PSP070: Participant in Research Experience Survey

The Participant in Research Experience Survey (PRES) has been conducted annually by the National Institute of Health Research (NIHR) Research Delivery Network (RDN) since 2015/16. Regional Research Delivery Networks (RRDNs) work with Delivery organisations, such as NHS hospital trusts or GP surgeries, to deliver PRES to research participants.

PRES is given to all eligible research participants, all year round. The reporting timeframes run from April-March and align with the financial calendar year. Strategic oversight of PRES is provided by the RDNCC Public Partnerships team alongside the PRES Advisory Group. This group includes public representatives, RRDNs, Delivery organisations and representatives from RDNCC. The group provides expert advice and decision-making for the overall content and design of PRES.

The survey is delivered by 12 RRDNs, through NHS Delivery organisations across England, using paper and digital formats. PRES is provided as a standard survey with additional versions created for Children and Young people (3 age-specific formats), people who are visually impaired and people that require an Easy-Read version. Analysis of the results is undertaken on an annual basis by the RDNCC Public Partnerships team.  

Further information about PRES and the current survey versions can be accessed on the PRES microsite.

The NIHR's ambition is that every participant taking part in an NIHR supported study is given a chance to give feedback about their experience through PRES. Data collected through PRES should be used to inform continuous improvement initiatives at both the research site and national level. 

• To capture research participants’ experiences and use data to help improve and shape our services (this includes research funding, workforce development, research design and delivery)

• To use participant data as evidence to support the NIHR’s position as a world-leading, patient-centric research organisation

• To enable data-driven local and national innovations, shaped by participant feedback to improve the future design and delivery of research studies  

• Increase awareness of what key factors make a positive research participant experience and identify any barriers to participant recruitment and retention for research delivery teams

• Demonstrate the NIHR’s commitment to improving the quality of health and care research through listening to research participant feedback and sharing this with our key stakeholders, e.g. DHSC

PRES helps the NIHR and RDN to achieve delivery against a number of strategic aims by: 

• Providing the opportunity for all research participants to share their experiences from research taking part in a research study, across multiple health and social care settings

• Demonstrating continuous improvement and innovation. We regularly benchmark, evaluate and improve the design and delivery of PRES to match the changing research delivery landscape and adapt to the changing needs of participant populations 

• Working collaboratively with key stakeholders such as the PRES Advisory Group, wider health and social care settings and research delivery teams to use PRES data to directly improve participant experiences at the local level. We collect, analyse and share data in a timely and effective manner to support study delivery and engagement  

• Promoting the use of sharable insights and trends with research design and delivery teams, researchers and participants using local and national reporting frameworks  

• Disseminating local and national insights and trends about participant experiences and (anonymised) socio-demographic data with our key stakeholders (e.g. NIHR Coordinating Centres, DHSC, infrastructure etc.)

The RDNCC will agree a national PRES target with all 12 RRDNs (October 2024 - March 2025) -  being set an individual target response number that contributes towards the collective national target. National and local PRES response targets will reflect each RRDN's total recruitment activity to PRES eligible portfolio studies, as recorded by the end of quarter 4 of the previous reporting year. 

RRDN targets for each quarter will be calculated by the RDNCC together with RRDN Business Intelligence leads and communicated to PPIE Leads. 

Quarterly PRES response rates are collected from individual RRDNs with progress considered against targets. It is important that RRDNs report all PRES responses received for the correct quarter. It is not possible to move or add additional responses to a particular quarter at  a later date. 

The following PRES responses are counted towards RRDN targets:

• Standardised adult survey responses 

• Standardised child and young person survey responses (all three age groups)

• Large Print survey

• Easy-Read survey 

• Digital PRES responses 

Eligible studies will be monitored throughout the year to ensure an even spread of responses per study. If there are significant responses to a particular study, then RDNCC will cap responses from that study at 30% and any further responses will not be counted towards individual RRDN or national targets.    

Following consultation with the NHS Health Research Authority (HRA) in September 2019, it has been confirmed that PRES is not research and does not require NHS ethics approval before being conducted within health and social care settings. 

A copy of the inquiry to the HRA can be found on the PRES microsite. Where an NHS organisation states that they will not accept this inquiry report as evidence that PRES does not require ethical approval, you are advised to contact the HRA directly through their generic queries account: hra.queries@nhs.net. 

All NIHR supported health and social care research studies that are part of the portfolio are eligible for PRES. There are only 2 exclusions to this rule: 

• Studies which are classed as non-consenting 

• Studies that are deemed to be inappropriate to conduct PRES (e.g. extreme trauma or bereavement). 

