Mesothelioma UK launch Your Health Companion to put ‘patient voice’ at the heart of cancer research to improve treatment and outcomes
Mesothelioma UK have joined forces with DaSH Global, a leading real-world evidence company specialising in Health Care, to develop Your Health Companion.
The free digital diary has been specifically developed for people living with mesothelioma, to enable them to record how they are feeling, their quality of life and symptoms, rate the experience of the care they receive and keep track of expenses connected with their care. By enabling patients to keep an accurate record in one place, across time, they are able to monitor changes in their health and able to show their information to healthcare professionals, so together they can better understand how to manage the illness.
Whilst, the first and most immediate benefit of the health companion is to help patients manage their cancer day-to-day. The second, and wider reason, is that it adds the ‘patient voice’ to existing national cancer data collection methods to help drive up standards and improve treatments
In the UK, over 2,700 per year are diagnosed with mesothelioma, with exposure to asbestos responsible for up to 9 out of 10 mesothelioma cases. Advances in research mean new treatments are being developed, but more needs to be done to understand the true impact of the illness on the people living with the condition day-to-day. Across the UK, existing cancer registries routinely collect information about every single cancer patient and use it to help doctors and healthcare teams decide on the most effective treatment. However, what is lacking is the ‘patient voice’: what it is really like living with the disease. NICE (the National Institute for Healthcare Excellence) bemoan the fact that there is insufficient routine evidence to determine if treatments really do provide the Quality of Life, as well as Length of Life improvements they claim when used in a real-world setting.
The Mesothelioma UK Research Centre at The University of Sheffield, funded by the charity Mesothelioma UK, that conducts research to benefit those people diagnosed with mesothelioma, is one of the first research centres to use data collected by Your Health Companion to help gain valuable patient perspective.
Liz Darlison, MBE EN RN BSc MSC, Head of Services Mesothelioma UK “This is a game-changer. For a long-time treatments have been rolled out without any evidence that they are actually improving quality of life. Our nurses have been looking for something that gives them real insight into the impact of the disease on the patient. This information is vital, as will help nurses provide targeted support and assistance to help improve the lives of people living with cancer.”
The app is being adopted and rolled out across England, Scotland and Wales and patients response and take-up has been extremely positive.