Independent report

Supporting evidence

Published 21 February 2023

Applies to England

Background

The report of the Organ Utilisation Group (OUG) was informed by stakeholders and experts from the solid organ transplant care pathway. Evidence is presented below from the OUG’s stakeholder engagement throughout the evidence-gathering exercise.

These details informed their recommendations, which focused on making the best and most efficient use of available resources across the care pathway, rather than seeking significant additional funding.

Public notes of Organ Utilisation Group meetings

The OUG held its first meeting on 1 July 2021.

Members and observers of the OUG were asked to provide their views on key barriers, successes and priorities for organ transplantation, and the utilisation of organs from deceased and living donors.

Table 1 below provides a summary of responses, grouped into themes:

Table 1: stakeholder feedback regarding barriers, successes and priorities

Topic	Points raised
Barriers	– Access to resources (theatres, pathology, novel technology, scout service) – Disparities (education, awareness, engagement, geographical) – Infrastructure (timing of care pathway, technology, commissioning structure) – Workforce (sustainability, education) – Culture (transplant teams, public) – Risk appetite – Trust support
Successes	– Collaboration (between teams, NHS Blood and Transplant (NHSBT), commissioners, trusts, advisory groups) – Data sharing (NHSBT dissemination, UK Transplant Registry) – National Organ Retrieval Services – Organ offering and allocation schemes – Infrastructure (governance, guidance, patient pathway and support, bringing living and deceased donation together) – Team commitment – Organ donation (‘opt out’, family support, engagement) – Innovation – Living donation (matching runs, altruistic)
Priorities	– Training and education (improve risk appetite, guidance, culture, transplant teams, public, patients) – Sustainability (service, workforce) – Resources (finance, access to services) – Improve access to proven innovation (machine perfusion, scouts) – Data sharing (digital infrastructure; timeliness) – Commissioning infrastructure (clear end-to-end approach, benefits realisation) – Trust engagement (prioritisation) – Listing, matching and allocation systems – Increase living donation

Ways of working

Remit

The scope of the OUG included transplantation of organs from living and deceased donors in adult and paediatric services.

Increasing the number of deceased donors was out of the scope of this review. A large programme of work was underway separately to deliver this, following the publication of the new UK strategy for organ donation and transplantation.

Reporting structure

The OUG chair reported to the Secretary of State for Health and Social Care, maintaining engagement with ministers in the devolved governments. The chair also reported to the then-Chief Executive of NHS England and Improvement for actions requiring commissioning activity.

Updates for information and feedback were provided to the following organisations as appropriate:

• UK commissioning boards
• NHSBT Board
• National Organ Donation Committee
• NHSBT Solid Organ Advisory Groups
• British Transplantation Society
• Royal Colleges of Surgeons
• Academy of the Royal Colleges
• Faculty of Intensive Care Medicine

The OUG established 4 working subgroups on:

• standards
• commissioning
• workforce
• systems architecture and data handling

The chair and membership of which included a wide range of stakeholders outside of the OUG.

These subgroups identified and engaged with relevant stakeholders. The evidence base was collated to develop recommendations to the OUG. Key themes from subgroup recommendations included:

• greater patient-centred focus, involvement, choice, information and education along the whole care pathway, including patient-reported outcomes measures (PROMs) and patient-reported experience measures (PREMs)
• collaboration with other units and centres through a buddying scheme, and building on lessons learned through coronavirus (COVID-19)
• the use of innovation and novel technologies, such as machine perfusion
• standardisation, strategic direction and leadership with national oversight
• improved access to data to inform patient and clinical decision-making and resource allocation
• workforce sustainability, resilience and training to meet current and future needs

Ethical considerations in organ utilisation

A representative from the Nuffield Council of Bioethics presented the ethical considerations of organ utilisation to the OUG.

The following points were raised:

• the relationships influencing the donation process are important, and include family members, health representatives and the NHS
• context of pressures due to ongoing limited resources and COVID-19 means high pressures on staff and systems – sometimes there are no ‘good’ options
• practices and procedures aimed at maximising the availability of organs, such as ‘opt out’ legislation, have implications for utilisation
• the importance of demonstrating trustworthiness through transparency, accountability and equitable access

Stakeholder engagement

Members of the OUG discussed the need for widespread stakeholder engagement and consultation. This included:

• patient focus groups
• an online call for evidence
• site visits
• stakeholder forums and workshops
• one-to-one meetings with stakeholders
• written updates
• international engagement

Patient’s experience

Key themes from discussions with patient focus groups are captured in table 2 below.

