‘Inspiring Stories’ with Caroline Tiza

Community Engagement Manager, Research

Patient and Public Involvement and Engagement (PPIE) Team, University Hospital Southampton NHS ​​​​​​​

This is part of the Engaged Medicine ‘Inspiring Stories’ blog series. The blogs explore the stories behind outreach and patient-public engagement activities of staff and students from the University of Southampton’s Faculty of Medicine. 

My journey into community engagement started way back in the mid-1990s in my home country Zambia. As part of my undergraduate course, I got involved in community development and engagement activities on a project known as Giving Voice to the Marginalised, working withpeople with physical disabilities, sex workers and street childrenThis project used Participatory Performance Practices (PPP) and Participatory Rural Appraisal (PRA) as tools to engage and address social issues for these marginalised, disadvantaged, and underrepresented groups. This is also the beginning of my journey into advocacy work, but I will save that for another blog.

In my final year at the University of Zambia, I was lucky enough to be awarded a scholarship to study for a master’s degree in Theatre for Development at the then King Alfred’s College, here in the UK. Theatre for Development is based on the principals of democracy, participation, and sustainability. It recognises that people are experts of their own lives and have the capacity, with the right help, to effect positive changes in their own lives and their communities. Theatre for Development is made up of various approaches including PPP and PRA but my study had a special focus on Participatory Learning and Action (PLA).

PLA is an approach for learning about and engaging with communities, by using a toolkit of participatory and visual methods for a process of active participation, collective analysis, and learning. It enables ordinary people to play an active part in issues that affect their lives and their voices to shape outcomes. It is effective for hearing unheard voices. PLA can, therefore, be used at every stage of the research cycle.

I have combined my training in education and Theatre for Development together with skills I have picked up over my varied career such as Person-Centred Planning, Person-Centred and Strength-Based approaches, for instance, as a basis for all my community engagement work.

Over the years, I have seen community engagement and PLA approaches appear in different forms such as Community Engagement and Involvement (CEI), Community Participatory Action Research (CPAR) and Community Based Research (CBR), although, the underlying principles of inclusion and involvement have remained constant. I have also quickly learnt about how some commonly used terms in generic community engagement can mean different things in the health research world, for example participantfocus group and even involvement and engagement

My current role broadly focuses on increasing diverse and inclusive involvement in health and care research. I have brought my experience, knowledge and skills of working with socially marginalised, disadvantaged, and underserved communities. I work closely with the Voluntary, Community and Social Enterprises (VCSE) sector to engage with patients and the public. VCSEs are key strategic partners for reaching wider and diverse communities and can help ensure that the voices of those with lived experiences are heard. VCSEs know their communities and are key facilitators in co-production. They are great connectors, champions, and bridge builders.

Before this role, I had not heard of PPIE despite working with partners across the NHS and local universities over many years. Lack of awareness of health and care research has been identified by various sources as one of the major barriers to involvement. A good percentage of the public are not aware of what health research is, never having taken part in research before. Many do not know that the NHS is active in research. In this light, I am committed to raising awareness. Providing individuals and communities with the information, help develop their confidence, knowledge, and ability to get involved. The National Institute for Health and Care Research (NIHR) has identified that certain communities are underserved by research and/or face barriers to involvement in research https://www.nihr.ac.uk/documents/improving-inclusion-of-under-served-groups-in-clinical-research-guidance-from-include-project/25435.

Good research happens when people of different ages and backgrounds take part. Diverse and inclusive involvement means more meaningful research and better outcomes for all. The public, bring an “expert” insight, or lived experience which helps to inform and shape treatments and services. NIHR states that good research happens when it is “being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”.

Engagement events are brilliant for raising awareness and building relationships with all stakeholders. Going where people are helps increase involvement. The impact of my work so far has been that more diverse communities are hearing about research, have got involved in my sessions on demystifying health and care research and are signing up to get involved in research. I have also been listening to community voices on some of the barriers to involvement and how they would like to be involved. I was part of the Raising Voices in Research project https://actionhampshire.org.uk/about-us/our-projects/raising-voices-in-research/

I received this feedback recently:

“Caroline this was really good community engagement, you did a fantastic job, to see a welcoming face, smiling and so well engaged with the community. Please continue engagement with the community it really helps to make the strong links with people. Well done, keep it up”

And a little brag: In 2020, I was recognised by the Sheriff of Southampton as an inspirational woman and as someone who has made a real contribution to the city and communities of Southampton during that year’s International Women’s Day celebrations at Southampton City Council. ​​​​​​​

Stay Connected! To find out more about the ‘Inspiring Stories’ series, Faculty of Medicine educational programmes and research, or to get involved use the links below or contact Dr Lucy Green. 

University staff or students click here for the Engaged Medicine SharePoint.

‘Inspiring Stories’ with Caroline Tiza

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