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Engage with patients and the public to improve your research design

Our Patient Engagement in Clinical Development Service has been designed for life science organisations to help you ensure your research is participant-friendly.

This service enables you to engage directly with patients, members of the public, and carers to improve the design and delivery of your research. It also helps 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.

By engaging with patients and the public we can grow our understanding of their general needs and preferences, and how those may translate into a clinical trial scenario. Their insight is invaluable and has the potential to significantly improve study design and delivery

The earlier you involve patients and the public, the greater the scope for improvement. We believe that patients and the public can and should be involved from the very beginning of the clinical development process. This creates opportunities for draft protocols to be considered in real life situations, issues to be identified, and problems to be resolved before you seek regulatory approvals for your study

Some of the benefits that are commonly reported as a result of translating patient insight into action include:

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

Types of engagement activities we provide

Patient insight group sessions

A popular choice. We can arrange and facilitate group sessions to acquire patient and/or public insight. The number of contributors may depend on the prevalence of the condition or disease area, but typically involves between 4 and 8 contributors. Feedback shows that contributors value this opportunity to interact directly. Sessions usually take place virtually but can be delivered in-person.

Coordinating independent feedback

We can also coordinate remote activities where patients and/or members of the public complete tasks independently. We will collate their feedback for you in a report.

Example engagement objectives

Common tasks and objectives 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

Talk to our team if you have a different request. Use the contact details below.

Example timelines for service delivery

On average the service takes approximately 35 days to deliver which can be broken down as:

Stage 1: Scoping and recruitment

  • Define contributor profile: We will work with you to develop an ‘ideal contributor profile’. This usually takes 1 to 2 days.
  • Sign your letter of agreement (LoA): Activities and deliverables are agreed and documented. This usually takes no longer than 4 days.
  • Recruit public contributors: We share the engagement opportunity through our networks and advertise on our channels for 2 weeks.
  • Select public contributors: we provide anonymised profile data so you can choose the most appropriate contributors. Expect to complete this task within 2 days.

Stage 2: Engagement

  • Consenting contributors and preparation and facilitation of the engagement activities usually takes between 7 to 11 days to complete, depending on which engagement activity you have chosen.
  • We aim to send your summary report of the activity within 2 working days.

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 contributor, 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. Provide information about yourself, your company and an outline of your engagement goals e.g. review patient information sheets, gather trial design feedback, or seek advice on a study's timeline. Let us know how you wish to collaborate with the public, for instance, group insight sessions or by setting tasks for individuals to complete. Include any key criteria you would like the people participating in this activity to meet.

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 contributors

Once an LoA has been signed, we use 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. Your form submission is kept confidential within our team, but 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: Contributor selection

We will collate details of the people who have expressed an interest in taking part into an anonymised list. We will then help you to choose who you would like to invite to participate.

Step 6: Activity facilitation

We will support you to plan your activity. For insight sessions, we will guide you in preparing a presentation about your proposed research for the contributors. We can also help you to develop questions to ask them. On the day of the engagement activity we will ensure everything runs smoothly and manage all aspects of the payments to contributors (as 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 contributor 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 use the service but would like to know more contact the Industry team

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.

Explore more support from the NIHR

This service is just one of the ways we help life science organisations. Visit our NIHR support for industry page to discover our full range of support or explore all our services and support.

Contact the Industry team

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