NICE: Shared decision making

Author: Susanna Smith; BSc (Hons) Nursing and MSc Public Health
Kidney Cancer UK Health Professional
I recently had the privilege of attending the NICE (national institute of care excellence) conference, Transforming care in Manchester, being the recipient of a bursary to attend. This conference celebrated 20 years of the organisation ‘Improving health and social care through evidence-based guidance’.
Dr Phil Hammond (doctor, journalist, broadcaster, campaigner, comedian and most famously from ‘Trust me I’m a

doctor’) opened the conference by defining health as; “The freedom to live a life that you value and also value others. Our health is not the absence of disease but about our quality of life and the quality of the relationship we have.”
The conference was split into different sessions all with a specific focus, but a common theme that care and decisions about people’s health need to be shared. Each meeting had a patient/lay member describing their lived experience. In the session, ‘Reliable evidence?:roles of real-world data’, patients evidence and randomised trials in judging treatment effectiveness, Emily Lam who is a lay member (patient) of the NICE technology appraisal committee (this is where decisions are made about licencing medications), talked very openly about her multiple health problems and how
through her life she has not always been given the opportunity or choice to be involved in what happens to her. She has also been frustrated that doctors have not seen her as an individual with multiple illnesses; illnesses that can interact. She suggested that the medical profession need to consider in every decision made about her health that she is not just a specific condition, but a unique person. This has motivated her to be part of the change in how health decisions are made.
Another theme that shone through in the day is the idea of balance and that, yes we need medicine but we also need early diagnosis of disease and screening programmes, intervention in lifestyle factors and a reduction in health and social inequalities.
Genetics was hot topic of the conference and there was much debate about how useful genetics can be. A lot of work is currently being done into cancer susceptibility (screening) using Genomics and also in molecular oncology, including profiling tumours so we can use drugs that target specific pathways.

Overall the conference focused on shared decision making and how important involvement of patients and their family’s are in decisions about health and also in the bigger picture of how our health care system. That decisions need to made not about someone but jointly with that person and if they feel unable to make the best decision to equip them with the information.
As you maybe aware as a patient organisation we want to help to improve outcomes and the quality of life for patients so they can live well with kidney cancer. We do this by being involved in appraisals for new medication for kidney cancer. Currently there are two consultations open and we need your views and experience with these medication. So, if you have been on avelumab with axtinib in the Javelin 100 or 101 clinical trial or pembrolizumab with axtinib on the keynote ( 426 or 427) trials and would like to share your experience which I can include in my submission, please contact me, Susanna Smith, at Kidney Cancer UK by emailing sms@kcuk.org.uk.  All contributions need to be submitted to me by the end of June, 2019.