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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.
Whereas much of the headline-grabbing research is centred on advances in cancer diagnosis and treatments, which usually occurs 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 support to boost research in this important aspect of a cancer patients' journey.
In the last three years nearly 50 hospices across the UK have become research active. The hospices have:
Supported over 30 studies on the NIHR Clinical Research Network Portfolio, over 20 of these are cancer studies
Recruited over 3,500 people into the studies
3,100 of these people were recruited into the cancer studies
The number of research active hospices is drawn from the NIHR Central Portfolio Management System. These hospices have recruited people into NIHR Clinical Research Network Portfolio studies between April 2015 to March 2018.
Due to local recruitment accrual and governance processes, recruitment of participants from hospice sites may have been attributed to the local NHS trust that provided research and development approval. It is therefore likely that the number of hospices recruiting to NIHR Clinical Research Network Portfolio studies is higher.
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 Consortium please let us know, contact email@example.com.
Professor Emeritus Sam H Ahmedzai is the NIHR Clinical Research Network National Specialty Lead for Cancer: Supportive Care and Community-based Research. He believes there is much to do to improve the evidence base in hospice and community settings, read his blog ‘Making the UK a global leader in palliative care research by 2022’.
Please check the list to see if your hospice is listed. If your hospice is research active and not on the list please let us know, contact firstname.lastname@example.org.
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'.
Hear from staff, patients and carers at research active hospices including:
'St Gemma's leads the way' - Professor Mike Bennett and research nurse Kath Black talk about the St Gemma's Academic Unit of Palliative Care and research participant, Jean Gallagher, shares her personal story.
Find out more about:
The Cancer Specialty
How we support health and care professionals
How we support researchers
Hospice UK research and outcomes
Hospice UK research active hospices framework
Marie Curie Palliative Care Knowledge Zone
Marie Curie Research Grants Scheme
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 Adviser 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 Hospice and Palliative Care to find out about future priorities and the importance of research in this area.
Sabine: "Research in this area is vitally important as people are living much longer and as a result of this more complex needs are arising. Recent research has shown that at least 63 per cent of all deaths would benefit from palliative care and it's therefore important for Marie Curie to try and address this challenge. For patients it is imperative that research takes place in this area as currently less than 0.7 per cent of all cancer research studies include palliative care and in non-cancer conditions, the percentage is even lower.
“Also, hospice and community settings have different research needs. Hospices have specialist palliative care physicians working in them, but that is often not the case in the community. People don’t have access to research or don’t always get asked, even though we know that many patients in those environments are willing to take part, mainly for altruistic reasons, as they appreciate the opportunity to help others. Through the Consortium platform we can highlight the need for research in this area in both settings.”
Adrienne: “Palliative and end of life care research has not received enough funding historically, despite being one of the most important areas of care and support that people need to access early when they have an illness, such as a cancer, that cannot be cured.
“Through Macmillan Cancer Support’s work we have found that there are still extreme inequities. Not everyone has the same access to care, care is often not planned, and individuals are not being offered choice and support. As a result, end of life experiences can be extremely challenging for the individual and those around them. Without the evidence to explain some of these experiences and inequities, we will never be able to improve the system and services to improve the lives of people who are living and dying with an incurable disease.”
Sabine: “The short answer to this question is to make it simpler to recruit in hospices. The recently revised eligibility criteria which allows hospices to be included in the remit of Clinical Research Network (CRN) support is a great step forward. Also awareness of research in hospices and examples of where this works well is important for opening dialogues. CRN Sub-Specialty Leads for supportive and palliative care also play a huge role in raising awareness.”
Adrienne: “We need to raise awareness of the importance of research in end of life care, particularly in the community as we know that most people want to die at home but often do not. We need more evidence to help our understanding of the reasons which prevent this happening.
“We need to encourage employers of the palliative care workforce to support research in practice, whilst being aware of the challenges of stretched resources, particularly in the community.
“We should also look to create learning and development opportunities to increase knowledge and skills around research in practice.”
Sabine: “There are different groups in each setting who can benefit from taking part in research. Within hospices, it is still largely cancer patients who are being looked after, as well as people with terminal illnesses such as motor neurone disease, and research aims to increase quality of life by finding better ways of dealing with distressing symptoms such as pain, breathlessness or incontinence. People with non-cancer conditions have many unmet needs in palliative care and much research in the community is needed to find the best way of providing such care. This for instance includes patients diagnosed with dementia in care homes, as many people die in care homes due to the ageing population. Other minority groups such as the LGBT community are also seldom involved.”
Adrienne: “We currently have little understanding of the numbers, needs and experiences of people living with a cancer that cannot be cured. It’s an extremely complex time and we need to do more research to understand. The emotional impact of being told the cancer can't be cured, together with the physical effects, can be huge. In addition there are numerous practical issues around getting affairs in order and the variety of treatment options can be confusing. Managing the uncertainty is challenging, and we know research is needed about appropriate communication with patients at this stage, particularly around prognosis to best inform their treatment choices.
“The specificity of groups in society who could benefit from being involved in research is more challenging. We know that there are many who are more vulnerable and harder to reach such as people who are homeless, in prison, or have mental health issues. In addition we know from the Cancer Patient Experience that all ethnic minorities, but particularly Chinese patients, experience poorer outcomes than those of the broader population. In addition both younger patients and those aged over 85 have poorer cancer experiences than the wider population. The challenge is knowing which groups to target, as they all feel like they should be a focus.”