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Public attitudes towards sharing loyalty card data for academic health research: a qualitative study
Elizabeth H Dolan1, Kate Shiells2,3,4, James Goulding5
1N/LAB, Nottingham University Business School, University of Nottingham, Si Yuan Building, Jubilee Campus, Nottingham, NG8 1BB, UK. elizabeth.dolan@nottingham.ac.uk.
Insights
Public attitudes towards donating loyalty card data for health research are largely positive, with a strong emphasis on the need for transparency, data security, and individual control over information. Understanding the research purpose enhances willingness to share.
Area of Science:
- Health research utilizing consumer data
- Public perception of data sharing
- Privacy and data security in research
Background:
- Growing interest in using loyalty card data for health research.
- Limited understanding of public attitudes and required safeguards for this data sharing.
- Need to explore public perceptions for ethical and effective data utilization.
Purpose of the Study:
- Investigate public attitudes towards donating loyalty card data for academic health research.
- Identify desired safeguards for sharing loyalty card data.
- Examine how research purpose (cancer vs. COVID-19) influences attitudes.
Main Methods:
- Conducted semi-structured telephone interviews with 40 participants.
- Recruited participants via Prolific Academic.
- Utilized content analysis to identify themes related to attitudes and safeguards.
Main Results:
- Participant attitudes were categorized as rational (supportive, viewing data as public) or emotional (concerned about privacy and third-party access).
- Key safeguards desired include anonymization, data detail control, transparency, and data security.
- Willingness to donate increased with understanding of research purpose; specific disease (cancer vs. COVID-19) did not significantly alter donation decisions but impacted perceived data utility.
Conclusions:
- Public largely favors donating loyalty card data for health research when provided with information and control.
- Transparency, choice, and robust safeguards are critical prerequisites for public data sharing.
- Recommendations are provided for researchers and policymakers on obtaining loyalty card data ethically.
Background:
A growing number of studies show the potential of loyalty card data for use in health research. However, research into public perceptions of using this data is limited. This study aimed to investigate public attitudes towards donating loyalty card data for academic health research, and the safeguards the public would want to see implemented. The way in which participant attitudes varied according to whether loyalty card data would be used for either cancer or COVID-19 research was also examined.
Methods:
Participants (N = 40) were recruited via Prolific Academic to take part in semi-structured telephone interviews, with questions focused on data sharing related to either COVID-19 or ovarian/bowel cancer as the proposed health condition to be researched. Content analysis was used to identify sub-themes corresponding to the two a priori themes, attitudes and safeguards.
Results:
Participant attitudes were found to fall into two categories, either rational or emotional. Under rational, most participants were in favour of sharing loyalty card data. Support of health research was seen as an important reason to donate such data, with loyalty card logs being considered as already within the public domain. With increased understanding of research purpose, participants expressed higher willingness to donate data. Within the emotional category, participants shared fears about revealing location information and of third parties obtaining their data. With regards to safeguards, participants described the importance of anonymisation and the level of data detail; the control, convenience and choice they desired in sharing data; and the need for transparency and data security. The change in hypothetical purpose of the data sharing, from Covid-19 to cancer research, had no impact on participants' decision to donate, although did affect their understanding of how loyalty card data could be used.
Conclusions:
Based on interviews with the public, this study contributes recommendations for those researchers and the wider policy community seeking to obtain loyalty card data for health research. Whilst participants were largely in favour of donating loyalty card data for academic health research, information, choice and appropriate safeguards are all exposed as prerequisites upon which decisions are made.
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