Date: 06 February 2019
“Don’t let the gobbledegook and jargon put you off!” - Patient Research Ambassador Mandy Rudczenko explains how she got involved in research and the key lesson that newcomers to the world of research need to know.
Please tell us a little bit about yourself
My first career was as a mental health nurse. As part of that role I used to design and facilitate workshops for people with mental health difficulties. These workshops covered topics such as: assertiveness training, stress management and confidence building.
I became aware of the need to offer this kind of support in the community, and so I trained as an adult education tutor and facilitated workshops in community colleges.Having always had a strong passion for drama and writing, I also took time out of my career to study for a degree in Drama, and an MA in Women’s Studies.
How did you first hear about Patient Research Ambassadors?
I am now a public reviewer with the NIHR, as well as being involved in the local Research Design Service (RDS). I heard about ‘Patient Research Ambassadors through these networks and felt that my passion for the coproduction of research would fit well with this role.
What made you decide to become a Patient Research Ambassador?
When my second child was diagnosed with Cystic Fibrosis, I gave up my career to become a full time carer. I have helped my son to manage the heavy treatment burden which keeps him alive, and this role led me into the world of patient and public voice work. I have championed the patient, carer and public voice in various roles, including on NHSE boards and committees.
I then heard about opportunities with NIHR, and as a co-convenor of the Coproduction Special Interest Group with the Q community I co-facilitated a webinar about INVOLVE’s Guidelines on Coproducing Research. This was a light bulb moment for me! I became aware of the potential for coproduction of the actual research process, and the importance of making research more relevant to people’s lives.
Why do you think NHS research is important?
Having helped my son to manage a serious, life-threatening condition for 18 years, I am strongly aware of the impact that long term conditions can have on people’s lives. NHS research is vital in improving people’s lives but needs to be relevant to them. Research needs to be focused on improving the things that matter to patients and the public.
I heard a story that sums up the importance of patient involvement in research: a doctor with many years experience of researching arthritis was himself diagnosed with the condition. His experience of the condition led him to revise his research based on his new understanding of living with arthritis.
What activities have you been involved with?
Activities that I have been involved in include:
What would you say to others who are considering getting involved in research?
For people considering getting involved in research I would say don’t be put off by the gobbledegook and jargon! You would be surprised how many clinicians don’t understand all of it either. Value your contribution; without your perspective, time and money might be wasted on the ‘wrong’ research. Support each other by networking with other lay members and together we can make a difference.
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