The opportunity for service users (patients and their families) to get involved with their local ENT, hearing department, hearing aid service or research programme is on the increase. Professionals increasingly appreciate the value of having the patients’ perspective when developing a service or project, and constructive feedback is extremely important and always welcome.
If you would like to be involved, either contact your local department directly or, for NHS services, contact the Patient Advice and Liaison (PALs) service, who will be able to point you in the right direction.
Dr Adele Horobin, Patient and Public Involvement and Engagement Manager, NIHR Nottingham Hearing Biomedical Research Unit, writes:
Research lies behind all aspects of healthcare. We all need and use healthcare, so we are all ‘end-users’ of research. It therefore makes sense for you to help shape what is researched, how it is done and what happens to it afterwards. This makes sure that research is relevant to all our needs and can improve the healthcare available.
You can get involved in all stages of the research process. You do not require any formal qualifications and are not expected to be an expert in any specific field. You contribute your own experience and independent view.
You could be part of the research management team. You could assess funding applications for research projects or ensure that patient information is clear and understandable. You could help in collecting data and making sense of it. You could join a team’s patient advisory group. You could help publicise research outcomes and advocate for putting outcomes into healthcare practice. Those who are already contributing find it interesting and rewarding, as these personal testaments show:
“I have found that becoming involved in the research effort for hearing improvement can be very interesting, rewarding and almost therapeutic; in as much as it helps one to understand your position and appreciate what can be done and sometimes what cannot be done, for your own particular condition.” Eric Emmerson
“I have been doing PPI for three years now. Participating in trials is rewarding, but sporadic since you don’t always meet the criteria. Having a chance to get actively involved in planning and designing the research is doubly rewarding. I have met so many interesting people, both professionals and lay people; I have learnt about medical research and the way things work in medicine; and I have gained a deeper insight into my own medical conditions. Overall, I know that I am indirectly making a difference to people’s lives by helping to improve medical research.” Stevie Vanhegan
“I have only recently become involved with being a lay assessor but I must say that I have found it to be rather interesting. As regards hearing problems – with not having any myself – it has been quite enlightening to read the various reports and papers concerning them. I also appreciated and enjoyed the fact that I could criticise the reports etc. as I personally saw fit.” Delia Horobin
“As I work full-time, day time meetings are not easy, so I slipped into the Lay Assessor role. This I perform from home mainly via computer. As a non-academic who is hard of hearing and dyslexic, my opinion on the formatting and language of research documents aims to make them understandable and accessible to a wide range of prospective volunteers. It gives me an interesting insight into some areas of research which I find thought provoking and stimulating and makes me feel useful. When I receive feedback it is possible to see the impact of my and other lay assessors input in the sometimes considerable changes in format and content of the proposed documents.” Veronica Colley
“I became involved in health research whilst still in hospital recovering from a stroke. I have helped with a couple of projects at the Nottingham Hearing Biomedical Research Unit and do lay assessing for them. I also work with the CLAHRC, mental health team and am a patient representative on the East Midlands Clinical Senate. The work keeps my mind active and allows me to contribute to advances in healthcare in return for the excellent treatment I have received.” Fred Higton
Would you like to get involved in research?
We want to hear from you
- What do you want from BSA?If you have any ideas on how BSA can help increase awareness and understanding of hearing, balance and the science of hearing, then we would like to hear from you. Please contact Tracey Twomey, BSA PPE Lead, via our contact form
- How did you get involved? Send us your storyIf you have experience of working with a clinical or research department, or raising awarenss of hearing, balance and the science of hearing, then we would like to hear from you. Please contact Tracey Twomey, BSA PPE Lead, via via our contact form