Taking the pulse: An interactive workshop using the example of the National Cancer Patient Experience Survey (NCPES) to encourage fairer access to research for all patients
2014 Conference
Abstract: Our consumer-led project introduced questions about research to the annual surveys of 120,000 recently diagnosed cancer patients in England.
We will outline some of the findings from that work
- 33% report having had a discussion about taking part in research
- 95%of those asked were glad to have been asked
- 57% of those not asked would like to have been
We will summarise our analyses of patients’ responses which point up
- inequalities in who gets asked
- variations in research awareness
We will debate and capture some of the questions that have emerged for us as a group of patients, researchers and policy staff working together on the findings and on the issues they raise for us.
Is 33% “good” in terms of access to research? How do we know? What’s the benchmark? Should there be an ambition or target?
Participants in our consumer-led workshop will learn how PPI helped generate data to tackle inequalities and make for fairer access to cancer research.
Patients may have one view, clinicians and researchers another. We know the picture for cancer patients, but what is it for patients with other illness and conditions? We encourage participants to bring issues of their own – we want to introduce this agenda, not control it.
We will draw upon the key messages from our discussions to influence policy makers and those delivering services across the changing research landscape.
Other author:
Karen Inns
Lead for Patient, Carer and Public Involvement and Engagement, National Institute for Health Research Clinical Research Network
Authors
Baker ~ Matthew
Public Representative, Quality and Outcomes of person-centred care Research Unit (QURO). Matthew is currently a self-employed education consultant. In 2009 he became involved in patient public involvement with reference to cancer research. He is involved with the National Cancer Research Institute (NCRI) Consumer Liaison Group, the NCRI Clinical Studies Group (Lung), and the Greater Manchester and Cheshire Cancer Research Network.
View all articles by this authorMorris ~ Carolyn
Carolyn Morris is one of the expert patient advocates of the Cicely Saunders Institute, King's College London. A current trial participant, she has worked on evaluations of patient and public involvement (PPI), led workshops on consumer / researcher collaborations and chairs the National Cancer Research Network's (NCRN’s) group on the National Cancer Patient Experience Survey (NCPES). Carolyn is a member of the National Cancer Research Institute's (NCRI's) Psychosocial Clinical Studies Group, the Consumer Liaison Group and the National Institute for Health Research's (NIHR's) Strategic PPI Advice, Delivery and Evaluation Panel.
View all articles by this authorPavitt ~ Sue
Co-Academic Lead, EUPATI-UK Senior Management Committee and Reader in Applied Health Research, University of Leeds. Her remit is to maximise cross-faculty translational research opportunities. In this capacity, she forges multi-disciplinary research partnerships between clinicians, academics, industry and patients; developing methodologically robust projects tailored to NHS priorities and with Patient Public Involvement (PPI) central to maximise patient benefit.
View all articles by this authorRawlinson ~ Janette
Janette Rawlinson is a Core Member of the National Cancer Research Institute Consumer Liaison Group (NCRI CLG). She is a non-smoking lung cancer survivor, with a career in international business and economic development. She serves on Sandwell and West Birmingham Clinical Commissioning Group, and is a member of NCRI's Lung Clinical Studies Group, the Consumer Liaison Group and National Institute for Health Research's (NIHR's) Strategic Patient and Public Involvement (PPI) Advice, Delivery and Evaluation Panel.
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