Table 2: discussion points from patient representatives

Themes	Discussion points
Disparities in access	The following key points were raised: – it is important to ensure there are no disparities in referral practices across the country that influence the likelihood of being listed for transplant in a timely manner – disparity in the level of care offered between different centres – socio-economic disparities can impact the likelihood of receiving a transplant – for example, patients and their carers may not be able to afford to stay in hotels during the assessment process, which impacts on their likelihood of receiving a transplant – delays in corrective procedures influence patient outcomes – ‘postcode lottery’ must be avoided for bridging services such as ex-vivo lung perfusion (EVLP)
Patient and carer support	The following key points were raised: – it is important that good psycho-social support is available for patients and their families pre and post-transplantation – services need to have clear roles and responsibilities at every stage of the care pathway to ensure that patients do not ‘fall through the net’ post-transplant
Communication	The following key points were raised: – concern about whether the right information is shared between the various teams who provide care pre- and post-transplant – patients need easy and effective ways to contact the right services to support them in managing their condition – improved communication and collaboration are required between teams to support the continuity of care through the different stages of the transplant service – communication should be timely, easily accessible and in a format that supports patients to take active decisions about their own care – patients post-transplant may be unwilling to raise problems or concerns

A patient survey was shared in February 2022 to further gather patients’, families’ and carers’ experiences. This included hearing from patients actively waiting for transplant and those who have received an organ transplant, and capturing the experiences of patients, families and carers with ‘less heard voices’.

There is a need to provide transplant services with compassion and care, demonstrating valuing equality and diversity in action.

Women’s voices need to be heard more often and louder in transplant services, and where improvements are required.

Online call for evidence

The OUG issued an online public call for evidence asking respondents for their feedback on the transplant service. This was actively shared with patient, donor and clinical communities.

Seventy-four individuals responded to the survey​. Of these:

• 107 challenges were reported (plus 7 not applicable to OUG remit)​
• 73 opportunities were reported (plus 4 not applicable to OUG remit)​

A large proportion of respondents were transplant surgeons and physicians (n = 53) situated UK-wide.

The OUG discussed the emerging themes and principles that arose from the evidence:

• systems to be in place to increase risk appetite
• standards for end-to-end pathway and access to this pathway
• workforce resources to encourage the retention and recruitment of staff
• board ownership through the introduction of key performance indicators (KPIs)
• removing disparity in access through the simplification and standardisation of commissioning
• machine perfusion as an emerging field that requires more research
• education and learning from COVID-19 – educating patients, families and staff
• focus on social and psychological patient support
• encouraging more collaboration across centres – a key takeaway following the pandemic
• culture and improving ownership through the standardisation of pathways
• the possibility of introducing KPIs for transplantation and creating fixed standards
• potential for virtual assessment and how technology could manage this to reduce travel and waiting times for patients

Site visits

As shown in Figure 1 below, the OUG undertook 10 site visits across England at transplanting centres in Newcastle, Leeds, Manchester, Nottingham, Birmingham, Cambridge, Bristol and London (the Royal London Hospital and King’s College Hospital), and non-transplanting centres in Bristol and Southampton.

Figure 1: sites visited across England

Different challenges were faced by transplant centres specialising in different organ types. Common themes and concerns arose across all centres regarding:

• workforce capacity and resilience
• access to theatres and intensive care units
• the need to improve access to data to inform patient and clinical decisions
• the need for improved minimum standards and monitoring against best practice
• the need for improved collaboration and streamlining of processes

Stakeholder forum and workshop

The OUG held a stakeholder forum in October 2021 and workshops in January 2022. A large proportion of delegates were transplant surgeons, with charities, nephrologists and specialist nurses for organ donation also having high representation.

Key themes from these discussions included:

• lack of capacity and resources
• disparities in access and care
• the need to improve shared learning and address cultural differences between units to drive improvements
• incentivising transplant services and promoting transplantation as a career ​
• empowering patients to take an active role in their own care
• streamlining the commissioning process ​
• psycho-social support ​for patients pre- and post-transplant, as well as for staff

International meetings

The OUG spoke to organ transplantation and utilisation experts in Canada, the US, Spain, the Netherlands, Austria and Australia. Points raised are shown in table 3 below.

Table 3: themes from international meetings

Topic	Points raised
Similarities	International experts highlighted the: – need to maximise utilisation potential – importance of addressing organ risk appetite and centre variation in organ acceptance A shared issue between experts was workforce burnout and recruitment issues.
Lessons learned	Lessons learned included focusing on: – monitoring adherence to best practice – setting measures to incentivise – disseminating benchmarked activity data to inform and drive local improvements – supporting those who take calculated risks – providing training programmes and sharing experiences
Innovation	Innovation adopted by international experts included: – the use of machine perfusion to improve the number and quality of organs available for transplant – predictive analytics regarding the outcome of an organ into a named recipient to address risk aversion – GPS tracking for organs in transit to support management of logistics – shared decision-making with patients

OUG and subgroups – membership and observers

With thanks to all members of the OUG and its subgroups who engaged throughout this commission.

