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Engage patients to help shape your clinical research

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

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:

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

 

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 the trial design 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 instill 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 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.

To request the service all you need to do is review the Information Sheet for Life Sciences Organisations and then complete the study submission form.  We will use the information that you provide to seek appropriate patients to support your requirements. The service will be formalised with a letter of agreement.

We will  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.

You may find this video useful which describes how the service works.

 

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.

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, at the protocol design stage.

If you would like to participate in this service, please read the Information Sheet for Patients which provides further details about the service.

If you are a Patient Organisation who could contribute to patient recruitment, please complete the Patient Organisation Expression of Interest Form

 Related links

Service documents

Find out more about how we support the life sciences industry to plan and deliver high quality clinical research in England:

Get in touch

We value  your views. If you would like to provide feedback or have any comments or questions about the service, please complete this feedback form. Alternatively please  contact our Study Support Service Helpdesk:

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