The team behind the Digital Health Inclusion Project check in with the Breakfast and Browsing group at Burmantofts Community Friends. This blog was written by Lily Arnold and Emma Carta (UCL Research Assistants).

Introduction

The Digital Health Inclusion Project at UCL has been researching Digital Health Hubs across Leeds for the last year. These hubs are part of a community based approach to digital inclusion, facilitated by 100% Digital Leeds, in collaboration with VCSOs and the health sector.

As the project wraps up, we took a last visit to the Breakfast and Browsing club run by Burmantofts Community Friends, to check in with the group members about our initial findings. Some members have given their time to the project already, but this workshop allowed us to open up discussions with the group and hear more experiences and perspectives.

Digital exclusion has wide-ranging implications for individuals, including poorer health outcomes, increased social isolation, and limited access to essential services. The National Government has been criticised for lacking a credible strategy and failing to prioritise the issue of digital exclusion effectively. But local authority led interventions in Leeds, which are delivered through community hubs and partnerships, play a crucial role in reaching digitally excluded individuals and building essential skills and confidence.

Workshop Overview

We began the session thinking about what works well at the Breakfast and Browsing group, asking the members why they enjoy coming along to the sessions. Then, armed with craft supplies, we turned these discussions into recipe books coming up with recipes for getting online.

While participants mostly only finished the covers of their recipe books, the conversations happening around the table were very insightful! As the workshop drew to a close, instead of a recipe book, members of the group asked for their work to be turned into a poster which could advertise the Breakfast and Browsing sessions to a wider audience.

Key Findings from Field Notes

• Participants enjoyed and appreciated the warm and welcoming atmosphere of the group, and talked often about the importance of social connections and friendship. Multiple times, and in different contexts, the word ‘family’ was used to describe the bond the group felt to each other.
• Breakfast and Browsing meets the need for personalised and flexible approaches to digital inclusion, and it recognises the diverse needs and preferences of individuals who attend the session.
• In depth, ad hoc, one on one digital inclusion work takes place at the periphery of the sessions, with light touch scaffolding at the centre for those who want to engage.
• The breakfast element of Breakfast and Browsing is so much more than just a meal, eating together contributes to the warm atmosphere of the group and establishes a trusted routine.
• The time the group runs on a Monday morning was also noted as being useful, with participants describing their participation as starting the week off on the right foot.

Checking in with the Breakfast and Browsing group provided valuable perspectives from participants on what makes Digital Health Hubs successful. Just as the group requested, here is a poster which combines their different ideas together to advertise the session for more people to join:

On World Humanitarian Day, Dr James Smith, Lecturer and Co-Director of UCL’s MSc in Humanitarian Policy & Practice reflects on the evolution of the humanitarian landscape and some of its inherent challenges.

The United Nations have stressed that the number of people requiring immediate ‘humanitarian assistance and protection’ has never been greater than this year. In the absence of concerted action, the impact of violence, widespread lack of access to essential public services, and wilful political indifference and neglect will continue to generate catastrophic levels of human suffering and ecological damage.

If we define humanitarianism in its broadest sense as a belief in the equal value of human life and a concern for human welfare, then the need for some form of humanitarianism appears as urgent as ever.

At the same time, popularised expressions of humanitarianism have shifted and changed over time. Humanitarian values have been institutionalised and bureaucratised, and corresponding systems and sectors have formed and grown. Now-dominant forms of humanitarianism have histories and contemporary articulations that are intimately tied to capitalism, colonialism and whiteness. Relatedly, criticism of the humanitarian system and its interventions has increased exponentially in recent years, driven forward by scandals that detail abuses of power, the undignified treatment of people in vulnerable situations, and a failure to enact the radical changes needed to alter how financial support is generated and distributed, or the means by which communities can take control of their own decision-making.

The growing number of instructive critiques of humanitarian action should inspire us to identify new ways to teach, study, and enact humanitarian values. It is increasingly clear that existing institutions, systems, and processes need to change and adapt in order to practice an ethics of care and concern. At the same time, calls for transnational solidarity (consider, for example, the vibrant civil society movements that pressed for equitable access to COVID-19 vaccines), and global resource and knowledge sharing, are strong. The fundamental values that define humanitarianism can support and amplify these calls.

With UCL’s new MSc in Humanitarian Policy & Practice we are enthusiastic about working with students and professionals that are representative of the current and future global humanitarian workforce in order to think creatively and critically about humanitarian values and ethical and effective forms of humanitarian action. In doing so we will ensure students have the ability to develop programmes while continually interrogating foundational values, principles and motivations, and to design research studies while thinking critically about the politics of knowledge production, alongside several other priority topics.

By taking these steps we hope to contribute towards future humanitarianisms that enact a concern for our shared welfare in a way that is equity oriented, justice motivated, and solidarity driven.

