Welcome to the third of our Patient Research Experience Survey Updates. 

With just under three months to go until this year’s survey closes on March 15, 2020, we’ve now received 275 completed surveys and added them to the PRES Dashboard. This means we’re just over 50 surveys from the minimum expected in this year’s High Level Objective (HLO8). This is a terrific achievement and all down to the support of those working in research across North West London – thank you

However, we can’t rest on our laurels – our ambition is to complete 600 surveys, and with the ever-increasing trajectory of survey returns thanks to your support, there is no reason we can’t reach this! In particular, we would like to increase the number of online surveys completed – you can find out how to do so later in this e-newsletter. 

If you have completed paper copies of the survey ready for collection, please email us at comms.crnnwl@nihr.ac.uk and we’ll arrange for them to be picked up by a member of our team or make other arrangements to get them back to us and on the Dashboard ASAP. 

In the final quarter of 2019/20 we will also be looking at areas for innovation and improvement based on survey responses. If you have any suggestions, or are perhaps already engaged in plans based on results so far, please email me

Finally, we would like to wish you a Merry Christmas and a Happy New Year and we look forward to working with you all in 2020.
Dani Neal, Communications and PPIE Manager

Get Feedback Fast 

Are you involved in a study where you see participants less often, or are only in contact with them by email, text or phone?  Or perhaps you are involved in a larger study where you are able to text or email participants? We recommend sending out the online version of the Patient Research Experience Survey.  Any surveys completed online will be added to the PRES Dashboard within hours of completion, allowing you to respond quickly to any feedback. 

We can supply you with a survey link for individual studies, with the study and site details all pre-loaded. We can also discuss adding any extra questions you’d like to ask your study participants.

This is a low-effort, high response way of helping Trusts reach their individual HLO8 targets as well as helping us reach our goal of 600 responses. And most importantly, we’ll have shown the people taking part in these studies that their contribution is valued. 

If you are able to send out the PRES this way then please email the Communications and Engagement Team and we’ll supply you with everything you need.  

Sites and Studies of the Month

The study with the most responses at the end of the 2019 is the NUC-B trial. All responses were collected by the Liver and Anti-Viral Unit at St Mary’s Hospital, part of Imperial College Healthcare NHS Trust.  This unit also remains our top recruiting site, with 43 completed surveys to date.

The site recording the biggest increase in the number of surveys returned since the previous update is Northwick Park Hospital, part of London North West University Healthcare NHS Trust. They have now returned 43 surveys, up from 12 in mid-October. Congratulations!

Research Champions
 At the end of the PRES, participants are able to let us know if they wish to be contacted about other ways they can take part in research.

We’ve sent everyone who has done this so far an email inviting them to take part in our newly launched Research Champions scheme, which brings together and replaces our Patient Research Ambassador and Join Dementia Research programs.

Research Champions volunteer their time to help spread the word about health and care research to patients and the public, and especially those groups who are currently less likely to take part in research. They also help research and healthcare staff understand more about the experiences of those who take part in research. Everyone who signs up will be offered training and support. Our Research Champions will also help us with reviewing this year’s survey results.

We hope to introduce you to the first of our new Champions in the next update! 

What people have said about their experience.

“I recommend that everyone should take part in research because if they find anything is wrong with you, it will be looked at right away.”
Participant in a cardiology study at Royal Brompton Hospital.

“I think it’s important to put something back into the health service, particularly in view of its excellent life saving service that I have received.”  

Participant in a neurology study at London North West University Hospitals Trust. 

“I felt I was being proactive and trying something that could help with my pregnancy, and it worked for me and could help others too.”

Reproductive Health Study Participant. 

If you have any questions or suggestions, please get in touch with our Patient and Public Involvement Lead, Dani Neal, who will be more than happy to help! 

Email: danielle.neal@nihr.ac.uk
Phone: 020 3313 4012 
Mobile: ​07788 388 082

You can also find answers to most questions on the PRES page of the CRN NWL intranet – no log in required.

We’re sending this update out to R&D teams as well as everyone who has ordered surveys from us. If you didn’t receive this email directly, you can subscribe to future updates here

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