Getting the evidence out there
One of the things researchers, clinicians and I think about longitudinal research, and patients find frustrating, is the wait for results. This has particularly been the case for BRIGHTLIGHT, especially as we had to extend recruitment for a further 18 months. We are now entering an interesting and exciting phase of the study because we can start showing if, how and where specialist cancer services for young people add value.
The truth be told, this has not been an easy journey. We’ve had challenges recruiting to the study Cohort and challenges with NHS regulations; however we are now entering a new but exciting task – understanding what all the results mean.
We recently published some pivotal results about the competencies of staff delivering TYA cancer care [click here to read the paper] and of course, we did show some results earlier in the year with young people leading on interpreting and presenting our early findings in the performance of There is a Light: BRIGHTLIGHT. You can read more about this in our earlier website blog and our blog for the NIHR. The performance was viewed by approximately 650 members of the public and healthcare professionals. If you missed it, or want to catch it again, it will play an additional three performances in November at the National Cancer Research Institute Annual Conference in Liverpool, the Chrysalis Festival in Edinburgh and Saturday afternoon at FYSOT.
There is a Light has been a fantastic opportunity to showcase our results to the public and it is also essential for us to get the results back to clinicians who deliver care – and who will hopefully implement changes based on what we have found out.
In July, most of the team made our public debut as ‘BRIGHTLIGHT’ at the joint BRIGHTLIGHT-TYAC conference in Leeds.
The theme of the conference was ‘Generating evidence for TYA cancer care: using evidence to shape practice’ and what better way to start the conference with the excellent Dr Bob Philips running a workshop on evidence-based practice. I don’t think I will ever look at statistics again without thinking about the cat in the sink (you needed to be there). The keynote speaker on day two, Professor Frances Griffiths from Warwick Medical School, presented the LYNC study, an evidence-based approach to communicating with young people. So far the LYNC study has shown that digital communication allows timely access to clinicians for young people, which may empower them to manage their own conditions. They have made available a range of resources to help patients and professionals, these can be found via this LYNC.
Day 2 included showcase short oral presentations, selected from abstracts submitted earlier in the year. It was fantastic to see the scope and quality of the work presented. All eight speakers were engaging and presented studies representing the various aspect of TYA cancer care. These will be available on the TYAC website very soon; well worth becoming a member to be able to access them. A big congratulation to the University Hospitals Bristol NHS Foundation Trust as they scored a double whammy on the Lisa Thaxter prizes: Hannah Pring won the best oral presentation and Jamie Cargill the best poster.
What about BRIGHTLIGHT? We presented in the afternoon on both days. Day 1 was Chaired by, Dan Stark and Lara Veitch, our young person representative from the National Cancer Research Institute Teenage, Young Adult and Germ Cell Clinical Studies Group. Jeremy, Lorna and Rachel reminded everyone where BRIGHTLIGHT came from and what it is; how young people have been involved in every stage of the process and what we’ve been doing to address some of the challenges in involving young people in research. This was followed by long awaited RESULTS. Faith presented our work on professional competencies, highlighting the need to have the ‘right people to do the job’. This was followed by Charlotte who elegantly presented our results from our first companion study – When Cure is not Likely, highlighting the heightened age-related specificities of end of life care.
Day 2 was chaired by Louise accompanied by our YAP member Maria Onasanya. Sarah opened the afternoon with a presentation of the first instalment of findings from the BRIGHTLIGHT case study: a model illustrating the core components of age-appropriate care. This was followed by Richard with a presentation detailing how we are calculating levels of care: when receiving all care in a PTC, some care in a PTC, no care in a PTC. The conference finale included Ana and Jeremy’s presentations on carer and young people’s outcomes and experience of care.
I’m not giving any spoilers – it’s too soon for us to make any definitive conclusions. However, we would like to thank the audience for their candid feedback and critique of what we presented. This has given us much to think about.
Further emerging results will be presented at the NCRI conference in November and 2nd Global AYA Congress in December, and then we are looking forward to hosting the BRIGHTLIGHT Roadshow in 2018. Details of this to follow…