Organ Utilisation Group – membership and observers

Table 4 below provides a list of all organ utilisation group members.

Table 4: OUG members

Role	Title	Name	Organisation	Organ specialism	Location
Chair	Professor Sir	Steve Powis	NHS England (NHSE)	Not applicable	England
Deputy chair	Professor	John Forsythe	NHSBT	All	UK
Trust chief executive	Mr	Julian Hartley	Leeds Teaching Hospitals NHS Trust	– Liver – Kidney	Leeds
Trust chief executive	Mr	Stephen Posey	Papworth	Cardiothoracic (CT)	Cambridge
Critical care clinical director	Dr	Gus Vincent	Newcastle	All – intensive care	Newcastle
Organ utilisation – abdominal	Mr	Chris Callaghan	Guys and St Thomas’	– Kidney – Pancreas	London
Organ utilisation – CT	Mr	Steven Tsui	Papworth	– Heart – Lung	Cambridge
Recipient transplant co-ordinator	Ms	Moira Perrin	University Hospitals Birmingham	Liver	Birmingham
Director of operations	Dr	Maurice Hakkak	University Hospitals Birmingham	All	Birmingham
British Transplantation Society (BTS)	Mr	Krish Menon	BTS	Liver	UK
Living donation	Ms	Lisa Burnapp	– BTS – NHSBT	– Kidney – Liver	UK
Lay representative	Mr	Shamik Ghosh	NHSBT	Not applicable	London
Patient representative – kidney	Ms	Hilaria Asumu	Not applicable	Kidney	Manchester
Patient representative – CT	Ms	Jessica Jones	Not applicable	Lung	Birmingham
Non-transplant centre	Dr	David Makanjuola	Epsom and St Helier	Kidney	Epsom
Departmental representative	Mr	Michael Gallagher	Department of Health and Social Care	Not applicable	England
Departmental representative	Ms	Maria Nyberg	Department of Health and Social Care	Not applicable	England
Lead secretariat	Ms	Ms Claire Williment	NHSBT	Not applicable	UK
Secretariat – data and statistics	Ms	Lisa Mumford	NHSBT	Not applicable	UK
Secretariat support	Mr	Tom Nicholson	NHSBT	Not applicable	UK
Secretariat support	Ms	Andrea Pereira	NHSBT	Not applicable	UK
Secretariat support	Ms	Cathy Hassell	NHSE	Not applicable	England

Table 5 below provides a list of all organ utilisation group observers.

Table 5: OUG observers

Role	Title	Name	Organisation	Location
Devolved government representative	Ms	Caroline Lewis	Welsh Government	Wales
Devolved government representative	Ms	Joan Hardy	Department of Health (Northern Ireland)	Northern Ireland
Devolved government representative	Ms	Sharon Grant	Scottish Government	Scotland
England specialised commissioning	Ms	Fiona Marley	NHSE	England
England specialised commissioning	Ms	Sarah Watson	NHSE	England
Commissioning	Ms	Anushka Govias-Smith	NHS Scotland	Scotland
Commissioning	Mr	Stuart Davies	NHS Wales	Wales
Commissioning	Ms	Teresa Magirr	NHS Northern Ireland	Northern Ireland
Commissioning	Ms	Karen Quinn	NHSBT	UK
Stakeholder forum chair	Ms	Fiona Loud	Kidney Care UK	UK
Stakeholder forum chair	Prof	Deirdre Kelly	NHSBT	UK

OUG subgroup leads

Table 6 below provides a list of all subgroup leads.

Table 6: subgroup leads

Subgroup	Role	Name	Organ specialism	Location
Standards	Co-chair	John Forsythe	All	UK
Standards	Co-chair	Jessica Jones	Lung	Birmingham
Commissioning	Co-chair	Cathy Edwards	NHSE commissioning	England
Commissioning	Co-chair	Shamik Ghosh	Not applicable	England
Workforce	Co-chair	Steven Tsui	Heart	Cambridge
Workforce	Co-chair	Liz Fenton	Not applicable	England
Systems architecture and data handling	Co-chair	Wendy Clark	All	UK
Systems architecture and data handling	Co-Chair	Lisa Burnapp	Kidney	UK