About PRES 

Through PRES we aim to put research participant experience at the centre of research delivery so that we can:

• Demonstrate to research participants that their contribution is valued 

• Positively impact recruitment and retention within research studies 

PRES delivers these aims through:

• Providing an opportunity for as many research participants as possible to share their experience of taking part in research 

• Promoting collaboration between research teams and research participants to co-produce solutions to research experience challenges 

• Increasing the research workforce's understanding of factors contributing to a positive research experience for participants

• Increasing awareness of factors likely to impact participant recruitment and retention during the design of new studies

PRES began as a pilot within a small cohort of the 15 Local Clinical Research Networks (LCRNs) and their Delivery Organisations. Between 2015/16 and 2018/19 the survey became part of the CRN's core business - as reflected by it becoming an HLO. PRES continues to be delivered by all 15 LCRNs, and the number of their delivery organisations is increasing.

In 2019, the NIHR, in conversation with stakeholders across the network and beyond, decided to nationally standardise the survey questions and methodology. 

The aims of this change were to: 

• Support the long-term ambition of every participant in an NIHR-supported study has the opportunity to feedback about their experience

• Increase the usefulness of the data collected by PRES 

• Increase capacity for researchers and the organisations they work for to disseminate and act on the results of PRES by reducing the local capacity needed to deliver the survey

The NIHR analysed previous surveys and then commissioned the Picker Institute, a charity with globally recognised expertise in patient experience measurement, to further analyse the surveys and methodologies. This led to the development of a new national set of questions for adults and children, as well as new delivery guidance. 

Important: The new national approach for PRES came into effect in April 2020.

(Note: The Research Delivery Network replaced the Clinical Research Network on October 1, 2024. 12 Regional Research Delivery Networks (RRDNs) replaced the current 15 Local Clinical Research Networks (LCRNs) on October 1, 2024.)

Demonstrating you are promoting a research-active culture  

Promoting a research-active culture in your organisation is a requirement of the NHS Long Term Plan and Well-Led Framework, and research and innovation are recognised in the Care Quality Commission's strategy as being important for accelerating improvement. To fulfil these expectations, your organisation must demonstrate that you:

• Enable staff to deliver research

• Promote research participation to patients and carers 

• Involve patients and carers in your research initiatives

PRES can support you to evidence that you are involving patients and carers in your research initiatives. 

The NHS Long Term Plan recognises the 'critical importance of research and innovation to drive future medical advance'. Research has shown that ‘Research-active’ hospitals (and GP surgeries) have lower mortality rates, with benefits not limited to those patients who participate in research. Patients benefit enormously from research and innovation, with breakthroughs enabling the prevention of ill health, earlier diagnosis, more effective treatments, better outcomes and faster recovery. 

The Well-Led Framework (NHS Trusts) expects that there are: ‘robust systems and processes for learning, continuous improvement and innovation within health and social care NHS Trusts. This is assessed as part of inspections through a review of the extent to which staff are participating in the delivery of research and the extent to which patients and carers are aware of opportunities to engage in health and care research. 

In addition, the 2018 CQC Inpatient Survey asked respondents ‘During this hospital stay, did anyone discuss with you whether you would like to take part in a research study?’ This Inpatient Survey revealed that 86% of respondents said no one discussed with them whether they would like to take part in a research study. However, the potential to recruit more patients seems to exist as only 2% of respondents said they discussed this but did not want to take part. Comparable results were also seen in the 2019 Inpatient survey. The Inpatient survey only captured a certain segment of patients though. PRES is a way to reach wider research participants and demonstrate you are actively engaging them in research.

Celebrating successes and improving research delivery in your organisation

Feedback from research participants can help your team understand both what you are doing well, and where there are opportunities to make changes to improve the experience of participants taking part in research at your organisation. Research has highlighted the importance of ensuring that patients and families are given an opportunity to feed into the system which has been set up to protect and care for them. 

The 2023/24 PRES results were highly positive with the vast majority of respondents reporting a positive experience of taking part in research. These results can be affirming and motivating for research staff, especially the free text responses where research participants are able to share what they particularly value about taking part. 

Where participants report a negative experience this is also really helpful for research teams. RRDNs and Delivery Organisations across the country have been able to use feedback about what didn’t go well to inform improvement projects. This has led to the introduction of many new initiatives in research delivery teams aimed at improving the experience of research participants.

A review of NIHR research looking at improving care by using patient feedback showed that while there is much work in NHS organisations exploring how to collect and use data about patient experience, this work can be disjointed and stand alone from other quality improvement work and that a managerial focus on ‘bad’ experiences means that rich information about what goes right and what can be learnt from can be overlooked.

PRES offers a standardised approach to examining participant research experience, pulling together findings that are directly comparable from across the country. PRES has been designed as a continuous improvement tool providing the opportunities to reflect on 'what went well' from the participant's perspective as well as providing the opportunity to share what could have made the experience better. 

To give research participants the greatest influence

By completing PRES, research participants are given the opportunity to use their own experience of taking part in research to help shape research far beyond the study they have taken part in or the healthcare service they have used. PRES results are published nationally and shared with stakeholders across the research system, including in research funding and design. 

Many of the negative issues that participants raise about their experience simply can’t be dealt with by the research delivery teams alone - they are often issues that have arisen from the research design, or even funding requirements. By completing PRES, participants are able to ensure their experiences are shared with the bodies that influence the whole research system.

To shape and improve an influential participant experience measure

In joining the PRES community, research teams are offered a unique opportunity to contribute, learn and discuss the patient experience in the context of its measurement, and its impact. PRES is the largest survey of its kind in the country, and by having a larger volume of valid data from a wide range of study designs, we generate knowledge to share with research funders and research design teams. In turn, these data can help to support them in providing better health and social care research in the future. 

PRES can work alongside other surveys

Many studies or trusts may have their own surveys of research participants or about patient care and PRES has been purposefully designed to complement this by keeping the question set short and focussed.