Developing the UK Collaborative Paediatric Palliative cAre Research (CoPPAR) Network

Background

There are growing numbers of children and young people living with conditions which may threaten or shorten their lives and 4500 children die every year in the UK. There are now 53 children’s hospices and ~ 10 NHS hospital based palliative care teams but the research evidence base underpinning this care is limited.

There is an urgent need to increase the quality and quantity of research in paediatric palliative care and to do this we need to work in partnership with the paediatric palliative care (PPC) sector to increase the research capacity and delivery. Aims and objectives

Aim: to develop a collaborative UK wide paediatric palliative care research network (CoPPAR) that will deliver national high-quality research studies, education and build research capacity Objectives:

1. to work with seven paediatric palliative care sites (hospice and hospital based) to develop research readiness using methods that can be scaled up to the other hospices and NHS paediatric palliative care sites 2. to deliver a series of educational webinars on the key components of research activity

3. to set up process by which those developing and delivering research studies can access a network of PPI partners

4. to offer mentor opportunities for paediatric palliative care staff who are interested in developing a research career to apply for fellowships including the NIHR pre-doctoral or doctoral awards. 5. to develop guidance on the appropriate methods to undertake research in palliative and end of life care in children.

6. to develop a minimum of two bids for stage 2 of the NIHR Commissioned call on palliative and end of life care. Methods

The vision is that CoPPAR will become the single point of information for all PPC research across the UK that can be accessed by researchers, clinicians, parents and young people and policy makers to enable more effective and efficient delivery of research in the sector. We will work closely with seven PPC organisations to understand their needs, deliver a series of educational webinars that meet those needs (e.g.

PPI, research governance) which will be open to all PPC organisations in the UK. We will work with academic colleagues to produce guidance on the methodological standards for PPC research and offer mentoring to any clinical staff who wish to pursue more formal research training,. A key component of the CoPPAR network will be working with our partner organisations, including our PPI partners, to develop a minimum of two grant applications for the next round of NIHR commissioned call.

It is likely that the topic areas of these bids will be on collecting person centred outcomes data and pharmacological management of distressing symptoms but that there is flexibility for these topics to develop. Timelines for delivery The development of the CoPPAR network will take 18 months. Anticipated impact and dissemination

We will work closely with our national partner organisations, Together for Short Lives and the Association for Paediatric Palliative Medicine to utilise existing communication networks, website blogs and social media to promote the CoPPAR network. This network has the potential to benefit children with life-limiting conditions and their parents , academics, clinicians, service providers, policy makers and research funders by having the infrastructure to offer access to and delivery of high quality research in PPC that will influence policy and practice.