4 Apr 2022

As in many other areas of life, being involved or organising involvement in health and social care research included new challenges. Two years later, while many are keen to return to ‘normal’, coronavirus infection remains a serious risk to a sizeable section of the population, while other events have drawn attention to major public health concerns linked with inequalities.

Two years ago, priorities included sharing knowledge on how to involve remotely and involving patient, service user, carer and public contributors in pandemic-related research. It became swiftly clear that the spread of Covid, while causing widespread hardship and loss, was hitting some communities especially badly – and that developing and sharing knowledge on what was happening was much-needed.

Soaring deaths among people who were frail older or otherwise disabled, black and minority ethnic and/or disabled drew attention to existing inequalities. Frontline and factory workers found themselves at heightened risk, while women found it harder to escape domestic abuse and mental health issues rose among young lesbian, gay, bisexual and transgender people. Accessing appropriate services became even harder for some.

While there have been impressive responses in many communities and networks, many people from varied backgrounds have suffered isolation or grief or reduced wellbeing. Yet the burden has tended to be even heavier for those already facing disadvantage and discrimination. Research carried out in partnership with service users, carers and the public has sometimes shed light on the problems as well as ways to improve specific aspects of health and care.

That the UK is damagingly unequal has been underlined by recent events. Soaring prices, after years of austerity, are pushing more people in south London and beyond into severe poverty. Evidence of racism in the NHS towards staff and patients, in policing and education, and the human cost, have hit the headlines. Attention has been drawn to a ‘hostile environment’ for various minorities.

And again, the hazards of professionals being so caught up in meeting targets that the views and wellbeing of those needing services are overlooked have been highlighted. It is important to examine systemic factors and institutional cultures which make it harder to listen attentively and act on what is heard, in research and quality improvement drives as well as service delivery.

Strengthening involvement by, and co-production with, diverse people with lived experience poses challenges which go beyond technical ones. Yet it can enable research more fully to address the complex factors which get in the way of better health and care and build links among those who might influence what happens in practice.