Welcome from our Co-Directors

From

Dr Adnan Sharif, Co-Director (Research)

Karen Rockell, Co-Director (PPIE)

A strength of the Network is its collaboration with the British Transplantation Society, NHS Blood and Transplant and charities, such as Kidney Research UK, who have been strong in their support. We are continually looking to build links with other charities, so together we can help make a difference.

Central to our work is the valuable partnership with patients, donor families and public representatives. We are continuing to work very hard to ensure that this patient and public involvement and engagement (PPIE) partnership is inclusive and representative, and that their voices are heard.  The PPIE support the Network can offer to researchers, clinicians, allied health professionals, and others in their research is invaluable.

We have undertaken a survey to examine barriers to research in the UK, both for researchers and for patients. The next phase of work will be to begin to address some of the barriers.  Key to this is undertaking a patient-led priority setting exercise to identify areas for research.  We hope that all interested colleagues and patients will join us in these discussions to transform these priorities into reality to make a difference to organ donation and transplantation.  We will be publishing the outcome of this exercise – one that will demonstrate a powerful message that the Network is patient-focussed, serious and credible about its work and the difference it can make.

We are also working on developing plain language summaries of organ donation and transplantation research, and for these to be housed in one central accessible on-line place. We believe the availability and accessibility of plain language summaries will result in patients, their families, carers, and the public, being able to easily and readily understand research.  Summaries offer an improved level of transparency about how, what, where, and why, and to what end research is conducted.  In turn, this should result in raising the awareness of the importance of organ donation and transplantation, enable people to make informed decisions, and hopefully overall increase the number of suitable donor organs for transplantation.

We continue to seek funding and sponsorship to undertake work that will further build the network infrastructure, research platforms, and support our PPIE work.  Further details of our work in these areas will be published on the website.

We look forward to working with you all and we always welcome more people joining our Network.

We would also like to thank the British Transplantation Society for their generous support to fund the creation of this website.