Public Acceptability of Cross-Sectoral Data Linkage

A report of recent public deliberative events to explore the views of the public on the acceptability of linking personal data for statistical and research purposes, thereby identifying particular sensitivities and potential barriers to public confidence and exploring mechanisms for overcoming concerns.


2.1 The study was conducted using deliberative techniques; a form of qualitative research. Rather than attempting to identify pre-existing attitudes to data linkage; a concept which may not have been immediately relevant to participants nor fully understood; deliberation allowed for the sharing of information and expertise, the development of considered responses and the exploration of possible strategies for a socially acceptable Framework.

2.2 Three half-day deliberative workshops were held; in Stirling, Inverness and Glasgow between 26 May and 9 June 20124.


2.3 Participants were recruited face-to-face in their homes between 14 May and 7 June 2012, using a questionnaire specially designed for this purpose.

2.4 To ensure that a broad range of people were engaged in the research, quotas were set on: sex; age; working status; socio-economic grade; ethnicity; disability; parental status; and area. Further, participants with varying levels of trust in public bodies were recruited5 as previous research has found trust to be important in shaping attitudes to data linkage for health research (see Aitken 2011).

2.5 Individuals who worked in market research, media, advertising or PR; and those who had attended a group discussion or workshop in the previous 12 months were excluded from the research.

2.6 Thirty people were recruited for each workshop, with the aim of ensuring that around 25 attended on the day. In the event, and as Table 5.1 shows, 24 people attended the Stirling workshop, 22 attended the Inverness workshop and 27 the Glasgow workshop. In each case, attendees were representative of the broader pool of recruits (Appendix A provides a full breakdown of the profile of attendees). All attendees received £40 as a 'thank you' for their time and to cover any expenses incurred.

Table 5.1: Number of participants attending each workshop

Location Number of participants
Stirling 24
Inverness 22
Glasgow 27

Structure of the workshops

2.7 The workshops comprised a mix of plenary and small group sessions. For the latter, participants were divided into three groups on the basis of their age (18 to 34 years, 35 to 49 years and 50 years and over) to allow for the identification of any variation in views by life stage.

2.8 Table 5.2 shows the structure of the workshops and summarises the purpose of each stage.

Table 5.2: Structure of the workshops



Initial plenary session

To welcome participants and to provide an outline of the scope of the study - i.e. data linkage for research and statistical purposes and not for the sharing of information about individuals to inform service delivery - and the key concepts that would be used throughout the day.

Breakout groups (1)

Initial warm-up discussions to explore general attitudes towards data collection and use, and to gauge initial reactions to the concept of data linkage.

Presentation on the proposed Data Linkage Framework and Q&A

The presentation covered detailed information on:

  • what data linkage is and how it is done
  • benefits and risks of data linkage (with reference to case study examples)
  • why a Data Linkage Framework is necessary
  • the proposed Framework and Guiding Principles.

Lunch break

Breakout groups (2)

To explore participants' perceptions of the proposed Data Linkage Framework, including:

  • their overall reactions and more specific reactions regarding particular sector-to-sector linkages
  • the extent to which they felt that the Guiding Principles provide appropriate governance frameworks
  • their suggestions for safeguards to address concerns and maximise public confidence
  • their views around the Beyond 2011 project.

Plenary session

A summing up of the key messages from the event and completion of a post-workshop questionnaire.

Workshop materials

2.9 All the materials used in the workshops were designed by the researchers at the University of Edinburgh and Ipsos MORI Scotland with input from the Scottish Government. These included a topic guide which was used by moderators to facilitate the break-out discussions, a PowerPoint presentation with detailed information on the proposed Data Linkage Framework and a post-workshop questionnaire (copies of all materials are provided in Appendix B).


2.10 All discussions that took place at the workshops were recorded and then transcribed with the consent of participants. Group facilitators also compiled summary field notes at the end of each event. In addition to this, the project team held regular meetings, throughout the fieldwork process, in order to discuss emerging findings.

2.11 At the end of the fieldwork, the researchers conducted a brainstorming session to identify the top-level findings and implications. This culminated in the creation of a code frame of substantive themes and sub-themes. Transcripts were then systematically analysed for key points and illustrative verbatim comments. Any new sub-themes which emerged at this stage were integrated into the code frame.

2.12 This method ensured that analysis and reporting of the data was rigorous, balanced and accurate, and that key messages were brought out. It was also flexible enough to allow for links and connections across different pieces of data to be made, and for moments of interpretive insight and inspiration to be recorded.

Interpretation of qualitative findings

2.13 The findings presented in this report were derived using qualitative methods. Unlike large surveys, qualitative social research does not aim to produce a quantifiable or generalizable summary of population attitudes, but to develop a deeper understanding of the range of issues influencing attitudes as well as identifying key attitudinal tendencies that are likely to be prevalent across society. Qualitative research is particularly useful when exploring complex or hard-to-understand areas, such as cross-sectoral data linkage, where it can be difficult to get a true sense of public attitudes from questionnaires. The integration of 'deliberative' approaches aids this process, since participants are given the opportunity to consider their feelings towards the concept both before and after it is explained to them. This insight often influences attitudes and reveals a more nuanced and informed set of considerations, which can be useful for informing policy making.


Email: Sara Grainger

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