5.1 This research was commissioned as a means of gaining insights into the public acceptability of cross-sectoral data linkage that may inform the development of the Scottish Government's proposed Data Linkage Framework. Deliberative methods were chosen in recognition of the complexity and unfamiliarity of the topic and thus the need for participants to be appropriately informed in order to meaningfully consider the relevant issues.
5.2 Consistent with a recent commissioned report on public attitudes to the sharing of health data for research (Aitken 2011b), one of the clearest findings to emerge from the events was the readiness and ability of participants to engage with the subject matter - they spoke at length, and with some sophistication, about key issues of relevance to the Framework, providing a rich and actionable evidence base for future decision making.
Concerns and sensitivities about data linkage
5.3 There were a number of factors underpinning attitudes towards data linkage but chief among these were: general concerns about an encroaching "big brother society"; negative experiences of data collection and use by commercial actors; and scepticism around the trustworthiness of public bodies to look after data and use it appropriately. The latter was partly fuelled by high profile cases of data losses and a view that public bodies are active in selling data to commercial organisations. Directly addressing these various issues as part of any communications surrounding the ongoing development of the Framework may be an important first step in building public acceptability.
5.4 Thus, although participants broadly supported the overarching objectives of the Framework, they did have specific concerns on which they sought reassurance, which tended to centre around the questions of:
- who would oversee the operation of the Framework
- who would have access to linked data, and specifically whether this would include commercial companies
- how individuals' privacy would be protected; in particular to prevent unsolicited contact from commercial companies
- how the data would be kept secure
- where overall accountability would lie if linked data was lost or stolen
5.5 Additionally, there was concern that linkage could lead to increased negative "labelling" of individuals due to the potential for labels to carry across sectoral boundaries and result in individuals or groups experiencing discriminatory treatment or stigma in multiple spheres. Such concerns often led participants to express a view that public bodies should only be able to access data that is directly relevant to their work.
Specific sector to sector linkages
5.6 The above concerns were discussed in relation to data linkage generally. There was little explicit differentiation between particular sector-to-sector linkages; notwithstanding some sensitivity around linkage involving criminal justice data and the potential for this to result in individuals experiencing discrimination across multiple spheres.
Reaction to the draft Guiding Principles
5.7 Perceptions of the draft Guiding Principles were somewhat mixed. On one hand, there was a view that the Principles go some way to addressing the main areas of concern and provide reassurance that data linkage will be carried out appropriately and securely. On the other hand, the Framework in general, and the Principles specifically, were commonly considered to be too "vague" and therefore open to interpretation and manipulation by vested interests. In particular, it was felt that there was a lack of detail surrounding who would be on the oversight body and the sanctions that would be imposed for breaching the Principles.
Safeguards to maximise public confidence
5.8 Further discussion of the Guiding Principles led to the identification of a number of safeguards that could be implemented in order to maximise public confidence in the Framework. These included:
- a requirement that anyone applying to use linked data must provide a strong justification to a commission or panel as to why their research is in the public interest
- publishing all processes and procedures surrounding data linkage, as well as details of who is undertaking research using linked data, to enable the public to monitor activity taking place under the Framework
- establishing an oversight body - comprising highly qualified professionals and, potentially, lay members - with responsibility for granting or refusing data linkage requests, ensuring that the Principles are upheld, and administering sanctions as required
- establishing accountability by placing data linkage under ministerial remit or the auspices of an independent professional or senior civil servant
- ensuring that explicit consent is obtained for uses of data containing names or other direct identifiers, and that, in the process, clear parameters are set around what is being consented to (i.e. the type of research), with any divergence requiring further consent
- requiring that consent for the uses of data containing names or other identifiers be obtained from data subjects themselves or from their next of kin, and preventing any oversight body from granting proxy consent
- ensuring all electronic systems used by individuals and organisations with access to linked data meet a minimum security requirement that is reviewed and updated frequently
- ensuring all researchers and officials with access to linked data are appropriately vetted through mechanisms such as: a certified training course; an accreditation scheme; or an assessment scheme similar to Disclosure Scotland.
- imposing strict sanctions on individuals and/or organisations responsible for any breaches of the Principles (which might include bans on future access to link data, and the issuing of fines or judicial sentences) and specifying the range of possible sanctions within the Principles.
Support for the objectives of 'Beyond 2011'
5.9 There was broad support for the objectives of Beyond 2011, which did not raise any new privacy issues. Generally 10 years was considered too long a gap between censuses and several participants questioned whether the census represents value for money given that the data soon becomes obsolete.
Attitudes to ongoing public involvement
5.10 The notable readiness and ability of participants to engage with the subject of data linkage provides in and of itself a strong case for ongoing public engagement in the development, implementation and monitoring of the Data Linkage Framework. Across the events, there was a strong appetite for such engagement, which was underpinned partly by a perception that Government generally needs to do more to consult the public on important issues, and partly by a view that the events provided assurances about data linkage and related issues. There was specific support for a media advertising campaigns; the distribution of informational leaflets; and the setting up of a dedicated website that could serve as a 'one stop shop' for everything members of the public might want to know about data linkage. Older participants emphasised the importance of adopting a multi-strand public engagement strategy to maximise its reach.
5.11 While the research findings provide a clear indication of public sentiment around the issue of data linkage, they also point towards areas for further investigation. Firstly, it would seem worth attempting to assess the extent to which the various issues and concerns raised by participants are reflected among the wider population and to explore the relative perceived importance of the suggested safeguards. This would best be done through quantitative methods and, in particular, techniques that allow for the exploration of multiple considerations and trade-offs, such as discrete choice experiments.
5.12 Other issues that it would be useful to investigate further, whether qualitatively or quantitatively, are conceptions of the public interest; preferences around the composition of oversight bodies and implications of this for public trust; and the feasibility and acceptability of different approaches to obtaining consent for record linkage.
Email: Sara Grainger
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