Engaging with, and asking patients about their experiences of taking part in clinical research provides research professionals with a wealth of information which helps to shape how research is designed, conducted and delivered. Over the past 2 years, the Clinical Research Network North East and North Cumbria (CRN NENC) has been involved in a national initiative, the Patient Research Experience Survey (PRES) which involved collecting patient feedback on their experiences of taking part in health related research, to help us learn what is good and what could be improved, from a patient viewpoint.
The results are now in and they are really encouraging. This year, 80% of patients strongly agreed that they had a good experience of taking part in a research study and 72% strongly agreed that they would take part in another study. The survey results have provided very useful insights into why patients take part in research, what they like or dislike about the experience and a wealth of feedback about various aspects of taking part in a research project. Research staff have found this information invaluable, and it has allowed them to discuss within their teams, how changes could be made to optimise patients’ experiences.
CRN NENC have approached this project in a unique way. In most areas of the country, a generic version of PRES is used for all research patients. CRN NENC have worked with some specialties to design PRES questionnaires which are specific to patients participating in research in those particular fields and whenever possible, patient groups have been included in the survey development. Patients are asked by their research teams to anonymously complete around ten questions on a pre-printed PRES survey, which can then be folded and sealed and returned to research staff.
Earlier versions of PRES resulted in research experiences being collected from a small number of patients in 3 specialties only, using a ten page survey. Following feedback PRES was significantly reduced in size and this has meant that around 800 patients completed a one page survey in 8 specialties across 11 Hospitals and several GP practices. It is hoped that the number of participants will continue to increase, year on year, so that eventually all research patients have a chance to become involved and provide vital feedback to research staff.
To enable this to happen, development and distribution of the PRES questionnaires will continue and will include new groups of patients. New methods of including research patients will be developed and the feeding back of data will be done even quicker in the future, so that any areas for improvement can be highlighted as quickly as possible. Findings from the PRES will be circulated to staff and patients using different methods, including; posters, leaflets, flyers and social media. It is hoped that this will raise the profile and understanding of the initiative and encourage more patients to participate in research and in PRES. CRN NENC are committed to continuing to be involved in this national initiative. We will continue to work collaboratively with others, both locally and nationally, in order to share good practice, developments and lessons learned, in order to make PRES a routine part of NHS research practice.