From 4 to 120 in 2 years Barbara Moore Cancer Research UK Senior Nurse 3rd November 2011

Development of opportunities for palliative care patients to be involved in research The background Progress so far Where we go from here

The background Wales Cancer Trials Unit (WTCU) study development: (Palliative Care Research Strategy for Wales 2010-2015) National Cancer Research Institute (NCRI) palliative studies group survey 2009 Dr Anthony Byrne, WCTU and Wales Cancer Research Network (WCRN) collaborate to identify how to support recruitment in SE Wales - steering group established January 2009 funding secured for a research nurse for a year Cancer Research UK Senior Nurse time identified to lead the WCRN team Portfolio of potential studies for SE Wales is researched WCTU works with investigators to develops studies and has a PCR strategy for Wales NCRI survey in 2009 – networks that have been successful have identified motivated clinicians and have dedicated PCR staff. Lack of open multicentre studies a problem So in Wales there was a process to develop high quality studies but supporting recruitment was then addressed

Regular steering group meetings Collaboration, communication, commitment, reflection and review Regular steering group meetings Actions: Communication channels established with England and Scotland and National Cancer Research Network (NCRN) Networking and training opportunities identified Recruitment at cancer centre and other NHS site in SE Wales Research nurse reflective diary Electronic newsletter for palliative care practitioners Research study open to recruitment in Hospice Annual report from WCRN to Cancer Services Coordinating Group (CSCG) December 2009 further funding for nurse time secured from NISCHR WCRN website to include portfolio of studies and newsletters

Consensus meeting A consensus meeting of palliative care research colleagues was held in September 2010 in Cardiff Colleagues from Edinburgh, London, Cardiff, and NCRI Communication established and ongoing

Reflective Diary Maintained by research nurses Has identified when reflection has changed practice Over-riding is the need to fit the trial to the care pathway, to be adaptable, open and high profile

2009-4 pts 2011-120 pts RECRUITING STUDIES Radiotherapy regimes for spinal cord compression Fatigue Bone pain Breathlessness The role of exercise with cachexia CLOSED STUDIES Pain assessment tool Analgesia PROSPECTIVE STUDY Opioid induced constipation

Recruitment Graph April 2010 – March 2011

Next steps Following a pilot road show at Gregynog 2010 road shows are taking place to highlight study development and recruitment to clinical teams and ensure research awareness This has allowed identification of sites where research staff input is best placed Development of studies is paramount to ensure ongoing recruitment

Single point of contact Dr Amanda Woodward Palliative Care Portfolio Developer woodwardaj@cardiff.ac.uk 02920687268

Thank you, diolch yn fawr Wales Cancer Research Network Palliative Staff