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CRN North East and North Cumbria PRES FAQs

Contents

To help researchers provide a more streamlined and straightforward feedback service, we have collected the most frequently asked questions around the digital PRES (Participant Research Experience Survey).

Q. Why are we asking research participants to complete the Participant Research Experience Survey?

A. We believe it is important to give people who take part in health research the chance to tell us what it is like. We value their support and want to make their research experience as positive as possible.

Q. Do participants have to take part in PRES and will you know who they are?

A. The survey is entirely voluntary and anonymous. No-one has to take part and participants do not need to tell us who they are. No matter what they tell us, it will not affect their treatment or stop them from taking part in health research in the future.

Q. What will happen with the answers participants provide?

A. We will use participants’ responses to help us understand what we need to do to make improvements to make the experience better for other people taking part in health research in the future.

Q. Where can I find instructions on how to use digital PRES?

A. More instructions and guidance and resources can be found on our PRES Standard Operating Procedure.

Q. How/where can I access the live feedback from the completed PRES questionnaires?

A. You can access and create your own reports, specific to both Trusts and studies, by visiting our 2021/22 PRES results page.
These reports will be updated daily and allow you to download and share data relevant to your study or site. Comments are not publicly shown on this report to protect privacy, but can be viewed by R&D Managers.

Q. What are the questions on the survey?

A. Each survey asks questions about the information the participant was given about the survey, whether they have been updated about the research, whether they know who to contact if they have questions, how the research staff have been, how long they have been on the study, and whether they would take part in research again. Participants are also given the opportunity to provide feedback on their research experience in their own words in a comment box.

We also ask questions about the participant’s age and ethnicity. This is to help us capture the research experience of all our communities and to look for ways to improve inclusivity in research.

Q. What is the OK to Say No questionnaire?

A. The “Ok to Say No” questionnaire allows us to get feedback on our approach to people who did not choose to take part in research.

Q. How do participants complete the survey?

A. Participants can either complete the survey straight away at the clinic (select the 'Launch Survey Form' option); they can be given a code to access PRES at home in their own time ('Create Survey Code'); or they can be emailed a unique link to access the survey at home ('Email Survey Link').

Q. What are PRES cards?

A. PRES cards are used to write down the code generated from the app if the participant wants to complete the survey at home in their own time and does not want to share their email address. PRES cards also include a link to the PRES website and basic instructions on how to enter the code to access the survey. If you would like to order some PRES cards or receive a pdf version to print out yourself, please email nenccommunications@nihr.ac.uk.

You do not need a PRES card if the participant is completing the survey at the clinic, or if they would like the survey link sent to them via email.

Q. Do the PRES codes have an expiry date once they’re created?

A. No. Once a code has been generated there is no expiry date.

Q. Can I create a batch of codes for my study if I know I am seeing a clinic full of research participants?

A. If required, codes can be generated in advance of seeing a participant. However, please do this sparingly and only when the participant has said they would like to complete the survey in their own time. One of our local metrics is to measure the number of invites (codes) generated against the number of responses and any codes that are created unnecessarily will skew the data.

We also offer the option of emailing survey links to research participants in batch. This option is available if you have 10 or more participants you would like to email at once. Please contact nencbusinessintelligence@nihr.ac.uk to arrange this.

Q. What happens if I generate a code and the participant doesn’t complete a survey?

A. This will not count as a completed form. A participant can complete the survey whenever they like. If they close the survey midway through completing it, they can re-enter the code they have been given.

Q. Is there a dummy code I can enter to test the app?

A. If you would like to test the app before you show a participant how to begin the survey, select your chosen study and site, then select 'TEST' from the survey form list. Please do not use any other form than ‘TEST’ if you wish to enter a dummy questionnaire.
The 'TEST' form can be used to show the participant how to use the survey. You can also generate a test code to show them how they can access the questionnaire via a survey code when they are ready to do so.

Q. My study isn't on the drop down list when I enter the app, what should I do?

A. All open studies on the NIHR portfolio are listed under the 'Study' field and are categorised by specialty. They are also identifiable by their CPMS ID number.

If you cannot find your study or if the study has closed to recruitment, please email nenccommunications@nihr.ac.uk with the study's CPMS or IRAS code for support.

Q. Why is there not a paper version of the PRES anymore?

A. We decided to create a digital PRES to increase the reach of the survey, improve the user's experience and allow us to see feedback from research participants faster than before, which means we can share real-time experiences and comments with study teams. Digital PRES also helps us save paper and postage costs.

Q. What about participants who don’t have access to the internet at home?

A. If a participant does not have access to the internet at home, they can complete the survey at the clinic. The researcher should select the ‘Launch Survey Form’ option and hand the device to the participant.