The Eastern Region arm of NHS research (National Institute for Health Research) has teamed up with UEA’s Aphasia Research Collaboration to take the first step in improving the experiences of research participants with Aphasia.
Aphasia is a language impairment whereby patients have difficulty with speaking, reading and/or writing in many different ways. For example, they may have difficulty finding the correct words or struggle to understand what others are saying, but each experience is entirely unique. Aphasia is often the result of brain pathology or injury and can be very challenging and distressing, affecting many aspects of a person’s life.
The partnership has resulted in a survey that seeks to collect the experiences of research participants with Aphasia. Launched at UEA in late September, the survey comes in many formats and has been carefully put together in order to make it accessible to all. Paper, digital, and audio versions are available – with answers given through multiple choice options.
Patient participation and feedback on clinical research is essential to the improvement of medical care. But language difficulties, such as those caused by Aphasia, can create barriers and miscommunications. It is important that those with Aphasia are able to participate fully to ensure that the research represents the wider population. Allowing language obstacles to hinder this group’s research participation is not only unethical but unhelpful in the development of clinical practice.
The project has been warmly welcomed, with the launch event providing opportunities for connections between clinicians, researchers and participants. The survey aims to continue to increase and improve feedback opportunities in order to make the clinical research environment ever more accessible to volunteers, giving a voice to those who might not have otherwise had one.