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21/54 NIHR Palliative and End of Life Care Research Partnerships - commissioning brief

Contents

Important change to application submission requirements for part one of this funding opportunity

There is no change to the submission date, which remains as 2 September 2021 at 13:00 hours, but applications to part one of this call can now be submitted without signatures. The collection of electronic signatures is usually a mandatory requirement before completed applications can be submitted in the MIS. To help applicants during this peak annual leave period, we have removed the requirement for signatures at the point of submission; signatures will be collected later in the process if applicants are successful at committee review. If applicants have already made arrangements to collect signatures and still wish to do so, then the system will allow this. Please note though, if applicants do add any signatories in the system, you will not be able to submit until those people have accepted, declined, or they have been removed from the application.

Summary

The National Institute for Health Research (NIHR) is keen to support the building of capacity and capability in palliative and end of life care. It wishes to ensure that NIHR research is conducted in the areas where the health and social care needs are greatest and to increase the evidence base to improve the delivery of palliative and end of life care services and outcomes for people who use services, carers of people in receipt of services, and/or working in the sector.

It is anticipated that commissioning research in this important area will comprise two parts:

  • Part one- NIHR partnership call
  • Part two – NIHR commissioned call: Building the evidence base

Through supporting the establishment and growth of partnerships, networks and collaborations in palliative and end of life care, it is expected that partnerships supported through this part one call will ultimately lead to the submission of high-quality proposals to the NIHR research commissioned call on palliative and end of life care (part two) that will launch in 2022.

Deadline for Part One proposals: NIHR partnership call - in proportion with the level of funding available, please note this is a single stage assessment process

The deadline for straight to stage 2 applications is Thursday 2 September 2021 at 1pm

A webinar to support applicants will be held on Monday 28 June 2021 from 10:45-11:45, potential attendees should register their interest at crossprogramme@nihr.ac.uk. General questions about the call and further guidance may be obtained by sending a short summary (max 1 A4 page) of the proposal to same email address.

For support developing applications, applicants are also encouraged to contact their local NIHR Research Design Service (RDS) or equivalent in the first instance. 

Please note: the NIHR research programmes continue to welcome applications that fall outside of the scope of this particular call through their researcher-led workstreams at any time. 

To see the specification document and other supporting information for this call or to apply, see the call post.

Supporting Information

In 2017, a report from Cicely Saunders International forecast that at least half a million people in England and Wales would need palliative or end of life care every year by 2040. That level of demand has already been reached during 2020. Funding important research into palliative and end of life care continues to be a priority for NIHR, producing evidence that informs and supports the delivery of dignified and compassionate care to anyone reaching the end of life, whether they are cared for at home, in the community, in hospices, hospitals or care homes.

Specifically for the purposes of this call, applicants are encouraged to include geographic populations which have been historically under served by NIHR research activity in order to ensure that NIHR research is conducted in the areas where health needs are greatest.  Data are included in the supporting documentation to illustrate the potential mismatch between research and burden of disease. Given that currently, equivalent data from across the UK is not included within a single tool, the data has been derived from different sources from across the UK based on areas of direct responsibility. However, the NIHR is keen to ensure that research is conducted in the areas where health needs are greatest across the UK.

This information reinforces the need to expand research activity into under-represented areas to align with NIHR’s ambition to increase research taking place in underserved communities, ultimately increasing patient benefit through participation in research. Acknowledging that conducting research in sites that are inexperienced or research naïve presents risks, challenges and perceived barriers to engaging with new recruitment sites, NIHR is looking to address and alleviate some of those barriers through this two-part call, open to researchers across the UK.

Part One Commissioning: NIHR Partnership Call

We anticipate that a range of projects in size and scope will be commissioned for between £50,000 and £100,000, running for a period of 12 to 18 months, to support the establishment and growth of partnerships, networks and collaborations in palliative and end of life care, with the expectation that this activity will result in submitted research proposals in part two of the call.

The objective of the research partnerships includes (but is not limited to) building capacity, exploring and establishing infrastructure, forming professional multiagency and multidisciplinary relationships across health, social care, charities, voluntary and community organisations, and driving the enthusiasm and ability to carry out future research in new or less experienced sites.  Justification as to how the award will lead to the development of sustainable partnerships between research and practice will be required to support applications for funding; networking or research activities alone are likely to be rejected. 

Within the allocated 12 to 18 month period for part one, partnerships are expected to make preparations for palliative and end of life care research applications within the remits of the participating NIHR programmes in readiness for part two.

This could be achieved through a combination of the following areas:

  • funding protected research time;
  • “buddying” systems that partner research active institutions with research naïve sites to expand involvement, share and build research expertise;
  • upskilling R&I/R&D departments to support research delivery in naïve sites;
  • formation of research hubs/networks;
  • establishment and initiation of agreed mentorship plans for future joint lead applicant
    N.B. potential applicants may be interested in considering the NIHR Academy mentoring programme;
  • sharing of research infrastructure across sites
  • and/or other arrangements justified by the applicants.

Who can apply?

