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Involving and engaging our eclectic community

24 June 2016

The Bone Cancer Research Trust has turned 10. That’s 10 years fighting primary bone cancer – a rare and brutal disease that had previously received very little funding, research or general awareness. Now a decade on, we have been instrumental in funding research and improving the primary bone cancer journey for patients and their families.

It was clear that a celebration was in order, but we also knew it was an important time to take stock and think about the coming decade. How better to do it than getting our passionate community together under one roof? 

Marking 10 years of progress

Over the last 10 years, the charity’s annual conference has been a good opportunity to update our supporters on our research programme and enable primary bone cancer patients to hear from others who have gone through similar experiences, as well as healthcare professionals. 

For our 10th year, we wanted to build on years of successfully bringing people together while also trying a new, more interactive approach. Most of all, we wanted patients, families, friends, researchers, healthcare professionals, fundraisers, donors, volunteers and supporters to all feel engaged and part of the day. 

Engaging our community through a new approach 

Instead of a traditional conference, we set about designing an interactive, informal and creative event at The Tetley, a contemporary arts venue in Leeds. We wanted to use the event to share news of important projects, to tell and share stories in new and innovative ways, and to involve our community in plans for the future.

A highlight of the day was ‘Strictly Research’ – an interactive session that allowed the audience to hear directly from researchers as they pitched their project ideas live to a panel of expert judges. Audience members were invited to ask questions and ultimately to vote for their favourite project, which was then awarded with additional funding

We knew from previous conferences that it could be difficult for people to find the time to speak in a more informal and private setting. We set up round table talks on a range of subjects, including bereavement, and also asked the audience for topic suggestions; a suggested session around ‘mental health’ was particularly well attended. 

Sharing stories 

Primary bone cancer can be a very isolating condition. Patients often express how they find it difficult to meet others going through treatment and beyond. We set up a video lounge to encourage people to record practical tips and advice to share with others. It had an overwhelming response – we’ve gone on to produce three brilliant films from the video content recorded on the day. These are full of useful insights and will be a great resource for people keen to know more.

We also collaborated with Leeds College of Art on a bionic fashion project: a one-night exhibition with artwork and films inspired by people who have experience of primary bone cancer – from functional objects such as rucksacks and scarves to more conceptual pieces. 

After the event, we sent out a survey to all conference delegates to hear what worked and what didn’t. The interactive, informal and creative style was received enthusiastically, particularly by healthcare professionals and families. We managed to pack a huge amount into a short space of time and many people liked being able to choose from a range of activities on offer. Some participants also told us they preferred a more traditional or structured conference approach. With such a diverse community and a wide range of expectations and needs, this is a difficult but important balancing act. Ultimately, the event has given us some invaluable insights and will help us better understand the needs and aspirations of the people in our community as the charity continues to grow. 

Rosie Wilson

communications and stewardship officer, Bone Cancer Research Trust

After roles at Forster Communications and in the Science Museum Press Office, Rosie is now the communications and stewardship officer at the Bone Cancer Research Trust. She is passionate about raising awareness of primary bone cancer in the press and amongst the public, and is keen to represent all the work the charity’s staff, supporters and fundraisers do.