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Public Information Pack (PIP) Supplement: Finding out more

Contents

Introduction

This resource provides information about some of the different organisations that are involved in health and care research, which may be useful to know about. The latest edition of this resource was published in April 2021 to update details of organisations and other information sources. This is a working document – if you spot any inaccuracies or would like to suggest any additions please email us on ced@nihr.ac.uk

Organisations

National Institute for Health Research (NIHR)

The National Institute for Health Research (NIHR) the nation's largest funder of health and care research and provides the people, facilities and technology that enables research to thrive. Working in partnership with the NHS, universities, local government, other research funders, patients and the public, NIHR delivers and enables world-class research that transforms people's lives, promotes economic growth and advances science. NIHR's mission is to improve the health and wealth of the nation through research.

NIHR is primarily funded by the Department of Health and Social Care, but also receives UK Aid funding to support research for people in low- and middle-income countries.

You can find out more about NIHR’s approach to involvement, and can visit the NIHR’s Patients, Carers and the Public pages to find out more about how you can get involved with research, including some useful resources for members of the public. For example, here are some of the ways you can get involved in NIHR research:

The NIHR also provides resources and training for the involvement, engagement and participation community on Learning for Involvement. You can browse resources and training opportunities, or add your own.

You can get the latest news on how NIHR is involving patients, carers and the public in research by signing up to the Patients and the Public newsletter.

NIHR Coordinating Centres

Listed below are the most relevant NIHR Coordinating Centres and organisations. These centres are responsible for the day-to-day operations of the NIHR.

Centre for Engagement and Dissemination (CED)

The Centre for Engagement and Dissemination (CED) focuses on two aspects of the NIHR  mission. Firstly, it promotes the engagement and involvement of patients, carers and the  public in all parts of the research journey. Secondly, through support for research  dissemination, CED encourages the translation of research findings into improved treatments  and services. Contact the CED: ced@nihr.ac.uk 020 8843 7117

Clinical Research Network (CRN)

The NIHR Clinical Research Network (CRN) supports patients, the public and health and care organisations across England to participate in high-quality research, thereby advancing knowledge and improving care. The CRN comprises 15 Local Clinical Research Networks (LCRN) and 30 Specialties who coordinate and support the delivery of high-quality research both by geography and therapy area. National leadership and coordination is provided through the CRN Coordinating Centre. Contact your LCRN.

Central Commissioning Facility (CCF)

The NIHR Central Commissioning Facility (CCF) manages five NIHR research programmes, the Research Design Service and several NIHR infrastructure schemes, as well as the Senior Investigator scheme. It also supports the NIHR by providing information on recruitment to clinical trials, and ensuring patients and the public are involved in the research we manage. Contact: ccf@nihr.ac.uk 020 8843 8000

NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC)

The NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC) manages identification, prioritising, funding, delivery, publication and dissemination of high quality research for five NIHR research programmes. It also leads on a number of other NIHR initiatives to meet the needs of the public, patients, the NHS and wider care system. Contact: netscomms@nihr.ac.uk 020 8843 8000

Other NIHR organisations

Research Design Service (RDS)

The RDS provides support to health and social care researchers across England on all aspects of developing and writing a funding application, including research design, research methods, identifying funding sources and involving patients and the public. There are ten RDS centres across England. Each RDS has a patient and public involvement manager.

Applied Research Collaborations (ARC)

NIHR Applied Research Collaborations (ARCs), the successor to NIHR Collaborations for Leadership in Applied Health Research and Care (CLAHRCs), support high quality, generalisable, applied health and care research that responds to, and meets, the needs of local populations and local health and care systems. The collaborations also support, facilitate and increase the rate at which research findings are implemented into practice. Each of the 15 local ARCs will have a patient and public involvement lead. Contact your local ARC to find out more about what they do and to get involved.

NIHR Biomedical Research Centres (BRC)

NIHR’s 20 Biomedical Research Centres (BRCs) are collaborations between world-leading universities and NHS organisations that bring together academics and clinicians to translate lab-based scientific breakthroughs into potential new treatments, diagnostics and medical technologies. Contact your local BRC to find out more about what they do and to get involved.

School for Primary Care Research (SPCR)

The NIHR School for Primary Care Research is a partnership between nine leading academic centres for primary care research in England. The  main aims are to increase the evidence base for primary care practice through high quality research and strategic leadership, and to build capacity in primary care with a well established training programme.

School for Public Health Research (NSPCR)

The NIHR School for Public Health Research (SPHR) is a partnership between eight leading academic centres with excellence in applied public health research in England, and aims to increase the evidence base for cost-effective public health practice.

School for Social Care Research (SSCR)

The School for Social Care Research (SSCR), funded by NIHR, aims to develop the evidence base to inform and improve adult social care practice in England by commissioning and conducting internationally leading research.

