Patient Engagement in Clinical Development Service

Connecting life science companies and patients to improve delivery of commercial clinical research.

The Patient Engagement in Clinical Development Service bring patients and the life sciences together.
  1. Why engage patients in clinical development?
  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

Why engage patients in clinical development?

Involving patients right at the beginning of the clinical development process has the potential to significantly improve study design an delivery. As well as providing an opportunity to gain a better understanding of the patient’s needs, it’s also a chance for protocols to be tested, issues to be identified, and problems to be resolved before a study opens for recruitment, which ultimately results in:

  • Better study design
  • Better participant recruitment
  • Better participant retention
  • Better protocol adherence

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, before a study protocol is finalised, so that patients can help companies to make commercial clinical research as patient-friendly as it can be.

Our vision is to provide a standardised, industry-wide approach to engaging patients earlier in the clinical development process and instil a culture of partnership working between life science industry organisations, charities and patient groups.

The NIHR is in a unique position to be able to broker this relationship as and neutral, non-profit organisation, embedded in the NHS, with a long history and track record of supporting the life science industry to deliver clinical research in the NHS.

Click the image to watch a video of Patient Research Ambassador, Keith Wilson, explaining the value that patients can bring to clinical trial design when working together with the life sciences industry.
Click the image to watch a video of Patient Research Ambassador, Keith Wilson, explaining the value that patients can bring to clinical trial design when working together with the life sciences industry.

Why choose the NIHR

  • Benefit from our brand
    Charities and patients engage better with the trusted brands of the NIHR and the NHS
  • Build better relationships
    We will 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’ll assist you throughout the whole process and be your primary point of contact
  • Endorsed by the ABPI
    This service is aligned with the ABPIs Code of Conduct
Click on the image to watch a video explaining how the service works.
Click on the image to watch a video explaining how the service works.

How the service works

This service is a ‘paid for’ extension of the NIHR Study Support Service provided by the NIHR Clinical Research Network and is based on a transparent and fair full cost recovery model. It is available to the life sciences industry, including pharmaceutical, biotech, medtech companies and Clinical Research Organisations (CROs).

All you need to do is complete a simple online form and we will use the information that you provide to seek appropriate patient groups to support your requirements. When we connect you with an interested patient group the service will be formalised with a letter of agreement.

We will then take care of all the logistical arrangements and attend all face to face meetings as your liaison. On completion of the project you will receive an invoice with a breakdown of all the costs incurred.

Typical patient engagement activities include:

  • Identifying research priorities
  • Reviewing study protocols
  • Simulating the study delivery approach
  • Commenting on, and supporting development of, patient information leaflets and other related materials
  • Feeding back on marketing and recruitment strategies
  • 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.

Click the image to watch the video: What does patient centricity look like?
Click the image to watch the video: What does patient centricity look like?

The patient experience

If you are a patient carer or member of the public and you are new to research, you may find the patients and the public section of our website helpful as it provides more information about how to become involved in research.

If you would like to participate in this service, please read the information sheet which provides further details about the service.

Click the image to watch a video of Dr Willliam van't Hoff explaining how the service will benefit life science companies.
Click the image to watch a video of Dr Willliam van't Hoff explaining how the service will benefit life science companies.

Service charter

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

If you would like to provide feedback or have any comments or questions about the service, please complete this form.

Further information

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