The conference got off to a good start for me on Sunday with the first session I attended, which was 'Communicating risk and uncertainty to patients and the media' by David Spiegelhalter. This entertaining session didn't shy away from tackling some tricky issues, such as the fact that many if not most of the UK public health information leaflets are written for people who … , in the main, don't read such leaflets or want to participate in shared decision making. Which means that in practice the leaflets themselves aren't detailed enough for most of the people who do read them for information and so those people have to seek information elsewhere in order to engage in meaningful shared decision making. He gave examples of good and less good ways to communicate risk, absolute and relative risk, and how a small mis-reading or misunderstanding can distort the message to farcical levels. His concluding remarks included the need to understand and respect your audience.
This was followed by Lois Standt talking about genomically-inspired treatment of lymphoma. For a non-biologist like me, this was slightly more challenging, but thanks to the VOICE course I did in September 2013 I found I could actually follow what was being said.
That evening the NCRI put on a buffet reception for the bursary holders. This gave us an opportunity to meet and greet each other and the NCRI staff before the conference really got going and it ensured that everyone could see some familiar faces as they moved around the venue and the hotel.
There is a generous bursary system for patients and carers, who are known collectively as Consumers. (Not the greatest term, I know, but it is difficult to find anything else that covers this particular group in this particular setting but which hasn't already been used for another grouping.) Our accommodation is booked at a hotel just across the square from the conference venue, so getting to and fro is quick and easy and anyone who needs to can nip back to the hotel for a brief rest period without difficulty. There are NCRI staff on hand to support all delegates, but they seem to be particularly on the look out for the consumers.
Monday started for me with William Breitbart's plenary lecture on psychiatric aspects of palliative care. This session talked about sustaining meaning as a means of enhancing quality of life and presented the intervention called Meaning Centred Psychotherapy.
After that there were three talks under the heading of "10th Conference celebration talks". In the first of these Mike Richards gave an overview of the development of cancer services. I particularly liked his slide showing a jigsaw of the professionals involved in cancer services. It was striking when he commented that there had been an early failure to believe, and a questioning of the validity of, the statistics showing that UK survival was below that of much of the developed world. As we know, there is still a survival gap and in many tumour groups that gap is not closing as survival generally improves. However, at least we have come out of our denial and know we need to work to close the gap.
He went on to describe the period from 2000 to 2012 as an "age of enlightenment", with political will resulting from the actions of patients and charities. He highlighted the role of the registries and other data sets.
Then it was off to the Dragons' Den. This initiative grew out of a session run by Independent Cancer Patients' Voice at a different event a few years ago. The idea is that researchers can come along and meet with some patients and carers who are experienced with input into cancer research in order to get feedback and advice. The researchers on the table at which I sat were requesting input around communication and had some wording on which they wished to consult. It was a good discussion and I think our researchers went away with some useful suggestions and comments.
I then took some time out of the main programme to do a video interview and to look at the exhibition and the first set of posters. After that it was a debate on the Cancer Drugs Fund, which will have to wait for the next blog posting. I'll wrap up this one with a quote from William Breitbart's lecture:
"Hope is the possibility of meaning in an uncertain future."