Patient and public involvement and engagement (PPIE) are core components of S-CORT activities. Our PPI subgroup have a mandate to develop a federated Patient Involvement and Engagement Strategy, ensure that the patient is embedded in all S-CORT activities and contribute to health/socio-economic evaluation of stratified medicine in CRC.
Meet the S:CORT PPI subgroup:
Ed Goodall is a biostatistician with extensive experience in many application areas. He is a former Head of a large Biometrics Department with responsibilities for the design and analysis of experiments and surveys for Queen’s University Belfast and the Department of Agriculture and Rural Affairs in Northern Ireland (DARD). The European Society for Veterinary Epidemiology and Preventive Medicine of which he is a former President elected him as an honorary lifelong member, a rare distinction for a clinical biostatistician. In recent years, he has moved to medical statistics with special expertise in ophthalmology and forensic and legal medicine. (Reviewer of the year 2014-15 for Journal of Forensic and Legal Medicine); he has also taught courses in cancer survival analysis at tertiary and postgraduate level. Ironically, he was himself diagnosed with colorectal cancer in 2011 and subsequently underwent radiotherapy and two bouts of major surgery and is currently in remission. In 2014, he joined the Northern Ireland Cancer Research Consumer Forum (NICRCF) and has contributed to many projects for the prevention, diagnosis and treatment of a wide range of cancers. He has authored or co-authored over 130 scientific papers and a number of textbooks. In his spare time, he has also published four fiction novels.
- Margaret Grayson
Margaret Grayson is Chair of the Northern Ireland Cancer Research Consumer Forum, and is a Personal and Public Involvement (PPI) representative on the NI Cancer Trials Network (NICTN) Co-ordinating Centre Executive Committee and NICTN Steering Group. Margaret was diagnosed with breast cancer in 2004 and has been involved in partnering with researchers since 2010, including membership of study steering groups and HSC Research & Development Division PPI Group; and co-applicant on an NIHR clinical trial.
She represents NI on the National Cancer Research Institute PPI Steering Group. Margaret is a member of the Research and Innovation Sounding Board with Cancer Research UK. She is also on the Patient Advisory Panel for the CRUK £20 million Grand Challenge Award. Margaret is a trained facilitator with Macmillan Building Research Partnerships and a member of Independent Cancer Patients’ Voice.
Margaret is a member of the S:CORT Patient/ Public Involvement/ Engagement sub group. She feels S:CORT is very important in looking at precision medicine approaches to develop better treatment options for people diagnosed with bowel cancer.
- Chris Lovett
Chris Lovett qualified as a nurse in Sheffield, here home town and went on to work in Intensive Care, building excellent working relationships with her colleagues, expanding her knowledge, while the main focus was on the patient and their care.
Chris took time out when she had her family, during which time she helped out at her local swimming club. Her involvement in the lifesaving section (where she has achieved many awards) led to her becoming a Lifeguard Trainer for both Beach and Pool.
On returning to work she became a lecturer at the local College, working up the "ranks" and ending up as Area Co-Ordinator for Health and Social Care. She took early retirement to look after her parents, both of whom had dementia. The experience gave her an insight into social services and the care of the elderly.
In 2013, Chris was treated in Doncaster for bowel cancer. The treatment was excellent and she felt she wanted to give something back, hence her involvement with the S:CORT Consortium. Her hobbies include archaeology, and she is delighted to highlight that she can still dig despite the major surgery.
- Barbara and Mark Moss
Barbara worked as an English teacher for 30 years. At the age of 52, she was diagnosed with Stage IV colorectal cancer of the colon, which spread to the liver. She underwent several treatments of conventional chemotherapy and was then treated with Avastin, at her request. This had such a dramatic effect on her tumour that it became resectable and changed her prognosis from only palliative to possible cure. She also overcame a recurrence of the disease in her lymph nodes.
Barbara has since been an active campaigner for the best treatment to be available for colorectal cancer patients and to help them through her experience. She has spoken at the UK Parliament at Westminster and also European Parliament in Brussels. She has also written a book called, 'Who's been Peeping in my Bed?' which tells her story. She is a Patient Ambassador for Bowel Cancer UK and a member of the Board of Directors for Europacolon. She is also an advocate with Inspire2Live a member of the PPIE, a subgroup of S:CORT
Mark, Barbara's husband, has supported her through her illness. He has been through all the experience of cancer first hand. As Barbara says, "It's far more difficult for the loved ones because they feel they can't do enough." But Mark did immense things and has now continued to be present on every occasion, supporting Barbara and contributing with his experience as caregiver.
- Janet Pope
Janet Pope is the wife and former carer of Malcolm Pope. She supported him throughout the MOSAIC Trial and his cancer journey, whilst continuing with her own job of work as a Comprehensive school teacher and Head of Year. Janet was also a founder member of Velindre Cancer Centre Patient Liaison Group and, alongside Malcolm, is still an active member.
Janet has been a member of the Focus 3 Trial Management Group and continues in this role for the Focus 4 Trial. They are proud to have played a significant part in the production of the very well accepted Patient Information Sheets, for both trials. Janet and Malcolm have presented at the launch of both trials and, indeed, at the Oxford Launch of S:CORT.
- Malcolm Pope
Malcolm Pope was unexpectedly diagnosed with Duke C Colon Cancer (Stage 3) in July 1999. He had the good fortune to be selected for the Mosaic Trial and endured six months of fortnightly chemotherapy with the trial drug Oxaliplatin.
Malcolm has been left with a legacy of peripheral nerve damage to both lower legs and feet. He feels that this is a small price to pay and that he was one of the fortunate few. Following his treatment, he became a founder member of Velindre Cancer Centre Patient Liaison Group and chaired the group for the first five years. Indeed, he is still an active member. Also, Malcolm has been a member of the Trial Management Groups for the COIN and Focus 3 trials and, currently, the Focus 4 trial which is a trial in progress using stratified randomisation. Malcolm is a member of the Patient and Public Involvement Group for SCORT and presented at the launch meeting at Oxford. Most importantly he is a very proud granddad.
- Dr Sandra Irvine
Dr Sandra Irvine became involved in PPI following the death of her husband, David, from colo-rectal cancer five years ago. She is a member of the Northern Ireland Cancer Consumer Forum and the All Ireland Hospice and Palliative Care Group. Sandra acts as PPI representative on the NCRI Colorectal Clinical Studies Group and the Adjuvant and Advanced Disease Sub-group. She has acted as PPI representative and provided input for a wide range of studies with Macmillan, Bowel Cancer UK and CR-UK.
- Ruth Boyd
Ruth Boyd is Cancer Research UK Senior Nurse and a Deputy Director in the NI Cancer Trials Network (NICTN) based at the Belfast City Hospital. She is the designated Personal and Public Involvement Professional Lead for the NICTN and Belfast Experimental Cancer Medicine Centre. She works closely with the members of the NI Cancer Research Consumer Forum (NICRCF), facilitating links between patients/carers and researchers. Ruth is involved in the S:CORT PPIE Subgroup through the Consortium’s partnership with the NICRCF. Ruth describes facilitating PPI as an exciting and inspiring aspect of her role.