Members of the FOxTROT PPI Group
Alison lives in Yorkshire and has an active interest in health and social care research, holding a PhD in Social Policy and a Masters in Disability Studies. Alison is specifically interested in how the use of ‘big data’ can improve the quality of life and outcomes for patients.
Alison has co-written several peer reviewed papers around how PPI can be effectively and meaningfully integrated into clinical trials. Alison is currently involved with several organisations including National Institute of Health Research (NIHR), Cancer Research UK (CRUK), University of Kent, and the Royal Marsden Hospital. Alison also holds a role in the strategic oversight of health and social care inspections and regulations.
Libby has twice been diagnosed with cancer and has been a carer for both her husband and mother following their cancer diagnoses.
These experiences helped her serve effectively as a Research Insight Panel Member for Cancer Research UK and a Patient and Public Involvement (PPI) representative for the CRICK, and DATA-CAN, the Health Data Research Hub for cancer.
Libby is a Lay Panel member for the University College London Hospitals Biomedical Research Centre and reviews proposals for the National Institute for Health Research (NIHR) Evaluation, Trials and Studies Coordinating Centre. She acts as a Review Panel Member for UCL’s PPI Bursary Fund and is a PPI representative for a five-year NIHR research programme that is testing out the use of new molecular diagnostics to identify bacteria and antibiotic resistance. Libby is also a PPI representative for a three year study on student diversity in medical training.
Libby’s professional life has been dominated by the desire to help people in the UK and international charitable sector to understand the process of designing, conducting and disseminating research in order to improve beneficiary outcomes and develop policy. This has been achieved through her roles as Director of The Community Research Advisory Centre at North London University, as the founder and Director of Charities Evaluation Services and then as Director of Amber Analysis.
A wife, mum to three, and grandmother to two, I thought my life was OK. Living in Scotland, interested in Scottish Rugby and actively involved in my local church I was happy with where I was at my stage of life, but…
In April 2015, I began a 6 week roller-coaster, which had started because I did my bowel cancer screening test. The speed with which NHS Scotland moved was breath-taking, and there was only one week during that time when I wasn’t having bloods taken, scans done or meeting with various medical personnel.
The treatment I had was standard, surgery followed by a period of rest before a series of chemotherapy sessions, regular blood-taking, and even more scans.
I have been lucky in that after 3 years I was considered to be cancer-free from stage 3 cancer.
Since that time, I’ve been heavily involved with Bowel Cancer UK as a volunteer getting the message out about the importance of screening tests, and trying to reduce the risks of developing bowel cancer.
I’m also a User Reference Group Member of the Integrative Cancer Epidemiology Programme which is involved with a wide range of cancers and methods to help reduce the likelihood of developing certain cancers.
I firmly believe that the pioneering work of the FOxTROT trials will help to improve bowel cancer treatment.
Although it’s been 16 years since my initial cancer diagnosis, its impact continues to be felt. At the time, treatment for bowel cancer involved surgery with the formation of an ileostomy and chemotherapy. More than a decade later, a further period of ill health resulted in the diagnosis of a high-grade duodenal adenoma, which required additional surgery. My carers respected where I was coming from and my outcome was favourable but this is not the same for all hence the need for research such as FOxTROT.
My foray into patient and public involvement (PPI) started simply enough. Whilst I was recovering from surgery, I was approached by a research nurse which led to me joining the South West London Cancer Research Network. I have since become involved with the National Cancer Research Institute, National Cancer Action Team, National Research Ethics Committee, Bowel Cancer UK and patient groups at the Royal Marsden to name just a few organisations.
This dynamic network has supported me in fulfilling my goals as a PPI representative, with the aims of promoting the lay view in multidisciplinary teams, reviewing numerous funding applications, research proposals and patient facing documents.
I retired as a midwifery manager in 2007, but have used my management skills to make selective decisions, balance a variety of projects and facilitate the desired outcome, that of patient benefit. Whilst all this seems like work, sharing the lived experience and ensuring all people affected by cancer have the most appropriate care is not, in summary, no one size fits all!
Pete Wheatstone (Chair)
Pete lives in Yorkshire and is the chair of the Patient and Public Involvement and Engagement Group and is also a member of the FOxTROT Management Group and Steering Groups. He spent a number of years in a variety of Technical Sales & Marketing and IT roles before being diagnosed with Stage 3 bowel cancer in 2014.
Following his recovery, Pete became involved in Patient and Public Involvement (PPI) roles within cancer-related and healthcare data research programmes and organisations across the UK and Europe. He chairs a number of PPI Groups and sits on many research management and steering groups across the UK. He also works with Bowel Cancer UK and Bowel Research UK and other prominent cancer charities.