A leading UK body for health data science has joined other health and social care organisations in a pledge to improve public involvement in research.
Health Data Research UK (HDR UK) joins the Health Research Authority and a host of other organisations to sign up to the Shared Commitment to Public Involvement in Health and Social Care Research.
The Shared Commitment aims to bring about changes which will drive up standards in health and social care research.
The statement was developed in partnership with members of the public and was launched in March 2022 during Science Week (11 to 18 March).
Dr Matt Westmore, HRA Chief ExecutiveIt’s great to have HDR UK joining our Shared Commitment to Public Involvement.
This shared statement, developed with patients, research participants and leaders in health and social care research, will ensure public involvement is embedded across the health and social care research system.
The entire research system is sending the same strong message; that public involvement is always important, always expected and always possible. The evidence is that better research results from involvement, and better research delivers benefits for patients.
HDR UK’s mission is to unite the UK’s health data to enable discoveries that improve people’s lives.
Cassie Smith, Head of Legal, Trust and Ethics at HDR UKAs the UK’s national institute for health data research, we are in a privileged position to work with the public’s data. We, therefore, have a duty to ensure patients, carers, communities and the public are actively involved in decisions about how their data is used for research.
Signing up to the Shared Commitment to improve public involvement in health research is an important step in building and scaling up active and meaningful patient and public involvement that ensures the diverse public influence and shape our work to deliver public benefit to all.
This is a fantastic example of collective action in practice across health and social care research and we are looking forward to collaborating with the community to improve practice, deliver change and ensure the needs and experiences of patients and the public are the centre of our work.
The Shared Commitment 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.
Public involvement refers to the ways in which the research community works together with people including patients, carers, advocates, service users, and members of the community.
Data for Global Health and Society conference
In December 2022 the HRA and HDR UK will be coming together to host a free one day conference on global health data.
The Data for Global Health and Society conference will look at the use of data to advance medical knowledge and deliver improvements to people’s lives.
The event will hear from leading national and international figures from the health data sector, including Tim Ferris, National Director of Transformation at NHS England.
Dr Matt Westmore, HRA Chief Executive, said: 'We’re delighted to be working in partnership with HDR UK to deliver the Data for Global Health and Society conference. Health data is crucial for improving treatments and saving lives and it’s essential that it’s inclusive and accessible for all. The conference is a great opportunity to come together and share learnings from across the sector.'
The conference is a hybrid event and will be hosted in Birmingham on Wednesday 14 December.
To register for the Data for Global Health and Society conference visit the HDR UK website.
Shared Commitment partners:
The Academy of Medical Sciences
The Association of Medical Research Charities
The Association of the British Pharmaceutical Industry
Health and Care Research Wales
Health and Social Care Northern Ireland
Medicines and Healthcare products Regulatory Agency
National Coordinating Centre for Public Engagement
National Institute for Health Research
NIHR Applied Research Collaboration (ARC) North East and North Cumbria