QUALITY OF LIFE
Many patients with cancer have questions about quality of life associated with their treatment. However, this data is largely missing. Many treating teams would also like to know more about how patients experience their treatment, but this data is also missing. All of these are potentially addressable by digital health approaches to provide scalable, robust, secure, close-to-patient data-capture and recording systems.
Recent improvements in technology have allowed many cancer centres to offer patients access to their electronic records using a secure online platform, often called a “portal”. These portals often also allow patients to upload data on their quality of life or to answer other questionnaires (e.g., on service quality).
We want to use these portals to capture Patient-Reported Outcome Measures (PROMs) and Patient-Reported Experience Measures (PREMs) in cancer patients starting a new line of treatment.
When undergoing cancer treatment, patients often worry about side effects and the ability to carry on their lives. We want to find out what these worries are and how treatment affects their lives so the quality of cancer care can be improved even more. For the first time, a research project will try and find what those experiences and concerns are (PREMS), and what the effects of treatments are (PROMS), for cancer patients all over England, using modern methods of data collection. Patients will report their own concerns, their own outcomes.
We will be asking people of all colours and races, all ages, men and women, members of religious groups, and whatever their outlook on life, to gift their data to this study. It all matters.
The data will be used to guide individual treatment, and be analysed for the benefit of future patients. We hope that care for cancer patients will become more personalised, and add to quality of life as well as longevity.