Title: Palliative Partners in Head and Neck Cancer (PP-HANC) - a network approach to addressing the needs of patients and their families
Funder: Department of Health and Social Care

Abstract: Background_x000D_ _x000D_ People with incurable head and neck cancer have very complex needs. The cancer and treatment cause severe difficulties in eating, speaking and breathing as well as pain, tiredness, isolation and low mood. Because of this, people with head and neck cancer may need to use hospital or emergency care services more often. For some people, whose cancer is incurable, this can occur even towards the end of their lives. Where individuals live, and how rich or poor the area is, affects whether or not those with head and neck cancer die at home or in hospital. The North of England has a high number of people who die from head and neck cancer. To learn more about the issues, help reduce variations in care, and improve experiences, we want to bring together a new team. _x000D_ _x000D_ The proposed research _x000D_ _x000D_ The new team, based in the North of England, will consist of people from universities (researchers, data specialists), people with experience of head and neck cancer, and people from the NHS. We want to learn how individuals with head and neck cancer use different healthcare services, and what variations there are within the North of England and the rest of the UK. We also want to work out how to reduce these differences. Some of this information is available but it exists in many different places. So first, we want to find out what information is available, how we can access it, and make an initial assessment of its quality and usefulness. The team will then work together to agree the most important focus for future research in this area. We will apply for further research funding to undertake this work. _x000D_ _x000D_ How we will do this _x000D_ _x000D_ There will be three parts to our work which will occur over a 16 month period. _x000D_ _x000D_ 1. Build the team by inviting other people to join who have interest, skills or experiences in this area. Part of this involves a ‘snowball’ approach to forming a team. This is when we reach out to individuals and groups who may know others with personal interest in this area. Hence, the team grows ‘like a rolling snowball’. This will help target people in areas where research is not commonly undertaken. _x000D_ 2. Identify and understand what information is already available, what it can tell us about the use of healthcare services and how it can be shared in a safe and sensible way. We will look at both national and local information. _x000D_ 3. Conduct meetings between the people from Universities, NHS, patients and the public to form agreement about the most important research to be done in this area. Our learning from the previous part of the project will be shared at these meetings. This will help us know what information can be used to answer the most important research. Together, we will write an application for research funding. _x000D_ _x000D_ By the end of this project, we will have a team committed to improving care for those with head and neck cancer. We will have produced a handbook of healthcare data, formed agreement about the most important research, and have submitted a plan for research funding to help us progress the next steps. _x000D_ Our progress and findings will be shared in different ways. These include having a webinar meeting and linking with professional organisations and charities. We will also use social media in novel ways, such as using short videos, to let wider audiences know about our work. This will help highlight the importance of this work for those with incurable head and neck cancer across the country.

Lay abstract: Research question: _x000D_ _x000D_ This proposal will establish a palliative head and neck cancer (HNC) partnership and address whether high-quality routine data sources can be accessed, linked and extracted to investigate key research questions and priorities relating to healthcare utilisation and inequalities. _x000D_ _x000D_ Background: _x000D_ _x000D_ Those with incurable head and neck cancer (IHNC) have considerable unmet needs and complex symptom burden, with evidence of substantial geographical and/or socio-economic inequalities. Accurate baseline information on healthcare needs, resource utilisation and service provision in the last year of life is lacking. This places limits on service delivery planning and the development and testing of interventions to address inequalities. Our proposed partnership spans three regions, which nationally have some of the highest rates of IHNC. These regions have a strong history of delivering policy and practice relevant HNC research, but this has yet to include palliative and end-of-life care. _x000D_ _x000D_ Aims: _x000D_ _x000D_ The overall aims are to (i) establish a palliative HNC partnership, (ii) identify and evaluate routine IHNC data sources and utilise these to develop and address research priorities. _x000D_ _x000D_ Objectives (O): _x000D_ _x000D_ O1. Develop a palliative HNC network within the North of England, representing a geographical area with high prevalence of IHNC and palliative care needs. _x000D_ O2. Engage with data providers to identify relevant datasets and their specific data fields to understand the potential quality and utility of these sources to inform research priorities. _x000D_ O3. Secure information governance approvals to enable access to those linked datasets. _x000D_ O4. Develop and refine research questions and priorities to prepare and submit a future grant proposal. _x000D_ _x000D_ Methods: _x000D_ _x000D_ This proposal will consist of three interconnected work packages (WP). _x000D_ _x000D_ WP1: Bring together a network of researchers, patient and public representatives, data architects and key stakeholders (O1). This will be undertaken utilising existing contacts as well as targeting key individuals and organisations within areas of low research activity using a ‘snowballing’ approach. _x000D_ WP2: Identify potential datasets from both national datasets and local care providers. Understand more fully the potential quality and utility of the data by examining metadata, data quality reports and published outputs from these datasets. Establish relevant information governance approvals. Working in an iterative way with WP3, datasets and relevant data fields will be mapped to potential research questions (O2 & 3). _x000D_ WP3: Develop and refine research questions and priorities. This will be conducted using a Nominal Group Technique within structured meetings to achieve consensus (O4). The agreed research question(s) will form the basis of the collaborative grant proposal which will be submitted within the project timeframe. _x000D_ _x000D_ Timelines for delivery (months, M):_x000D_ _x000D_ WP1: M1-16_x000D_ WP2: M1-16_x000D_ WP3: M4-16 _x000D_ _x000D_ Anticipated impact and dissemination:_x000D_ _x000D_ This project will establish the partnership, infrastructure and access to routine datasets to help address key priorities to improve care for those with IHNC, an especially complex group with unmet needs. A directory of data sources will be compiled. Dissemination about partnerships activities will be conducted through social media (including a patient representative vlog), conferences, relevant professional groups and their websites and an open webinar.

Research activity codes: 5.9 RESOURCES AND INFRASTRUCTURE (TREATMENT DEVELOPMENT);6.9 RESOURCES AND INFRASTRUCTURE (TREATMENT EVALUATION);7.4 RESOURCES AND INFRASTRUCTURE (DISEASE MANAGEMENT);8.5 RESOURCES AND INFRASTRUCTURE (HEALTH SERVICES)
Health categories: CANCER AND NEOPLASMS