REALITIES Overview
REALITIES (Researching Evidence-based Alternatives in Living, Imaginative, Traumatised, Integrated, and Embodied Systems) is a UKRI-funded research project within the Mobilising Community Assets programme. It uses community, nature, and arts-based approaches to re-imagine health and social care systems that better meet the needs of communities experiencing health inequalities.
The project is grounded in the premise that current health and social care systems are not working for those most in need and are themselves traumatised and disconnected. Drawing on trauma-informed organisational theory (Treisman, 2021), REALITIES aims to ignite systemic change by learning and actioning from community-led practice and lived experience.
REALITIES operates through five hubs across Scotland—Edinburgh, North Lanarkshire, Dundee, Clackmannanshire, and Easter Ross—each dealing with their own unique (and sometimes overlapping) health inequalities, and each supported by a Community Embedded Researcher (CER). CERs are long-standing community practitioners with deep local ties who co-produce and co-analyse knowledge alongside academic researchers. They work via their third-sector organisations to deliver arts- and nature-based activities for people experiencing health and social challenges, alongside one local authority-based service working with displaced populations.
Research activity is coordinated across five cross-cutting workstreams: Creative-Relational Assets and Natural Assets; Release Reimagined (focused on extreme marginalisation, including prison populations); an Index of Community Assets (quantitative data, public health interventions), Social Prescribing, and integrating lived experience with converged datasets. Together, these strands examine everyday practices within community organisations and how they reproduce or resist dominant health and social care systems, generating evidence-based alternatives to address health disparities.
What has led to this output?
This output emerged from collaborative work with the Binks Hub as part of the ‘REALITIES Translation Series’, which aims to communicate REALITIES findings in accessible and creative ways.
While GDPR is often perceived as a dry subject, it is critically important in its own right and as central to the REALITIES project. Ongoing challenges around interdisciplinary research, community engagement, and data governance prompted extensive reflection, discussion, and creative problem-solving. The REALITIES project manager once commented that it felt ‘like a Jenga tower’— where one misstep risks destabilising everything, highlighting the complexity and fragility of navigating ethical, legal, and relational dimensions of data within community-based research. The intricacies of interdisciplinary research and engaging with data.
1. Flow of Information—Hitting Brick Walls
There is often a fear around data-sharing—unfortunately, this can negatively impact organisations that are working towards the same goal of supporting community members, which in turn affects those community members’ health and wellbeing. Despite these organisations being interconnected, there is fragmentation in exchanges of information, and often times this gets stuck in a never-ending loop.
Spotlight Story:
In the North Lanarkshire, one of the hub’s strands of work works with migrants, refugees, and people seeking asylum. Practitioners are facing ongoing challenges due to the limited information that an accommodation provider—contracted by a central government department to house people seeking asylum—is able or permitted to share. The provider maintains that its ability to share data is restricted by national policy. Colleagues working in community-based learning and development note that this issue is not confined to one area: local authorities across Scotland are encountering the same problem. They require more detailed information in order to offer effective, person-centred support, yet at present the only data that can be shared relates to addresses and the number of beds occupied. As a result, services are unable to carry out targeted communication, outreach, or referrals that would be appropriate or beneficial for individuals and families. Community-based teams occasionally receive fragmented information indirectly, for example through health professionals who ask whether specific families are already known to local services, often noting that they themselves “have nothing.” In most cases, practitioners must respond that they hold no details, leaving services to hope that individuals discover support opportunities by chance. This lack of structured information-sharing creates significant barriers. It raises questions about why a formal data-sharing agreement cannot be established, particularly given the clear need for coordinated support. However, discussions between the Home Office, COSLA (Convention of Scottish Local Authorities), and practitioners appear to be stuck in a repetitive cycle: frontline services explain why the data is needed, while national authorities repeatedly challenge the necessity of those requests. This circular exchange has resulted in a persistent impasse, perpetuating substantial inequalities for highly vulnerable people across local authorities in Scotland.
REALITIES Remedy: A data-sharing agreement across and between interconnected organisations would be very beneficial, as it will allow the exchange of data that will prevent the possibility of vulnerable people slipping through the cracks.
2. Dual Roles and GDPR/Data-Protection Challenges
Within REALITIES, our community-embedded researchers often take on dual roles. They are community helpers first, and researchers second. This can pose GDPR challenges.
