Our History

The Section for Patient Centred Outcomes Research Group (PCOR) was established in 1999 under Professor Peter Selby.

In 1998 proposals for the group were presented as part of a general scientific review of the Imperial Cancer Research Fund (ICRF) Cancer Medicine Research Unit. Previous work in this area had been carried out using project funding from other funding bodies. Two scientific officer posts and a half-time clerical officer were supported for 3 years by ICRF. The main objectives and strands of research were to introduce automated assessment of quality of life issues in oncology practice and evaluate their impacts on patient care and outcomes and to continue the development of the tools used for this for use in daily practice in clinics.

In 2001, the group was reviewed separately from the ICRF Cancer Medicine Research Unit in what would be its first 5-yearly review. Support was provided for a clinical research fellow, two senior scientific officers, one scientific officer and a half-time clerical support/data collection person. In 2002, ICRF merged with the Cancer Research Campaign to form Cancer Research UK (CRUK), the world’s largest independent organisation dedicated to cancer research.

In 2003 Professor Galina Velikova, the section leader, got a further grant from Cancer Research UK which funded her time, a full-time research assistant and a part-time administrative support post. The following year, the Yorkshire Cancer Research Network (YCRN) funded another research assistant post to enable studies to be expanded to other locations in Yorkshire. In 2006 the group underwent a successful second five-yearly review and was awarded a five year Programme Grant to continue its work. Additionally, approval was given for Galina Velikova to take over from Professor Selby and lead the programme.

The group continues to work with a number of collaborators, both locally and nationally, in the area of assessment of quality of life issues in cancer, their impact on patient care and outcomes and looking at ways of incorporating this in every day clinical practice.

In addition to the continuation of existing studies, the group has started a programme of work that develops this further. This falls into two main areas: adaptation of quality of life questionnaires to improve their ability to identify issues and training doctors how to interpret the results from the questionnaires and respond to them. Further details of the group’s research can be found in other sections of this webpage

In 2008 we moved to St James’s Institute of Oncology on the St James’s Hospital site closer to the clinics where our work is done and to many of the people with whom we work.

 

Today, our section focuses its research in several areas, with the common aim of using Patient Reported Outcome Measures (PROMS) to improve quality of life and patient-centred care. Our section brings together investigators with interests in three main areas:

The Patient Reported Outcomes Group (POG), led by Galina Velikova, undertakes applied research aimed at improving cancer patients’ quality of life. The group focuses on the development and assessment of online PROMS systems to allow patients to self-report adverse events and symptoms where data is available in electronic patient records to assist patient care.

The Psychosocial Research Group (PSRG), led by Penny Wright, is involved with a number of projects linking Patient Reported Outcome data with routinely collected clinical data from cancer registries and electronic patient records. Penny is interested in the social impact of illness and how to measure this using Patient Reported Outcomes. This includes assessment of the quality of life of carers of people living with dementia.

The Teenagers and Young Adults Group (TYA), led by Daniel Stark, carries out health services research focusing on the application of clinical informatics to the challenges of cancer in teenagers and young adults and survivorship. Dan also has interests and active research studies including research grants in the provision of care for people with cancer and mental health problems, teenagers and young adults with cancer, clinical trials that integrate patient-reported outcomes measures and the biology of germ cell tumours.