In order to understand the experience of patients taking part in clinical research, over the last three years the NIHR Clinical Research Network has worked on ways to collect and understand patient feedback. During 2017/18 a patient survey was carried out by our Local Clinical Research Networks across England and core feedback was collated and analysed nationally.
Delivering research to make patients, and the NHS, better
The number of research participants (or their carers) to feedback in the survey this year was 4,312. This is a 30 per cent increase on last year (2016/17).
People shared their experience in the free text fields, see below.
"The high positive ratings on overall experience (80+ %) are consistent with every survey I’ve seen in this field. But the report includes a neat synopsis of the recurrent themes in the data about what’s high on the priority list for patients."
Simon Denegri OBE, NIHR National Director for Patients, Carers and the Public
"Taking part in the research gave me a very strong feeling that I was getting the best treatment available. Strong feeling of peace of mind."
"Being in the study helped improve my health. I now take the medication looked at in the study."
"I have taken part in a research study previously and have got a good relationship with the nurses so therefore I will be more than willing for another study when this one has finished."
We have a commitment to using patient insight gathered from this survey to ensure we continuously improve our research practise. We will be looking at parts of research business where we can make a positive difference to people's experience of participating. For example, we have produced an 'Optimising Patient Research Experience Checklist' for research staff (see right).
We grouped what patients told us into six themes that showed what aspects of their experience were important. You can read about this in the full report and the 'Optimising Patient Research Experience Checklist' below:
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