Wave 1 data collection is complete!

We have reached an important milestone in the main BRIGHTLIGHT Cohort study (young person’s experience of care), which I have been looking forward to since we started in 2012. Data collection from the survey given to young people between 5 and 7 months after diagnosis (wave 1) was completed over the summer. We have just received the data from our commercial partners Ipsos MORI. We need information from the central NHS computer systems to answer the all-important question: Do specialist services for teenagers and young adults add value? This won’t be available until 2017 but don’t despair, we won’t be letting this information sit in a cupboard gathering cobwebs.

The BRIGHTLIGHT Survey contains a lot of information about young people’s care and treatment, their emotional well-being, social support, and impact of cancer on various aspects of their lives (more detail about the Survey is available here). We can therefore answer a lot of other important unanswered questions. We have started identifying these by asking our Young person’s Advisory Panel (YAP) to tell us what they think is important. The result of this will be announced in the user involvement page of our website shortly.

Next month we will be holding a similar workshop with our Executive Team, a group of academics and clinicians with expertise in cancer, young people’s outcomes and policy. We want to find out what they think are the important unanswered questions. Looking at aspects of care that young people and healthcare professionals think we need to know more about will direct what we do with our wave 1 data.

More details of this will be announced on the website so don’t forget to keep looking for our updates.