Public Acceptability of Cross-Sectoral Data Linkage

APPENDIX B: WORKSHOP MATERIALS

Topic guide

Deliberative citizen engagement event on 'public acceptability of cross-sectoral data linkage'

9.30am - 10am: Arrival

• Registration, provide participants with name badge indicating which of the small groups they will be in
• Workshop facilitators and presenters to mingle
• Poster boards with agenda and purpose of the event
• Teas and coffees

10:00-10:15: Initial Plenary

• Thank respondents for attending
• Introduce Ipsos MORI and University of Edinburgh and the people involved and their roles during the event
• Explain, why they were invited, briefly explain the background to the study and emphasise that the focus is on the use of data, gathered by different public bodies and through particular studies, for research and statistical purposes only. Briefly outline agenda for the day.
• Explain key terms: data/information; linkage; research and statistical purposes. Clearly separate individual level data relating to service use/need from research and statistical purposes.
• Emphasise: confidentiality, no right or wrong answers, give everyone opportunity to speak, important to hear public views and involve public in these issues
• Permission to record discussions
• Housekeeping: toilets, fire exits, refreshments, mobile phones switched off

10.20-11:15: Initial warm-up session (55 minutes)

Aims: to explore, without prompting:

• General attitudes towards data collection and use
• Perceptions of how the SG and other public bodies might use data (particularly issues of trust)
• Initial reaction to concept of data linkage
• Concerns about particular data sources, such as medical records

[This is a warm up session, so needs to be quite open ended, yet not roam too far away from our central purpose. We will have clarified at the outset what we mean by data/information; data linkage; research and statistical purposes, so that this can set the overall boundary for the discussion]

• How do you feel about public bodies [USE CARDS TO IDENTIFY RANGE OF PUBLIC BODIES] collecting and holding information about you? [RECORD ANSWERS ON FLIP CHART]

[NB SG holds very little data about individuals as generally not delivering services. UK Govt eg HMRC and DWP do as do LAs.]

• Do you feel differently about different organisations?
  • To what extent do you trust these various bodies to look after such data? Probe issues of trust e.g. why do you say that

[RECORD ON FLIP CHART; CREATE HIERARCHY IF POSSIBLE]

• How do you think such information is used?
  Probe: Do you feel differently about different uses? [RECORD ON FLIP CHART; IDENTIFY ACCEPTABLE/UNACCEPTABLE USES]

• How do you feel about how information about you might be used for research and for producing statistics about the population or parts of the population?
• What are your thoughts about who might want to do such research and why?
  • Probe types of research and researchers; see if public interest arguments emerge

EXPLAIN: As you have just heard in the introduction, the SG is interested in facilitating the linking of data that they and other public bodies hold about individuals in order to use existing information more efficiently (and therefore save money) and increase the range of analysis that can be done (compared to single datasets). This will help research which in turn should help provide societal benefit (such as better policies and services). It will also help produce better statistics on the Scottish population.

• What do you think about the idea of using information held by public bodies(for example, relating to education, health, housing) and research studies (such as social and health surveys) that have been linked in order to do further research or produce more information on the Scottish population?
  • Probe views on benefits/disbenefits

[USE STICKY WALL - this will enable people to write down their views initially - facilitator can then 'analyse' - identify themes]

• What do you think this type of linked information could be used for?
  • Probe what it should be used for

[USE STICKY WALL]

• Are there some types of information that you feel differently about (probe about different sectors - education, health etc) [USE CARDS TO IDENTIFY RANGE OF AREAS]
• What about data from commercial companies (for example, energy data; club card data?)
• How do you think SG might use this information and how do you feel about that? What about other public bodies, such as local authorities, police, universities? [USE CARDS AGAIN TO IDENTIFY RANGE OF SECTORS]
• How do you feel about commercial access to linked information held by public bodies?

End session with participants listing issues they'd like further clarification on (we can then attend to that in the presentation and Q and A).

