Why is there a need for this research?
Service-user involvement within palliative care research has the potential to improve research quality, relevance, funding and when and how the results from research are shared (dissemination). Service-user involvement in research has been described as incredibly important in informing care, and in identifying patients’ and families’ priorities. But, there is very little evidence on how best to involve users in research. Our research aims to help address this gap.
So what did you do?
Our research, led by Dr Barbara Daveson, a Lecturer in Health Services Research at King’s College London, used a previously established method in palliative care – the MORECare Transparent Expert Consultation approach. This MORECare method helped identify individual priorities, generate recommendations and form consensus on priorities for service-user involvement in palliative care.
The work involved hosting a patient, carer and public involvement (PPI) workshop in April 2014 at the Cicely Saunders Institute. Individual priorities of patients, caregivers, user advocates, researchers and members of the public were shared during this workshop, and then carefully analysed statistically and qualitatively through the use of content analysis.
The workshop was co-facilitated by researchers, including Susanne de Wolf-Linder, Jana Witt and patient advocates Carolyn Morris from National Cancer Research Institute Consumer Liaison Group & Clinical Studies Group in Psychosocial Oncology & Survivorship and Kirstie Newson.
What conclusions did you come to?
The research identified four core components that are essential to service-user involvement in palliative care research:
- Researchers need to promote the contribution of service-users and promote the value of their contribution;
- Service-users should be involved early on during the research project. One participant summed this up by explaining that researchers should approach service-users by saying: “What should we be studying?” [and not] “We are studying these”’;
- Flexible methods of involvement were also shown to be essential. Flexibility helps people become involved and also allows people to remain involved in the research over time. One caregiver explained “It’s a matter of timing when you work with family members and carers, because going through the process of supporting somebody with fighting whatever condition they have and possibly looking at the end of their life, they [the patient] are your sole concern… research doesn’t matter when you’re just trying to get through chemo or get the district nurse in.”
- Service-users should also be encouraged to add value to research by helping to improve research productivity, quality and relevance. This element acknowledged the potential gains from service-user involvement and it was particularly important to the researchers.
The results of this work have been published in Palliative Medicine in a paper entitled: ‘Results of a transparent expert consultation on patient and public involvement in palliative care research’.
Why does this matter?
Ensuring the quality and relevance of palliative care research is paramount and service-user involvement is fundamental to this. Our findings help decrease the risks involved with using ineffective service-user models in palliative care. Ineffective service-user involvement models may increase emotional and practical demands unnecessarily on palliative care patients and their unpaid caregivers.
Who will use or be interested in this research?
Palliative care researchers, palliative care health professionals, members of the public, patients and their carers/ families, research administrators, those interested in service-user involvement and other researcher groups linked to healthcare.
Is there anything not covered by this interview schedule that you would like to add?
A partnership model of work – between researchers and service-users and advocates – was essential to the success of this project.
Our patient advocates, Kirstie and Carolyn, are long-standing members of the Dissemination, Engagement and Empowerment Advisory Group (DEEAG) on a large research project International Access, Rights, and Empowerment (IARE) study, within the BuildCARE project.
BuildCARE, led by Professor Irene Higginson, aims to make a fundamental change to the way palliative and end of life care is regarded, implemented and prioritised internationally, and public engagement forms part of the project.
Dr Barbara Daveson, lead author on the paper and chair of the DEEAG, said: “I’ve had the privilege of working on service-user involvement issues in palliative care research with Kirstie since 2009 and Carolyn since 2011.
“This earlier work laid the foundations for our recent project during which Kirstie and Carolyn were instrumental in working with skilled researchers in the Institute to develop and implement this model.
“Due to the success of the project, our new model is being trialled across a number of research projects and patient groups. The National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC), Palliative and End of Life Care Theme is now also helping to support our research into service-user involvement.
“We continue to welcome any new service-users that may wish to become involved in our work. New voices and experiences will help us continue to respond to service-user need.”
BuildCARE is supported by Cicely Saunders International (CSI) and The Atlantic Philanthropies, led by King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, UK.
The Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London is part of the National Institute for Health Research (NIHR), and is a partnership between King’s Health Partners, St. George’s University London, and St George’s Healthcare NHS Trust. The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.
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