The treatment process for lung cancer can have a huge impact on your life, even after treatment has finished. More and more people are surviving cancer as the years go on, and so there are more people than ever before who are lung cancer survivors, trying to resume their interrupted lives after the harrowing experience of diagnosis and the treatment process. I wanted to write about how eHealth, i.e. health technologies that are accessible to patients and their families, can help reduce this interruption.
The government are pushing for care of long-term conditions, like cancer, to be shifted into the home and community settings. But chemotherapy and radiotherapy treatment for lung cancer can be a proverbial Russian roulette of side effects that can vary as treatment progresses. It can therefore be a bit nerve-wracking and exhausting being at home after your latest round of treatment, waiting to see what you’re going to be dealing with THIS time, and wondering whether you can manage it yourself or need to go back to the hospital. This is where eHealth can have a role – it can help you to stay in touch with the people delivering your healthcare, so they can monitor you 24 hours a day, 7 days a week.
There’s a lot to be said for being able to manage your condition and the impact of having treatment for it within the comfort of your own home. Research has shown that being able to receive care within the home environment can provide a familiar and relaxing setting for interacting with healthcare professionals, and the general feeling that the care you receive is more about you – focused on your preferences and needs. But to do that, you need the tech. And this is where it gets a little tricky. The NHS has been a bit behind the tech adoption curve let’s not talk about the National
White Elephant Programme for IT and the government admit this in their Personalised Health and Care 2020 report:
“In 2014 59% of all citizens in the UK have a smartphone and 84% of adults use the internet; however, when asked, only 2% of the population report any digitally enabled transaction with the NHS. […] Irrespective of what path is followed by the publicly funded English health and social care system, these developments [in technology and data-enabled services focused on health and care] will proceed rapidly, driven by the scale of the global opportunity. The care system will be changed as a result and not necessarily in a manner which reflects public policies and values.”
There is actually a huge amount of eHealth stuff out there in the world, things like pain tracking apps, medical information portals, and so on. Some of it has been tested and developed in collaboration with patients and healthcare professionals. Some of it has not. One review of apps for asthma found that less than 20% of the apps reviewed had any kind of statement of confidentiality for patient data. And this is the issue the NHS is up against right now – any eHealth system they adopt needs to follow the fundamental NHS code of practice for confidentiality. Your information, whether on paper or in kilobytes, needs to be protected, and you certainly want it to be protected too.
The University of Surrey’s links with 5G internet development put them in a unique position to explore and collaboratively develop answers to these confidentiality and data protection issues, one step at a time. Researchers now working at the University of Surrey have a long history of research in eHealth, dating back to as early as 1997. They have seen the available technology evolve over time, from laborious manual data upload to electronic databases, to chunky PDAs for patients to use at home, to the smartphones of today. Obsolescence is something on everybody’s minds in this day and age – I was at the Health and Care Innovation Expo in Manchester in early September, and some tech company reps there were saying that they don’t have time for long testing, development and scientific validation periods for eHealth technologies. Yet failing to take into account the needs of patients and professionals during this development process can be really detrimental to the success of an eHealth intervention. Patient involvement should be a huge part of the development process – same with healthcare professional involvement too. This is called ‘co-design’. Without that input, the eHealth system can just fail through lack of use.
People with cancer have been one of the main groups to really benefit from what eHealth has to offer, and the University of Surrey has been heavily involved in the development of eSMART – a system that lets you report your symptoms during and after chemotherapy from home. You fill out a daily questionnaire about what symptoms you’ve been experiencing today, and take your body temperature. Your responses pass through a specially developed processing stream that provides self-management advice in response to your symptoms, and flags up to the nursing team at the hospital if they need to get in touch too. So no more worrying about whether you’re bothering the doctor or not, and you have access to tips to let you manage your symptoms so you can stay at home, knowing you’re being monitored from afar. This has been built out of a set of earlier studies that piloted the whole concept with patients with breast, lung and colorectal cancer, for both chemotherapy and radiotherapy. Yes, ‘with’ patients. Not ‘in’ or ‘for’ patients. The eSMART project has cancer survivors as part of the research team to ensure it really is something fit for purpose, and doesn’t fall foul of the ‘no involvement, no engagement’ trap that has befallen some telehealth projects in the past. In fact, the whole aim of the University’s eHealth endeavours is to collaborate with citizens, companies and engineers to create these kinds of technologies.
And this is where the future of eHealth lies – in collaboration. The rest of the health technology sphere may be rushing ahead with the latest this or that, but behind the scenes the University of Surrey is working away on their own answers to these eHealth questions. And these answers have the patient and healthcare professional involvement, security and the clinical validation to make the difference between boom or bust. Watch this space, because for cancer survivors, there are good things still to come.
Dr Marianne Coleman