11:15-12:00 Presentation (20 min) followed by Q&A (25 min)

At the end of the presentation, participant will be given a summary of the guiding principles to refer to over lunch

Q and A will take place initially with individuals working in twos/threes, highlighting questions and then in plenary. Facilitators will add questions that have arisen in their groups that have not been asked in plenary.

12.00-12.40 LUNCH

Poster Boards will have easy read versions of the framework in large print. Participants will also have individual leaflet in plain English. A poster with the presentation on will also be shown; this will include case studies of useful research that has used linkage.

12:40-13:45: Post- presentation breakout groups (65 mins)

Aims: to discuss participants' perceptions of the proposed strategy, including their:

• Overall concerns and more specific concerns regarding particular sector-to- sector linkages
• The extent to which the 'Guiding Principles' provide appropriate governance frameworks
• Developing recommendations for safeguards to address concerns and maximise public confidence
• Exploring support and concerns surrounding the Beyond 2011 project

EXPLAIN: You have had the chance to hear about the Scotland wide data linkage framework and also to ask questions and raise concerns. Do you have any further questions of clarification before we go on? I'd now like to ask you now to discuss the proposed strategy a little more

• Do you have any general concerns about it (consent, confidentiality, uses/abuses?)
• Do you have specific concerns (for example about linking particular types of information or linkages, uses/abuses)?Do you feel confident about the safeguards that have been put in place to ensure privacy (data controllers, PAC/S)?
• You have also heard something about the Beyond 2011 project, where SG is exploring the use of alternative sources of data for Census type outputs. We'd like to ask you a little more about that. What do you think about using existing, linked information held about you in this way?
• How do you feel about using commercial data in this way (Such as data from energy companies or club card data?)

EXPLAIN: There are several guiding principles set out in the framework (reiterate these and have them on cards). Can we discuss these a little more before moving on as a group to develop your own recommendations?

• Do you think these principles deal adequately with public concerns?
• Do you think some of them are more important than others?

[SORTING EXERCISE WITH THE CARDS - THIS WILL PROMPT DISCUSSION ABOUT EACH KEY PRINCIPLE AND GET A SENSE OF PRIORITIES - SPARE CARDS WILL ENABLE PARTICIPANTS TO WRITE ADDITIONAL PRINCIPLES]

• If you were asked to advise SG on how best to deal with public concerns and safeguard information, what would be the most important things to you?

[POST-ITS/FLIP CHARTS TO LIST AND THEN RANK THESE]

EXPLAIN: Just to finish up this discussion - you have all had the chance to have your say today. More generally

• What do you think are the main things that SG can take out of today?
• Would you like more information about how information about you is used?
• Would you like to be kept informed about what happens next? If so, in what ways?
• Do you think the public should be more involved in this issue? If so, in what ways?

[FLIP CHART]

13:45-14:00: Plenary Session (15 min)

• Summarise key messages from the day and ensure agreements and disagreements noted
• Thank participants for their input and reiterate next steps (our report; and SG will probably consult further on the details of what they propose to do)
• Distribute post-event questionnaire and incentives

Informational presentation

Summary of Guiding Principles used to facilitate group discussions

Guiding Principles

Public Interest

This refers to the benefits that data linkage may bring through better research and statistics and the need to balance this against individual rights and privacy protection

Governance and Transparency

This refers to the importance of being open about the ways in which data linkage is happening and about the safeguards that are in place

Privacy

This refers to a strong commitment to privacy protection, for example by ensuring individuals cannot be identified at any stage

Removal of names and direct identifiers

This refers to a commitment to using data without names and other information that identify someone; any departure from that must be justified and approved

Consent

If personal data where an individual may be identified is to be used, then that person must give consent. If that is not possible or practical, then permission is required from an oversight body

Security

All data linkage must conform to the highest standards of security and follow appropriate policies

Access and Personnel

An access policy must be developed and all those using linked data must be approved and keep to a Data Sharing Agreement

Data sharing agreements and sanctions

All those involved in data linkage must stick to a clear agreement. If they do not do so, then sanctions will come into force

Post-workshop questionnaire