PRES exceptions for eligibility must be decided and agreed by the Chief Investigator (CI) of the study and will be applicable across all study sites in England.

You can choose to collect PRES responses from participants on other studies that are not on the NIHR Portfolio, however RRDNs will not be able to submit those responses against their response targets. 

National standard versions 

As of April 2024, there will be four national standard versions of PRES available:

• Adult survey

• 0-6 years survey - for completion by a parent/guardian/carer

• 7-11 years survey

• 12-15  years survey

There will be 2 additional adapted versions of PRES available to download from the PRES microsite: 

• Large Print survey 

• Easy-Read survey 

Responses from the additional surveys are required to be reported using the same process as digital surveys and submitted on a quarterly basis. 

There may be occasions when the centralised processed version of PRES or the local digital version of PRES does not meet the needs of the participants. If you feel that there needs to be an additional resource to meet a specific need then please contact the RDNCC Public Partnerships team.  At present we do not recommend that translated versions of PRES are used until a detailed review of available software/options has been completed at the national level. Please refer to our position paper on translation.

Online versions of PRES 

A national standardised online version of PRES is planned for development in late 2024. In the meantime, RRDNs can continue to use local digital PRES data collection platforms and dashboards. Online versions must conform with public sector accessibility requirements.

Excluding the study and site identification information - which must be entered by a member of staff or provided to the participant by a member of staff - no other questions in the online version of PRES should be made mandatory. This is to ensure that respondents are given the same choice not to answer a question as someone completing a paper-based survey.

Centralised Processing

From April 2024 the only accepted standard paper version of PRES (for both adult and children's versions) will be the centralised processed version (see PRES microsite). RRDNs will be asked to submit print orders by the RDNCC team with orders being fulfilled by our contracted print supplier at the University of Leeds. Orders of the centralised processed paper versions of PRES will be sent directly to RRDNs and invoiced directly. The only exception to this will be the alternative versions of PRES (Large Print and Easy Read) which will be locally printed and distributed. 

Our contracted data processor Adetiq, will process all paper PRES responses and report data to the RDNCC team on a bi-weekly basis. Approved RRDN contacts will have access to this data, to enable ‘real-time’ continuous improvement and timely escalation of any serious issues. Centralised processed data will be combined with any alternative PRES and digital PRES responses and sent out in a quarterly report to RRDNs. The quarterly combined data report will also be shared with RRDN Directors and as part of any national impact reporting requirements.

A PRES microsite has been developed to support RRDNs and Delivery organisations with the delivery of PRES and includes a list of: 

• Current PRES surveys 

• Key reporting deadlines and milestones

• Alternative versions of PRES (VI and Easy-Read) 

• PRES delivery guidance for Delivery organisations

• PRES reporting guidance 

• Centralised processing support and SOPs

The content of the site is reviewed and updated regularly. Please contact the RDNCC Public Partnerships team if you have any questions or if you wish to highlight any errors. 

We recommend that PRES is delivered towards the end of a participant's research journey, to capture the full study experience. However, we recognise that often it is not feasible to do this at the last visit and flexibility in the time of delivery is supported.

We recommend that study delivery teams add PRES to the schedule of activities for a study at an appropriate point in time, to fit the needs of the participants and study delivery teams. However, in an attempt to maintain data integrity, we recommend that a discussion with the Chief Investigator of the study take place and that an agreement to deliver PRES at the same time point across all multi-centre study sites (i.e. at visit 6) is made.  

At this time, participants can only take part in PRES once during their study participation. We hope to be able to amend future iterations of the survey to capture experience data at different time points, in particular for studies that are longitudinal or long-term. 

Participants who may be participating in more than one PRES eligible research study are permitted to complete PRES once for each study they are participating in. All responses will be counted to the local RRDN PRES target.

In most cases PRES should be completed by the research participant without assistance to reduce any bias. However, we understand that some participants may require assistance to complete the survey. In such cases, assistance should be offered to help complete PRES.

RRDN PPIE Leads should work collaboratively with Research Delivery Managers, Study Support Service, and research delivery teams to champion PRES and its benefits towards improving  participant experience in research. 

RRDNs can help to increase awareness of PRES with CIs, researchers and health care professionals by actively sharing local and national reports that demonstrate the impact of PRES. RRDNs are encouraged to have a representative for their region on the PRES Advisory Group (either an RRDN colleague or Delivery organisation representative) and are encouraged to share best practice or seek advice across the network at monthly PPIE Lead meetings.

