I am an independent voice and critical friend offering advice, opinions and guidance to groups and organisations seeking citizen engagement and involvement. Following experiences with the health, social care system and government services I decided to work with organisations to make things work better for others. My background is in legal aid welfare benefits and in addition I worked for NHS England investigating clinical complaints. I work with the Not Equal Network at Newcastle University’s Open Lab, sharing my views and opinions regarding the work they do in collaborative research and innovation for technology that supports social justice. As part of the UK government’s Healthy Ageing Grand Challenge I undertook assessment of funding applications and reviewing proposals for the Healthy Ageing Catalyst Awards. I am a member of the Care Home Interest Group (CHIG) working with researchers at the Population Health Sciences Institute at Newcastle University. I’ve experience as as a patient/public representative on a number of research studies:
The PriDem Patient and Public Advisory Board based at the Institute of Health and Society.
IMPACT Study Patient and Public Involvement Panel based at the School of Dental Sciences, Newcastle University.
Dental Decisions Study, participation in ongoing co-production group regarding enhancing dental treatment decisions for people living with dementia.
What encouraged you to get involved in research?
I joined the VOICE research community of public, patients and carers to make a positive contribution and to try and improve the lived experience of ageing both now and in the future. VOICE, the National Innovation Centre for Ageing and NIHR Newcastle Clinical Research Facility PPI Group (DENTAL CRF, CARU, CRF) has introduced me to so many opportunities and it has allowed me to make a real difference. I have attended many events and I have met a wide range of people from all walks of life and from all over the world. They opened my mind to ideas and experiences that I could never have hoped to discover prior to joining the research community. Some of the subjects I’ve explored have included: international designs developed to improve the lives of those with dementia and carers; innovations in electric vehicles; social exclusion and loneliness; technology that supports social justice; and implementing the Great North Care Record.
Why do you think clinical research trials is important?
Clinical trials are essential to the development of new interventions that help people to live longer, with less pain or disability. One of the greatest benefits of participating in clinical trials is that they advance the knowledge of medicine. For individuals, these trials offer access to a particular therapy that is not available outside of the trial. Trials can be for therapies for rare diseases and open up access to the latest, most advanced care possible.
What would you say to others who are considering getting involved in research?
People who get involved in research have different reasons for wanting to do it. I started from a position of having difficult experiences and appreciated being able to do something positive with it. Others have had very good experiences, and see involvement as an opportunity to ‘give something back’.
As a research participant you can leave a research study at any time. If withdrawing from the study, you should let the research team know that you wish to withdraw. You may provide the research team with the reason for leaving the study, but you are not required to provide a reason if you don’t want to.