PATIENT REPORTED OUTCOMES AND EXPERIENCES MEASURES (PROMS & PREMS)
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.
OPEN TO RECRUITMENT
The aim of CURIE is to develop, deploy and test the effects of collecting Patient-Reported Outcome Measures (PROMs) and Patient-reported Experience Measures (PREMs) digitally in cancer patients starting a new line of treatment. It will allow us to collect this information at scale from multiple service providers across the UK, as well as understand how the results may vary across multiple parameters (i.e., patient groups, geography), and to work out how we feed this data back to patients and their treating hospital teams in a useful and timely fashion.
INDIGO is similar to CURIE, in that the main aim is to collect Patient-Reported Outcome Measures (PROMs) and Patient-reported Experience Measures (PREMs) digitally in cancer patients starting a new line of treatment, except that Indigo is a clinical trial where patients are invited to participate in randomised elements to better study Patient Reported Data collection and digital health interventions.
This project is still being developed by the group and more documents will soon be available on this website.
About to go to ethics
The Indigo Community project is a digital clinical trial that aims to assess the feasibility of mass recruitment to a community cancer survivor study via a large-scale online platform using participant self-enrolment. Our ambition is to develop a firm, pragmatic evidence based on how to collect patient reported data for people living in the community who have previously been treated for cancer.
Trigger aimed to look at side effects in patients with pelvic cancer receiving curative radiotherapy using a simple screening tool, hosted onto an independent secure platform. Patients enrolled at the end of their treatment and entered their name and date of birth, email address, and information about their cancer and treatment end-date. They answered their first questionnaire at enrolment and received a reminder every three months post-treatment to capture the evolution of their side effects. If they experienced significant side effects, they saw a phone number to contact their team, to discuss the symptoms and to decide if an appointment was necessary. Patients could answer the questionnaires as often as they desired, for how long they wished.
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.
THE TRIGGER PROJECT: THE CHALLENGE OF INTRODUCING ELECTRONIC PATIENT-REPORTED OUTCOME MEASURES INTO A RADIOTHERAPY SERVICE
Macnair A, Sharkey A, Le Calvez K, Walters R, Smith L, Nelson A, Staffurth J, Williams M, Bloomfield D, Maher J
THE TRIGGER PROJECT: INTRODUCING ELECTRONIC PATIENT REPORTED OUTCOME MEASURES INTO RADIOTHERAPY SERVICES
Amy Sharkey, Archie MacNair, Kerlann Le Calvez, Robert Walters, Lesley Smith, David Bloomfield, Annmarie Nelson, John Staffurth, Matthew Williams, Jane Maher