Marcus Longley and Lee Waters outline the main issues resulting from the IWA’s ‘Let’s talk cancer’ project.
Cancer is a disease that has touched most families. The projections are that incidences of cancer are on the rise and that presents huge challenges for the NHS, and for policy makers.
The number of cancer cases in Wales rose from 16,921 in 2004, to 19,026 in 2013. Alongside this personal trauma is a system trauma – the amount of money available to spend on healthcare in Wales is declining. The Institute of Fiscal Studies have demonstrated that the Welsh health budget faced a cut of 8.6% between 2010 and 2014, and the era of austerity is far from over.
Is it going to be possible to improve the way we deal with cancer whilst coping with rising levels of the disease and diminishing resources?
There are numerous experts pondering this dilemma but we decided this project should seek to explore the untapped expertise of the people with first hand experience – cancer patients and their families.
Based on the IWA’s experience of applying crowdsourcing principles to the debate around the future of the UK with our Constitutional Convention project earlier this year, we were confident that the ‘wisdom of the crowd’ could bring useful insights to the debate around cancer provision.
We partnered with Tenovus Cancer Care and the Jane Hodge Foundation to design a 6-week long conversation to put the principles of ‘co-production’ into practice. In line with the Health Minister, Mark Drakeford’s new philosophy of ‘Prudent Healthcare’, our project sought to give the patient a voice in redesigning public services.
We assembled a panel of practitioners and academic experts to provide advice and guidance on the development of the crowdsourced ideas in order to create policy recommendations that are practical. We also partnered with a diverse range of stakeholders throughout the project to try and ensure both wide engagement and expert advice. The breadth and range of skills and expertise offered by the panel and partners on the issues raised by the ‘crowd’ led to the development of our 6 final recommendations which are presented in this report.
What is striking about the final recommendations is that they are not new or groundbreaking, and certainly are not wildly expensive or unattainable. We anticipated that the discussion would reflect the political and media debate around cancer care and focus primarily on the availability of new drugs. Whilst this did arise it was at most a sub-theme and did not ultimately win enough popular support amongst ‘the crowd’ to be shortlisted. The ideas that resonated instead were related to improving the patient experience and communications with patients and their families.
The ideas that originated from patients and their families are very familiar ones. Indeed, they are issues that have been raised time and time again by different groups across the range of NHS services, but clearly the NHS hasn’t sufficiently reacted to problems that people have raised in the past. Why?
Analysts have come up with the idea of double loop learning to explain how complex organisations learn, or fail to learn, to change effectively. When applied to the NHS and the issues raised in our project it suggests that solutions to well known problems have been devised without taking into account the organisational culture and game-playing. By basing proposals for change on incomplete and distorted feedback the underlying problems are not addressed, and the problems soon reassert themselves. Proposals to effectively embed change need to take this into account and build in ‘double loop’ learning to anticipate the complex challenges.
Understanding these issues could provide the foundation for the NHS in Wales to build a service in which the patient feels valued, and is finally able to address patient concerns raised around receiving specific, timely and accessible information about patient contact with the health service.
Health care is about cutting edge technology and brilliant science; but it is also about getting the simple things right, and remembering that every patient is also a person. While addressing our recommendations in this report will go some way in solving the issues our participants face, we also want this report to act as a call for NHS Wales to look at systemically putting the patient experience at the forefront of health care.