Palliative Partners in Head and Neck Cancer (PP-HANC) - a network approach to addressing the needs of patients and their families

Research question:

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. Background:

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. Aims:

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. Objectives (O):

O1. Develop a palliative HNC network within the North of England, representing a geographical area with high prevalence of IHNC and palliative care needs.

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. O3. Secure information governance approvals to enable access to those linked datasets. O4. Develop and refine research questions and priorities to prepare and submit a future grant proposal.

Methods: This proposal will consist of three interconnected work packages (WP).

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.

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).

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.

Timelines for delivery (months, M): WP1: M1-16 WP2: M1-16 WP3: M4-16 Anticipated impact and dissemination:

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.