What is your current role and what do you enjoy about it?
I work as one of two Editorial Officers in the Patient Information team at Bloodwise, the blood cancer research charity. Between us, we write, edit and regularly update 17 booklets, 15 fact sheets and more than 120 pages of web content – so there’s never a dull moment!
There are lots of things I enjoy about the work that I do – and where I do it. Before I moved to Bloodwise, I’d spent the previous two and a half years working for a communications agency. No two days were the same and I worked with some brilliantly talented people – but I was missing a sense of purpose. The work I now do at Bloodwise gives me that in bucket loads.
What is the key area you are working on at the moment?
I’m currently working on some new information for people on ‘watch and wait’ – those who have been diagnosed with certain chronic blood cancers and don’t need treatment straight away.
Watch and wait is a safe and effective way of monitoring these people with regular check-ups and blood tests. The approach saves treatment for a time when it will be most effective and prevents people from being exposed to treatment side effects until that time.
But this doesn’t diminish the fact that being diagnosed with cancer, and then being told that your doctors aren’t going to take any action to treat you (at least, not in the immediate future), is not only very distressing but also incredibly confusing and isolating.
So, last year we developed a suite of online resources to support people on watch and wait. The challenge was to produce information that explains quite a complicated concept, while also reassuring and empowering readers. We’re now planning phase two of the project – which will build on the information we have already produced and focus more on emotional support.
What’s your biggest health information challenge?
I think one of our biggest challenges is reach. Historically, our Information and Support team has done a great job engaging with healthcare professionals – the fact that 80% of haematology units in the UK now hand out Bloodwise patient information booklets is a huge testament to that work. The next step is finding ways to engage with the remaining 20%, so that we can reach more people affected by blood cancer.
What’s the best bit about working in health information?
As much as I love righting grammatical wrongs, the bit I love most about my job is speaking to people affected by blood cancer – whether that’s in the form of focus groups, one-to-one interviews or at events. Last year, as part of the first phase of our watch and wait project, I sat down with three of our volunteers (who we call ‘Bloodwise Ambassadors’) to talk about their experiences. They are some of the most remarkable people I’ve ever met.
What do you find useful about being a PIF member?
When I joined Bloodwise, I knew very little about the world of health information (my previous editorial experience centred more on commercial communications and marketing). Within a week of joining the Patient Information team, my then manager sent me a link to the PIF website and suggested that I sign-up.
I attended my first PIF event last year, and was really impressed with how open everyone was to sharing their successes and, more importantly, the mistakes they’d made (and the lessons learned) along the way.
What top tip do you have to share on health information?
Even with all the editorial experience and clinical input in the world, you can’t produce high-quality health information without input from people who have lived experience of the health condition that you’re writing about. They are the true experts.
You can view Bloodwise booklets and fact sheets here.