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This case study describes the impact of Sque's programme of research into the psychological and social concerns that impact organ/tissue donation and family members' end of life and post mortem decision-making. This work has impacted UK national policy, which guides practice and education of health professionals about the care of families who have organ donation discussed with them, and national guidance for staff responsible for care after death (last offices). It has informed public debate internationally about care of the bereaved family and how to increase the availability of organs, from deceased persons for transplants. The reach and significance of this information ranges from an international (ELPAT) and parliamentary platform to teaching volunteer service users within the University of Wolverhampton's Faculty of Education, Health and Wellbeing about the need for post mortem organ donation. This research has therefore impacted the public and healthcare professionals, locally, nationally and internationally.
This Case Study describes, inter alia, the late Professor David Price's sustained research in the broad field of organ transplantation, from which a substantial knowledge base and research expertise was developed. Its principal focus was on the availability and supply of human organs and tissue for transplantation, the continuing shortages thereof and the implications of shortfalls on quality and loss of This work has led to demonstrable policy and practice developments at national and international levels. Collaboration with policy makers, academics and health professionals across Europe has resulted in legislative developments and changes to policies and professional practice.
Until recently, there have been insufficient organs for transplantation in the UK. In 2008, the Prime Minister (Gordon Brown) signalled that, in order to remedy this shortfall, he favoured legislating for a system whereby everyone would be legally presumed to have consented to the `donation' of their organs on death (unless one opted out). Brown commissioned the Organ Donation Taskforce to explore the potential impact of presumed consent legislation on organ `donation' rates. The Taskforce, in turn, commissioned the Centre for Reviews and Dissemination at the University of York to conduct a systematic review of the international evidence. The Centre for Reviews and Dissemination has developed particular research expertise in the conduct of systematic reviews — an established scientific methodology for the conduct of meta-analyses of datasets. The Centre's research findings, in the published view of the Taskforce, provided the "most compelling" argument against a legislative change. The Taskforce ultimately argued that a system of `presumed consent' may actually have a negative effect on donation rates and may erode public trust in the NHS and Government. The alternative policy option it proposed would not only be more effective, it argued, but would avoid any negative side-effects of a `presumed consent' system. Gordon Brown reluctantly accepted this recommendation and abandoned his legislative proposal so that the alternative policy option could be given time to prove its effectiveness. In 2013, this alternative voluntary system succeeded in meeting its target of increased donations. In this way, a 50% national increase in life-saving organ donations was achieved, while a costly and challenging legislative system with its potential erosion of public trust was avoided. The University of York's research has thus helped to set the agenda for future organ donation policy in the UK.
An 11-year programme of translational research carried out at the University of Southampton into the decision making of bereaved family members regarding organ and tissue donation has led to direct impacts on health care policy and practices. The research examined why families of the newly deceased decide for or against organ and tissue donation, and what support they need during this process. As a result, both the approach and service provided post donation to approximately 5,700 bereaved family members has changed. Findings have impacted on the training of approximately 250 specialist nurses working for National Health Service Blood and Transplant (NHS BT) and are challenging the current informational/documentary systems that are in place to facilitate donation. Findings from this extensive body of work are now embedded in NICE guidance, national clinical practice guidelines and public awareness initiatives.
Research in the Department of Social Anthropology concerning the ethics of the use of biotechnology has had an impact on organisations with a public voice on the ethical use and regulation of body parts for reproduction and medicine, such as the Nuffield Council on Bioethics (NCOB), and indirectly the Welsh Assembly, the UK-wide Human Fertilisation and Embryology Authority (HEFA). Further, their recommendations which have been informed by this research have had significant impact on public understanding and debate; health and well-being; and on egg donors and recipients in particular. Implementation of recommendations based on the research has seen waiting times for donor eggs halve.
Work by Farsides has had a significant impact on public policy and professional practice and has led to measurable improvement in outcomes. Farsides' research has contributed to an increase of 50 per cent in organ donations. Her work has facilitated the resolution of ethical issues for clinicians caring for potential organ donors, for example through the establishment of an ethical framework for caring for donors after circulatory death. In terms of embryo donation, her research has influenced current practice and policy around consent and payment for donation, and led to the revisiting of guidance relating to donation and freezing policies.
Research undertaken with the Newcastle Hospitals Transplant Unit led to the approval of two new transplant processes and resulted in the expansion of the kidney donor pool.
Research in Southampton Law School's Health Ethics and Law (HEAL) network has made a significant contribution to improving the way in which ethical issues in health are addressed in the UK and further afield. HEAL members' specialist research has informed several Department of Health policy documents and policy makers, as well as the strategies of organisations governing bioethics. Their recommendations have influenced professional guidelines for clinicians and lawyers, defining and underpinning good practice so as to protect and benefit service users. Increased understanding of ethical issues in health among the wider public has been promoted through high-profile media coverage.
Research led by Bradley, Watson and Pettigrew (Department of Surgery, University of Cambridge) since 2000 has improved patient access to renal transplantation significantly, changed UK kidney transplant policy radically, and informed policy internationally. Their findings have increased considerably the use of kidneys (and other organs) from circulatory death donors (DCD), including those with extended time to cardio-respiratory arrest, and primary brain malignancy. Their randomised trial of machine perfusion for DCD kidneys has informed NICE guidance, while their analysis of factors that determine transplant outcome in recipients of DCD kidneys has informed national guidance for DCD kidney retrieval and organ allocation policy at NHS Blood and Transplant.
This case study focuses upon discourse analytical research showing the importance of understanding communication activities in clinical settings, most particularly in mental health care and in transplantation medicine. The research described below has had an immediate impact upon educational and professional practice in medical settings in two European countries. The change that was engendered by the research can be seen both in educating clinicians in Poland as well as in changing communication practices of the British NHSBT.