Distributed Dialogue Final Report

AUTHOR: Madeleine Gough

DATE: January 2023

The problem

National and local governments hold increasing amounts of data about the public, which is used in prioritising, reforming and delivering public services. However, this data is often not used to its best effect due to the lack of public trust and acceptability of data-driven decision making. As a result of historical and ongoing oppression and injustices, trust in government’s use of data varies significantly between communities.

Service providers have limited understanding about how different communities view, understand and accept data sharing for wider public benefit. They are therefore often unwilling to take the risk of potentially controversial data sharing. As a result, there is no public consensus on the role of data in delivering services for the benefit of the public.

Deliberative publicengagement methodologies such as citizens’ juries, citizens’ assemblies and public dialogues offer one way of developing an understanding of how different publics make these value judgements. While these methods have had significant impact on public policy involving science and technology, they rarely support a wider, sustained public debate. This project piloted a new form of deliberative engagement: a distributed dialogue.

Aims of the project

The distributed dialogue pilot project aimed to develop a sustained, deliberative engagement with geographically bounded community groups and individuals about the sharing of data and data governance.

The project had four aims:

● Support individuals and communities to better understand and manage their own data to support their needs (for instance, accessing their health and social care data);

● Support individuals and communities to deepen understanding of deliberative practice and feel empowered to better manage their own needs (for instance, health and social care) through accessing their own data;

● Support individuals and communities to develop relationships with local decision makers and more actively engage in local decision-making processes;

● Supportlocaldecisionmakerstotakeaccountofpublicperspectiveswhenmakingpolicyabout data collection, use, storage, and governance.

Methodology

Adistributeddialogueisadecentralisedapproachtodeliberationwiththeaimofdevelopingdispersed, ongoing, and embedded discussions about a specific policy issue. Distributed dialogues are place- based and sustained dialogues between community organisations that directly inform decision-makers.

Distributeddialoguesareiterative;communitygroupsareengagedonanongoing basiswithdeveloped questions and ideas to see how their views and opinions change and to hold decision-makers accountable to action based on previous workshops.

This methodology supports the development of individuals and communities' sense of belonging, agency, and decision-making ability within a locality. The dialogues are intended to create interest, curiosity and investment into the topic area and active community decision-making more broadly, sharing this beyond the workshops with other people in the community and supporting community ownership over local decision making.

02. How it worked

The Project

The distributed dialogues were initially intended to take place across two contrasting areas: North Lanarkshire, an area with a more dispersed and ageing population; and Camden, an area with a highly diverseandmobilepopulation.Byengagingwithtwodifferentlocalities,theprojectintendedtoproduce a comparative analysis of the success of the methodology in building decentralised approaches to deliberation around the topic of data use and sharing. However, due to the onset of Covid-19 the North Lanarkshire dialogues didn’t take place. Instead, the project continued in Camden, with workshops taking place between September 2020 - October 2022. The following report outlines the Camden project.

There were three iterations of the distributed dialogue project in Camden. Iterations One and Two took place between 2019 - 2021 and explored different community group’s perceptions of the use and governance of data by Camden Council. The outputs from this round fed into Camden’s Residents’ Panel on Data in Autumn 2021, which led to the development of Camden’s Data Charter. Due to Covid19, the workshops in iterations One and Two all took place online.

IterationThreetookplacein2022andfocusedonanexplorationofthenewlycreatedDataCharterand how it could be improved. During Iteration Three, community groups were offered the option of participating online or in-person.

Recruitment

The recruitment process for community groups was split between Involve and Camden Council. Camden provided an initial list of community groups, and each group was individually contacted by email and a phone call to explain the purpose and process of the dialogue workshops.

Once community groups indicated their interest, a workshop would be organised at a time convenient to the community group and would be hosted in their usual meeting space (or online). This was intended to centre conversations in spaces where participants would have a connection with and feel more comfortable, ensuring the power was centred with the participants. The workshop would ‘come to them’ as opposed to them coming to a Camden Council meeting space.

A total of seven dialogue workshops were held across the three iterations, with a total of 39 participants.

