Background: Liver transplantation for cancer is evolving offering new opportunities for selected Neuroendocrine Cancer patients in terms of improvements in survival and quality of life. According to the British Medical Association, good quality patient information is fundamental to effective, patient-centred, quality care. It rightly considers patients as partners in their care, empowering them to have a better understanding of their health or illness, to make informed choices and decisions regarding their treatment, and self-manage their conditions as appropriate. Co-production involves people who use healthcare services, carers and communities in equal partnership; engaging groups of people at the earliest stages of service design, development and evaluation. It acknowledges that people with lived experience of a particular condition are often best placed to advise on what support and services will make a positive difference to their lives. (NHS England)
Methods: In partnership with neuroendocrine cancer and liver transplantation experts at Queen Elizabeth Hospital Birmingham, Neuroendocrine Cancer UK (NCUK) worked with with patients, their families and advocates, to develop a patient information resource for those with NET-related liver metastases, being considered for liver transplantation. Development aims were to produce a resource that was grounded in expert clinical information: accessible and appropriately matched to patient (and family) informational needs. Following informal discussions with the wider Neuroendocrine Cancer community - through a variety of forums - a topic-specific workshop was held to explore informational needs. A Working Group of patients, their families and advocates was subsequently established, with a feedback and fact verification communication link with the Birmingham team confirmed. The working group membership included patient experience of liver transplantation, consideration for the programme and a patient advocate with senior nursing experience in both neuroendocrine cancer and liver transplantation.
Results: A finalised version was approved, by all parties, in August 2023: and was published, by NCUK via their website, during Transplantation Awareness Week September 2023.
Conclusion: Done well, co-production helps to ground discussions in reality, and to maintain a person-centred perspective (NHS England) - and shows how the lived experience has a unique and valuable contribution to make in information design, development and evaluation. PIL available at: https://www.neuroendocrinecancer.org.uk/wp-content/uploads/2023/03/Sep-2023-completed-Transplant-Factsheet-PDF.pdf