Spotlight story:
Sam, one of the REALITIES CERs who works with prison populations, has been a drama practitioner for years. Within REALITIES, he is a researcher, and as such, must ensure transparency and responsible data handling, but making data-collection explicit can disrupt the relational trust central to his practice, especially in a prison setting. GDPR requires participants to understand what data is collected and why, yet this necessary transparency can inadvertently make participants feel monitored or objectified, complicating the early relational work he normally prioritises. When Sam explained to the participants that he would be writing his reflections on their work together, a prisoner proceeded to ask, “So, are we microbes in a petri dish?” This remark reflected discomfort with being observed and objectified by data systems, and highlights how GDPR-driven transparency can unintentionally shift interactions, emphasizing surveillance over collaboration. For Sam, the comment underscores the difficulty of maintaining trust while balancing his roles as practitioner and researcher.
Solution: To address this, Sam adopted a principle: he does not write anything in his reflective notes that he would not be comfortable showing the prisoners he works with. He then extends this by sharing his entries with participants, allowing them to see how they are represented. This approach reassures participants, supports dignity, and aligns with GDPR principles of transparency and accountability, while preserving the trust and relational engagement central to his drama practice.
3. Repeating the Same Story
Because of data protection, consent forms need to be filled again and again, personal stories need to be told time and time again because services often can’t share information with each other. At best, this is frustrating, and at worst, its traumatising.
Spotlight story:
“I came to Scotland as an economic migrant, and one of the hardest challenges I face is getting proper medical support for my family member. They speak very little English and have ongoing health issues that mean lots of appointments. When I talk about this, I often find myself explaining that I’ve paid for our medical access as part of coming here — maybe because I worry people will think I’m taking free NHS care from someone else. I’m the unpaid carer for my family member, carrying both the mental and physical load. Every time we deal with healthcare, I have to fill out the same consent forms again and again. Why can’t one form cover both our medical files? Why must we face the same stressful process each time? If my family member goes to an appointment without me, I never know exactly what was said or done—and that uncertainty keeps me anxious.”
4. The Confusion of Data Containers
The REALITIES project’s search for a suitable data-holding container became far more complicated than expected. Although the programme NVivo was the obvious starting point, as it is popular among students and staff, the University of Edinburgh does not actually cover individual licences, and external collaborators cannot access it unless their own institutions pay for it. Even when the university does provide access, its licence only covers a specific version, and not the essential Collaborate Cloud add-on, which would allow the team to work cross-collaboratively across different locations and institutions. As discussions went on, further concerns were raised by the university’s data team around GDPR, data protection and transparency: NVivo is a US-based company, uses unspecified third-party subprocessors, and cannot clearly guarantee where data is physically stored, which is problematic for sensitive or non-anonymised material. This in itself was bizarre, as NVivo is widely known and used across academic institutions.
The university then recommended a programme called RSpace instead, as it is institutionally approved and theoretically more compliant. However, RSpace proved unsuitable in practice: it was extremely expensive on a multi-year project, its licensing was complicated, and the only contact the university had was based in Ohio, USA, making communication tricky because of the continental time differences. With no ideal alternative, the team returned to NVivo as the most workable option, but only with added requirements for ethical approval, explicit documentation in the data management plan and ongoing caution around data handling. The entire process has been frustrating because no tool met the combined needs of collaboration, affordability, functionality and GDPR compliance, forcing the project to spend significant time navigating administrative, financial and legal barriers instead of focusing on research.
5. Timing is Everything
Many a time, in research, it is important to get consent before the data sharing can begin. However, introducing consent forms right off the bat can be counteractive to building the relationships that are desperately needed to carry out proper co-produced, community-led research.
Spotlight Story:
CER Lucy reflects on the importance of timing when providing information about REALITIES to the community members who access the Easter Ross workshops. Working in a community context providing arts-and-nature-based activities for adults with complex challenges, Lucy considers how she navigates the facilitator-researcher boundary: “And I didn’t even talk to them about consent...didn’t even bring up the research today. They know it’s there in the background. We talked about it when they were first signing up, but I'm not going in on a first session and going right go on because… they’re quite vulnerable. And I'm not just bouncing and hitting them with research. So, we’ll probably do two, maybe even three sessions before I go: “Right. OK. Do you want to be involved in this?” We build up some trust first…before I start producing consent forms.”
