Date: 15 October 2018
The NIHR Clinical Research Network in the Eastern region have partnered with the University of East Anglia’s (UEA) Aphasia Research Collaboration (ARC) to create an important new patient survey where people with aphasia who have taken part in research can give feedback on their experiences. The ARC’s members include people who have experienced aphasia, along with members of staff from the UEA’s School of Health Sciences.
Aphasia is a language impairment affecting spoken language, reading and writing ability and understanding, which can often follow brain injuries such as a stroke. Participant perspectives are vital to helping the NHS improve how clinical research is conducted but limits to language can sometimes create obstacles to people accessing feedback forms and conveying their experiences.
The survey is available as a paper version but the partnership have also built a digital version, both of which have been developed to ensure the survey is accessible to people with aphasia. The online platform presents the survey in more accessible ways, including both readable and spoken formats, and answers given by clicking multiple choice options, making responding as accessible as possible.
The survey was launched at a packed event on Friday 21 September at the UEA. Members of the ARC and NIHR presented on the project and demonstrated the survey to attendees, who included members of the UEA research community, NHS management, clinicians and consultants, and members of the public. Attendees were also privileged to hear from some of the ARC members who spoke about their experiences of living with aphasia.
Dr Ciara Shiggins, Speech and Language Therapist, and Academic Fellow at the UEA, said: “Communication accessibility is an ethical issue. All those who access the NHS, including those with aphasia, should have the opportunity to share their experiences of the research process, to ensure that researchers and clinicians can respond appropriately to these and make healthcare as accessible and acceptable as possible. Co-producing this survey with the ARC and clinicians was essential to ensure that the content, format and modes of the survey were appropriate for people with aphasia. I was delighted to work on this project and with the NIHR.”
David Orr (pictured), Chairperson of the Norwich Stroke Survivors’ Club and a member of the ARC, said: "I am just so impressed and encouraged that the NHS is taking the time to talk to stroke survivors and look at what our communication needs are and to seek our opinions.”
Fiona Robertson, Chief Operating Officer for the research delivery arm of the NIHR in the Eastern region, said: “Our research is always enriched tremendously by working together with patients and the public so we're incredibly grateful to all who get involved. By developing this tool to increase feedback opportunities we can continue to make the clinical research environment more accessible for those who give their time to help the NHS find new life-changing treatments for patients now and in the future.”
It is hoped that this platform will encourage the development of further projects to improve communication and engagement in clinical research.
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