NIHR websites

The following NIHR activities help people find out more about research and taking part in research:

People in Research

People in Research is an up to date repository of involvement opportunities. Organisations and research projects that are looking for people to get involved put information and their contact details on this website, so that members of the public who are interested in getting involved can contact them. Members of the public can also sign up to receive email alerts from the People in Research website about relevant opportunities.

Be Part of Research

Be Part of Research is an online service that provides an opportunity to help members of the public understand what research is and what it might mean to take part, as well as showing what research is currently happening across the UK. The site supports the NIHR aim to help people make informed choices about taking part in health and social care research and make sure everyone has the chance to get involved, if they want to.

Join Dementia Research

Join Dementia Research is a service that allows people to register their interest in participating in dementia research and be matched to suitable current studies. The service shows what dementia research is taking place, both locally and nationally, and connects researchers with people who want to participate in studies.

Other organisations

Academic Health Science Networks

15 Academic Health Science Networks (AHSNs) across England, established by NHS England in 2013, connect NHS and academic organisations, local authorities, the third sector and industry to improve the health of local communities. Each AHSN works across a distinct geography serving a different population in each region.

Association of Medical Research Charities (AMRC)

AMRC is the national membership organisation of leading medical and health research charities in the UK. The website includes a list of all member charities.

Cochrane

Cochrane is an international network of researchers, professionals, patients, carers and people interested in health. Cochrane’s mission is to promote evidence-informed health decision-making by producing high-quality, relevant, accessible systematic reviews and other synthesized research evidence.

Co-Production Collective

The Co-Production Collective is a community of patients, carers, researchers, practitioners, students and anyone else who is interested in co-production (in the health context or more generally). They work with individuals and organisations including universities, charities, funders, NHS bodies, local authorities, housing associations and grassroots groups.

Department of Health and Social Care

The Department of Health and Social Care is the government department supporting ministers in leading the nation’s health and social care to help people live more independent, healthier lives for longer.

Health Research Authority (HRA)

HRA is a NHS organisation established to protect and promote the interests of patients and the public in health research.

healthtalk.org

healthtalk.org (formally Healthtalkonline) shares other people’s experiences of health and illness, including their experiences of being involved in research. You can watch or listen to videos of interviews, read about people’s experiences and find reliable information about conditions, treatment choices and support.

James Lind Alliance (JLA)               

The James Lind Alliance is an initiative that brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise the top 10 unanswered questions or evidence uncertainties that they agree are the most important in a specific condition, area or topic.

Joseph Rowntree Foundation

The Joseph Rowntree Foundation is an independent organisation working to inspire social change through research, policy and practice. They work in partnership with private, public and voluntary sectors, as well as with individuals and communities.

Medical Research Council (MRC)

The MRC is an organisation funded by the UK Government, which supports research across health and the medical sciences.

National Coordinating Centre for Public Engagement (NCCPE)

The NCCPE is a national organisation which seeks to support a culture change in the UK higher education sector by supporting universities to increase the quality and impact of their public engagement activity.

National Institute for Health and Care Excellence (NICE)

NICE's role is to improve outcomes for people using the NHS and other public health and social care services.

National Voices

National Voices is the leading coalition of health and social care charities in England. They work together to strengthen the voice of patients, service users, carers, their families and the voluntary organisations that work for them. National Voices has more than 160 members covering a diverse range of health conditions and communities.

NHS England

NHS England is the government-funded medical and health care service that everyone living in the UK can use without being asked to pay the full cost of the service.

Shaping Our Lives

Shaping Our Lives is a national organisation and network of user-led groups, service users and disabled people.

Social Care Institute for Excellence (SCIE)

The Social Care Institute for Excellence (SCIE) improves the lives of people who use care services by sharing knowledge about what works. They co-produce their products and services with people who use services and carers.

Social Care Online

Social Care Online is an online database of resources on all aspects of social care, including journal articles, websites, research reviews, legislation and government documents, and service user knowledge.

Vocal

Vocal creates opportunities for people to find out about, and have a voice in, health research in Greater Manchester.

References

Going the extra mile – Improving the nation’s health and wellbeing through public involvement in research (2015)

UK Standards for Public Involvement

The following websites and journals feature articles about public involvement in research:

NIHR Journals Library – an open access library providing full publication of studies funded by five of the NIHR research programmes.

The NIHR Evidence website presents high quality summaries of findings so that health and care research can be used by all members of society.

Research Engagement and Involvement – an interdisciplinary, health and social care journal focusing on patient and wider involvement and engagement in research. The journal is co-produced by all key stakeholders, including patients, academics, policy makers and service users.

Research For All – An open-access journal focusing on research that involves universities and communities, services or industries working together.

Acknowledgements

This resource was reviewed by the NIHR Centre for Engagement and Dissemination in March 2021 for accuracy and currency. The NIHR endorses this resource. The previous version was referenced as: Buckland, S. et al (2007) Public Information Pack. How to get actively involved in NHS, public health and social care research. INVOLVE.

This guidance is due for review in March 2022.