Public and patient involvement
What is Public and Patient involvement?
Public and patient involvement is more commonly known as PPI. The term “public” refers to all patients and persons who use health and social care services, this includes members from organisations that represent people who use these services. PPI generally volunteer to join a group and or organisation where they can use their expertise to influence research, national guidelines, and projects like thisisGO.ie along with shaping policy.
The Irish Society of Gynaecological Oncology (ISGO) is an all-Ireland venture encompassing all gynaecological cancers. Members include lead clinicians, nurse specialists, scientists, and allied health working in the area of Gynaecology Oncology in Ireland. The society meet several times a year focusing on the full continuum of cancer care; from prevention to diagnosis, treatment, living with and beyond cancer and palliation.
The ISGO realises the importance of including the Public and Patient voice in the management of all aspects of Gynaecological Oncology. The aim is to have a strong partnership with our patients and therefore achieve more as a group and encourage better patient experience. In December 2016 The Irish Society of Gynaecological Oncology Patient and Public Involvement Group or ISGO-PPI as it is referred to was born.
The Irish Society of Gynaecological Oncology Patient and Public Involvement (ISGO-PPI) aims to meet twice a year in person when it has been safe to do so. ISGO-PPI members can attend scientific conferences in Ireland and Internationally.
Members are invited to partake in various working groups nationally and internationally and have a real opportunity to shape and influence research and policy. Please see our New Letters for further details. Most of the correspondence is done through email.
Invitation to partake in future projects
The ISGO-PPI would like to invite you to become part of a dynamic group of individuals who have been directly impacted by a gynaecological cancer or have a special interest within this area of health care.
Your voice and experience matter to us, working together we can bring about change.
The platform (on-line portal) which was developed ‘by patients for patients’ in partnerships with healthcare professionals, was launched in Sept 2021 and is aiming to change the landscape in how we support those with gynaecological cancers, including cervical, ovarian, endometrial, vulval and vaginal cancers. It also has a planned portal for those impacted by hereditary cancers such as BRCA and Lynch Syndrome. It is hoped that by the end of 2022 the site will be finished.
Currently there are still significant deficits in the provision of information and support for women affected by gynaecological cancer the team at thisisGO.ie are working, whilst acknowledging the power of cooperation and collection action, to provide this one-stop shop for these women, their families and Health Care Providers via thisisGO.ie
The platform includes over 140 different articles, videos, podcasts, useful resources, symptom tracker, decoding the science and service directory content. These materials address every stage of the specific cancer diagnosis, treatment and life with and after this cancer. The platform also supports Health Care Professionals in their clinical practice, offering useful articles such as How to Break Bad News and How to take a Sexual History from a Patient.’
thisisGO.ie is kindly supported by the Irish Cancer Society through its Women’s Health Initiative and by UCD Clinical Research Centre (CRC), OvaCare, GSK, Pfizer and patient donations.
Please see https://thisisgo.ie/
THE LIVED EXPERIENCE OF PPI
THE DIAGNOSIS DELIVERY PROJECT
As part of the work of the Irish Cancer Society’s Women’s Health Initiative a series of workshops were run looking at all aspects of survivorship. One workshop looked at the initial diagnosis and breaking bad news. During this discussion one of the PPI participants, Kim Hanly spoke of a diagram that her surgeon had given her, that he had drawn, that she still referred back to many years after her surgery. We loved this idea and working with the gynaecological oncologist and the clinical nurse specialists in UCD teaching hospitals to create the images you see below. Currently in the Mater Misericordiae University Hospital and St Vincents University Hospital every woman with a new diagnosis of gynaecological cancer gets the relevant image to take home as well as one going into their chart.
The feedback has been tremendously positive from patients and doctors. It improves understanding, compliments the doctor patient relationship and is helpful for recall when explaining the diagnosis to other family members. In 2023 it is hoped that these images will be available in all gynaecological oncological centres of excellence in Ireland. Currently the images are being discussed at an international level with the view that they become standard practice for all women impacted by gynaecological cancers.
How to get in touch
The ISGO-PPI is run by Dr Sharon O’Toole (Scientist) and Yvonne O’Meara (Social Scientist). If you are interested in becoming a member of this dynamic group, you can email firstname.lastname@example.org