Hospice and Palliative Care Research - #BecauseIMatter

Quote from Professor Sam Ahmedzai

Making the UK a global leader in palliative care research by 2022

The National Institute for Health Research (NIHR) supports the funding and delivery of clinical research in health and social care in England and investment in cancer research remains a priority. Last year over 1,000 cancer research studies were carried out with the support of the NIHR. This includes the essential contribution to research being carried out in hospices and community care.

In Britain we are proud of our palliative care services for patients with advancing progressive diseases such as cancer, and who are at the end of life. We have led the world in the development of supportive and palliative care services, including standalone in-patient hospice units and multidisciplinary teams embedded in NHS hospitals, and more recently through community teams extending care into people’s own homes and care homes.

Whereas much of the headline-grabbing research is centred on advances in cancer diagnosis and treatments, which usually occur in a hospital setting, there is a recognised need for research to improve the quality of life of patients (and their carers) once they have finished their treatment and have left hospital. This includes supportive and palliative care research.

The NIHR and a number of charities have increased funding and other forms of support towards boosting research in this important aspect of a cancer patient’s journey. However, in my role as National Specialty Lead I believe there is so much more we can do to improve the evidence base, especially by engaging clinicians working in hospices and community settings to contribute to this research endeavour.

This is why our team at the NIHR have initiated the Consortium for Hospice and Community Research. The Consortium was first launched in April 2017 with the aim to make the UK a global leader in palliative care research within five years. We’re partnering with Hospice UK, Macmillan, Maggie’s, Marie Curie, NCRI, Target Ovarian Cancer, Sue Ryder and Teenage Cancer Trust.

The Consortium’s ambitious objectives include:

  • Increasing the portfolio of studies involving recruitment from the hospice and community sectors by five per cent per annum.
  • Patients or carers to be recruited into NIHR Portfolio studies from every hospice in the UK each year by 2022.
  • To publish at least one practice-changing piece of research for the care of cancer and palliative care patients in the hospice and community setting each year by 2022.

I chaired the Consortium’s first conference this year, opened by Baroness Julia Neuberger who played a key role in the Consortium’s establishment. It was great to hear from members of the public living with cancer who showcased research projects they had been working on with partners and internationally recognised teams and hospices which were awarded for major progress in research activity. Partners gave updates on their progress towards meeting the Consortium’s objectives, and researchers presented numerous examples of NIHR Portfolio studies which strive to improve care for patients and their families. It was a very productive day and we are already planning the next.

This month our team is supporting World Hospice and Palliative Care Day by raising awareness that research can and should take place in hospice and community settings and by encouraging health and social care staff, patients and carers to get involved. Join the conversation #WHPCDay18 #BecauseIMatter

Professor Emeritus Sam H Ahmedzai

Quote from Baroness Julia Neuberger

Map of research active hospices

Map of research active hospices

View a map of hospices that have recruited patients to portfolio studies, 2015-2018

View Hospice recruitment on the Open Data Platform https://odp.nihr.ac.uk, all you need is an NHS email address to create an account, simply login and click on the first link 'Cluster F Portfolio ODP'.

Marie Curie and Macmillan logos

Dr Sabine Best is Head of Research at the terminal illness charity Marie Curie, responsible for overseeing Marie Curie’s portfolio of research activities and Adrienne Betteley is the Specialist Advisor for End of Life Care at Macmillan Cancer Support. Both charities are partner organisations of the Consortium for Hospice and Community Research. We spoke to them as part of our spotlight campaign on World Hospice and Palliative Care to find out about future priorities and the importance of research in this area.

St Gemma's leads the way

Research Ready Hospices

Pilgrims sets the pace

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

If you or your organisation is interested in joining the Consortuim please contact the Consortium Manager shamaila.anwar@nihr.ac.uk

The NIHR supports research studies through our funding programmes, training and support for health researchers, and through providing world-class research facilities. We also support dialogue between the life sciences industry and charities to benefit all, and facilitate the involvement of patients and the public to make research more effective.

Every year, more than half a million people help the NHS to improve healthcare and develop life-saving treatments by taking part in health research.

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