Where PRES responses are collected at the local level (for VI/Easy-Read PRES and digital PRES), RRDNs are responsible for identifying a ‘data controller’. RRDNs are responsible for adherence to the Data Privacy policy of their Host Organisation for any data collected and processed for PRES. 

For data that is collected and processed by Adetiq as part of the centralised processing process, the data controller will be the DHSC. The data owner for the RDNCC will be Angela Polanco - National Head of Public Partnerships (RDNCC). Both the RDNCC and Adetiq will adhere to the NIHR Data Privacy Policy for the collection, processing and transferring of PRES data.

RRDNs are required to upload PRES responses collected for Large Print/Easy Read and Digital PRES using the standard reporting spreadsheet available on the Public Engagement toolkit. RRDNs are advised to read the reporting guidance notes provided and have a high-quality local data quality assurance process to ensure data provided are accurate and error free. To ensure that PRES responses can be linked directly back to the NIHR RDN Portfolio, research  specialties and specific Delivery organisations, the following information is mandatory for each PRES response (for both paper and online collection methods):

• Study name

• Study IRAS/CPMS number

• NIHR research site number

• Type of survey used (paper/online)

Responses that do not contain the required mandatory information will not be able to be submitted via the spreadsheet and any unattributable paper PRES responses from Adetiq will not be counted towards annual PRES targets for RRDNs. 

Local portfolio managers can assist with finding the required information. This information can also be found on the Open Data Platform. Sites are permitted to use labels and stamps to assist in this process and reduce missing information.

The data reporting spreadsheet will remain the same, with a separate tab for Easy Read responses as the data entry will be slightly different.  

Centralised Processed paper versions of PRES will go directly to Adetiq and therefore will not be required to be submitted online. 

An annual summary of national PRES responses will be created by the RDNCC Public Partnerships team. The report will be made available as a digital version, with printed copies available on request. The annual report will be published on the  NIHR website and RRDNs will also be provided with a copy of the report prior to its national publication.

Anonymised quotes and results from the annual survey can be shared on wider communication platforms such as e-bulletins, social media and Delivery organisation websites. We actively encourage RRDNs to maximise sharing of local and national PRES data to demonstrate our commitment to transparency and continuous improvement based on participant feedback.  

The RDNCC Public Partnerships team will be responsible for national dissemination of the annual report to key stakeholders within the NIHR, research funders and appropriate external partners and agencies.

RRDNs will be provided with a draft annual PRES report for their region, which can be adapted and shared as required for dissemination to local networks and research participants. The local report will be shared in a digital format, however a consideration of additional accessibility requirements for patients, the wider public and research delivery work should be made and suitable adjustments offered. The local report will summarise PRES data from the previous 12 months and showcase local improvement actions taken as a result of PRES. 

We recommend that RRDNs share the annual and local report on platforms such as: 

• Local digital dashboards

• Local trust websites or research intranets 

• Local research events or conferences 

• Patient and public places of interest (i.e. waiting rooms, research delivery areas) 

• Learning events for clinical staff or researchers

Mid October

• Quarter 2 data submitted by RRDNs 

• Quarterly update report provided by (approx. 14 days after data upload)

Dates TBC

• Q3/4 PRES targets September 2024

• Quarter 3 data submitted by RRDNs 17 January 2025

• Quarter 4 data submitted by RRDNs 18 April 2025

• 2024/25 PRES Annual report publication July 2025

Angela Polanco

National Head of Public Partnerships (RDNCC)

angela.polanco@nihr.ac.uk

Adetiq: UK data Capture Services

CI: Chief Investigator

CPMS: Central Portfolio Management System 

DHSC: Department of Health and Social Care

GP: General Practitioner

HRA: Health Research Authority

IRAS: Integrated Research Application System

NHS: National Health Service

NIHR: National Institute for Health and Care Research

PI: Principal Investigator 

POF: Performance & Operating Framework

PSP: POF Support Page

PPIE: Patient and Public Involvement and Engagement

PRES: Participant in Research Experience 

RDN: Research Delivery Network

RDNCC: Research Delivery Network Coordinating Centre

RRDN: Regional Research Delivery Network

SOP: Standard Operating Procedure

Version number: 4.0

Effective from date: October 2024

• Updates to language and terminology from CRN to RDN and CRNCC to RDNCC, CSP to PSP

• Removal of reference to HLOs and impact reporting requirements for Q3/4

• Edits to text for PRES delivery, eligibility and reporting expectations for 2024/25