The partnership must be led by the lead applicant or joint lead applicants who will be responsible for ensuring the successful delivery of the proposed partnership activities and will manage the funding in accordance with the NIHR standard research contract.  Lead applicants may be based in any appropriate host institution or organisation within the UK e.g. Local Authorities, NHS or voluntary organisations, Universities and HEIs. Applicants should check the guidance documents to find out the specific eligibility requirements, and contact the NIHR if they have further questions regarding eligibility.

The roles and responsibilities of the co-applicants should be clearly justified; specifically their contribution to the partnership and how they will work together to deliver the objectives.      

Specifically, NIHR expects these research partnerships to include co-applicant representation within the core research team from at least one geographical area demonstrating a mismatch between care activity and research activity, as well as representation from NIHR Infrastructure e.g. Clinical Research Network (CRN), Applied Research Collaborations (ARC), Clinical Trials Units(CTU).

Please note: a number of Clinical Trials Units (CTUs) have prospectively expressed interest in participating in this call. The list of CTUs and their contact details can be found in the supporting information document.

Criteria for Assessment

Research partnership applications will be assessed primarily against the following criteria:

  • Inclusion of co-applicants from areas with historically low research levels
  • Multidisciplinary representation from across institutions and sectors e.g. social care, hospice, charity, community organisations; or defined plans to create links within the 12 to 18 month period
  • A clear description of planned activity, including any new work specifically related to the creation of the partnership, ensuring that none of the activities undertaken are already receiving funding from elsewhere
  • Clear justification of partnership benefits and outcomes
  • Realistic timeline for partnership activity, demonstrating the pathway to research application submission in part two

Part Two NIHR Commissioned Call: Building the evidence base 

This commissioned call will be advertised in 2022 in order to follow on from the initial part one funding.

The aim of this call will be to support the commissioning of high quality, evaluative, applied healthcare research proposals to address important and enduring evidence gaps in delivering personalised palliative and end of life care. Proposals should support health and care services to facilitate joined up care, helping people at the end of their lives to live as well as possible and to die with dignity, compassion and comfort. 

Please note that this commissioned call will be open to researchers from across the UK regardless of whether they received funding through the part one NIHR partnership call.

Four NIHR research programmes are participating in this call and applications that span the remit of one or more of the following programme are welcomed. Proposals that fall outside of the overarching programme remits will not be considered. Therefore, applicants are advised to pay close attention to the information about remit and tips for success contained in the following links.

 

EME - efficacy of interventions that have ‘proof of concept’ with integrated mechanistic studies

HTA - clinical and cost-effectiveness studies with evidence of intervention efficacy

HS&DR - quality, accessibility and organisation of health and social care services

PHR - public health research at a population level to inform delivery of non-NHS intervention

 

For the purposes of this call ‘palliative and end of life care’ involves identifying and caring for “people who are likely to die within 12 months”, including those with advanced, progressive, incurable conditions and people with life-threatening acute conditions that are expected to result in early death. It covers care provided to adults, infants, children and young people. It also embraces support for families and carers.

The scope for research includes the impact on patients, families, carers, workforce, as well as an evaluation of the burden on and uncertainties within the UK health and social care system. NIHR welcomes research proposals for end of life care in any disease, service, or health and social care setting, including hospitals, specialist centres and services, such as hospices, community services and care homes. Applicants are expected to pay attention to populations that have been underserved, to carry out research in locations where the need is greatest, and to promote the inclusion of diverse participants.

Areas of particular interest with outstanding evidence gaps include, but are not limited to:

  • Reducing health inequalities in relation to end of life care, for example
    • age; ethnic minority groups; different faiths; LGBT people; people with learning disabilities; Gypsy and traveller groups; people in prison; homeless and rough sleepers
  • Reducing inequalities in access and provision of services for patients regardless of condition, setting, geographical area and time of day
  • End of life care referral and transition across health and care services
    • continuity of care; out of hours care; meeting unscheduled demand; integration of health and social care; transition across organisational boundaries
  • Risks and benefits of clinical approaches to end of life care (e.g. clinically assisted hydration, provision of oxygen)
  • Strengthening training and development of expertise to support delivery of quality care
  • Planning and managing end of life care
    • what factors help people with life-limiting conditions and their families or carers to decide where they would like end of life care to be provided and where they prefer to die?

General guidance

  • Applicants should justify the importance of their proposed research and its potential impact on patient care. 
  • Applicants should clearly state how their proposed research addresses an explicit evidence gap and how the research adds value to the existing NIHR research portfolio
  • Patient and public involvement should be included within the application and throughout the study design.
  • Applicants should consider contacting their local NIHR Research Design Service and the NIHR Clinical Research Network for early support

The NIHR is committed to actively and openly supporting and promoting equality, diversity and inclusion (EDI). All NIHR applications need to demonstrate they have met the requirements of the Equality Act (2010) by embedding EDI throughout the research proposal, ensuring there is no discrimination across the following domains; age; disability; race, including colour, nationality, ethnic or national origin; religion or belief; sex; sexual orientation; gender reassignment; being married or in a civil partnership; being pregnant or on maternity leave