The Importance of Involving Young People in Evaluating Cancer Services

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Written by Rachel Taylor, University London College Hospitals with contribution from Brian Lobel, Producer There is a light: BRIGHTLIGHT

Having cancer when you are 13-24: Rachel Taylor, Senior Research Fellow for BRIGHTLIGHT, and Brian Lobel, workshop facilitator for There is a Light, explain the importance involving young people in evaluating cancer services.

But cancer is an old person's disease, isn’t it??

In fact 2500 young people aged 15 – 24 years old are diagnosed each year in the UK.

While, on the plus side, you have free access to the NHS in the UK, and guidance published in 2005 that states young people need specialist cancer services to make sure you are supported to carry on with your life as ‘normal’ as possible… on the negative side, you have cancer. You. Have. Cancer. As if being a young person wasn’t difficult enough…

Across the UK there are specialist cancer units for young people that provide more than standard treatment https://www.teenagecancertrust.org/about-us/what-we-do/cancer-units. Not only is the decoration in these units more young-person-friendly than a normal hospital ward, but there are specialist professionals available to help you continue with exams, talk to employers, and offer emotional support as well as chemotherapy and treatments. There are also spaces for friends and family to visit. This all sounds good, right? Like a good use of Government health resources, right?

BRIGHTLIGHT is National Institute for Health Research (NIHR) funded research that is asking this question: Do specialist cancer services for teenagers and young adults add value? We want to know if services not only improve young people with cancers Chances of survival but also the Quality of their survival.

BRIGHTLIGHT is unique because of how centrally young people were consulted and engaged in the design, recruitment and content of the study, from the name (young people chose BRIGHTLIGHT as they thought the study represented “Light at the end of the tunnel, and leading the way for other young people who would go on to be diagnosed with cancer”) to the tools by which young people were recruited, with a Young Advisory Panel (YAP) working to get young people involved in the study at the right time, and working to keep patients engaged.  More on the methodology here. Now that BRIGHTLIGHT results are emerging the YAP are helping us develop other research studies http://www.brightlightstudy.com/user-involvement/.

There is a Light: BRIGHTLIGHT, premiering at SICK! Festival on 8 – 10 March 2017, is a collaboration between Contact Young Company (one of the countries leading young people’s company, known for their provocative, youth-led projects on pressing topics) and BRIGHTLIGHT, directed by award-winning artist Adura Onashile. Mirroring BRIGHTLIGHT’s investment in young people as essential leaders in understanding and treating young adult cancer, the CYC/BRIGHTLIGHT collaboration puts young people in charge of how this ground-breaking research is communicated and disseminated to the public, with a cast of 20 including 4 from Manchester with a personal history of cancer.

After five weeks of intensive workshops with BRIGHTLIGHT’s researchers and leads in young people’s cancer care – including Sue Morgan MBE, Teenage Cancer Trust Nurse Consultant from Leeds Teaching Hospitals, David Wright Teenage Cancer Trust Lead Nurse from the Christie, Jeremy Whelan, Professor of Cancer Medicine from University College London Hospitals and YAP Member Maria Onasanya - the cast of 20 is now building their own response to BRIGHTLIGHT. Beyond simply a story about an individuals response to cancer, There is a Light: BRIGHTLIGHT looks critically at how young people’s voices are included/excluded from research, what cancer means to both people affected physically and those surrounding them, and the larger questions of how we should fund medical care which improves not only physical, but emotional and holistic care.

From the perspective of the research team responsible for BRIGHTLIGHT, the unique collaboration with a young person’s company like CYC has been transformative. Confirming the power and intelligence of young people to not only speak up about their own healthcare but also many political, social, economic and spiritual issues as well, the cast’s performed and creative interpretations of research have brought critical and unique insights to our own research. The welcoming attitude of the company to our medical research team has also proven, yet again, that collaboration between researchers, patients, families, policy-makers and the public can be enjoyable and bigger than the sum of its individual parts.

We look forward to seeing you at the SICK! Festival and hope you enjoy There is a Light.

The full SICK! Festival programme can be viewed at http://www.sickfestival.com/whats-on/

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This blog presents independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Grant Reference Number RP-PG-1209-10013). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.