Today we are unveiling our new, online expert panel: the PCUK 250.
What is the PCUK 250?
The PCUK 250 is made up of a mix of leaders in their fields from across the UK: clinicians, researchers, nurses and others who directly treat the disease; those who work in the wider health or cancer arena; as well as pancreatic cancer patients and carers.
Why have you set up the PCUK 250?
We wanted to bring together a panel of experts that could help us track key developments in the field of pancreatic cancer, monitor progress and highlight areas where further input is needed to drive improvements in pancreatic cancer. Overall we wanted to find out on a regular basis how optimistic experts in the field are feeling that progress is being made.
This knowledge and the expertise of our panel members will also help us plan what more we can do to help pancreatic cancer patients, as well as identify areas we need to campaign on to get others to make changes and improvements, for instance the Government and the NHS.
What has the first survey of the panel found out?
You can download a full copy of the first PCUK 250 survey results at the bottom of the page, but some of the key findings from our first PCUK 250 survey include:
- 82% of panel members thought research funding is still too limited for significant short-term advances.
- 71% agreed there was still too little awareness amongst policy-makers about the low level of pancreatic cancer survival rates.
- However, despite perceived current low levels of funding and awareness, more than nine out of ten thought there would be improvements in research funding, research breakthroughs and new or better treatments for patients over the next five years.
- Eight out of ten thought there would be advances in early diagnosis and survival within the next five years.
- Whilst 47% of panel members thought it likely new, tolerable, effective chemotherapy drugs would be licensed for use in the UK in the next five years, only 23% thought they would also be made available to patients on the NHS.
That last point is particularly worrying and the PCUK 250 view is heavily linked to the decision to remove Abraxane from England’s Cancer Drugs Fund (CDF) last year and the NICE decision not to approve Abraxane for use on the NHS in England. We will be campaigning hard over the coming year to ensure that more new drugs and other treatments will be made available to pancreatic cancer patients on the NHS in the future.
How optimistic do the PCUK 250 feel about advances being made in tackling the disease?
When reading the full report you will see that not only did we ask for panel members’ views about key issues, we also asked them how they felt about those issues. Specifically, how optimistic did they feel about advances being made in the areas of pancreatic cancer awareness, diagnosis, research, treatment and care, compared to 12 months ago? We asked them to rate that optimism on a scale, where one was much more optimistic and 10 was much more pessimistic. So, the lower the score the more optimistic they were.
The most optimism was shown for research breakthroughs, with a score of 4.5. Least optimism was shown about advances being made in new treatments and care for patients, with a score of 5. Again, this latter score seems to be linked to the decision to remove Abraxane from the Cancer Drugs Fund. Overall, though, our panel members were slightly more optimistic than pessimistic about all the areas we asked them about.
We can use these results as a baseline to create an index which we can track in future years. This will become the PCUK 250 ‘Optimism Index’, allowing us to see whether experts in the field are becoming more, or less, optimistic about issues such as more research funding being put into pancreatic cancer, or about survival rates.
Why does measuring optimism matter?
Often in our work we come across the point of view that because there has been hardly any change in survival rates or treatments for pancreatic cancer in the past 40 years, nothing can ever change. It is almost a case of ‘what is the point.’ Pessimism about a patient’s chances of survival; negativity about progress ever being made in terms of new treatments; or defeatism that a significant research breakthrough will ever appear on the horizon. Sometimes, for instance, we hear that negativity - this nihilism - prevents people wanting to invest in areas like pancreatic cancer research: why put money into an area where so few advances are likely? We want to beat that Nihilistic attitude and encourage people to invest in new research and treatments, and so being able to show that there is optimism from experts in the field is important. We are delighted that the PCUK 250 survey results show that, on the whole, there is optimism that progress is being made in tackling pancreatic cancer.
Being able to track whether that optimism is increasing or decreasing is also important. It will help us to track whether policy changes, and research funding, Government and NHS actions, are going in the right direction or not. And we will be able to campaign more appropriately and effectively because of that in future.
Pancreatic Cancer UK would like to thank all of our panel members for taking part giving us their valuable time, and sharing their knowledge, opinions and experience with us.
We hope you will also find the PCUK250 results informative and helpful.