In 2020, we invited applications from people who would like to be ‘Cochrane UK Consumer Champions’*. The Consumer Champions role will involve advocating for evidence-based health care and Cochrane amongst organisations and patient groups in the UK. Here you can find out more about Brian Devlin, Genna White and Olivia Fulton, our Consumer Champions:
Brian Devlin (Twitter: @BDevlin1)
"I started as a patient advocate in the mid 1980s when I worked for an organisation in Edinburgh that supported injecting drug (mostly heroin) users. These marginalised and misunderstood people struggled, often with a range of social and care issues, to find balance and direction in their lives.
This was a time when the HIV problem became recognised in Edinburgh as different to other parts of the world due to the sharing of injecting paraphernalia. My interest in supporting people with HIV and AIDS grew out of that feverish time. I became an activist and a campaigner from that point on.
I'm profoundly deaf and use my social media presence to raise awareness of issues in this area. I’m also an ambassador for products and services which aim to make life easier for people with very personal and private medical conditions, including stoma care, and campaign to stop the stigma that people with stomas experience. (Twitter @BDevlin1)
It seems a natural progression, as well as a great honour, for me to become a Consumer Champion for Cochrane UK. I was Director of PR in my NHS board until illness forced my retirement. So that I hope that I can use whatever communication skills I have picked up over the years to be a bridge between Cochrane and the wider community".
Genna White (Twitter: @whitegenna)
"In 2012 my eldest son was diagnosed with Specific Language Impairment (SLI), now known as Developmental Language Disorder (DLD). At the time there was very little awareness about this condition and very little information available. I began researching and building a support network of peers and professionals for my son and me.
In 2013 I set up a support group for parents and carers of pre school children with speech, language and communication needs (SLCN) that was shortlisted for a Shine A Light award from The Communication Trust in 2013/14.
In the same year I also set up a DLD Facebook group for people affected by or interested in a DLD diagnosis. The group now has over 2400 members from all over the world and has become a place for parents and carers to share support and a forum for students and professionals to share research, consensus, articles, reviews, and events.
In 2018 I began training to become a Speech and Language Therapist.
In 2019 I presented an original research proposal poster exploring the functional impact of DLD on family life at the Child Language Symposium.
Following qualification I plan to work in both clinical practice and research, with a particular focus on DLD.
My personal experience and clinical knowledge provide me with a unique perspective that I use to help families like my own. I am passionate about supporting individuals to access help and information, while ensuring that their lived experience is recognised and informs our on going understanding. I hope to facilitate a reciprocal knowledge exchange between Cochrane UK and its consumers that enables the dissemination of Cochrane’s work to individuals who will benefit from it directly, and supports their meaningful contribution to Cochrane’s work".
Olivia Fulton (Twitter: @just_TUX)
"I fell into patient and public involvement (PPI) in research after focusing my time on raising awareness of severe asthma. I was no longer eligible to take part in clinical trials but wanted to do something to help people with debilitating severe asthma. I never knew there was an option where I could help shape and influence research.
Asthma is such a common disease but a very misunderstood disease. I have a rare form of severe asthma that means my day to day life is affected by it. I recently had to give up a main passion of mine which was nursing. I was a renal nurse specialising in home dialysis, through this work and my own experience as a patient I was able to really understand what patient centred care is but found that for patients to understand their condition and care they needed information in accessible language.
As I had to reduce my work life I was able to dedicate more and more time to patient and public involvement in research as I have seen the value of the patient voice in research. I now volunteer with a number of different organisations as a member and lead of PPI groups. I am excited to be a Cochrane UK Consumer Champion to ensure the patient voice is heard across all research but also that research that is disseminated is done so in a manner that everyone can understand and not just those with academic backgrounds".
- Find out more about the Cochrane UK Consumer Champions role
- Cochrane UK Consumer Champions: another step towards better patient and public involvement
*Cochrane uses the term ‘consumer’ to represent patients, carers and family members with experience of a healthcare condition.