Patient Engagement in Clinical Development Service

  1. About the service
  2. The aims of the service
  3. How the service works
  4. How to request the service
  5. Why choose the NIHR
  6. The patient experience
  7. Service charter
  8. Further information

About the service

The NIHR’s service on patient engagement in clinical development helps connect life science organisations with patient groups, to help gain patient input into studies at the early stages of their design. The service launched in October 2018 and we are looking for early adopters to partner with NIHR and provide feedback to help shape the service. See the video for more information.

The aims of the service

  • provide the opportunity for study protocols to be reviewed and tested by patients to identify issues prior to a study opening to recruitment
  • ensure better study protocol design leading to better study delivery
  • encourage positive relationships between life sciences, the NIHR and patients
  • foster patient involvement right from the very start of clinical development

How the service works

The NIHR, where feasible, will identify and introduce life sciences organisations to patient groups and then help facilitate a working relationship.

This typically involves:

  • identifying research priorities
  • commenting on and supporting development of patient information leaflets or other research materials
  • reviewing study protocols
  • simulating the study delivery approach
  • feeding back on marketing and recruitment materials
  • undertaking interviews with research participants

The video ‘How the service works and how we’ll manage information and payments’ explains more about the process and how to interact with the service.

How to request the service

If you are from a life sciences organisation (such as a pharmaceutical, biotech, medtech or CRO), please review the information sheet and then complete the registration form.

Why choose the NIHR

  • Network - the NIHR has an extensive network across multiple therapeutic areas to identify, introduce and facilitate partnership-working with patient groups
  • Tailored - we offer a relevant and tailored approach for each study using this service
  • Reputation - the NIHR is a world-class reputable organisation

The patient experience

If you are new to research, please visit the patients and the public section of the website for more information.

The information sheet here provides you with more details if you would like to participate in the service.

The video ‘The patient experience and journey’ gives first-hand accounts and experiences of patient involvement in clinical development.

Service charter

Further details about the service and what it involves is available via the Service Charter.

If you would like to provide feedback or raise questions then please complete this form.

Further information

Get in touch by contacting the Study Support Service Helpdesk via email at, or call us on 0113 343 4555.