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CONSORTIUM FOR HOSPICE AND COMMUNITY RESEARCH

The Consortium for Hospice and Community Research was established at a summit meeting held in April 2017. The aim of the Consortium is to ensure that the UK becomes a global leader in the area of hospice and community research within 5 years. Hospice and Community Research refers to a broad range of palliative care and cancer research activities across different disease groups and settings.

Sam Ahmedzai

(NIHR National Specialty Lead for Supportive Care & Community-based Research)

Our partners

The consortium comprises a number of stakeholders including charities and government organisations, each with a commitment to improving the lives of patients, and their carers, in the hospice and community settings.

Consortium Charities have agreed to support the building of research capacity, competence and activity by:

  • Being supportive of initiatives to raise research awareness and research skills for their staff;
  • Promoting an expectation that research will be an integral part of the posts they support and aspiring to having research time built into the contracts of the posts they fund;
  • Exploring collaborative funding models to pay for clinician research time;
  • Publicising research opportunities and resources to their staff and stakeholders;
  • Ensuring reach to their patient populations.

The NIHR CRN have agreed to support the building of research capacity, competence and activity by:

  • Ensuring appropriate training and development opportunities are made available to hospice and community-based staff;
  • Fostering links between hospices and the LCRN in which they are sited to ensure that they have the appropriate resources and infrastructure support necessary to participate in research;
  • Supporting and promoting the Hospice UK Research Active Hospices framework;
  • Working with Hospice UK to implement a framework for measuring research activity in hospices and produce regular performance reports;
  • Maintaining and keeping updated a centralised list of supportive and palliative care portfolio studies;
  • Communicating the availability of research opportunities to all stakeholders;
  • Providing the secretariat for the consortium.

The NCRI have agreed to support the expansion of the portfolio through mentorship and tutoring of new researchers and supporting the development of high quality research proposals through the relevant Clinical Studies Groups.

Learn more about the Consortium's partner organisations below.

Consortium Member Organisations

The NIHR Clinical Research Network provides the infrastructure necessary to undertake high quality clinical research in the NHS. We help researchers set up clinical studies efficiently, support the life sciences industry to deliver research, provide research training, and work with patients to ensure their needs are integral to all research activity.

NCRI: our purpose is to improve health and quality of life by accelerating progress in cancer-related research, through collaboration. Together we: ensure a coordinated portfolio of research related to cancer; seize opportunities and address challenges in research relevant to cancer; continuously improve the quality and relevance of research related to cancer; and accelerate the translation of cancer-related research into practice.

Maggie’s is here for anyone with cancer and their families and friends, giving them free life-changing support at our Centres across the UK and abroad.

Marie Curie is the UK’s largest charitable funder of research in palliative and end of life care. The charity helps people living with a terminal illness and their families make the most of the time they have together by delivering expert hands-on care, emotional support, research and guidance.

Teenage Cancer Trust make sure young people don't face cancer alone by helping young people and their families deal with the many ways that cancer can affect your body, your mind and your life. We work in partnership with the NHS to deliver specialist nursing care, in schools and colleges to provide information about cancer to help encourage early diagnosis, and by bringing young people together so they can support each other. We also work to influence change at a national and regional policy level.

Target Ovarian Cancer is the UK's leading ovarian cancer charity. We work to improve early diagnosis, fund life-saving research and provide much-needed support to women with ovarian cancer. We’re the only charity fighting ovarian cancer on all three of these fronts, across all four nations of the UK. We work with women, family members and health professionals to ensure we target the areas that matter most for those living with ovarian cancer.

Hospice UK is the national charity for hospice and palliative care. Our four strategic goals are to: extend our reach and enable hospice quality care to be delivered in any setting; tackle inequality and widen access to hospice care; work with communities to build capacity and resilience to care for those at the end of life; and empower a strong, dynamic and responsive hospice sector. Hospice UK supports hospices to be research and outcomes active. A focus on research and outcomes enables good quality care to be provided, described, evaluated and shared.

Brainstrust is the only national charity dedicated solely to brain tumour support. It has unique, patient centric, coaching led model at the centre of its service and works with patients and caregivers so that they feel less afraid, less isolated and resilient when facing a brain tumour diagnosis.

Macmillan Cancer Support is a leading UK charity providing practical, emotional and personal support to people affected by cancer. As a leader in UK health and social care, Macmillan is often looked to for evidence-based expertise, particularly in the fields of living with and beyond cancer, long-term effects, patient experience and outcomes, and end of life care. To reach and improve the lives of everyone living with cancer, we invest in research that helps us to understand the numbers, needs and experiences of people living with cancer and generates the evidence needed to enable a better cancer experience.

Annual conference

The Consortium held its inaugural annual national conference in April 2018 dedicated to promotion of research in hospices and community-based settings. The day was composed of key member organisations providing updates on progress against their Consortium objectives. Prizes were awarded to the most research active hospice and to the research team which had published the results of a practice changing research study on the NIHR portfolio. Here are some sound bites from key collaborators to give you a flavour of the day.

Further information

Please visit the NIHR CRN Cancer website below for more information about our 2019 conference.

www.nihr.ac.uk/nihr-in-your-area/cancer/

For further information on the Charities Consortium, contact Dr Shamaila Anwar, Specialty Cluster Manager (Cancer, Surgery and Oral & Dental Health).

nihrandcchcr@nihr.ac.uk

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