health departments and the implementation of evidence-based policies to address opioid overdose mortality.

BACKGROUND: In the context of the opioid overdose crisis, local health departments are on the front lines, coordinating programs and services and translating state and federal policies into community action. While media reports describe growth of Overdose Education and Naloxone Distribution (OEND) programs among local health departments, little is known about program features, scope, and target populations. Methods: We surveyed health departments in 180 United States counties with high overdose mortality rates. Results: Among health officials from 54 counties (30% response), many counties reported implementation of evidence-based practices, with a high degree of programmatic variation. The majority of responding health departments (94%) conducted overdose education and naloxone distribution (OEND) programs. Programs were heterogeneous in scale, with a reported median of 250 naloxone kits (range 1-25,000 kits) acquired for community distribution. In addition, four in five respondents were aware of their state's standing order policy for increasing naloxone access. While the majority of respondents reported county-level availability of at least one form of evidence-based medications to treat opioid use disorder (MOUD), many reported no availability of buprenorphine (33%) or methadone (43%). Conclusions: Local health departments are vital to reducing opioid overdose mortality, and many are implementing relevant evidence-based practices. To support further adoption of potentially life-saving strategies, health departments need adequate funding and staffing as well as policies and guidelines to support implementation.