Bringing data to life with lived experience

One of the important aspects of Patient and Public Involvement in research is its ability to bring research data into the ‘real world’, but how does this work in practice? This blog shares examples from the CommonHealth Assets Lived Experience Panel (LEP) and describes how researchers have facilitated opportunities for quantitative data to be brought to life by including lived experience perspective while analysis is still ongoing.

Our sixth and final LEP meeting was held in Glasgow in October 2024. This meeting brought together our 10 Panel members from across the UK to learn about the progress of the final stages of the CommonHealth Assets project (CHA) and to help the researchers in interpretating data from the questionnaire study and Q study components of the project.

Questionnaire study

The questionnaire study component of the CHA project measures the health and wellbeing of people who participate in activities at their local community-led organisations (CLOs) across 12 months, using standardised research tools, which focus on, capabilities (ICECAP-A), mental wellbeing (WEMWEBS) and quality of life (EQ-5D). social connectedness (SCS-R), and mental wellbeing (WEMWEBS).

Participants completed questionnaires at four time points (baseline, one-month, six-months and 12-months) to track potential changes in wellbeing over time. By examining the data from these responses, researchers are able to explore what works in CLOs to improve health and wellbeing, for whom, and in what contexts.

In total, 351 participants from Belfast and surrounding areas, Glasgow and Lanarkshire, East London and Bournemouth took part in the CHA questionnaire study, with an impressive 296 participants retained from the start to 12-months. The data from the questionnaires are now being analysed and examined by the team.

At our LEP meeting in October, the Panel were presented with some initial results from this analysis on a graph which displayed patterns of wellbeing for different groups of participants attending different CLOs across 12-months. For example, one group displayed high wellbeing on completion of the first questionnaire and maintained this across 12-months of being involved in their local CLO, whereas another group had low wellbeing to start and did not improve across 12-months.

Figure 1: Graph illustrating patterns in wellbeing across different groups of participants

To understand who might be in these groups beyond their social and demographic characteristics, and what might be going on to produce the different patterns of wellbeing, the LEP were asked to create a profile of who each group may represent – drawing on their experiences of participating and volunteering at their CLOs.

The Panel proposed that those with high wellbeing at baseline were likely to represent individuals who had a strong support network outside of their CLO and who were “not afraid to ask for help”. They could have joined the CLO to try new activities rather than to seek help. Whereas those with consistently low wellbeing across 12 months could represent individuals who were referred to the CLO by a health professional but who are not ready to engage.

The timing of data collection was also raised as a potential factor in producing the observed patterns. The Panel shared that some people may need longer than 12 months with a CLO to see the benefits, and that life events could have impacted wellbeing more than CLO involvement.

This feedback helped the researchers to understand more about the different real-life situations and contexts in which the data is situated in, and brought valuable insight into the experiences of the questionnaire participants that researchers might have otherwise missed.

Q methodology

Q methodology in CHA is being used to explore participants perceptions of the aspects of wellbeing CLOs  impact on. In Q, participants sort cards, which display different statements, onto a grid according to whether they agree or disagree with them.

The Q sorts are then grouped together based on shared viewpoints to produce a ‘factor’. By creating these groupings/factors, different and shared perspectives between groups of participants can be compared.

To help the researchers understand more about the viewpoints expressed, the Panel shared their thoughts on what could happen at CLOs to create the viewpoints displayed on the grids of each factor. For example, in one of the factors, the cards displaying the statements ‘stigma’ and ‘pain’ were placed on the disagree/left side of the grid, showing that these are negatively impacted upon/not improved by attendance at the CLO for people in this group.

The Panel wondered whether this factor may represent those who suffer with a chronic condition that CLOs are unable to influence. Certain conditions may also be stigmatised in society, and although CLOs can help to change individual feelings of stigma, they would not usually be able to change wider public perceptions. It was also suggested that this could be a view associated with male participants, as they face greater stigma around mental health, so this might affect how they interact with their CLO and others attending.

Having access to these insights from Panel members is key in aiding the researchers to understand more about the ‘how’ and ‘for whom’ questions that the project is seeking to answer in relation to the impact CLOs have on individual health and wellbeing.  The suggestions from the LEP led the researchers to examine the data in different ways, to explore their ideas.

Impact on the research

Bringing data to life in this way by working with those with lived experience of the research topic is beneficial in deepening understandings of quantitative data. It can help researchers ensure that their interpretations of the data are aligned with the realities faced by individuals and communities, which is important to avoid misrepresentation, and in producing high quality and relevant research findings that are drawn from a wider variety of sources.

Moreover, by collaboratively identifying factors that contribute to wellbeing, the CHA project will be able to produce more valuable recommendations to CLOs on how to tailor their activities for maximum benefit to their communities. This involvement also fosters a sense of ownership and validation for community members, seeing their experiences better reflected in the research.

The CommonHealth Assets research project is due to end in March 2025, and despite having hosted all in-person LEP meetings, we aim to seek further opportunities for the Panel to be involved in the final stages of the project as further findings emerge.

To stay informed on the next steps of the CHA project and LEP, keep an eye on the GCPH and CommonHealth Assets websites as further learning from the past three years is shared.