In the UK the NIHR defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.
The NIHR Patient Engagement in Clinical Development Service connects life science companies with patients who want to help shape and improve the design and, ultimately, the delivery of commercial clinical research.
It is available to all life sciences industries, including Clinical Research Organisations (CROs).
Why choose the NIHR?
Benefit from our brand Charities and patients engage with the trusted brands of the NIHR and the NHS
Build better relationships We act as an independent intermediary to broker and develop relationships on your behalf
The network approach NIHR has an extensive network across multiple therapeutic areas to identify relevant patient groups
Achieve equity We’ll provide guidance on the application of nationally accepted remuneration for patient involvement activities
Bespoke to you Every study is unique and our support will be tailored to your individual requirements
Continuous support We will assist you every step of the way and be your primary point of contact
Supported by the ABPI This service is aligned with the ABPIs Code of Conduct
Why engage patients?
Involving patients right at the beginning of the clinical development process has the potential to significantly improve study design and delivery. As well as providing an opportunity to gain a better understanding of the patient’s needs, it is also a chance for protocols to be considered in real life scenarios, issues to be identified, and problems to be resolved before a study opens for recruitment.
This will ultimately result in:
Better study design
Better participant recruitment
Better participant retention
Better protocol adherence
Typical patient engagement activities include:
Identifying research priorities
Reviewing study protocols
Simulating the study delivery approach
Commenting on, and supporting the development of patient information sheets and other related materials
Feedback on patient access and outreach strategies
Watch this video (under 4 minutes) to find out more about patient perspectives on being involved in designing clinical research. Jennifer Preston concludes the video by summarising how the NIHR piloted a patient involvement service. Please note this video was created in May 2018 and the Patient Engagement in Clinical Development service is now an established part of the package of support that the NIHR offers the life science industry. It is available to all life science companies and Contract Research Organisations (CROs).
The aims of the service
The primary aim of the service is to bring patients and life science companies together earlier in the clinical development process, ideally before a study protocol is finalised, so that patients can help companies make trial designs as patient-friendly as they can be.
Our vision is to provide a standardised, industry-wide approach to engaging patients and instil a culture of partnership working between life science industry organisations and patients. The NIHR is in a unique position to be able to broker this relationship as a neutral, public sector organisation, working in close partnership with the NHS, with a long history and track record of supporting the life science industry to deliver clinical research in the NHS.
This video, featuring Dr William van't Hoff (formerly a Consultant Paediatric Nephrologist and now CEO of the NIHR Clinical Research Network), explains how the service helps to balance the 'ask' of research with the burden of disease (play time is approximately 3 minutes).
How the service works
This animation provides an overview of how the service works (less than 4 minutes).
The NIHR defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. In the UK we tend to use the term 'involvement', however, internationally the life science industry often uses the term 'engagement'. The NIHR Patient Engagement in Clinical Development Service provides a national framework for patients to become involved specifically in commercial clinical research, ideally before a protocol is finalised.