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This section presents key PRES delivery information for Delivery Organisations. If you have a question about local delivery which is not addressed on this page please speak to your Regional Research Delivery Networks (RRDNs) PRES Lead.
PRES guidance for Delivery Organisations
PRES guidance for Delivery Organisations
The following documents are available as OpenOffice Documents (.odt) files. These files are widely compatible with a range of different office suites (e.g. Microsoft Word, Google Docs, Apple Pages) and are relatively easy to convert back and forth to different file types. If you require these documents in an alternative format (e.g. PDF) then please make a request to rdncc.ppt@leeds.ac.uk.
Quote from 2022-2023 PRES Respondent
“From the very first phone call all the staff were absolutely lovely and caring. They stopped what they were doing and listened to me and really paid attention. Can't praise them high enough. Everything was explained at the correct level for my understanding. I left feeling totally confident in what I was doing. I knew that any problems that the staff were only a phone call away. My results were also well explained. ”
Ethical guidance
Ethical guidance
Following consultation by the Research Delivery Network Coordinating Centre (RDNCC) with the NHS Health Research Authority (HRA) in 2019, it has been confirmed that PRES is not research and does not require NHS ethical approval before being conducted within health and social care settings. The HRA advises that the results obtained from their online decision-making tools can be taken as authoritative. These are:
Is my study research?
Do I need NHS Research Ethics Committee (REC) approval?
These results are in line with the harmonised UK-wide edition of the Governance Arrangements for Research Ethics Committees (GAfREC) 2018; the UK Policy Framework for Health and Social Care Research (2017) and the National Research Ethics Service (NRES) Defining Research Table and algorithm ‘Does my project require review by a Research Ethics Committee?’.
Download the results of the HRA decision-making tools for PRES.
Inclusion of studies and participants
Inclusion of studies and participants
PRES can be delivered on studies that are supported by the National Institute for Health Research, Research Delivery Network (NIHR RDN).
You can collect PRES responses from participants on other studies that are not on the NIHR portfolio but you will not be able to submit those responses to the Regional Research Delivery Network (RRDNs) against the local target.
Important: PRES may not be suitable for some studies or participants. Studies that are exempt include those which are classed as non-consenting and 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 RDNCC.
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.
You should contact your RRDN for support or guidance around which studies to carry out PRES on.
Any participant on a PRES eligible study should be offered the opportunity to complete PRES.
Important: A participant should only complete PRES once per study.
Important: If a participant is taking part in more than one study eligible for PRES, they may complete PRES once for each individual study.
Some participant groups will need accessible or otherwise adapted versions of PRES. These versions may be available locally or nationally and your RRDN will be able to help you identify the versions you need.
PRES is intended to be a rolling survey which means that in many RRDNs it is open constantly and any eligible participant can take part in it throughout the year.
Resources:
Distribution
Distribution
PRES is intended to be a rolling survey open between 1 April to 31 March. If for any reason ongoing delivery is not possible in a delivery organisation, LCRNs must support the delivery of PRES within the timeframe that the delivery organisation can deliver it.
PRES should ideally be distributed in a way that allows participants to complete it alone as far as possible, not in the presence of the researcher or another member of staff. This is to reduce bias and enable them to give the most honest and useful feedback. However, individual participants' accessibility needs should be taken into account and assistance offered to help complete PRES where an alternative version that is more accessible to them, is not available.
PRES is designed with the assumption that it will be distributed during a participant’s final engagement with a study. 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 2024/25 the RDNCC Public Partnerships 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.
A research participant should only ever be asked to complete PRES once for any study they are enrolled in.
Try, as far as possible, to give PRES to participants at the same stage of the study so the survey measures a consistent length of experience. If you are not able to distribute PRES on the participant’s final engagement with a study and need to distribute it at another stage in the study, then your RRDN can support you with this.
For studies where participants may have to attend more than one site studies as part of the same study protocol (e.g. both a GP surgery and a secondary care clinic) only one of the sites will be able to report PRES for that particular study, to avoid double counting within the RRDN targets. If multiple sites within one study wish to conduct PRES, the CI/PI should coordinate reporting to ensure only one response per participant per study is counted in their reporting.
Centralised Processing of Stick & Fold Paper PRES
Centralised Processing of Stick & Fold Paper PRES
Following the successful delivery of the Central processing pilot in 2022/2023 across 9 Local Research Delivery Networks and their positive feedback, a decision has been made to roll out the central processing across all RRDNs for 2023/2024. Similar to the pilot respondents complete a self-sealing 'stick and fold' version of PRES that either the respondent or research staff can put directly into the post to return by Freepost. The completed surveys are returned to the data processing company for data input. The data are returned to individual RRDNs and RDNCC for analysis.
Centralised processing of PRES paper surveys means:
all paper surveys from any RRDN use the same Freepost address and come to a single PO Box
the surveys will then be opened and the data will be inputted at one location
on a weekly basis, the inputted data and images of the paper surveys are returned securely to the RRDN and distributed them
the original paper surveys are securely destroyed by the central processor
The aim of the central processing model is to:
decrease the time spent by RRDN and Delivery Organisations manually inputting responses into reporting systems so more time can be spent on growing engagement with PRES and acting on the findings
increase accuracy and reduce duplication of data entry by working with a specialist service provider
centralise systems and processes that increase efficiencies through economies of scale
All PRES paper copies including adult and 3 children surveys are part of the central processing. All RRDNs have received their local paper versions before 1st April 2024. The PRES paper copies are bespoke surveys and the design, layout, dimensions, and colours are not to be altered in any way. The Easy Read version and large print/ visual impairments versions are the only versions that can be printed locally by RRDNs. As part of this process, no other PRES paper versions will be accepted.
Resources:
PRES Central Processing (CP) FAQ
PRES Central Processing (CP) FAQ
Information Governance and Data Privacy
Information Governance and Data Privacy
You will need to work with the Data Governance Lead and/or other relevant staff in your organisation to ensure that data responses from PRES are handled legally within your organisation.
Your local processes for managing PRES data will need to be based on what type of information the responses include. Respondents may input identifiable and sensitive data on either paper or digital versions of PRES (there are written instructions on the survey advising participants that they must not share personal data.) Therefore, PRES data should be handled with the assumption that it could include sensitive and identifiable data.
The types of issues you are likely to need to consider, and which your organisation’s Information Governance lead can advise you on are:
Having processes and limits in place for the retention of PRES data
Having processes in place for the management of concerning information shared via a PRES form
Ensuring only the right staff have access to your PRES data
That your PRES data is retained somewhere suitably secure
RRDNs and their host organisations are responsible for the legal processing of data once you have passed it to them through locally agreed processes.
When data is shared with the national RDNCC team for reporting, it has been pre-anonymised by the RRDN and so the RDNCC will never hold identifiable or sensitive data about any research participant in your organisation. For any information held by the RDNCC, the data controller is the Department of Health and Social Care.
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