Funding for cancer research has increased by more than 60 per cent over the past 10 years, but how much is spent investigating new approaches to improving quality of life for those living with the disease? The answer is not enough.
According to Cancer Research UK, cancer survival rates in the UK have doubled in the last 40 years; half of people diagnosed with cancer now survive their disease for at least five years and almost three-quarters of children are now cured of their disease, compared with around one quarter in the late 1960s.
What is perhaps less well reported is that there are also thousands of people every year who are living with cancer long term, struggling to maintain their standard of living. And, while treatment has advanced significantly since the 1960s, palliative care has not. Contemporary palliative health care needs to be multidimensional; that is knowledge-based, collaborative and holistic. When you consider the additional benefits that today’s digital environment provides – both in terms of technical innovation and creative thinking – the opportunity for innovation is almost boundless.
To get an idea of what is possible take a look at the highly detailed imaginary creature pictured above. It was sculpted by a young man with a progressive condition, using eye movement alone through an Eye Gaze Sculpture system developed by a remarkable organisation called SpecialEffect When I first heard about this extraordinary new technology I assumed it would soon be widely available as a creative therapy tool. In reality SpecialEffect are struggling to find the funds to further their research and make the system more widely accessible. Unfortunately, when it comes to the research and development of technology enabled solutions, this is far from unusual.
If we consider cancer, one of the better funded healthcare research sectors, research and treatment has to date largely (and perhaps unsurprisingly) focused on attempts to cure at every stage of the disease. There is however growing recognition of the need for supportive treatment, given to improve the quality of life, both for those people going through treatment and those for whom a cure is no longer an option.
But why has this area been so under researched? According to the National Cancer Research Institute (NCRI) funding for cancer research has increased by 62 per cent in the 10 years up to 2011 and now amounts to over £521 million a year. During this period a consistent 60 per cent of funding has been spent on research that could apply to all types of cancer, with the remaining 40 per cent focused on research into particular cancers.
Here’s what Shirley Harrison, lay member of the NCRI Board and a breast cancer patient, had to say about the NCRI report: “The strength in funding of research in biology and treatment is encouraging. However, we need to ensure that other areas that are important to patients such as prevention and survivorship research are also appropriately addressed.”
The Art of Survival
My organisation Creative Skills For Life (CSL) is committed to survivorship, by enabling young people living with cancer and other life threatening conditions to explore their creative potential, connect with other people and collaborate on arts based projects. To this end we aim to promote the development of interactive experiences that engage users on a practical, psychological and emotional level, and provide academic research with data, insight and progressive refinement.
To make sure we get it right, we’ve been sounding out members of this target group. Here’s what one of our young ambassadors Greg had to say: “In a lifestyle where a lot of physical control has to be surrendered; the feeling of having something you can ‘be yourself’ with – truly yourself, is a triumphant one. Technology and social media gives every disabled person the chance to dabble in the arts. To paint, to compose, to write – and most of all, to say something that’s never been said before. All that’s needed is an over-active imagination, the right inspiration and an audience adventurous enough to go along for the ride.”
CSL is a collaborative venture, during this ongoing journey of discovery I have had the pleasure of getting to know people who are investing their own time and expertise to try and shake things up. One of these is Dr Mick Donegan, founder and CEO of SpecialEffect, a UK based charity, which uses video games and technology to enhance the quality of life for people with serious disabilities and the organisation responsible for the aforementioned EyeSculpture, which they designed for a young man named Alex who has Spinal Muscular Atrophy.
According to Dr Donegan “Alex could no longer control his computer – using a keyboard and mouse had become increasingly difficult. So we created a system that enabled Alex to use his eyes to control his mouse and play a wide range of videogames. We even found a way to use ‘gaze control’ to sculpt a creature from his own imagination and print it out using a 3D printer without needing to lift a finger. It’s amazing and beautiful yes, but it’s almost unbelievable that we’ve not been able to further develop eye gaze and create more creative tools for young people living with chronic conditions.”
At CSL we believe that creative technologies, interactive social gaming and networking can play a vital role in shaping a users’ sense of the world and themselves. As young people immerse themselves in interactive media, they articulate ideas and feelings, share beliefs and values, and challenge the preconceived limitations in others. Such a community naturally promotes collaboration and mentoring, leading to a sense of empowerment and serving as a catalyst for healing and personal development.
According to Dr Thomas Barber, CSL’s Honorary Research Lead, at University Hospitals Coventry and Warwickshire “The utilisation of creativity in health and disease is an under researched, and perhaps under-appreciated field that has huge potential. Unfortunately, our traditional view of medicine is based largely on a therapy (often pharmacological in the form of a pill, surgical intervention or some other form like radiotherapy for example) being administered to the patient by a healthcare professional. This paternalistic view of medicine needs to change and adapt to align itself with advances in modern day technology, so that opportunities to develop and deliver healthcare in novel and exciting ways are realised.”
In summary, I would like to reiterate what NCRI Board’s Shirley Harrison, says above “The strength in funding of research in biology and treatment is encouraging”. But surely there should be more funding for researching palliative care, designed to benefit people living with cancer and other life threatening conditions!
What do you think? Please share your views via firstname.lastname@example.org
And if you’d like to learn more about the work of Creative Skills For Life and SpecialEffect use this link, where you can also find out about joining SpecialEffect’s UK-wide 24-hour games marathon.