Participants or community groups were not paid for their participation, instead the workshops were designed with an emphasis on the process as a collaborative and mutually beneficial exercise for participants and Camden.

Workshop Design

Each workshop was facilitated by two community researchers, one acting as the lead facilitator and one as the primary note taker. Community researchers were recruited for their existing connections with community groups in Camden, emphasising the intention that power be centred with the community rather than Camden in the workshops. The pre-engagement and onboarding with participants led by community group leaders, minimising resourcingfor thedeliveryteam andenabling a more participant-driven engagement model where the power lies with the community group. This also allowed more flexibility in the final attendee list for each workshop, accounting for other commitments or demands that participants might face. As a result, facilitators were encouraged to adapt to the size, needs and engagement levels of the specific community group they were working with, for instance breaking a larger group into two smaller groups to allow more detailed discussion.

Before each iteration, Involve provided a half-day facilitation training workshop for all community researchers. During these training sessions, community researchers had an opportunity to learn in more detail about the Data Charter, Data, and the case studies the workshops were based around. Community researchers explored the key elements of deliberative engagement and howit differs from other forms of engagement. Community researchers then had an opportunity to review and offer revisions for the dialogue workshop design that they would be delivering. This collaborative approach to design was intended to bring a more community-centred approach to the design.

During Iterations One and Two, the dialogue workshops fed directly into the First Residents’ Panel on Data, held in Autumn 2021. The purpose of this panel was to better understand residents’ views about the collection, use, storage and governance of data by Camden Council and to develop a Data Charter for Camden that provides an ethical framework for how Camden manages resident data. A full version of Camden’s Data Charter can be found here.

Each workshop lasted between 60 - 90 minutes and consisted of four stages:

1. Introducing participants to the Camden Data Charter

2. Introducing participants to the use of data in Camden through a case study

3. Exploring reactions to the use of data considering the case study

4. Exploring the implications data use has on the Camden Data Charter

During Iteration Three, the dialogue workshops fed directly into the Second Residents' Panel on Data, held early in 2023. This panel aimed to scrutinise Camden’s’ adherence to the Data Charter principles by studying case studies, and then providing recommendations for additions to the Charter and commitments for Camden to achieve in the period before the next Resident Panel.

Each workshop lasted 90 minutes and consisted of five stages:

1. An introduction to the session and icebreaker activity

2. Introducing participants to the use of data in Camden through a case study

3. Exploring reactions to the use of data in light of the case study

4. Introducing the principles of the Data Charter

5. Exploring which principles are most important and what is missing from the principles.

Case Studies

Case studies were utilised across the iterations to support participant learning and contextualise the implications of choices around data. The case studies explored how data is currently or might be used in the future by Camden Council. The following case studies were used.

Iterations One and Two

Linking Health and Social Care Data: Linking sensitive health and social care data to ensure medical and care needs are understood by all those caring for an individual. This ensures there is consistent and quality care for the most vulnerable residents without these residents having to regularly re-tell their story.

Verifying the Identity of Blue Badge Holders: This case study explores how the Council is using automation and its existing data to reduce wait times for blue badge applications, allowing them to streamline staff workloads.

Usingdatatounderstandresidents’needs:AnalysinghistoricaldatacanhelptheCounciltounderstand why someone falls into crisis and can help the Council design and offer services to help rather than adding to the problem by simply chasing council housing rental arrears.

Deciding where to put electric vehicle charging points: This case study explores the possibility of using data science and an algorithm to maximise the use and fair distribution of electric vehicle charging points in Camden to promote and encourage more electric vehicles.

Iteration Three

Linking Health & Social Care data: This case study focuses on linking sensitive health and social care data to ensure medical and care needs are understood by everyone caring for an individual To provide consistent and quality care for our most vulnerable residents, without them constantly having to re-tell their story.

03. Participants’ Perspectives on Data Use

A note on the findings.

