Current projects
Organ donation has increased in the UK, however, the demand for organs for transplant exceeds the number of organs available. One way of increasing organ donation is by changing the way people consent to donate organs after death by adopting a ‘soft opt-out’ system. This is where it will be presumed that people are happy to donate their organs after their death unless they have indicated otherwise, by registering their decision to opt-out. People will still be encouraged to register their decisions to donate as usual. This way, decisions about organ donation are given to individuals to make during their life, not to their families after they die. By changing to a ‘soft opt-out’ system, hopefully more people will donate their organs and more transplants can happen.
Wales moved to a soft opt-out system in December 2015 – meaning that since 2015 most adults living in Wales are presumed to want to donate their organs unless they opt out on the NHS organ donor register, or tell a relative or close friend that they do not want to be an organ donor. Consent rates in Wales have improved, however, implementation of the new system was not straightforward. Specialist Nurses in Organ Donation found the new system difficult to navigate; people in Wales did not fully understand the changes; and family member(s) continued to think that they were the decision makers for organ donation after their relative died.
In 2020/21 Scotland and England will implement soft opt-out systems of organ donation similar to Wales. The Department of Health and Social Care has commissioned PIRU to undertake an evaluation of the new legislation – the Organ Donation (Deemed Consent) Act, 2019.
The evaluation is being undertaken in collaboration with colleagues at Bangor University who completed a similar study in Wales, and the Intensive Care National Audit and Research Centre (ICNARC). We are also working closely with NHS Blood and Transplant on the study. For further information, contact Nicholas Mays.
The purpose of the study is to learn more about the impact of the legislation in England on: consent rates; number of transplants; public attitudes and behaviour; and the experiences of family member(s) and close friends who are approached about organ donation after their relative dies. The evaluation will also explore the impact of the change in legislation on NHS staff, clinical and managerial; and Black, Asian, and Minority Ethnic (BAME) members of the public and other underrepresented individuals and communities.
We will do this through: surveys of the public, case studies of four NHS hospital Trusts in England, interviews with family members, focus groups with staff, reviews of NHS data, statistical analysis, and by talking to a range of people interested in organ donation.
The study will provide information about the barriers to organ donation, support service design and delivery, and inform policy makers about the impact of the new system. Our ultimate goal is to learn how the new opt out system in England works for those whose organs will be donated, the relatives/friends of those who have died, and the hospital staff who deal with organ donation.
We will share the results by presenting at events and conferences, producing reports to government and the public, and writing academic articles. We intend to publish the project protocol in a peer-reviewed journal and will publish interim reports annually. The final reports will be made available towards the end of 2023.