When I discovered last autumn that The Brain Tumour Charity (TBTC) intended to co-create its new strategy, I was intrigued to learn more about what this involved and how I could help. I was diagnosed with a meningioma in 2013 and have been fortunate that it was successfully removed. Some of my experience at the time of diagnosis led me to want to help future sufferers avoid the same issues and I was privileged to be appointed a member of the charity’s Involvement Champion network last year. Having been invited as part of that role to be involved in the strategy development, it gives me a fantastic opportunity to directly provide input to the future direction of the charity.
How will we succeed? By recognising that no one is as smart as everyone and that our collective talents and ideas can produce extraordinary outcomes. To develop the new strategy TBTC intends to seek the views, ideas and input of our community and any wider voices that can help us pursue our objectives. This idea for developing the strategy, called ‘Co-Creation’, is a new and highly ambitious approach to designing the way forward for the charity. It will be both challenging and, hopefully, extremely rewarding and successful. TBTC has never tried this before – indeed, few organisations have – but it has the potential to be a very powerful process creating a strategy which the whole brain tumour community has contributed to, is aligned with and invested in. There may be some bumps along the way as we find what works and what doesn’t but that’s OK as everyone involved in this initiative is learning as we go.
Where are we now? A lot of foundation work has already been completed identifying all the component tasks and activities that are required to produce the strategy, with a detailed project plan being created and working groups for individual tasks being appointed. Suggestions for who we should engage with from outside the charity’s community have been collated and how the governance of the project should be set up has been completed. The charity’s new CEO, Alex Lochrane, is fully engaged and will be part of the project Steering Group.
A number of my fellow Involvement Champions have already started working in tandem with TBTC staff on the discovery phase of the project. During this phase we will be gathering the views of all relevant stakeholders, identifying all there is to know about the brain tumour landscape and beginning to make sense of the complexities involved. These work groups will give me a great opportunity to learn more about the charity and the sector, get to know some of my fellow community members in more depth, and obviously contribute towards the early stages of the strategy development.
I’m looking forward to hearing the views of external stakeholders and seeing how we distil the various requirements and ideas from all the interested parties into a tangible way forward. Working virtually can be challenging and our remit is broad but brain tumours continue to devastate the lives of thousands of people every day, so we know our work is vital. There is still an enormous amount of work to be done to develop a cure, improve treatments, provide support for sufferers and raise awareness. Developing the new strategy is a critical task for the charity to set out a clear path for the next 3-5 years. Viewed as a journey, we know the path may not be straightforward at times but the ‘destination’ will definitely be worth reaching.
Involvement Champion and co-creator of our next 5-year strategy
To find out more about this process, and to contribute your voice and experience, please take a look at our evolving strategy page.