How the Clinical Research Network can help you be research ready! Delivering clinical research to make patients, and the NHS, better

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1 How the Clinical Research Network can help you be research ready! Jeremy Kirk Clinical Director Andrea Morcom Research Delivery Manager Delivering clinical research to make patients, and the NHS, better

2 Where we fit in Supports facilities for research (e.g. Biomedical Research Units) National Institute for Health Research The Clinical Research Network: We provide the practical support researchers need to run clinical studies in the NHS, so that more studies can happen, and more patients can take part Commissions and funds NHS and social care research Trains and develops researchers

3 The Clinical Research Network: What do we do? provide infrastructure (data managers, research nurses etc) provide advice across the whole study pathway help researchers to set up clinical studies quickly and effectively support the life-sciences industry to deliver their research programmes; provide health professionals with research training; work with patients to ensure their needs are at the very centre of all research activity 3

4 The Clinical Research Network: How are we organised? 1 national network 15 local geographies Mapped to Academic Health Science Networks Work closely with all local partner organisations Recently (1 April 2014) reorganised from 8 separate networks and merger activities are still on-going 4

5 Where is palliative care?

6 The Clinical Research Network: How are our activities measured? The network has a number of national objectives High Level Objectives Specialty Specific Objectives One of the cancer Specialty Specific Objectives includes increasing number of care providers participating in research Number of other Specialty Specific Objectives cut across palliative and supportive care 6

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8 Research in palliative care: can hospices afford not to be involved? What are the barriers to doing research associated with hospice care? 3. Hospices appear to be fairly isolated and do We can enable you to work together and work not benefit with from you optimal research partnerships with the NHS or university sectors. 7. Lack of infrastructure and resources to support research. This is what the CRN was set up to do 8. Limited funding to undertake research in hospice, palliative and end of life care. We can help provide research delivery staff for NIHR CRN portfolio studies

9 What are the barriers to doing research associated with hospice care? 11. Poor skills in research project management. Training one of our principal 12. Poor understanding of the importance of functions research by staff and lack of skills in recruitment Good Clinical of patients Practice and (GCP) families 2 palliative into care specific events this year studies and clinical trials. BRTC free to all researchers regardless of 16. The nature of undertaking funding stream research with patients with Communicating advanced in diseases RCTs course and their families is challenging although this is not insurmountable. Critical mass of staff bring in specialist trainer or we can facilitate you to learn from each other

10 What are the barriers to doing research associated with hospice care? We can help you buddy up with local NHS 14. Lack of clarity in ethical research and research organisation or RM&G function of CRN and governance procedures, especially indemnity insurance provide you with SOPs (relative to the NHS). 18. Very few academic research centres, with sufficient critical mass and We track are record not a direct of research substitute leadership, for working with academia but we can help with critical that are able to offer mass mentorship and sign post in you research and develop programmes of work within hospices. 13. Paternalism and gate keeping in relation to inviting patients and families to participate in research.

11 Future of Palliative Care CRN support in CRN: WM Management support Clinical Leadership 1 PA (31 st specialty) Development support senior research nurses 2 x 0.5 wte senior research nurses Recent investment of extra 0.5 wte senior research nurse Portfolio support 0.4 wte band 5 Study conduct support 1.2 wte research nurses in south of geography Small amount of data management support Additionally palliative care teams in Acute Trusts should be able to access Trust based research delivery staff 11

12 National Cancer Patient Experience Survey Research questions introduced for the first time in cycle Since your diagnosis has anyone discussed with you whether you would like to take part in cancer research? 33% of patients said that taking part in research had been discussed with them If yes, were you glad to have been asked? 95% of those patients who had research discussed with them said they were glad to have been asked; If no, would you have liked to have been asked? 53% of those patients who said they were not asked, said that they would have liked to have been asked;

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