In Patient and Public Involvement (PPI)
Members of the public have a lot to contribute to research. Not just as participants but also by partnering with researchers to improve research. People's unique, personal experience of healthcare and/or of a health condition brings a valuable fresh perspective. Below are some examples of how the public have contributed to shaping our research and setting agendas for the future. We also include activities we have developed to help support members of the public in getting involved.
Members of the public setting future research agendas
We have led in co-ordinating two James Lind Alliance Priority Setting Partnerships. The James Lind Alliance is a non-profit making initiative which was established in 2004. It brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise the Top 10 uncertainties, or 'unanswered questions', about the effects of treatments that they agree are most important. The aim of this is to help ensure that those who fund health research are aware of what matters to both patients and clinicians. In so doing, our most important stakeholders in healthcare - patients, public and clinicians - influence future research in health.
James Lind Alliance Mild-Moderate Hearing Loss Priority Setting Partnership
This project was completed in September 2015, with further detail provided in our news section.
The top 10 ‘unanswered questions’ for research into the prevention, diagnosis and treatment of mild-moderate hearing loss in adults were decided at the James Lind Alliance Priority Setting Partnership final workshop on Thurday 3rd September 2015. These priorities will guide our research for people who have hearing loss described as mild or moderate:
- What adverse effects are associated with not treating mild to moderate hearing loss in adults?
- Does the early fitting of hearing aid(s) result in increased patient benefit and/or improved cost-effectiveness of the service?
- Does the early fitting of hearing aids slow the rate of cognitive decline?
- What are the reasons for low hearing aid uptake, use and adherence?
- Can new technologies replace hearing aids?
- Can stem cell therapy offer a cure for mild to moderate hearing loss in adults?
- Does early identification, diagnosis and treatment of mild to moderate hearing loss prevent further deterioration of hearing?
- Could new developments to digital hearing aids offer improved speech perception in noisy environments?
- How realistic are hearing tests for assessing the everyday hearing abilities of adults with mild to moderate hearing loss?
- Could the use of real-world sounds to help program hearing aids in clinic (rather than tones or beeps) improve hearing aid effectiveness?
James Lind Alliance Tinnitus Priority Setting Partnership
This project was completed in July 2012. The top 10 priorities identified have already influenced the direction of our research and will continue to do so. See our page on 'Our successes - In research' for more detail.
Supporting members of the public in reviewing research
We have led in developing a training programme, across the East Midlands, for members of the public. This is to help support them in reviewing grant applications, study plans and recruitment information for participants. The programme was developed in collaboration with members of the public and research organisations across the region, with financial support from the East Midlands Academic Health Science Network. Thirty people attended the free training and feedback has been extremely positive.