REALITIES Remedy: In addition to the strategy used by Lucy, the organisation Artlink, a key REALITIES member, faced similar challenges. It is built around a sense of togetherness, where creativity and art-making shape the atmosphere and guide the work. Like any organisation, it must handle consent, data gathering, and data sharing responsibly. However, at Artlink, these processes are not driven by paperwork but by relationships. Instead of beginning with forms, staff focus first on conversation and trust, completing the formalities afterward—a flexibility that comes with being a smaller organisation. They might start by asking someone if they would like to have a conversation; if the person agrees, Artlink later invites them to listen back and decide whether they are comfortable with what was recorded and whether it can be shared. Only when the person confirms this do staff bring in the paperwork, explaining that signatures are needed for organisational accountability. Because the consent process follows the conversation rather than preceding it, people tend to feel more relaxed and in control, knowing they can withdraw at any time. This approach is crucial at Artlink, where many individuals arrive feeling that their personal agency has been diminished by the systems surrounding them, and where restoring that sense of agency is central to the organisation’s ethos.
6. Power Imbalances and the ‘Freely Given’ Standard
Formal data-protection processes, such as Participant Information Sheets (PIS) and consent forms, can create tension when working with marginalised groups. While the CERs and academic researchers crafted PIS in plain English and translated them where needed, written materials alone cannot ensure accessibility. Explaining the research at the point of consent remains essential. GDPR and ethical governance require clarity and informed consent, but these formal structures can inadvertently create discomfort, especially for participants who have prior negative experiences with bureaucratic systems. Marginalised groups, by virtue of their marginal status, often carry challenging experiences of entanglements with formal governance structures.
Spotlight story:
Deborah reflects on how formal consent processes can strain her relationships with community members. Participants may feel pressured to sign consent forms, not out of genuine agreement, but to avoid offending researchers or risking access to services. As she notes, some participants admitted they would have signed “out of total respect and not wanting to come across as rude,” highlighting the potential for consent to be influenced by social dynamics rather than true voluntary agreement. This demonstrates a GDPR-related challenge: ensuring that consent is both informed and freely given, without coercion or perceived obligation.
7. When Language Fails
In the GDPR world, language and terminology tends to be very fixed. But what happens when someone doesn’t identify or are comfortable with the wording being used to describe them?
Spotlight story:
In the Clackmannanshire and North Lanarkshire hubs, push-back on language in formal forms and processes has come up. In Clackmannanshire, which works predominantly with children and young people, CER Shona noted that many did not want to be labelled as ‘care experienced’, as it carried stigma. Meanwhile, in North Lanarkshire, the term ‘New Scots’—which is used to describe someone who has come to Scotland as a migrant, refugee or asylum seeker—was met with hesitation and discomfort.
REALITIES Remedy: In North Lanarkshire, the term ‘New Scot’ has now shifted to ‘new in North Lanarkshire’—which offers a more open, inclusive phrasing that welcomes anyone who has arrived in the locality.
8. Real-World Complexities
GDPR requires data to be collected for specified, explicit purposes, yet community-led and co-produced work such as that which happens in REALITIES often evolves in response to participants’ needs. Data gathered for one reason (such as participation in an arts activity or support service) may later become relevant for advocacy, evaluation, or referral, which would create tension between rigid purpose limitation and the adaptive, relational nature of community work.
9. Data Collapse
When date sharing breaks down in an organisation, it is danger of complete failure such as a collapsing Jenga tower.
Credits & Funding Acknowledgments
Funding acknowledgments: we are grateful for the communities and collaborators who so generously gave their time, energy, and insights. Funding for this research come from three interconnected sources.
First, the project called Active Communities Arts Development: Social Prescribing, Sustainable Strategic Planning and Breaking Down Barriers Across Sectors in North Lanarkshire (reference AH/W008912/1).
Secondly, REALITIES Phase 2 was funded by the UKRI’s AHRC-led programme to build community research consortia to address health disparities (grant number AH/X006131/1).
The research continues into REALITIES Phase 3 funded by a UKRI mobilising community assets to tackle health inequalities research grant for the project titled: REALITIES in Health Disparities: Researching Evidence-based Alternatives in Living, Imaginative, Traumatised, Integrated, Embodied Systems (Grant Ref: AH/Z505456/1).
Project Lead: Marisa de Andrade at the University of Edinburgh.
Co-investigators include: University of Dundee, St Andrews University, Glasgow School of Art, Manchester Metropolitan University, Bethany Christian Trust, Ochil Youth Community Improvement, Artlink, Ninewells Community Garden, Flip of the Coin, and North Lanarkshire Council.
