A Collaborative Blueprint
This report, A Blueprint for Face Transplant Policy and Practice, arises from our 3-day ‘Policy Lab’ with the Policy Institute at King’s College London, which facilitated a collaborative, open discussion on the complex clinical and non-clinical challenges for face transplants. The goal of this Lab was to discuss and build consensus around a blueprint for sustainable face transplants that could act as a resource for clinical teams and stakeholders around the world. It seeks to improve policy and practice, addressing the urgent need to set a standard of care to ensure the procedure is as safe and ethical as possible for patients.
Many of the concerns outlined in the report were highlighted in 2003 and 2006 by the Royal College of Surgeons. Their Facial Transplantation Working Party Report outlined “considerable reservations” about the risks associated with the procedure. And it outlined minimum requirements for face transplants in the UK, where the procedure is yet to be carried out. The blueprint aims to tackle those concerns by addressing six key themes – Patient selection and expectations; Patient support; Clinical framework; Data on patient progress & outcomes; Public image & perception, and Financial sustainability.
The Context
Since the first face transplantation surgery was carried out in France, 17 years ago, the field of vascularised composite allotransplantation to treat ‘severe facial disfigurement’ has advanced significantly. In that time, 48 face transplant surgeries on 46 patients in 11 different countries have been reported, as surgical operative techniques, postoperative care, and patient evaluation procedures have continued to evolve, increasingly in specialised clinics. Today, the procedure is considered a ‘viable option’ for patients suffering from severe forms of facial deficits. These may be due to injury or disease, and are not treatable by conventional reconstruction. However, numerous question marks remain as to the clinical, social, ethical and economic sustainability of face transplants for patients, their family support networks, and clinical providers.
Face transplantation is a highly complex and expensive procedure. It involves considerable medical and psychological risks, and neccessitates life-long follow-up care and immunosuppression for patients. Moreover, data on long-term clinical or quality of life outcomes is mostly lacking or not shared between programmes. Worse, no universal standards of care or agreed metrics of success for face transplants currently exist, something the AboutFace team, along with some of our collaborators have noted in a recent paper (Bound Alberti, Ridley, Herrington, Benedict, & Hall, Transplantation Reviews).
The Policy Lab
The virtual Policy Lab was convened over three days (15-17 December 2021). A select group of invited stakeholders and experts represented international teams and interdisciplinary backgrounds, including leading clinicians, ethicists, psychologists, policymakers, and qualitative researchers. Together, delegates examined the challenges facing face transplants and the mandate for a collaborative blueprint for sustainable policy and practice. The Lab consisted of four intensive workshops in which delegates were split into interdisciplinary breakout groups to explore six themes. These themes were established in advance by the Lab organisers, informed by the latest research in the field. They focused on the clinical, logistical, social, economic, and cultural challenges faced by the field. The themes were introduced to Lab delegates prior to the event in a pre- Policy Lab briefing pack. Participants also received a pre-Policy Lab survey designed to capture views on these themes, establish areas of consensus and disagreement, and help advance discussions towards establishing a blueprint.
Outcomes
This document reports on the outcomes of the discussion in the Policy Lab. It is organised around six key themes, and provides a synthesis of the key recommendations that emerged from each session.
The primary outcome of the Lab is a “blueprint” which consists of a set of key processes and recommendations for sustainable policy and practice in face transplants. The blueprint was informed by the latest clinical and qualitative research on face transplants. And it was developed through a deliberative process by the field’s leading practitioners and researchers who participated in the Lab.
This blueprint provides a “gold standard” for policy and practice to which all face transplants programmes should seek to aspire. This report is aimed at practitioners, clinicians, researchers, or any stakeholder involved in the establishment or continued development of face transplant programmes. It provides a resource to inform decision making in multiple critical areas of policy and practice.
The “Key findings” section outlines the Lab discussions on each of the key themes and the recommendations arising from these. These recommendations form the basis of our blueprint for sustainable policy and practice.
The final section, “Conclusion & next steps,” provides a summary overview of this blueprint. Additionally, it contains details on how interested stakeholders can support the widespread sharing of recommendations across international face transplant programmes.
You can download and read the report above. Read the University of York’s press release here.
