UK Organ Donation and Transplantation Research Network join public involvement pledge

UK Organ Donation and Transplantation Research Network join public involvement pledge A voluntary Network committed to delivering collaborative research in organ donation and transplantation have joined the Health Research Authority (HRA) and a host of other leading organisations in a pledge to improve public involvement in research.

The UK Organ Donation and Transplantation Research Network (UKODTRN) have signed up to the Shared Commitment to Public Involvement, which aims to drive up standards by improving the quality of public involvement across the health and research sector.

UKODTRN  join 24 leading health and research organisations including, the National Institute for Health and Care Research (NIHR)NHS England, and Cancer Research UK (CRUK).

Dr Matt Westmore, HRA Chief Executive, says, ‘It’s great to have UKODTRN join our Shared Commitment to Public Involvement. We launched the Shared Commitment with other leading organisations, to raise the profile, value and importance of public involvement in health and social care research. Together we are sending a very strong message to the research system that public involvement in the design and delivery of research is essential and must be taken seriously. The evidence is that better research results from involvement, and better research delivers benefits for patients.’

UKODTRN is an all-organ initiative between clinicians, patients, donor families, public, and scientists, to support research in organ donation and transplantation, to encourage and develop strong collaborations, for patient benefit. The Network has the potential to make a real difference to how research in organ donation and transplantation is delivered in collaboration with patients within the UK.  The Network’s patient and public involvement and engagement offers support to researchers, clinicians, allied health professionals, and others in their research.  This is invaluable to make a difference.

Dr Adnan Sharif, Co-Director, UKODTRN.

UKODTRN’s community is growing fast and we are continually looking to build links with others and that’s why I am delighted that UKODTRN is part of the Shared Commitment.  Central to our work is the valuable partnerships with patients, carers, donor families, and the public. Involving this community in research is so important and beneficial, so together we can transform research in organ donation and transplantation.  Being part of the Shared Commitment working with other organisations will further ensure that our work is inclusive and representative, with the voices of our community strengthened and heard.

The Shared Commitment was developed in partnership with the HRA, leading health and social care organisations and members of the public. It launched in March 2022.

It builds on work led by the HRA in response to the reduction in public involvement seen in studies submitted for approval at the start of the COVID-19 pandemic.

The Shared Commitment, which is partially funded by the Department of Health and Social Care (DHSC) Recovery, Resilience and Growth (RRG) programme, includes a joint pledge to help improve the quality of public involvement, which each organisation signs up to.

Public involvement refers to all the ways in which the research community works together with people including, patients, carers, advocates, service users, and members of the community.

Excellent public involvement is inclusive, values all contributions, ensures people have a meaningful say in what happens and influences outcomes, as set out in the UK Standards for Public Involvement.

Evidence shows that excellent public involvement improves the quality and impact of research.

Embedding public involvement in health and social care research

The Shared Commitment statement, signed by leaders at each organisation, reads:

‘Public involvement is important, expected, and possible in all types of health and social care research.

Together our organisations and members fund, support and regulate health and social care research. This statement is our joint commitment to improve the extent and quality of public involvement across the sector so that it is consistently excellent.

People have the right to be involved in all health and social care research. Excellent public involvement is an essential part of health and social care research and has been shown to improve its quality and impact. People’s lived experiences should be a key driver for health and social care research.

When we talk about public involvement, we mean all the ways in which the research community works together with people including patients, carers, advocates, service users, and members of the community.

Excellent public involvement is inclusive, values all contributions, ensures people have a meaningful say in what happens and influences outcomes, as set out in the UK Standards for Public Involvement.

Working together we will support the research community to carry out excellent public involvement. We will provide or share guidance, policies, systems, and incentives.

We will:

  • listen to and learn from the people and communities we involve and apply and share that learning
  • build and share the evidence of how to involve the public and the impact this has
  • support improvements in equality, diversity, and inclusion in public involvement
  • promote the UK Standards for Public Involvement.

We will embed this commitment into the decision-making processes of our organisations.

As part of UKODTRN’s own commitment, we will:

  • provide further opportunities to connect researchers with our PPIE community and professional network members.
  • Facilitate collaborative opportunities through the provision of platforms for engagement with researchers, academics, and scientists.
  • Create awareness of research through sharing it with our members and partner organisations.

Organisations who have signed the Shared Commitment include:

The Academy of Medical Sciences

The Association of Medical Research Charities

The Association of the British Pharmaceutical Industry

Bristol Health Partners

Cancer Research UK

Cochrane

Fuse, The Centre for Translational Research in Public Health

Health and Care Research Wales

Health and Social Care Northern Ireland

Health Data Research UK

Health Foundation

Health Research Authority

International Patient and Public Involvement Network

Medicines and Healthcare products Regulatory Agency

National Coordinating Centre for Public Engagement

National Institute for Health Research

NHS England

NHS Research Scotland

NIHR Applied Research Collaboration East of England

NIHR Applied Research Collaboration (ARC) North East and North Cumbria

NIHR Innovation Observatory

The Patient’s Association

Universities UK

UK Research and Innovation

 Join the Shared Commitment

Organisations from across the health and social care research sector are invited to join our Shared Commitment. Find out how your organisations can get involved.

 

 

 

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