Public Acceptability of Data Sharing Between the Public, Private and Third Sectors for Research Purposes

APPENDIX C: TOPIC GUIDE

Topic guide

Deliberative citizen engagement event on

"Public Acceptability of Data Sharing between the Public, Private and Third Sectors"

Topic guide

9.45am - 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

10:00-10:10: 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 consultation exercise and emphasise that the focus is on the sharing of data between the public, private and third sectors for research purposes (this could include social research, scientific research or commercial research. Some of this might inform the planning or evaluation of services). Briefly outline agenda for the day.
• Emphasise: confidentiality, no right or wrong answers, give everyone opportunity to speak, important to hear public views and involve public in these issues
• Housekeeping: toilets, fire exits, refreshments, mobile phones switched off

10.10-10:50: Introductory Presentation on Data sharing, Linkage and the Strategy for Improving Data Access and Analysis, plus Q&A (40 minutes)

10:55-12:05: Break Out Groups (70 minutes)

ASK PARTICIPANTS TO INTRODUCE THEMSELVES (NAME, JOB, WHO LIVE WITH, ANY HOBBIES/INTERESTS)

EMPHASISES CONFIDENTIALITY/ANONYMITY OF DISCUSSIONS

OBTAIN PERMISSION TO RECORD DISCUSSION

• How do you feel about public, private and third sector bodies [USE CARDS TO IDENTIFY RANGE OF BODIES] accessing information from other sources about you for research? [RECORD ANSWERS ON FLIP CHART. DIVIDE INTO YES AND NO]
  [MODERTATOR NOTE: Social enterprises are businesses which exist to tackle social or environmental problems. All of the profits of these businesses are reinvested into the community or back into the business.]
  • Probe: Do you think different people might think differently, for example someone who is from an ethnic minority, gay, pregnant/has a young child, has a disability/etc. does this raise any particular concerns for you personally?
  • Explore personal knowledge/experience of the different types of organisations and also whether trust is an issue in making judgements
• Do you feel differently about different organisations? [RECORD ON FLIP CHART]
  • Probe: How do you feel about information being shared between different public sector organisations?
  • Probe: How do you feel about information being shared between the public and private sector?
  • Probe: How do you feel about information being shared between the public and third sector?
  • Probe: How do you feel about public sector organisations using data from the private or third sector?

EXPLAIN: There are lots of different types of information which is collected about you which might be interesting for researchers, for example: your gender, age, ethnicity, religion but also details about your education, benefits or past involvement with the criminal justice system.

• Do you feel differently about different types of data? [USE CARDS TO IDENTIFY RANGE OF TYPES OF DATA, RECORD ON FLIP CHART; IDENTIFY ACCEPTABLE/UNACCEPTABLE TYPES OF DATA]
  • Probe: What about data from commercial companies (for example, energy data; club card data?)
  • Probe: How do you think different groups of people will feel about this?

EXPLAIN: data might be accessed for a variety of purposes. For example; research might lead to the development of new products or drugs, better understanding of health and illness, better understanding of behaviour (eating or drinking habits/energy consumption), or it might allow organisations to conduct research to plan and improve the quality of service delivery, it might also inform policies and measure impact of policies, or to learn about the population as in the census

• Do you feel differently about different uses of data? [USE CARDS TO IDENTIFY RANGE OF USES, RECORD ON FLIP CHART; IDENTIFY ACCEPTABLE/UNACCEPTABLE USES] possibly just as an aide memoire
  • Probe types of research and researchers; see if public interest arguments emerge
  • Probe: How do you think different groups of people will feel about this? What about someone with a particular religious or ethnic background?
• Would you expect to benefit in some way from your data being used in this way?
  • Probe: In what way would you expect to benefit?

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

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).

12:05-12:45 Lunch Break (40 min)

12:45-13:15: Presentation on Private Sector Involvement in Data sharing and Benefit Sharing, plus Q&A (30 minutes)

13:15-14:15: Break Out Groups (60 minutes with break)

• How do you feel about what you have heard in this presentation?
  • Prompt: Did anything surprise you?
  • Prompt: Did you think anything was either particularly good or particularly concerning?
• Do you have any concerns about information being shared with private and third sector organisations [RECORD ON FLIP CHART; TRY TO GROUP]?
  • Prompt: What, if anything, would reassure you?
  • Probe: How do you think different groups of people will feel about this? For example, what about someone with a particular religious or ethnic background?
• How do you feel about private sector organisations making a profit as a result of research using your information?

EXPLAIN: In some cases organisations might work across sectors, for example data might be accessed by public-private partnerships or spin-out companies.

• How do you feel about "hybrid" organisations such as this accessing your information for research?
• We heard in the presentation that there are a range of approaches to sharing benefits from research, what do you think about this?
  • Prompt: Do you think benefit-sharing is necessary/appropriate?
  • Prompt: Do you think public sector organisations should share benefits?
  • Prompt: Do you think private sector organisations should share benefits?
  • Prompt: Do you think third sector organisations should share benefits?

DISTRUBUTE BENEFIT SHARING HANDOUT AND EXPLAIN: There are a variety of possible approaches to benefit-sharing. The presentation mentioned three examples:

• Which type of benefit-sharing do you think is most appropriate?
  • Prompt: What do you consider to be its advantages?
  • Prompt: What do you consider to be its disadvantages?
  • Prompt: What would you change about the approaches to benefit-sharing?
• What are the important features to be included in an approach to benefit-sharing [USE FLIP CHART TO LIST FEATURES OF BENEFIT-SHARING MODELS]?
  • Prompt: Who should benefit? Participants, populations, whole of society, future generations, government, public bodies, private companies, third sector organizations
  • Prompt: How should they benefit? Financial, profit, improved products or services, feedback, information
  • Prompt: Who should decide who benefits? Parliament/government, public consultation, quango, oversight body, organization conducting research, organization holding data
• Do you think members of the public should play a role in deciding how data is shared and used for research?
  • Prompt: In relation to which areas of decision-making?
• What are the most important features of public involvement [USE COLOURED SPOTS AND TABLE TO RANK FEATURES OF PUBLIC INVOLVEMENT]?
• How do you think members of the public should be involved [Discuss a RANGE OF METHODS]?
  • Prompt: Leaflets, advertising, website, consultation, research, representation

EXPLAIN: Just to finish up this discussion - thinking about what we have discussed here today, more generally:

• What do you think are the main things that SG can take out of today?
• Would you like to be kept informed about what happens next?

[RECORD ON flip chart]

14:15-14:30: Closing Session (15 min)

• The breakout groups will be brought back together and asked to feedback their views and preferences.
• Summarise key messages from the day and ensure agreements and disagreements noted.
• Thank participants for their input and reiterate next steps.

Distribute post-event questionnaire and incentives