Comprehensive Patient Records
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CPR for Cancer Outcomes in Leeds, UK
This ground breaking, Macmillan Cancer Support funded, Comprehensive Patient Records (CPR) project aims to develop a clearer picture of what happens to people living with and beyond cancer, and the cost associated with their care.
We will study the trends in securely linked, non-identifiable patient information from GP surgeries, community care units and hospital records.
Take a look at our work-streams, below.
(best viewed using Google Chrome)
Why We Are Doing This Project
Every year, increasing numbers of people are living longer with and beyond a cancer diagnosis. This presents us with a societal challenge for the delivery of efficient cancer care that can maximise the quality of life for cancer patients.
This growing number of cancer survivors have reported significant unmet needs at a time where there is incomplete understanding of their long-term service needs, the consequences of cancer treatments, and the appropriateness of after care services in Leeds.
We are linking primary- and secondary-care data to:
- Gain a better view of patients’ health before they are diagnosed with cancer.
- Understand the impact of cancer treatments on subsequent health & well-being of the patient.
- Identify the relative associated cost of a cancer diagnosis to the NHS (using Leeds Teaching Hospitals NHS Trust as an exemplar case).
- Explore the effect of cancer on everyday life by collecting patient-reported outcome measures.
- Develop methods to automatically identify recurrence and progression event.
We are passionate about patient involvement and it is central to guiding the success of this innovative project. Patients with experience of cancer have been involved throughout all stages of this project. This includes commenting on the project design and preparation for ethics approval. Our investigator team includes patient representatives and the project design has been informed by patient advisory groups.
“the ethical considerations have been dealt with properly and that this is a good use of existing data.”
– Cancer Research UK Leeds Centre’s Public and Patient Involvement in Research Group
Patients continue active involvement through bi-monthly project steering group meetings and are heavily involved in our Patient-Reported Outcome Measures work-stream.
“We unanimously state we endorse the work going forward.”
– Research Advisory Group, Section of Patient Centered Outcomes Research, Leeds Institute of Cancer and Pathology
If you’re a patient and would like to get involved with research, visit the POG Patient-Reported Outcomes Group website. The group currently meets twice a year to discuss ongoing research projects and to plan future activities. It is currently co-lead by two of our researchers: Dr. Gemma Clarke and Dr. Elizabeth Stamp.
Meet The Team
News and Reviews
Workstream five now has ethical approval, so the quality of life data collection can start soon.
Pilot linkage success
We have succeeded in linking some pilot data in a trial run of our ground-breaking protocol.
Our clinical research fellow, Dr Kieran Zucker, presented at the Leeds Digital Festival on the need for analysis to be based on typical patients rather than the very select few that are eligible for randomised control trials.