The number of people living with cancer and its effects in the UK is predicted to rise to over 4 million by 2030. Cancer is seen as a long term condition and there has been recognition of the need to support this growing population. Since February 2015 Nottingham University Hospitals Trust (NUH) as part of the Macmillan Recovery package has been offering electronic Holistic Needs Assessments (eHNA) to adult cancer patients. It was recognised that the data collated as a result of the assessments and care plans could be used to shape and evaluate future services within the community.
The project team has implemented eHNA assessment and care planning to most tumour sites within NUH as well as chemotherapy, palliative care day therapy and radiotherapy units. This has been achieved with funding for a dedicated team from a grant by East Midlands Academic Health Sciences Network (EMAHSN). Over 1500 assessments have been completed by patients and action plans developed in partnership with Health Care Professionals (HCP). Analysis of the eHNA data has uncovered previously unexplored or misunderstood experiences of cancer management and survival across tumour sites. The most common concerns are worry, fear and anxiety as well as tiredness, exhaustion and fatigue.
Although not as frequently observed concerns about caring responsibilities, and partners and children score the highest. To support both patients and HCP delivering eHNA a series of information leaflets for patients have been developed by the project team which have evaluated well. Tumour site specific analysis of the data by the project team has led to changes in some pathways of care. Gynaecology cancer patients are now able to access menopause clinics via a nurse led referral and information to GP’s has been updated to reflect their needs. Within Haematology 47% of patients within a Myeloproliferative Neoplasm (MPN) had expressed fatigue as a major concern, the HCP within this site is developing a fatigue management programme to support these patients within the clinic setting.
It was also recognised that this information could have an impact upon the services that were required to support patients to self-manage in the community. It’s important as targeting specific needs for a growing population means that services can be tailored or match existing services with other long term conditions. Working with EMAHSN and Public Health a tool kit has been produced which enables clinicians to extract more detailed meaning from the data. This tool transforms extracted data into a format which can be easily explored to understand the real needs of the users of the service while maintaining appropriate information governance safeguards.
This includes linking to prevalence data, summarised data which Public Health can utilise and looking at the geographical location of patient needs. The team finally have the tools to understand patients’ needs in detail and are using this to shape the services provided, and as this is based on the needs and experience of patients, it ensures that patients are at the heart of evidence based service improvement.
Following evaluation by EMAHSN there will be an annual report produced to support service development, understanding patients’ needs and provide evidence based decision making for service design.This analysis includes;
•Enrichment of routinely collected data at GP/CCG level
•Data to support Intensity Maps
•Data for Public Health to feed into related JSNA chapters and Health Equity audits This has enabled understanding of routinely collected data in an appropriate manner and allowed targeted response; creation and distribution of patient information leaflets, developing clinics to alleviate specific concerns and key discussions with clinicians and wider system partners.
The team have already shared results within NUH Nottinghamshire CCG’s and the Local Public Health team. The tool kit has been developed with the specific aim to share this with other eHNA users in the region and more widely. Along with the tool kit, support material is being developed that outlines how to use the data to make changes – practical guidance aimed at clinical leaders to enable the exploitation of this rich source of understanding about patient’s needs, building on the success of Nottingham. This has been possible with the support of EMAHSN and their resources in data analysis.