Exploring User Perspectives on Data Collection, Data Sharing Preferences, and Privacy Concerns with Remote Healthcare Technology
- 1. Exploring User Perspectives on Data Collection, Data Sharing Preferences, and Privacy Concerns with Remote Healthcare Technology Daniela Napoli¹, Heather Molyneaux², Hélène Fournier², and Sonia Chiasson¹ Carleton University, Ottawa, Canada¹ National Research Council, New Brunswick, Canada² with funding from Human-Centric Cybersecurity Partnership [email protected]
- 2. Motivation RQ1. What are users’ perspectives on data collected and shared by remote healthcare technology? RQ2. How might these vary depending on contexts like age and healthcare scenario? Remote healthcare technology* can enhance healthcare services… but do not always align with privacy expectations. Exploring User Perspectives on Remote Healthcare Technology [email protected] 2 *Systems of devices designed for users to manage or support their health and well-being outside of typical healthcare settings.
- 3. Related Literature ● Data must be retained to offer monitoring (Siwicki, 2020) ● But users are concerned about protection of data, lack of discretion, and control over collection (Wilkowska, 2011; Frik et al., 2019; Berridge, 2022) ● Context impacts privacy ○ Contextual Integrity ■ “Privacy" = appropriate flow of information (Nissenbaum, 2004) ● Privacy perspectives can be context-dependent ○ Adults aged 18-29 use a model-free method (Anaraky et al., 2021) ○ Adults aged 65+ more likely to share information if the recipient is benevolent (Frik et al., 2020) Exploring User Perspectives on Remote Healthcare Technology [email protected] 3
- 5. Survey Respondent Flow Exploring User Perspectives on Remote Healthcare Technology [email protected] 5
- 6. Healthcare Scenario Questions ● Likelihood of use ● We asked about 5 data types 1. Identifiable Video 2. Anonymous Video 3. Audio 4. Vital signs 5. Activities and wellness Are you comfortable with the collection of <data type>? What are your concerns? Who would you share with? Exploring User Perspectives on Remote Healthcare Technology [email protected] 6
- 7. Options for the Branching Questions Who would you share with? ❏ Healthcare providers ❏ Immediate family ❏ Extended family ❏ Household members ❏ Neighbours ❏ Friends ❏ Government / Non-profit ❏ Device Manufacturers ❏ No one What are your concerns? ❏ I do not know why this information would be needed for this scenario ❏ I do not want people to know this information ❏ I worry this information may be misused ❏ I worry this information may not be adequately protected when stored ❏ Other concern(s) OR Exploring User Perspectives on Remote Healthcare Technology [email protected] 7
- 8. Recruitment and Data Analysis ● Data collected in 2023 ● Various recruitment channels ○ Prolific ○ Social media, NRC groups, personal networks ○ Local community outreach ■ Public Libraries ■ Community Centres ● Descriptive statistics ○ Mean, SD, median ● Inferential statistics ○ Kruskal-Wallis ○ Wilcoxon rank sum for post-hoc Exploring User Perspectives on Remote Healthcare Technology [email protected] 8
- 9. Results
- 10. Participants 95% 5% N = 384 Gender Women Men Non-Binary Undisclosed 206 168 7 3 Age Group 18-34 35-49 50-64 65+ 71 76 144 93 Scenario Symptoms Rehab Emergency Chronic 96 97 98 93 Exploring User Perspectives on Remote Healthcare Technology [email protected] 10
- 11. ● Positives ○ Cost coverage ○ Quick first-responders ● Negatives ○ Long wait times ○ Poor relationships with healthcare providers ● Existing remote healthcare technology is limited “I have received some excellent care and also some appallingly bad care.” General Healthcare Experiences Exploring User Perspectives on Remote Healthcare Technology [email protected] 11
- 12. Likelihood of Use Overall, mean of 3.82 out of 5 indicating everyone was slightly likely By age groups… ● Participants aged 35-49 and 50-64 were significantly more likely to use remote healthcare technology than 65+ By healthcare scenario… ● No statistically significant differences ● Some trends: ○ Those in the chronic health condition scenario were most likely to use ○ Those in post-op rehabilitation scenario were least likely to use Exploring User Perspectives on Remote Healthcare Technology [email protected] 12
- 13. Comfort Ratings By age groups… ● Participants aged 18-34 significantly less comfortable with identifiable video data collection than 50-64 By scenario… ● Those assigned to chronic condition scenario significantly less comfortable with audio data collection than health emergency scenario Exploring User Perspectives on Remote Healthcare Technology [email protected] 13
- 14. Data Sharing Preferences By age groups… ● 18-34 shared ○ identifiable video with significantly more recipients than 50-64 and 65+ ○ anonymous video with significantly more recipients than 50-64 By healthcare scenarios… ● No statistically significant differences ● Some trends: ○ Those in emergency scenario shared with most recipients ○ Those in chronic condition scenario shared with the fewest Exploring User Perspectives on Remote Healthcare Technology [email protected] 14 Of those comfortable with collection…
- 15. Data Collection Concerns By age groups… ● Participants aged 18-34 expressed significantly more concerns about identifiable video data than 50-64 By healthcare scenarios… ● No statistically significant differences Exploring User Perspectives on Remote Healthcare Technology [email protected] 15 Of those not comfortable with collection…
- 16. Discussion
- 17. RQ1: What are users’ perspectives on data collected and shared by remote healthcare technology? ● Identifiable video data differs from other types of data when it comes to healthcare ● Only want to share if it directly benefits health Exploring User Perspectives on Remote Healthcare Technology [email protected] 17
- 18. RQ2: How might these vary depending on contexts like age and healthcare scenario? ● Older adults are the least likely to adopt remote healthcare tech ● Perspectives can shift depending on healthcare scenario Exploring User Perspectives on Remote Healthcare Technology [email protected] 18
- 19. Further Discussion Limitations ● Branching may impact generalizability ● Sampling techniques may introduce sampling and selection bias ● Contextual descriptions may introduce variability between responses Next Steps ● Further explore how other characteristics (e.g., ethnicity) can impact perspectives ● Further explore the nuances via qualitative research (e.g., interview older adults about adoption issues) Exploring User Perspectives on Remote Healthcare Technology [email protected] 19
- 20. Exploring User Perspectives on Data Collection, Data Sharing Preferences, and Privacy Concerns with Remote Healthcare Technology Daniela Napoli¹, Heather Molyneaux², Helene Fournier², and Sonia Chiasson¹ Carleton University, Ottawa, Canada¹ National Research Council, New Brunswick, Canada² [email protected]