CSP070: Participant in Research Experience Survey

The Participant in Research Experience Survey (PRES) has been conducted annually by the National Institute of Health Research (NIHR) Clinical Research Network (CRN) since 2015/16. Local Clinical Research Networks (LCRNs) work with Partner 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 CRNCC PPIE Team alongside the PRES Advisory Group. This group includes public representatives, LCRNs, Partner Organisations and representatives from CRNCC. The group provides expert advice and decision-making for the overall content and design of PRES.

The survey is delivered by 15 LCRNs, through NHS Partner 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 by the Picker Institute Europe on an annual basis. Results from PRES are reported on a quarterly basis to the Department of Health and Social Care as part of a performance measure for the CRNCC. 

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

PRES is classed as a High Level Objective (HLO) for the CRNCC, and therefore is one of the CRN’s key performance measures reportable to the Department of Health and Social Care.  The HLO requirements are as follows:

• Objective: Demonstrate to people taking part in health and social care research studies that their contribution is valued

• Measure: Number of NIHR CRN Portfolio study participants responding to the PRES, each year

• To put the research participants’ experience at the heart of our services (this includes research funding, workforce development, research design and delivery)

• 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 participant experience and address any barriers to participant recruitment and retention

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

We achieve these aims by: 

• Providing the opportunity for all research participants to share their experiences from research in health and social care settings

• Regularly benchmarking, evaluating and improving the design and delivery of PRES to match the changing research landscape and the changing needs of participant populations 

• Working collaboratively with the PRES Advisory Group and wider health and social care settings to directly improve participant experiences at the local and national level based upon data we collect and by sharing this in a timely and effective manner  

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

• Disseminating local and national insights about participant experiences to our key stakeholders (e.g. NIHR Coordinating Centres, infrastructure etc.)

The CRNCC will agree an annual national PRES target with the DHSC. All 15 LCRNs will be set an individual target response number that contributes towards the national target. National and local PRES response targets will reflect each LCRN’s total recruitment activity to PRES eligible portfolio studies, as recorded by the end of quarter 4 of the previous reporting year. 

LCRN targets will be calculated by the CRNCC at the end of April each year. LCRNs have 4 weeks to discuss their target and agree any alterations before targets are confirmed at the end of May. 

Quarterly PRES response rates are collected from Individual LCRNs and individual progress is considered against annual targets and then reported to DHSC.  It is important that LCRNs 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 LCRN targets:

• Standardised adult survey responses 

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

• Visual impairment survey 

• Easy-Read survey 

• Digital PRES responses 

The following PRES responses are counted towards LCRN targets:

• Standardised adult survey responses  (including responses on any capped surveys up to the cap)

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

• LCRN local PRES version responses that have been approved for inclusion by the CRNCC prior to use

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 CRNCC will cap responses from that study at 30% and any further responses will not be counted towards individual LCRN or national targets.    

Following consultation by CRNCC 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. The CRNCC cannot make such enquiries on behalf of individual organisations. 

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). However, this is only to be agreed by the CI/PI of the study and by mutual agreement by the CRNCC.

You can choose to collect PRES responses from participants on other studies that are not on the NIHR portfolio, however LCRNs will not be able to submit those responses against their High Level Objective target. 

We also advise that sites acting as a Participant Identification Sites (PIC) only for a study are not required to deliver PRES, as there will be no patient interaction in this process. 

National standard versions 

As of April 2023, 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 version of PRES available to download from the PRES microsite: 

• Visual impairment 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 PPIE 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 

An national standardised online version of PRES is planned for development in late 23/24. In the meantime, LCRNs 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.

Ok to Say No survey

For 2023/24, Ok to Say No surveys will not be counted towards LCRN PRES targets. Further development of this survey will be undertaken by CRNCC in conjunction with LCRNs and public representatives.  

Centralised Processing

From April 2023/24 the only accepted paper version of PRES (for both adult and childrens’ versions) will be the centralised processed version (see PRES microsite). LCRNs will be asked to submit print orders bi-annually to the CRNCC and these will be passed to our contracted print supplier at the University of Leeds. Orders of the centralised processed paper versions of PRES will be sent directly to LCRNs and invoiced directly. Approximate quantities based on previous year’s PRES submissions can be obtained from the CRNCC PPIE Team. 

Our contracted supplier, Adetiq, will process all paper PRES responses and report data to the CRNCC team on a bi-weekly basis. Approved LCRN 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 LCRNs. The quarterly combined data report will also be shared with COOs and DHSC as part of CRNs HLO reporting requirements.

A PRES microsite has been developed to support LCRNs and Partner 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 Partner organisations

• PRES reporting guidance 

• Centralised processing support and SOPs

The content of the site is reviewed and updated regularly by the CRNCC. Please contact us if you have any questions or if you wish to highlight any errors. 

PRES is recommended to be delivered towards the end of a participant’s research journey, to capture the full 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 needed. 

