We collaborate with NHS England, Health Education England, Macmillan Cancer Support and others to deliver a programme of evaluations on service delivery and workforce innovations. Half the UK population will develop cancer and half of those diagnosed will live for more than 10 years. Traditional aftercare, based on a one-size-fits-all model of routine appointments, is not sustainable nor effective. Our Evaluations Programme assesses the impact of health service innovations designed to deliver care that is more responsive to patient-identified need.
Our evaluations
Service Evaluations commissioned by Wessex Cancer Alliance
Experiences of living with cancer and cancer services have changed dramatically in recent decades. The old system of people being seen through routine cancer appointments has shifted to a personalised care system where the needs of the individual are identified and supported. This change has occurred as more people are living with cancer (currently one in two people will have cancer at some point in their life), and people are living longer following diagnosis.
For over 15 years, the Macmillan Survivorship Research Group (MSRG), University of Southampton, have researched the problems faced by people living with cancer. The Colorectal Well-being study followed nearly 1000 people with bowel cancer from across the UK over five years from before treatment started. We found that psychological and social problems identified before treatment was as important as the stage of cancer in influencing long-term health and wellbeing. Early identification and support of patient-identified problems is therefore essential.
The Wessex Cancer Alliance is leading work to develop new systems and strategies to identify and support the needs of people living with cancer, many of which are being evaluated by the MSRG. Projects include:
- The RbY Wessex Evaluation: This involves the appointment of cancer specialists who work with GP practices and local community services to provide an integrated model of care that links hospital, GP and community services. The cancer specialists aim to help people manage the impact of cancer on their daily lives based on the concerns they raise.
- The Patient Activation Measure (PAM): This measure was developed in the US and for more than 15 years has been used around the world to assess how active people are in their own health care. We wanted to know how appropriate it was to use this measure for people with cancer from the point of diagnosis. Knowing how active someone is may be useful in assessing the types of support needed. Through a review of the literature, analysis of survey data and interviews with people living with cancer and healthcare professionals we found that PAM is useful, relevant and appropriate for people diagnosed with cancer but the point of diagnosis was not the right time to ask these questions. We recommend that the PAM should be delivered in a flexible manner, appropriate to the individual and as part of a wider strategy for personalised care.
For more information about these evaluations, and for details on how you can get involved, please contact the Evaluation lead, David Wright, at D.Wright@soton.ac.uk
Improving Access to Cancer Clinical Nurse Specialists and Key Workers
Funder: NHS England
Chief Investigator: Prof Claire Foster
Lead Evaluator: Dr Sam Sodergren
Co-applicant Team: Prof Claire Foster, Prof Alison Richardson, Dr Jane Winter, Dr Samantha Sodergren, Ms Hazel Brodie
Specialist cancer nursing teams and Clinical Nurse Specialists (CNSs) are ideally placed to deliver personalised care. However, there is a national shortage of CNSs and new service models are recommended. This project developed and evaluated a high-quality model of personalised supportive care, incorporating Cancer Support Worker (CSW) roles into specialist nursing teams to deliver efficient and effective patient care from cancer diagnosis. Through a mixed method evaluation, we found that introducing CSWs to the specialist nursing team improved access to: assessment and care planning; community support services; practical and financial support; health and wellbeing advice and support. Following the introduction of the CSW role, patients were more likely to report being given contact details of a key worker and that the wider healthcare team worked well together.
Cancer Nursing Across Boundaries
Funder: Health Education England
Chief Investigator: Prof Claire Foster
Lead Evaluator: Dr Kate Lippiett
Co-applicant Team: Prof Claire Foster, Prof Alison Richardson, Dr Jane Winter, Ms Hazel Brodie, Dr Kate Lippiett
Project start date: 1 June 2019
Project end date: 31 December 2021
There is a need for a cohesive, integrated service for cancer patients, with improved communication channels across primary and acute services. This is particularly important for people with multi-morbidities: The ColoREctal Wellbeing cohort study (CREW) study found that several factors (such as depression, comorbidities limiting everyday life, low confidence to self-manage) were associated with poor long-term outcomes. Primary care and acute cancer nursing teams should work in partnership to manage cancer alongside other chronic conditions. However, limited knowledge, skills, understanding and communication can undermine partnership working. This project evaluates the impact of new boundary-spanning nursing roles to promote collaboration between primary and acute care nursing and to support education, training and development needs.
For more information, contact the lead evaluator, Dr Kate Lippiett.
The Patient Activation Measure (PAM) Evaluation
Funder: Wessex Cancer Alliance, NHS England
Chief Investigator: Prof Claire Foster
Lead Evaluator: Dr David Wright
Co-applicant Team: Prof Claire Foster, Dr Lynn Calman, Dr David Wright, Dr Kate Lippiett, Dr Nicole Collaço
Project start date: 1 July 2020
Project end date: 30th June 2021
Patient activation is a behavioural concept that assesses the extent to which an individual participates in their own care and illness management. PAM was developed by Judith Hibbard in the US and measures the levels of activation in the population, including beliefs, confidence and self-assessed knowledge of health-related management. The Measure has been used widely across a range of conditions, including diabetes and cardiovascular disease. Few studies have examined the use of PAM with people recently diagnosed with cancer. Our evaluation addresses this, assessing the appropriateness, relevance and usefulness of PAM in supporting personalised care for people with cancer. The evaluation involves 1) a review of published and grey literature; 2) secondary data analyses from relevant University of Southampton / University Hospital Southampton studies; 3) qualitative interviews with patients, health professionals and managers.
For more information, contact the lead evaluator, Dr David Wright.
Right by You Right by You Integrated (Wessex): A service evaluation
Funder: Wessex Cancer Alliance, NHS England
Chief Investigator: Prof Claire Foster
Lead Evaluator: Dr David Wright
Co-applicant Team: Prof Claire Foster, Prof Alison Richardson, Dr Lynn Calman, Dr David Wright, Dr Kate Lippiett
Project start date: 14th December 2020
Project end date: 13h December 2022
A barrier to personalised care is a lack of effective integration across primary, community and secondary care. Right by You Integrated (Wessex) (RbY Wessex) aims to provide integrated holistic support across healthcare settings, transforming care and support for people living with cancer. RbY Wessex is funded by Macmillan Cancer Support, with the evaluation funded by NHS England. The core components of RbY are:
- A supported conversation with the person living with cancer as close to diagnosis as possible in the secondary, primary or community setting, and then as often as required
- During the supported conversation, a holistic needs assessment to be completed if appropriate
- The development of a personalised care plan, co-created with the individual, summarising needs, concerns and recommendations
- Navigation to the right support for the individual and helping people access the services and support
- Sharing appropriate information with the person living with cancer
RbY Wessex involves the introduction of boundary spanning Cancer CNSs and CSWs to work across primary and secondary care. We are delivering a process and outcome evaluation to describe the intervention design and delivery, assess the impact on patient outcomes and experience, and assess the impact on health professional outcomes / experience.
For more information, contact the lead evaluator, Dr David Wright.