Mr. David Galvin, Consultant Urologist and lead of the Irish Prostate Cancer Outcomes Research (IPCOR) project, gave a plenary address at the 2018 General Assembly of the European Prostate Cancer Coalition, Europa Uomo, in Malahide, Dublin on June 9th. In front of an audience of patient advocates from all over Europe, as well as Ireland, he described the approach and methodology of the project, which is collecting data from a variety of sources to generate an outcome-based national tumour registry for prostate cancer in Ireland. It is expected that analysis of the data in the registry will be used to inform patient care and decision making long into the future.
The IPCOR project is supported by the Irish Cancer Society and the Movember Foundation. It is part of a global effort called TruNTH Global Registry, funded by Movember, to improve outcomes and the quality of patient care in prostate cancer. It will generate a registry of useful, high-quality data as part of a clinical research study to evaluate the outcomes of different care paths in prostate cancer, and how satisfied patients are with those outcomes. The ultimate aim is to allow clinicians to stop pursuing expensive treatments that have poor outcomes, or treatments that are unacceptable to patients, in favour of more patient-centred care.
IPCOR brings together every high-level body that deals with cancer in Ireland, and includes data from both public and private hospitals (approximately 50% each). The outcomes for almost 90% of prostate cancer patients in Ireland each year will be included. The panel of experts involved includes oncologists, scientific advisors, patients and project management.
In Ireland, legislation exists that allows the National Cancer Registry (NCRI) to collect data from clinical charts, reviews and other sources without individual consent, so that high numbers of patients can be included in research. Only the NCRI can provide these data to IPCOR. In the case of outcomes research, feedback from the patients themselves, and their partners, is also vital. Obtaining such data requires explicit consent, and responses must be matched with clinical records and carefully de-identified. The high-quality, risk-adjusted data obtained in this way are then used anonymously for research.
Patients are asked to give feedback five times over the course of three years. They can do this via paper-based questionnaires, a website (www.ipcor.ie) or an app, which were made for this project in consultation with patients, to be as user-friendly as possible. In addition, the app allows the researchers to give information to the patients, for example, allowing comparison of your individual outcome with the average patient in your situation, in order to inform treatment decisions. The project can also provide feedback to practitioners that shows how the results and outcomes of their patients compare to the national average. There are strong economic arguments to be made for this type of research, in terms of value for money in medical treatment.
The methodology of the project was described in great detail, with stress placed on the importance of patient input. The three main measures used are whether patients receive safe, effective, patient-centred care, whether they receive appropriate care, and whether they receive timely care. These measures are combined with the clinical data and feedback directly from patients via PROMs questionnaires to compile annual reports on prostate care in Ireland – one to inform clinicians, and one aimed at informing the patients themselves – as well as reports for individual hospitals and scientific journal articles.
This project was the first in Ireland to involve men’s health advocates and patients, and the research team have found that the patient input is hugely valuable, because they can see that what is important to clinicians and investigators is not always important to patients (and vice-versa). It is hoped that patients in Ireland and all over the world will benefit from the results of this study, and any future studies that use the data that have been collected by IPCOR.
One very important aspect of this type of research is that patients are given the opportunity to tell their stories, and this is of huge value to the patients who come after them, allowing them to know their expected outcomes. Mr. Galvin also took the opportunity to thank all the contributors to the project, researchers, committees, funders and of course the patients themselves.
By Judy Higgins, PhD