For 2023/24 the CRNCC PPIE Team recommend that study delivery teams add PRES to the schedule of activities for a study, with the agreement of the PI/CI. The timing of this can be at the discretion of the study teams and adaptable to fit the needs of the participants. 

We do recommend that study teams deliver PRES at the same time point per study (i.e. at visit 6) across all sites and locations to ensure responses are comparable and representative. 

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 LCRN 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.

LCRN 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. 

LCRNs 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. LCRNs are encouraged to have a representative for their region on the PRES Advisory Group (either an LCRN colleague or Partner 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), LCRNs are responsible for identifying a ‘data controller’. LCRNs 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 CRNCC will be Angela Polanco - National Head of Public Engagement. Both the CRNCC and Adetiq will adhere to the NIHR Data Privacy Policy for the collection, processing and transferring of PRES data.

LCRNs are required to upload PRES responses collected for VI/Easy Read and Digital PRES using the standard HLO reporting spreadsheet available on the SEC toolkit. LCRNs 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 portfolio, research  specialties and specific Partner 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 to the CRNCC via the spreadsheet and any unattributable paper PRES responses from Adetiq will not be counted towards annual PRES targets for LCRNs. 

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.  A new data checking software will be piloted with 3 LCRNs in Q4 of 2022/23 with a view to adding this checking procedure into the data upload process from 2023/24. More information about this will be published on the PRES microsite.   

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

An annual summary of national PRES responses will be created by Picker and published by the CRNCC. The report is available as a digital version, with printed copies available on request. The annual report is published on the NIHR website and LCRNs 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 Partner organisation websites. We actively encourage LCRNs to maximise sharing of local and national PRES data to demonstrate our commitment to transparency and continuous improvement based on participant feedback.  

CRNCC will disseminate the annual national report to key stakeholders within the NIHR, research funders and appropriate external partners and agencies.

LCRNs are asked to publish an annual PRES report to share with their networks and research participants. This can be delivered in print or digital format and should be accessible to patients, public and research delivery workforce. It should summarise PRES data from the previous 12 months and showcase local improvement actions taken as a result of PRES. 

We recommend that LCRNs also share this 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

CRNCC will host 1:1 drop-in sessions with each LCRN following the publication of the annual reports to discuss local trends and recommendations for future continuous improvement activities. 

The following are the key deadlines and milestones for the delivery of PRES:  

February

• CRNCC to confirm PRES versions to be used for next reporting year

• LCRNs to submit orders for Centralised Processing version of PRES for Q1&2 (adult) and 23/24 (child) to CRNCC 

• LCRNs to provide named contact for invoicing and delivery of paper forms 

• LCRNs to inform CRNCC of digital platform to be used for PRES (if applicable)

• CRNCC to provide estimate LCRN HLO targets for PRES for 23/24

April

• Launch of 2023/24 PRES

• Launch of Centralised Processing for all paper version of PRES (adult and child)

•  LCRN annual targets agreed and approved for 23/24 by CRNCC

Mid July

• Quarter 1 data submitted by LCRNs 

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

August 

• Local PRES Annual report submitted by LCRNs 

September 

• Quarter 3&4 orders confirmed and sent to LCRNs for paper versions of PRES (adult) 

Mid October

• Quarter 2 data submitted by LCRNs 

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

Dates TBC

• Quarter 3 data submitted by LCRNs

• Quarterly update report (Q3) provided by CRNCC (approx. 14 days after data upload)

• Quarter 4 data submitted by LCRNs

• Quarterly update report (Q4) provided by CRNCC (approx. 14 days after data upload)

Annually, we recommend that LCRNs identify an opportunity for continuous improvement of research delivery, based on the findings of the previous year’s PRES report. 

Improvement projects should use a combined data-driven and participant insight approach and ideally be delivered together with key stakeholders and participants/public representatives. 

LCRNs will be asked to report on their continuous improvement activities for PRES as part of the PPIE Impact Framework for PRES.

Angela Polanco

National Head of Public Engagement

angela.polanco@nihr.ac.uk

Mehreen Kunwar

Senior Information Analyst

mehreen.kunwar@nihr.ac.uk

CRNCC PPIE Team

crncc.ppie@leeds.ac.uk

CI: Chief Investigator

CRN: Clinical Research Network

CRNCC: Clinical Research Network Coordinating Centre 

DHSC: Department of Health and Social Care

HLO: High Level Objectives

HRA: Health Research Authority

NHS: National Health Service

NIHR: National Institute for Health and Care Research

LCRN: Local Clinical Research Network

PI: Principal Investigator 

PPIE: Patient and Public Involvement and Engagement

PRES: Participant in Research Experience 

Version number: 2.0 

Effective from date: 1 April 2023

• Centralised Processing for all paper surveys 2023/24 

• PRES Eligibility 

• PRES delivery timing 

• PRES reporting 

• CRNCC support