Mr Simon Knight, who is based at the Oxford Transplant Centre, part of the Nuffield Department of Surgical Sciences, has been awarded funding to develop an online patient advisory panel for renal and transplant research in Oxford, which will provide a patient perspective on upcoming research projects and patient materials.
The importance of involving patients in the design of clinical trials and other research is being increasingly recognised. The online advisory panel will provide a forum in which patients can feed back about patient information resources and study ideas.
‘Involving patients at an early stage helps to identify barriers to recruitment by spotting areas of study design that will make a study difficult or unacceptable to patients,’ said Mr Knight, who is working in conjunction with the renal and transplant research nurses and nephrologists at the Oxford Transplant Centre to develop the project. ‘It also helps us to make sure that the outcomes that we are measuring are those important to patients, and that study documentation is easy to understand.’
The online patient forum will be housed within the existing Oxford Transplant Foundation website. The site will allow patients to register their interest in taking part in the online panel, and demographic data will be collected on registration to allow patients to be allocated suitable projects for review.
‘The problem that we have in renal and transplant is that our patients are referred and followed-up over a large geographical area,’ explained Mr Knight. ‘This makes putting together face-to-face patient and public involvement (PPI) sessions difficult, and means that many interested patients cannot take part. We therefore came up with the idea of an online patient forum, where researchers or clinicians can upload study documents and information leaflets, and relevant patients can comment on these to provide feedback.’
Each research project on the site, which is due to go live later in the year, will have documents for review, such as patient information leaflets, consent forms, study design ideas and plain English summaries. Participating patients will be asked for specific feedback on aspects of these documents that will help in the development of grant applications and patient materials for clinical research. They will also be able to submit ideas or areas of interest for future research projects.
It is hoped that the online patient advisory panel will continue to inform the design of research projects and materials in the Oxford Renal and Transplant Units for many years to come, and that it will provide a blueprint for the development of similar initiatives in other areas within the University and NHS Trust.