Closing the care gap in cancer: How patient and public involvement in cancer research can help – a blog by Jim Elliott, HRA Public Involvement Lead

‘I am sure most of us living in the UK are aware cancer can affect anyone. Most of us will know someone who has or has had cancer.

But I bet most people aren’t aware that all of us can play a part in helping to improve cancer research and care, and reduce the inequalities in cancer outcomes both here in the UK and world-wide.

We can do this through patient and public involvement. This is where patients, their family members (or anyone else with an interest) work together with the professionals who plan and carry out cancer research and health and care services.

We offer insights from our experiences of cancer and our health and wellbeing. This can help to ensure research and care are focused on what matters most to the people they intended to help. Making sure the practical aspects of life are considered is vitally important to make it as easy as possible for patients to take part in all types of cancer research studies.

Many different types of studies need the people who take part to continue to do so for many months or even years. If we want people to do this we need to understand what the potential barriers might be and what people need to help them to help others through research. Involving people who understand what it is like to live with cancer can help researchers to make it easier for people to take part in research, and to continue to do so for the whole of the study.

This might mean for example thinking about whether blood tests can be done locally rather than patients having to travel for over an hour to a hospital, or thinking about how often a patient might need to have a face-to-face appointment. It might also be about ensuring there are people others can relate to in information leaflets about particular treatments, by ensuring these leaflets feature people with a range of skin tones and ages.

There is a strong and growing community of cancer patients and their families who get involved in developing and improving cancer research and care in the UK, through the National Cancer Research Institute and the many cancer charities.

However, there are still too many people across our diverse communities who get cancers that could have been diagnosed and treated much earlier, or that could have been prevented altogether.

This reflects the inequalities in cancer care across the world and especially in low and middle-income countries, where there are strong traditions of engaging communities to tackle issues that affect them.

There are opportunities we need to take in the UK, to learn from community engagement in health research across the world, to address the inequalities in cancer outcomes in the UK, highlighted in a recent academic paper ‘What Does ‘Good’ Community and Public Engagement Look Like? Developing Relationships With Community Members in Global Health Research.’

Research, including all types of cancer research, needs input from a more diverse range of people to successfully tackle the inequalities in outcomes for cancer in the UK. These particularly exist in the most socioeconomically deprived areas, in many minority ethnic communities and in other people who are marginalised or disadvantaged in our society.

The HRA is working with partners, including the National Institute for Health Research as part of the Recovery, Resilience and Growth (RRG) of UK clinical research programme. This includes work to make research more diverse and more relevant to the whole of the UK, and to strengthen public, patient and service user involvement in research.

Only by doing this effectively – listening to the perspectives of the people living with cancer and their communities, and being guided by those lived experiences – can we begin to build a better way of doing things and achieve better outcomes in cancer care for all.’