Rachel Taylor: Patients have a right to know the results of research
A theatre project is using a performance to disseminate the results of a research programme into teenage and young adult cancer services.
A theatre project is using a performance to disseminate the results of a research programme into teenage and young adult cancer services
As researchers, how do we publicise our results to change practice? How do we reach those who are unlikely to look at academic journals and conference presentations? Patients have a right to know about studies they have taken part in, or that may influence their care. We want to empower patients to take responsibility for their health, so how can we make them aware of our findings?
I lead a programme of research called BRIGHTLIGHT, which evaluates teenage and young adult cancer services in England. BRIGHLIGHT is unusual because young people are central in the design of the study.
This year we are releasing important results and we wanted to identify ways young people could be involved in dissemination. I asked Wellcome Trust public engagement fellow Brian Lobel for ideas. His solution was to put on a theatre performance based on the results and involving young people and young people with cancer.
There is a Light: BRIGHTLIGHT premiered at the SICK! Festival in March. It is a collaboration between Contact Young Company (one of the country's leading youth theatre companies) and BRIGHTLIGHT, directed by award-winning artist Adura Onashile.
After five weeks of intensive workshops with BRIGHTLIGHT researchers, senior nurses in young people's cancer care, the cast of 20 young people built their own interpretation of BRIGHTLIGHT. It is more than a story about an individual's response to cancer: There is a Light: BRIGHTLIGHT takes a critical look at how young people's voices are included or excluded from research, and what cancer means to those affected. It also considers larger questions about how we should fund services that focus on emotional and holistic care.
Whether this approach will raise public awareness and make people more aware of BRIGHTLIGHT's results is being evaluated, but it could be an enjoyable way for nurses to share and learn about research.
There is a Light: BRIGHTLIGHT is touring England throughout the year and can be seen at the RCN International Research Conference in Oxford on April 6th. More information is available at www.brightlightstudy.com.
About the author
Rachel Taylor, a dual adult-child trained nurse, is a senior research fellow on the Cancer Clinical Trials Unit at University College London Hospitals