VOICE: Science for advocates – Quality advocacy needs quality education
2014 Conference
Abstract: Independent Cancer Patients’ Voice (ICPV) is a patient advocate group led by patients for patients. We bring the views and experience of cancer patients, their families and carers to the cancer research community. Our mission statement is that clinical research is improved by patients being partners with clinicians and healthcare professionals, rather than passive recipients of healthcare.
Members of ICPV are actively involved in many areas of research. To facilitate and enhance our role in these activities, members aim to understand the fundamentals of cancer, study design and current areas of controversy and research.
Working with the internationally renowned Barts Cancer Institute (BCI) we have developed a tailor-made course which provides a week-long intensive training in basic cancer biology, introduction to research terminology and study design, and critical evaluation of research proposals and scientific papers. This course VOICE (Vision On Information, Confidence and Engagement) Science for patient advocates is unique, the only course of this type in the UK.
To date, patients have had very little involvement or experience of laboratory based research which can cause challenges for patients and carers, who often have a limited understanding of cancer biology.
Researchers at BCI and members of ICPV therefore worked in partnership to develop a 5 day training course for cancer patient advocates which aims to lead patients through the research process beginning with basic biology, through to experiments in the lab and on to discussing clinical trials.
In addition to attending lectures and performing experiments participants were able to meet and speak with cancer scientists. We believe that this project is the first of its kind in the world to offer people affected by cancer an opportunity to spend time in laboratories in order to build a practical understanding of cancer biology.
The inaugural course took place from 9-13 September 2013. Early feedback suggests that participants are more confident about discussing laboratory based research in their roles as advocates having gained a better understanding of how work is done by laboratory-based researchers. An additional impact is that scientists who were involved in the course have been both motivated and inspired by their contact with participants.
We have done a six month follow up of participants to assess the longer term impact of the course, and will be repeating it in 2014.
For more information visit the ICPV website
Authors
Grayson ~ Margaret
Margaret Grayson is a member of ICPV (Independent Cancer Patients' Voice) - a patient advocate group promoting the value of medical research to public health and national economy. Margaret is Chair of the Northern Ireland Cancer Research Consumer Forum and has been involved in partnering with researchers since 2010. Before retirement, Margaret was a therapy radiographer; she has an MSc in Counselling and post grad in Psychotherapeutic studies with a particular interest in the psychological aspects of cancer diagnosis, treatment and survivorship. Margaret was diagnosed with breast cancer in 2004 and believes research is core to the NHS - research that is relevant, useful and of benefit to both the NHS and those who use it.
View all articles by this authorHanley ~ Bec
Bec Hanley, Co-director, TwoCan Associates. Bec Hanley is interested in how to help researchers summarise their research in plain English. She is working on a project looking at plain English summaries for NIHR research grant applications. She has reviewed summaries for the Research for Patient Benefit Programme and written them for the Medical Research Council.
View all articles by this authorStobart ~ Hilary
Patient Advocate, Independent Cancer Patient's Voice. Hliary Stobart has worked as a hospital physicist in radiotherapy in the NHS, and for a year in Iceland, followed by 20 years working in IT system administration and management in Cambridge. She was diagnosed with breast cancer in 2009. A look from a patient view at what research has achieved, but still needs to do, in the treatment of breast cancer over the years since she was a hospital physicist, led her to volunteer for a public and patient involvement role at the National Cancer Research Institute (NCRI) Gynae Clinical Studies Group in 2010. Since then she has also become involved in the NCRI radiotherapy initiative, CTRad, joined ICPV (Independent Cancer Patients' Voice), trained to take consent as a volunteer at the Nottingham Health Science Biobank, and joined the East Midlands Research and Design Service as a lay reviewer.
View all articles by this authorWilcox ~ Maggie
Maggie Wilcox is President of ICPV (Independent Cancer Patients' Voice) and lay member of Exec of Confederation of Cancer BIobanks, several trial management groups and member of local research group and the Consumer Liaison Group. With INVOLVE she took part in the working group on patient and public involvement (PPI) in the new Health Research Authority and is a member of the Stakeholder Group of the Human Tissue Authority. She has benefitted from advocacy education in the USA and once of the aims of ICPV is to provide similar courses here in the UK - VOICE is the latest achievement of ICPV in providing appropriate education for cancer patient advocates.
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