The first North East Palliative Care Research Symposium feedback from workshops Questions posed during afternoon sessions: 1. What are the big palliative research questions a North East collaborative should address? Understanding palliative care/definitions/public awareness Scoping commonalities/differences between disease groups Geographical (focused within region but also nationally/internationally) Palliative & end of life care clinical to death/dying influences Cross, cultural approaches to palliative/end of life care Inequality in service provision (i.e hospice bed) Future planning, PPOD, etc Delivering EOL care- Deprivation, Rural communities, Epidemiological issues Pathways of care- Borderlands initiative Why conversations relating to end of life issues aren t routine/ normalised? Societal attitudes Managing interplay between specialist teams and palliative care End of life care- medical vs public health Frailty- sudden death- still birth Where people want to die? focused within region but also nationally/internationally Decision making- advance care planning- LTC System design- public engagement Bereavement LIN > Alliance > 70 (apply to NE setting (unequaliy) What is the experience of the patient and how can we improve it? How do we best engage the public with questions about palliative and end of life care? How do we apply participatory governance to our research? What are the unreserved areas of palliative care? And why? What information is available to make decisions? What isn t available? How many of those who died received palliative care? What did it consist of? How was it implemented? 1
2. What infrastructure is in place and what is needed? In place: Good will Enthusiasm Diverse skills Collaboration (profs, institutions etc.) Multi-disciplinary/ multi professional pharmacists 5 universities masters programmes partnership NHS trusts/ clinicians Palliative and end of life care network Hospices Steering group- representation from disciplines? Public representation? Political structure health and wellbeing boards Data linking/ already collected Shared decision making person centred core NE leader PEALS HIS Institute of Aging and Vitality Needed: Database Intensity Funding Communication-Sharing-Transparency Money (backfill) Hub (Building? Virtual?) Partnerships Political support Publications Coordination Full time academics Career researchers Clinicians Permeability Clarity on focus Inter disciplinary research across faculties 2
Intellectual sandpit Registrars research group: needs support from senior clinicians and universities No professor of palliative care: no career path established. blank spot on the map If you re not in a research post there are barriers 3. What funding sources are available for palliative care research? NIHR RFPB Charities Trusts (ie. Wellcome) Research council Philanthropic Funders Private sources (companies) Universities NHS Collaborative network bid CLAHRC Health foundation CCG s STP Clinical networks Universities Marie Curie Alzheimer s Society Abbeyfield ESRC AHRC Big Disease Charities Dunhill Medical Trust Funding for infrastructure FUSE 3
4. What opportunities for multi-disciplinary and mixed methods approaches do you think are available for end of life research in the North East? Is there scope for intervention trials in palliative care research? Yes! But lots of practical challenges Scope for everything but everything has its place Trust (Universities) Good networks Qualitative and quantitative good balance needed Capacity building who is coming forward to do this? NIHR NCCC/JCUH portfolio links Disease groups COPD, neuro, cancer (needs mapping and we need to find a shared language) Methodological expertise mapping, trials, health economists Needs people at highest level to discuss GDPR and how to share data Requires forward planning- many barriers to using patient data for research purposes Need a regional data sharing arrangement Academic / collaborative / co-productive / co-design Qualitative++ Quantitative public engagement to influence Mixed data analysis If you have any queries, or anything to add to this, please contact Emma Wharfe at emmawharfe@stoswaldsuk.org 4
Appendix 1 Following the event, two surveys were sent to invitees. One survey was sent to those who attended the event for further feedback, and the other survey was sent to all those who were invited to the event, but were unable to attend. We had 7 responses to the former survey (summary below) and 0 responses to the latter survey of those who were unable to attend. 1. What are the big palliative care research questions a North East collaborative should address? Interventions/Studies that address inequality of access to palliative care for hard to reach groups (>85, dementia, non cancer diagnoses, homeless), advance care planning and death in usual place of care Some very good ideas outlined at the meeting itself as well as National Guidance available as highlighted. No further ideas. What problems are facing palliative care in the North East? (patients/services) 2. How should palliative care services in the North East adapt to an ageing population? These are not specific research questions but I do not believe we can formulate good research questions without identifying the problems we face and need to resolve. How to meet the needs of the most socially deprived. I'm interested in professionals' values in end of life care including assisted dying How to build first and foremost, breadth of research to include practice priorities, clinical service design and implementation of innovations and also socio-cultural perspectives 2. What infrastructure is in place and what is needed? At Newcastle Hospitals Palliative care research does not have a suitable "home" in the current research directorate structure. I attempted to participate in a national study for patients with neurological conditions and struggled to find a research team in the current structures willing to help (not cancer - SPC sits in clinical directorate cancer services) There is plenty of expertise around. It simply needs brought under one umbrella or hub. Multiple separate infrastructures exist incorporating national/local charities, NHS Trusts, Universities, etc. These need to be linked in a way that is meaningful to both the professional community and the public. I personally feel a specific geographical location will assist with development of a sense of identity. This could potentially rotate, between University sites for example Would be good to work collaboratively across the hospices. The output of the trainees research group could increase massively with formal support - they could achieve mush more than they have done previously and would be better equipped to take part in research and support it in future There seem to be three key organisations, Northumbria NHS Trust, Northumbria Uni and PEALS at Newcastle Uni, We have a core group already who should take this forward Muliti-disciplinary voices 5
3. What funding sources are available for palliative care research? No idea, I have applied for green shoots and failed, have also tried to get study off the ground and failed. No dedicated time within NuTH palliative care services As outlined at the meeting 4. What opportunities for multi-disciplinary and mixed methods approaches do you think are available for end of life research in the North East? Is there scope for intervention trials in palliative care research? I hope that the research collaborative will incorporate mixed methodologies. Comments from the symposium that stood out to me are: - We need to stick to our strengths initially (start low and go slow!) - There are professionals in allied disciplines from whom we could gain experience and eventually expertise in quantitative research. Supportive infrastructure, for example statisticians, would be available. I think we should consider intervention trials too. think there is support in the university and other departments e.g. oncology to do this 6