The role of lived experience in research

In 2023 and 2024 Audit Scotland conducted a Performance Audit to assess how well public bodies understand and tackle digital exclusion. Corra supported the public engagement element of the audit, aiming to ensure that people’s experiences shaped the audit process at all stages.

As someone who is passionate about universal access to digital technologies, I have seen firsthand the transformative benefits it can bring to communities. In my previous role as a Community Co-ordinator I worked on a project to deliver digital skills-building classes and helped source funding to install free wi-fi and public-use tablets and laptops in the community centre. When the pandemic hit, I quickly supported a group in establishing a digital device lending library to ensure access to education during a critical time.

My commitment to ensuring that lived experiences shape decision-making processes is deeply rooted in my professional journey. As a young person I was a Member of the Scottish Youth Parliament and have consistently advocated for the inclusion of diverse voices in policy development and decision-making processes in every organisation I have worked in. In my role as the Participation and Connections Officer on the Promise Partnership, I collaborated closely with a panel of people, with lived experience of Scotland’s care system, to design and deliver the first few rounds of Promise Partnership funding. This experience reinforced my belief that people directly impacted by policies should be integral to crafting solutions.

Involving people who have faced digital exclusion not only enriched the discussion within the focus groups but also ensured that the recommendations made in the final report addressed real issues faced by people across Scotland. By creating spaces where empathy and understanding are prioritised, we can achieve more effective and sustainable outcomes that truly reflect the needs and aspirations of our communities.

The value of lived experience in shaping research

When we make space for, include and value lived experience we transform the typical research dynamic, which tends to be a more extractive, top-down process. Recognising the expertise that participants bring involves allowing people to share their experiences in their own words and having these personal stories treated as valid and valuable forms of knowledge, viewing their lived experiences as a form of expertise.

During our focus groups across Argyll and Bute and Renfrewshire, people shared their challenges and successes in accessing online tools and services. We heard from parents about the difficulties they have in engaging with schools via the variety of education and payments platforms they had to navigate. We also heard from people who live in areas where the telecommunications infrastructure is remote from their homes (rather than them living remotely from the infrastructure, which was installed long after people settled where they have across Scotland), forcing them to seek out less reliable wireless connections for internet access.

These, and the other stories we heard, highlighted issues and influenced the direction taken by Audit Scotland in their Audit. This approach transforms participants from data points to storytellers, acknowledging the richness and capturing the complexity of people’s lived experiences.

Recognising contributions

In many research projects, participants contribute valuable time and insights without receiving adequate recognition, with little consideration to the financial barriers to participation. Recognising the expertise that participants bring involves compensating them, removing financial barriers to participation, ensuring involvement is equitable and respected.

Participants at all of the focus groups received a gift voucher as a thank you for their time and a recognition of their contribution during the session. Participants that then joined the reference group were also given gift vouchers as a recognition of their sustained support and involved in the review process. By valuing participants contributions as a legitimate form of expertise and ensuring they are compensated fairly, we create inclusive spaces by enabling a wider range of voices to be heard and ensures the review findings reflect diverse perspectives and experiences.

Promoting equitable participation

The integration of lived experience in research processes is not just a fad, it represents a change in our understanding of what constitutes good research. By valuing participants as co-creators of knowledge, we can build an inclusive research environment that respects and seeks out the diversity of experiences that are present within our communities.

My journey in supporting people to get access to and fully utilise digital technologies has reinforced my belief in the importance of equitable participation. To fully realise the benefits we have to prioritise:

• Policy development ensuring equitable compensation
• Maintaining open communication channels
• The creation of collaborative spaces
• Embracing flexibility in the design process

“The involvement of people with lived expertise in design, delivery and decision-making of support and services that impact them is vital… but it has to be meaningful. People need to see how their contribution is making a difference.”  (Corra Foundation, 2024, Youth Engagement in Grant Making)

By doing all of this we can enhance the quality and meaningfulness of participant experiences and contribute to more equitable processes in which every voice is heard and valued and meaningful change realised.

Read the Navigating Digital Barriers Report which shares more of the approach Corra took on this research.

References

Corra Foundation (2024). Youth Engagement in Grant-Making: Insights and Learning to What Enables Meaningful Participation by Children and Young People for Creative Scotland. Accessed on 01/12/24 at https://www.corra.scot/youth-engagement-in-grant-making-report-for-creative-scotland/