A total of 40 participants took part in seven dialogue workshops between 2020 – 2022. Due to the relativelysmallsample size forthedialogues nofirm conclusions can be drawn abouthowwidespread any of the perspectives are across Camden. As a result, the key findings below are tentative conclusions about emergent commonalities in views across workshops. This does not undermine the value of the insights and instead offers a picture representative of the views expressed by the 40 participants who took part in the dialogues between 2020-2022.

Key Findings from Iterations One and Two

Iterations One and Two had three objectives: to introduce participants to the Camden Data Charter; to introduce participants to the use of data in Camden; and to explore reactions to this use of data and implications for the Data Charter. The following section outlines the key highlights from Iterations One and Two.

Benefits of using data

Improvements for service users:

• Resident’s can access services faster;

• More targeted support for vulnerable individuals and groups;

• Support for those currently falling through the ‘gaps’, can provide support for those who need them but aren’t currently using them;

• Service users don’t have to repeat stories or experiences to multiple services;

• Allows services to be more integrated, allowing for a holistic approach to service provision

Improvements for service providers:

• Easier access to information means less resource intensive service provision, saving on administrative tasks and sifting through information;

• Develop more accurate predications which allows more accurate strategic planning and resource allocation in the short, medium and long term;

• Prevents delays;

• Provides a more complex picture of individual needs and therefore which service(s) are most appropriate to offer the necessary support

Potential Risks or harms of using data

Risks for service users:

• Individual privacy risks;

• Cyber security and hackers, especially concerns about how it easy it would be to access complex and personal data;

• Sharing data with third parties, in particular concerns about private companies have access to sensitive data;

• Unnecessary data sharing with service providers, for example sharing medical histories with carers;

• Concerns data would replace alternative qualitative approaches to engagement for instance visits by housing officers, public engagement workshops;

• Sense from some participants that there was a lack of trust between residents and Camden council which could prevent the benefits of using data; in this way from happening

Additional considerations that would influence resident views

• Consent is vital and residents should be provided with easy options to ‘opt-out’;

• Clear communication and transparency about data collection, use, storage by whom and for what reasons;

• Specific support or guidance for vulnerable people to prevent exploitation;

• Importance of considering diversity within communities and the need to reflect this in approaches to data use and governance;

• Need to build trust between communities and Camden through transparency and accountability;

• Need for communication about the benefits of using data in the ways outlined;

• Must be multiple forms of engagement about data to capture views from across the community;

• Need to be clear about the aims and purpose of the charter

Iteration Three Findings

Iteration Three had three objectives: to introduce to participants to how data is used in Camden; to introduceparticipantstotheDataCharter;andtoexploreparticipantreactionsandsuggestedrevisions to the Data Charter principles. The following section outlines the key findings from Iteration Three.

Weighting or Comparative Importance of the Data Charter Principles

All principles were considered of equal importance, and it was emphasised that they are all interdependent.

Reflections on the Data Charter Principles

• There was uncertainty about impact that Charter would have in practice and howthis would be communicated to residents; o Particularly, there was uncertainty about how Principle Two1 would be implemented.

• There was interestto have more detail abouthowstandardsfor transparency would be defined in Principle One;2

• There were concerns about how consent would be sought for those less able to give or understand it e.g. residents with dementia or other health conditions, and felt this should be more clearly articulated under Principle Four;3

• Concern was raised about how Camden could ensure compliance of Principle Five4 with external contractors and third parties who hold, process, store or otherwise interact with resident data;

• Participants raised questions about how digitally excluded residents would be included in the Charter commitments.

1 ‘Provide accountability and oversight’

2 ‘Build Trust through Transparency’

3 ‘Make sure data is used for public good and be mindful of residents’ data’

4 ‘Be beneficial for all by using an outcomes-based approach’

Additional Areas to be Considered for Future Revisions to the Charter

• Conditions, mechanisms and timelines of action if Camden is found not to be upholding the Charter;

• Clarity about the process for accountability and oversight of Camden’s implementation of the Charter;

• ExplicitmentionofmeasuresCamdenwilltaketoensuretheCharterisinformedbyanddelivers inclusive and accessible practices for a diversity of residents;

• Explicit mention of how third-party data processors will be included, monitored and held accountable in line with the Charter Principles.

