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Using the Clinical Research Network for psychosocial cancer research: lessons learned from two observational studies
  1. Penny Wright1,
  2. Deborah Fenlon2,
  3. Helen Jones1,
  4. Claire Foster2,
  5. Laura Ashley3,
  6. Kim Chivers Seymour2,
  7. Galina Velikova1,
  8. Ikumi Okamoto2 and
  9. Julia Brown4
  1. 1Psychosocial Oncology and Clinical Practice Research Group, Leeds Institute for Cancer and Pathology, University of Leeds, Leeds, West Yorkshire, UK
  2. 2Macmillan Survivorship Research Group, Faculty of Health Sciences, University of Southampton, Southampton, UK
  3. 3School of Social, Psychological & Communication Sciences, Faculty of Health and Social Sciences, Leeds Metropolitan University, Leeds, UK
  4. 4Clinical Trials Research Unit, Leeds Institute of Clinical Trials Research, University of Leeds, Leeds, UK
  1. Correspondence to Dr Penny Wright, Psychosocial Oncology and Clinical Practice Research Group, Level three Bexley Wing, St James's Institute of Oncology, St James's University Hospital, Leeds, West Yorkshire LS9 7TF, UK; e.p.wright{at}leeds.ac.uk

Abstract

Background Patient recruitment to psychosocial oncology research has increased but the many studies have been single-site or small-scale. The National Institute for Health Research Clinical Research Network, supports National Institute for Health Research portfolio studies through provision of research staff for recruitment and follow-up. These studies are usually clinical trials of an investigational medicinal product. Psychosocial researchers have little used this resource.

Process We report the processes followed and experiences of two psychosocial research teams who recently used the Clinical Research Network, to undertake patient recruitment to two prospective observational studies: electronic Patient-reported Outcomes from Cancer Survivors study (ePOCS) and the ColoREctal Wellbeing study (CREW). Both research groups employed different approaches to using Clinical Research Network support.

Outcomes ePOCS secured Comprehensive Local Research Networks funding to appoint ePOCS-specific study research nurses. CREW obtained research support through the National Institute for Health Research Cancer Research Network. Recruitment targets were met (ePOCS n=636; CREW n=1055) despite logistical, administrative and bureaucratic challenges in setting up the studies. Research nurses feedback was mainly positive (ePOCS study only). Top tips for establishing and running psychosocial studies with Clinical Research Network staff are provided and suggestions given for advancing multicentre complex psychosocial studies.

Conclusions Some challenges were similar to those in delivery of clinical trials of an investigational medicinal product. The pros and cons of being involved in ePOCS from the research nurse perspective are also described. Overall the approaches used were successful with both studies reaching their recruitment targets.

  • Cancer
  • Methodological Research
  • Survivorship
  • Received 8 November 2012.
  • Revision received 11 June 2013.
  • Accepted 24 July 2013.

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  • Received 8 November 2012.
  • Revision received 11 June 2013.
  • Accepted 24 July 2013.
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