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Patient story: Research Champion - Anne

Anne - Patient Research Ambassador

I am retired and was a carer for my mum until March 2016 when she died after living with vascular dementia for many years.

As a result of my experiences with her, I became a Dementia Friend and then trained as a DF Champion. I deliver sessions locally, trying to raise awareness and more accurately inform individuals and communities about the disease and how, with more understanding and research we can all help to eliminate the stigma around dementia thus making discussions and decisions less traumatic.

How did you first hear about Patient Research Ambassadors?
I first heard about PRA as a Clinical Research Ambassador Group member in my local Trust. I also heard about the initiative in my role as a Lay member of the Clinical Research Network West Midlands Partnership Board.

What made you decide to become a Patient Research Ambassador?
I believe that there are many PRAs volunteering every day in support of patient and public involvement in research… they just don’t know they are!! I am passionate about research and feel that, as patients and public we are natural partners for professionals committed to research. We have a valid and different perspective and our involvement can only add value to the whole process.

Why do you think NHS research is important?
The NHS would not function without research. It is a core area and responsibility. Through research, professionals shape our futures; they need the funding and recognition to use their skills to find new treatments so that, as a nation, we can benefit from researchers skills and experiences, and lead the world in improving peoples’ lives.

What activities have you been involved with?
I have been lucky enough to be a co-applicant in a live study and have contributed to three other studies over the past four years. Together with the Network’s Patient and Public Involvement & Engagement (PPIE) team, I have helped to deliver training and awareness sessions for research and clinical professionals and lay people, and helped to prepare induction materials for new recruits to the Network Partnership Group.

As a Join Dementia Research (JDR) Champion, I have assisted at events promoting dementia research and am also a participant in a study myself.
 
What would you say to others who are considering getting involved in research?
Come and join us! We need you! Take a look at the Be Part of Research website for information and tell someone that you want to become part of the team!

www.joindementiaresearch.nihr.ac.uk