04. Evaluation

Involve worked closely with Icarus to produce an evaluation of the distributed dialogue project. A summary of the key findings is below:

● Overall, the feedback from both participants and facilitators about the workshop sessions was positive.

● At least 60% of participants who gave feedback reported that they had an increased interest in and knowledge about data usage, an increased sense that they can influence how their data is used and had more trust in local government.

● At least 80%of participants who gavefeedback reported thatthey were abletofully participate, the instructions and information were clear and that the meeting was well run.

● Facilitators reported that 6 out of 7 workshops fully met their objectives and 5 out of 7 workshops produced well informed and open-minded dialogue.

● The Distributed Dialogue process was thought to be successful in informing the Residents’ Panel for the Data Charter.

● However, the low group numbers throughout this pilot means that it is difficult to draw robust conclusions about the outcomes. Indeed, one of the largest challenges of the pilot was recruitment of participants, this was substantially affected by the COVID-19 pandemic.

● These challenges prevented the Distributed Dialogue methodology from being piloted to its full extent whereby the “defining feature is that the dialogue events are self-organised by groups of participants,withtheaimofengagingawiderangeofcommunities,differentstakeholders,and the general public in discussions.” (Involve)

● The iterative process allowed learning to be taken forward mid-project. For example, the facilitators identified challenges and co-developed solutions at the debrief sessions.

● Facilitators reported that training met their needs and prepared them for delivering the workshops sufficiently. There was however a general feeling of anxiety/lack of confidence about delivering the workshops due to being unfamiliar with the topic of the data charter.

● Overall, there has been substantial learning from this pilot but there also remains a level of uncertainty about the impact of the Distributed Dialogue compared to other methodologies and further testing is required to understand its potential.

05. Conclusion

The distributed dialogue methodology aimed to support individuals and communities to better understandandengagewiththeirdata,to makemoreinformeddecisionsabouthowtheirdataisused, and to develop stronger relationships with local decision makers. This project also aimed to support Camden Council to better account for public perspectives when making decisions about data.

Of the 40 participants who took part in this trial methodology, 60% reported that they had an increased interest and knowledge about data and an increased sense that they can influence how their data is used. This increased understanding and sense of influence shows how this methodology has helped empower participants to understand where and how their data is used, how to access their data in Camden and what steps they can take to better manage their own data.

Additionally, 60% of participants felt their understanding about the use of data in policy formation had increased and 68% agreed that they now have more interest in finding out how local authorities and public bodies use their data. These findings indicate that participants were empowered through this process to engage with current debates about public data use and governance and are better able to connect these debates to policy processes.

WhilstthenumberofparticipantsreachedwaslowerthanexpectedlargelyduetoCovid-19,theoutputs from Dialogue Workshops directly fed into Camden's Residents' Panels in 2021 and 2023 as evidence from the wider community, informing the creation and review of Camden's Data Charter. This demonstrates the usefulness of the workshops for informing Camden’s decision making about data governance, giving insight into views from a wider section of the public alongside the mini-public methodology of the Residents’ Panel.

What’s next?

We are facing a series of interconnected social and ecological crises that impact the capacity of participants to participate in public engagement processes, in particular those who experience intersecting oppressions. Often participants are struggling to maintain living standards and spending time to engage in workshops - especially, on topics such as data that can seem removed, difficult to understand, or less urgent (or all three) – can be the last thing on their mind. Challenges to designing and delivering inclusive and accessible public engagement is further exacerbated when the engagement is sustained and built on collaboration between decision makers and participants.

Despite the external challenges, this project has outlined the benefits of trialling innovative methodologies to support decision making about data governance, and the challenges we face to create sustained engagement on data during times of crisis There is scope for further innovation to trial distributed dialogues as a method of building strong, resilient, and community-centred data governance. A few suggestions for how this methodology could be adapted in the future include:

• Delivering the methodology in multiple locations to enable comparison for challenges, successes and learning;