In 2020, and again in 2021, we invited applications from people who would like to be ‘Cochrane UK Consumer Champions’*. The Consumer Champions role involves advocating for evidence-based health care and Cochrane amongst organisations and patient groups in the UK.
On this page, you can find an interim evaluation report about the project. You can also learn about some of our current Consumer Champions: Brian Devlin, Genna White, Olivia Fulton, Heather Still and Holly Loughton.
Page last updated: 14 February 2022.
Read the interim evaluation report (July 2021), to find out how the project is going, what impact it is having, and how the project might be improved.
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 2019 I presented an original research proposal poster exploring the functional impact of DLD on family life at the Child Language Symposium.
In 2021 I qualified as a speech and language therapist. I work in clinical practice with children and young people with communication difficulties.
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 ongoing 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".
"I feel like an autobiography of illness experience can be as long and as complex as my medical history, to condense it into a couple of paragraphs is a challenge!
I stumbled into patient experience work when I started studying the psychological impact of having congenital illness. I was born with congenital heart disease, I am currently on my fourth pacemaker and have a limited life expectancy. I noticed a lot of the literature copied the psychological impact of chronic illness, but being diagnosed later on in life is a different experience to being born with illness as you do not have that period of health. This was a lightbulb moment for me and I began seeing everything in a more critical light, realising the importance of having lived experience in research and health care.
I have worked for charities and the NHS for the last seven years, in frontline social work or researching. Collecting data is a pet project of mine. Aged 15 I used to watch the adverts on TV and tally the gender of the voiceovers and compare it to what product they were selling to evidence sexism. I lived in a village and there wasn’t much to do I guess.
This was not the only reason why I applied to work for Cochrane. I was a carer for a family member living with addiction. A review from Cochrane on AA [Alcoholics Anonymous] allowed me to have meaningful conversations with health and social care staff, and passing this research onto other family members allowed them to start a dialogue with their loved ones. Family members are often so crucial in caring for those with illness and we can be great advocates for our loved ones. Given the opportunity, we would also be fantastic promoters of evidence-based practice.
This is why I wanted to work with Cochrane, because producing high-quality evidence can make a huge impact on the care of ourselves and our families. If we as patients and family members had these resources, we can advocate for better care collectively."
Holly Loughton (Twitter: @HollyMLoughton)
"Shortly after being diagnosed with chronic kidney disease in my mid-20s, I started a blog, Secondhand Life (https://www.secondhand-life.com/), as a way of coming to terms with what was happening to me. I soon discovered that the experiences I shared were useful and interesting to many others in similar situations to myself, and I quickly developed an interest in patient involvement and advocacy.
I become involved in several different projects, and drew on my background in education and public speaking to encourage other patients to share their stories and perspectives and come together to help one another.
In 2016, I co-founded Young Adult Kidney Group, a patient-led peer support group for young people living with kidney disease who are between 18-30 years old. What started as a small group of friends has since grown into an amazing network of over 700 patients, and now fills a vital role in providing support to young people with kidney disease.
After completing NHS England’s Peer Leadership Academy in 2018, I joined the Personalised Care Strategic Coproduction Group (SCG). Being part of the SCG has allowed me to be involved in a huge range of projects on a national level, and to gain a sound understanding of the importance of coproduction.
Since 2020 I have been the Patient Involvement Facilitator for the Kidney Patient Involvement Network, which has allowed me to build strong links between patients, carers and clinicians and contribute to improving the standard of renal patient and public involvement in the UK.
I’m really pleased to be joining the Cochrane UK Consumer Champion programme, and look forward to working with my colleagues to share information about Cochrane with all members of the renal community."
- Find out more about the Cochrane UK Consumer Champions role
- Cochrane UK Consumer Champions: another step towards better patient and public involvement
- Watch a recording of a presentation 'Better health decisions. Using Cochrane evidence in shared decision-making' featuring Brian
Read blogs written by the Consumer Champions
- Living with a long-term condition: five perspectives - part 1; and part 2 (by Brian, Ceri, Genna, Olivia and Emma, June 2021)
- Developmental Language Disorder: reflections as a mum and speech and language therapist (by Genna White, October 2021)
Get in touch
Marta Santos (Programme Support and Project Manager) and Emma Doble (Patient and Consumer Coordinator) work closely with the champions. Please get in touch with any questions via firstname.lastname@example.org