Written by Camilla Rossi, Jo Blodgett, Chandrika Kaviraj, and Aradhna Kaushal 

The way we research health matters. Despite a growing awareness of stark health inequities across the UK, most health research does not involve people from ethnic minority groups. This under-representation not only hides the experiences of those who are often most at risk of poor health, but it also prevents appropriate solutions from being developed. Through a UCL Research Culture Award, we organised a co-production workshop in London to better understand what might prevent equitable participation in health research and how to start addressing these barriers.

The workshop was held in June 2022 at UCL and brought together a group of six participants who identify as ethnic minorities. The activities developed around two main sessions: in the morning, the group brainstormed potential barriers to participation and discussed when they might emerge; the afternoon was dedicated to considering how they could be addressed, discussing the practicalities of involving people from different ethnic minority communities.

The project was informed by the notion of ‘knowledge co-production’. Through this approach, the researchers step back from their traditional role as ‘experts’ to make space for lived experiences as central forms of expertise. One of the ways we did this was by designing the workshop in collaboration with a member of the public, Chandrika Kaviraj. Chandrika reviewed and informed our initial proposal and is now overseeing the analysis and communication of the findings.

What is preventing equitable participation in health research?

Drawing from their families and their personal experiences, the participants identified a variety of potential barriers which we grouped under three main categories.

Lack of trust in institutions and their representatives emerged as a key underlying theme.  Participants discussed the effects of “previous negative experiences”, “fear” of institutions and of the repercussions of getting involved, and shared a general perception that medical professionals and researchers are not trained to engage with racism and the trauma it causes:

“My mom would have so much to add to and learn about health research, but she is so deeply scared of institutions because of how she has been treated in the past.” (British Asian, male, 18-29)

Language and socio-cultural obstacles experienced within the health sector were identified as often concurrent, leading to a difficulty in communicating and being heard from both a linguistic and cultural point of view. This can contribute to a sense of “being invalid”, “incorrect”, and “uneducated”:

“Due to language barriers, due to feeling like it is something we’re not a part of, and due to doctors not understanding the cultural context … this leads to an inability to express.” (Black British, female, 40-49)

Practical barriers contribute to people perceiving health research as “not doable” or “relevant”. These can include lack of time and childcare needs, as well as the use of technology and the location of the study.

It is important to stress that the term ‘ethnic minorities’ includes a highly varied population, with ethnicity being only one of the many social categories shaping personal and social identity: different barriers might be more or less relevant to certain individuals or communities depending on factors such as gender, age, disability, or socioeconomic status. Engaging with this diversity and fluidity of experience is essential to avoid simplistic representations which may end up reinforcing the very barriers we are trying to dismantle.

What are the possible solutions?

Participants agreed that all barriers are exacerbated by researchers’ lack of knowledge and engagement with communities. This leads to research methods that do not fit with people’s lived experiences and needs.

The group developed four main recommendations.

1. Tap into existing community structures

Researchers need to go beyond “traditional means” to make the research meaningful and relatable to people. Engaging with existing community structures and “physically going out there” was highlighted as essential. When the researcher has no existing links with a particular group, the involvement of a community member in the design and development of the project was recommended.

“You need more of a ‘community development mindset’: use the local authorities and look for places where people are already involved. Go out there.” (Black British, female, 40-49)

2. Be transparent about the research aims, objectives, and challenges

The aims and objectives of the research needs to be communicated with clarity and transparency from the beginning: how can the research add value to their communities, families, society? What impact could it have and what are the limitations? Participants agreed that being transparent about the potential challenges involved might help to build trust, making researchers easier to relate and resonate with:

“These communities can smell fraud from miles: be honest about the barriers involved, we can relate to your constraints! If you manage people’s expectations, they will respect you more.” (Black British, male, 50-59)

3. One size does not fit all: make the project flexible and adaptable 

Investing time and resources into tailoring the research process was highlighted as essential both to encourage people to participate and ensure that they are not forced to drop out. Participants recommended advertising the study through different means of communication, both online and offline, hosting the study in safe and inclusive spaces, dedicating ample space for questions, and being ready to allow time, space, and support for participants struggling to commit for personal reasons:

“Show support and availability, the whole process needs to be more adaptable, flexible, and caring… which also means labour intensive!” (British Asian, male, 18-29)

4. Bring the results back to the communities

Confining the research findings to academia can widen the gap between participants and the researcher, discouraging people from taking part in future studies. Instead, diversifying how research is communicated, including accessible reports and in-person presentations within community settings, could contribute to strengthening trust and generate new opportunities for engagement:

“The research needs to get back to the public who participated, they cannot be forgotten. Otherwise, they won’t participate again, and mistrust will continue.” (Black British, female, 40-49)

Next steps

The results of this project will be written up for publication in the coming months with plans to disseminate the findings widely across UCL, and beyond and to embed the learnings into relevant courses and teaching practices.

If you are interested in finding out more about this project or would like to be kept informed about future development – please email research.involvement@ucl.ac.uk