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Engage with patients and the public to improve your research design

Connect and collaborate with patients and the public to design participant-friendly clinical trials.

What is the Patient engagement in Clinical Development Service?

Our Patient Engagement in Clinical Development Service has been designed for life science companies and Contract Research Organisations to help you to engage directly with patients, members of the public, and carers to improve the design and delivery of your research. It has also been designed to help you meet growing regulatory requirements and industry-wide codes of conduct, while working within your internal company guidelines.

Why engage members of the public in the clinical research process?

Patients and their carers are experts in their conditions. They are the only people who can truly tell us if we are achieving the right balance between the ‘ask’ of the research, and the burden of living with a condition or disease.

As well as gaining a better understanding of the participants' needs, engaging with the public also has the potential to significantly improve study design and delivery. The earlier you involve patients and the public, the greater the scope for improvement. That's why we believe that the public can and should be involved from the beginning of the clinical development process. This creates opportunities for draft protocols to be considered in real life scenarios, issues to be identified, and problems to be resolved before study approvals are sought.

Translating patient insight into action can have a significant impact on your research outcomes. Some of the benefits that are commonly reported as a result of acquiring and responding to patient insight include:

  • better study design
  • better participant recruitment
  • better participant retention
  • better protocol adherence
  • reduced risk of needing protocol amendments.

What type of engagement activities can the NIHR facilitate?

Patient insight group sessions
Our most popular activity. We can arrange and facilitate patient insight group sessions. The number of participants may depend on the prevalence of the condition or disease area, but typically involves between 4 and 8 participants.

Coordinating independent feedback
We can also coordinate remote activities where patients complete tasks independently. We will collate the feedback for you in a report.

Example engagement activities
Patient and public engagement tasks and activities that we regularly support include:

  • identifying research priorities
  • reviewing draft study protocols
  • supporting the development of, and acquiring feedback on, patient information sheets and related materials
  • acquiring feedback on participant recruitment and outreach strategies

If you have a different request, or if you are not ready to submit your service request but would like to talk to a member of our team, email us:

Why choose the NIHR as your patient and public engagement partner?

Partnering with NIHR for patient and public engagement offers several advantages.

  • National reach to find and engage patients:
    Our network covers all of England and spans all therapeutic areas.
  • Leverage trusted brands:
    The NIHR and NHS are trusted by charities and patients. We act as an independent intermediary to foster relationships on your behalf.
  • National standards compliance:
    We use nationally accepted remuneration rates for public involvement activities, and work to the UK Standards for Public Involvement in Research.
  • Tailored support:
    Receive support tailored to your unique study requirements.
  • Supported by the ABPI:
    This service aligns with the Association of the British Pharmaceutical Industry's (ABPI) Code of Conduct.

We strive to establish a unified, industry-wide patient and public engagement approach, fostering collaboration between life science organisations and the public. The NIHR, as a neutral, public-sector entity, with a strong history of supporting clinical research, is uniquely positioned to facilitate this partnership in conjunction with the NHS.

Case studies and customer feedback

Read our latest case study to learn how we supported a global pharma company's patient-focused approach to breast cancer trials and hear from a patient participant, Mary. 

Browse all our case studies to learn how we've helped other life sciences companies.

Read our guest blog from Sophie Evett, Feasibility lead for Pfizer, who reflects on her involvement in developing this service.

How the service works

Watch this short (4 minute) video for an overview of how the service works or read the key steps below.

Step 1: Submit your request describing your engagement goals
Fill out the service request form with information about yourself, your company and an outline of your engagement goals e.g. reviewing patient information sheets, gathering trial design feedback, or seeking advice on the study's timeline. Let us know how you wish to collaborate with the public. For instance, this might be via group insight sessions or by setting tasks for individuals to complete. If there are any key criteria you would like the people participating in this activity to meet, you can also describe them in the form.

Step 2: Review and feedback
Our team will review your submission to ensure it's feasible and appealing to patients and the public. We will arrange a time to discuss your request further and talk through delivery timelines.

Step 3: Letter of Agreement (LoA)
A Letter of Agreement will be generated to confirm engagement activities and deliverables.

Step 4: Seeking participants
Once an LoA has been signed, we leverage our resources and connections to find suitable patients and public contributors to take part. The timeline for this part of the process varies. You will receive regular updates from your assigned NIHR facilitator. Please note that, while your form submission is kept confidential within our team, we may need to share some study information with relevant patient groups to promote the engagement activity. This is clearly stated in the online form.

Step 5: Participant selection
We will collate details of the potential participants who have expressed an interest in the activity. We will then help you to choose from an anonymised list who you would like to invite to participate.

Step 6: Activity facilitation
We will support you to plan your activity to ensure that you achieve your engagement goals. For insight sessions, we will guide you in preparing a presentation about your proposed study for the participants. We can also help you to develop questions to ask the participants so that you can gather their opinions on your research plans. We will ensure everything runs smoothly on the day of the engagement activity and we will manage all aspects of the payments to participants (per national guidelines).

Step 7: Full cost recovery model
Registration for the service is free. However, a full cost recovery model is used to reimburse participant time, expenses, and NIHR facilitation time. An invoice is generated 30 days after the service is successfully completed.

Get started

If you're interested in using the Patient Engagement in Clinical Development service fill in the service request form. If you are not ready to submit your service request, but would like to talk to a member of our team, email us:

Further information about this service

Additional information for life science organisations

Our guidance  document: Further information for life science organisations provides additional detail about the service.

Information for patients
If you are a patient, carer or member of the public and would like to contribute to this service, read our guidance document:  Further information for patients, carers and members of the public.

Privacy notice 
Read the Patient Engagement in Clinical Development Privacy Notice

Helpful resources
NIHR has created a range of resources which you may find useful. 

Related information

This is just one of the ways we help life science organisations to conduct research in the UK. Visit our NIHR support for industry page to discover our full range of support. You may also be interested  in: 

Contact us

Get started by submitting  service request or complete our contact form to request a chat with our team. We aim to reply as soon as possible and always within two business days. 

Contact the Industry team