Providing better care by listening to those who need it

National Institute for Health Research (NIHR) researchers Tracey Johns and Sally Burrows, who reach out to hear community voices, explain why they do what they do.

In both the research and practice of health and social care it is our responsibility to enable people to be meaningfully involved in bringing the evidence and making the decisions that impact on their lives. The East of England is a diverse population and even with the best will in the world, it’s often only the few that get to have their say.

• Listen to Tracey Johns on the Louder Than Words podcast

It is easy to overlook communities that do not move in our circles, or speak in our language of choice. And it is easy to ignore people who are isolated or busy caring or working through their own struggles. It is probably the majority who don’t have the time, the knowledge or the inclination, to engage with our websites and articles, or our blogs and Tweets. It’s the minority who can, or even want to engage through a typical meeting whether face to face or online.

Brokering conversations

Our work is about brokering conversations between everyone who has an interest in health and social care, especially those with the greatest needs and vulnerabilities. We listen to people in the streets, in cafes and in community centres. We listen to people through their trusted intermediaries.

Being flexible and open to doing things differently, we have been able to hear from people who do not read or have their own phones, as well as those with social anxieties, and those who’s turbulent lives and heavy responsibilities preclude them from participating in surveys or formal interviews.

Through authentic and creative engagement practices we aim to bring new voices and insights into decision making. This may mean that traditional meetings around a boardroom table aren’t appropriate, and we may instead meet in parks, village halls or art galleries, and share a meal or do a creative activity together to break the ice.

Amplifying voices not usually heard

We try to speak with people on their terms, making an effort to be clear and checking that we understand what people are telling us and that they understand what we are saying too. Many people do not like to ask questions and it is important that everyone involved in research knows its purpose and what might happen next. There is no quick fix. It is about spending time listening, making connections, having conversations, building relationships and developing shared understandings.

We ask people what is important to them and what would make a difference to their health and wellbeing. We work to amplify the voices of those who are not usually heard by decision-makers, so that they can have a real impact on public services. We work to build sustainable partnerships that enable us to work toward long-term solutions together.

There are many innovative projects funded by the NIHR that are seeking to engage with local communities who have been previously under-represented in research, including the NIHR Reaching Out Programme and the NIHR East of England ARC Inclusive Involvement in Research for Practice Led Health and Social Care.

Building meaningful partnerships

Collaborative partnership working with different organisations, communities and people working together for mutual benefit is vital for prioritising, innovating, developing, delivering, and using research that meets the health or social care needs of all citizens and diverse communities.

Engaging with different people and building meaningful and sustainable partnerships takes time. But at the end of the day, evidence that is co-created with the people who need it, leads to better care, more accessible care, and better health outcomes for all. And that’s what our work’s about.

• Read more about Tracey’s work on the Reaching Out website.
• Read more about Sally’s work on the ARC East of England website.