New ways to listen: What creative health data means for our community

I am the founder and Director of Music4Wellbeing, a community charity that works across Medway and Kent to help people feel and live better through music and creativity. We work with adults of all ages, but much of our work focuses on older people, including carers and those livingwith long-term health conditions like dementia, Parkinson’s and respiratory issues. 

Our community is diverse. Some people join us because they are managing complex health conditions, while others are coping with loneliness, bereavement, family care and other challenges that can come with ageing. What brings them together is a desire to feel better, connect and create with one another, and positively contribute to their community. 

One of the greatest rewards of this work is seeing people transform – whether through finding their voice, gaining confidence or taking risks – and ultimately flourish regardless of the situations they are in.  

Why we applied for a Take the Lead grant 

Our little team of three (two part-time staff and me, a volunteer) applied for a Take the Lead grant because we are interested in exploring a question that had emerged repeatedly through our work: 

How can older people explore and use data to better understand and manage their own health and wellbeing? 

With a background in research myself and as a community leader, I am fascinated by the relationship between creativity, health and evidence. We know that health data is important, but many people find health information overwhelming, inaccessible or disconnected from their daily lives. 

We wanted to explore whether creative activities could help older people generate their own health data in ways that felt meaningful, enjoyable and empowering. The Take the Lead programme offered a wonderful opportunity to test this idea while working directly with our community and much-appreciated partners., which are mentioned below.  

Data in Harmony and Hail Medway!  

Our two Take the Lead projects, Data in Harmony and Hail Medway! brought together older people from a range of community groups across Medway, including Medway Neurological Network and Medway Skylarks, COPD Singalongs, local Parkinson’s UK groups, Rochester Dementia Memory Café and the former Kent Rivers Age UK.  Medway Dementia Café and Age UK Kent Rivers. Together we explored different ways of generating health data through creative activities.   

In Data in Harmony, participants took part in wellbeing journaling, storytelling, songwriting, arts-based activities and community events. 

One of the highlights was a collaborative songwriting project that resulted in a song called Skylarks on the Wing. The lyrics reflected participants’ experiences of friendship, confidence, belonging, physical activity and emotional wellbeing.  

Alongside this, participants kept wellbeing journals, documenting everyday experiences that influenced their health, from hospital appointments and exercise sessions to family visits and singing groups.  

Following the success of Data in Harmony, we were inspired to extend the work through a second project,  Hail Medway!, jointly funded by the Take the Lead grant and Medway Voluntary Action’s Social Impact Gateway initiative. This project focused on storytelling and an innovative arts-based evaluation method called ViewFinder, which enabled people to express their views about health and wellbeing through creative activities rather than conventional questionnaires. 

Data supporting the health and wellbeing of our Music4Wellbeing community 

One of the most important reminders for me is that data is everywhere. When people hear the word ‘data’, they often think of questionnaires, spreadsheets, statistics or medical records. Those forms of data are important, but they are only part of the picture. 

In our projects, data also came from stories, songs, journals, conversations and creative artwork. Participants generated rich information about what helps them stay well, what challenges they face and what gives their lives meaning. 

Across both projects, the same themes emerged repeatedly. Social connection, creativity, purpose, belonging and opportunities to contribute were consistently identified as important factors influencing wellbeing. 

For me, this highlights the importance of combining traditional health data with lived experience data.

If we genuinely want to support healthy ageing, we need to understand not only what conditions people have but also what helps or hinders them to thrive. 

What we learnt 

One striking finding was just how consistently group singing emerged as a protective factor for wellbeing. The co-composed song lyrics and the wellbeing journals showed that participants repeatedly linked singing groups with improved mood, motivation, social support and confidence. Regardless of their health condition, singing together appeared to provide a sense of purpose and connection. 

One unexpected outcome was how comfortable participants became with generating and interpreting their own health data. Many defined ‘data’ as something produced by professionals or researchers and, initially, I noticed myself avoiding using the word ‘data’. But as the project evolved, and as participants began to recognise that, quite simply, their own experiences and observations were valuable sources of ‘data’, all fell into place.   

We were also struck by how much rich information arose when people were given opportunities to express themselves creatively. A song lyric, a photograph or a painted circle often communicated something that would have been difficult to capture through a standard survey question. 

Would I encourage other communities to apply to Take the Lead? 

Yes! Without question. This is a wonderful symbiotic relationship.  

Community organisations have unique knowledge and relationships that researchers often can’t access on their own. I believe we understand the realities of people’s lives and the challenges they face, and we are often trusted by our wider communities in ways that larger or more distant institutions may not be. The Take the Lead programme provided us not only with funding but also the confidence to explore ideas that might otherwise have remained untested. 

My advice would be to start with the needs, interests and strengths of your community. Don’t feel constrained by traditional ideas of what research or data should look like. It’s simple and it’s everywhere, and with imagination, it can be effectively explored through fun activities. Some of the most valuable insights from our project emerged through activities that initially seemed quite unconventional. 

Advice for data researchers wishing to collaborate with communities like ours? 

Start by listening – often and over time. What communities say is the cornerstone of generating worthwhile knowledge. 

The most successful collaborations recognise that expertise exists in many forms. A researcher can bring methodological and analytical skills, but that knowledge is of no value without having truly listened to and understood lived experiences, practical knowledge and insight into what matters most in the everyday lives of people.   

Building trust takes time and meaningful engagement requires flexibility. Researchers need to be willing to adapt methods, communicate clearly and fundamentally share ownership of the process. 

Our projects demonstrate that when communities are genuinely involved in shaping how data is collected and used, there is meaningful impact.

Most importantly, my belief is, when involved in creatively generating data, participants are more likely to see value in the process and to use it to support their own health and wellbeing. 

Final reflections 

The biggest lesson I will take from these projects is that data becomes most powerful when people recognise themselves within it. 

Through songs, stories, journals and creative activities, participants generated evidence about what supports their wellbeing and healthy ageing. In doing so, they became active collaborators rather than passive recipients of information or research ‘subjects’. 

For me, that is what community-led health data should be about: actively listening to people’s experiences, helping people reflect, strengthening their voices and creating knowledge that can improve theirs and others’ lives. 

Discover more about Music4Wellbeing by checking out our creative infographic, created by Shalom Vic-Jumbo.