Cochrane's flagship event, the Cochrane Colloquium, brings together individuals with an interest in the use of evidence in healthcare decision-making to learn, collaborate, and network. This includes patients, caregivers, and advocates, whom Cochrane refers to as consumers. Cochrane has a long history of involving consumers in our work, including in our colloquia. We are thrilled that the Cochrane London Colloquium happening in September 2023 will be a Patients Included event.
We spoke with Sarah Chapman and Richard Morley, Co-chairs of the Patients Included Advisory Board, to learn more about the Colloquium's certification as a Patients Included event.
Can you tell us a bit about yourselves?
Sarah: “I work at Cochrane UK, sharing Cochrane evidence through our blog Evidently Cochrane and on social media in ways that make it easy for people to understand and use it. I also have a personal blog, From Ear To Eternity, where I write about my cochlear implant journey, and about life with hearing loss.”
Richard: “Hello. I’m Cochrane’s Consumer Engagement Officer. I work for Cochrane’s Central Executive Team. I’m based in York, UK but work globally. I work to engage and involve consumers as users of our evidence and in the work of Cochrane. That includes our growing international community of consumers and I’d like to invite anyone who is interested in health evidence to join our Cochrane Consumer Network and learn more about our work.”
Richard, Can you start by telling us a bit about patients, caregivers and public involvement at Cochrane?
“Cochrane uses the term "consumers" to refer to individuals with personal experience of a healthcare condition, including patients, caregivers, and family members. They are users of our health evidence. Throughout our history, Cochrane has actively involved consumers to participate in our governance, author and peer reviewer teams, as well as numerous advisory groups. At Cochrane, we recognize that consumer involvement enriches our work and we remain committed to including them and enhancing their understanding of evidence-based healthcare.”
Sarah, What does a ‘Patient Included’ event mean?
“Put simply, it means that patients are at the heart of the event; they are involved in planning and delivering it. The Patients Included Conference Charter gives a framework for how to do this. The five points of the Charter relate to the active participation of consumers in the design, planning and delivery of the event; funding and expenses; accommodating disability requirements; and facilitating virtual access where possible. In 2018, our Colloquium adopted the Patients Included Charter for the first time and we felt it made for a great experience for everyone. We are using what we learned from that event, as well as bringing in fresh expertise through our Patients Included Advisory Board as we prepare for Cochrane London 2023.”
Richard, how have you worked with the local hosts to ensure that the conference is accessible to consumers from diverse backgrounds?
“Sarah and I co-chair the Patients Included Advisory Board. The members advise on aspects of the inclusion of consumers in the planning and delivery of the Colloquium, in accordance with the Patients Included Conference Charter. The Consumer Network Executive has also fed into the preparations.
Cochrane has also set aside £25,000 to provide stipends for consumers, and reduced rates, to support consumers from diverse backgrounds to attend the conference. Applications have closed now and we’ll be getting in touch with people towards the end of May with the results. Cochrane UK will fund two consumers living in the UK to attend Cochrane London, and applications are open until 12th June."
Sarah, what kind of things are being planned to help with accessibility and the consumer experience?
“Many things that consumers have raised as being important are being taken into consideration, from physical aspects of the venue to the presentation of scientific content. For example, we will have a ‘Take a break’ area that is away from the main hustle of the event that will be a space to recharge. We are working with a research team to implement the latest evidence on accessibility to the conference, from increasing the number of seating options to proving accessible poster templates. We will also have live transcription for the plenary sessions, which is a great help not just to people with hearing loss but also to those for whom English is not their first language.”
Richard, can you tell us about specific sessions or activities geared towards consumers?
“We’re planning lots of ways to support consumers at the Colloquium, as Sarah says. There will be a buddying system for consumers attending, a WhatsApp group, two meeting especially for consumers: one to prepare them for the conference, and a second to discuss issues of interest to volunteering in Cochrane.
There will also be much in the formal content of the Colloquium for consumers. The conference theme is ‘Forward together for trusted evidence’ with content covering producing trusted evidence, advocating for trusted evidence, informing health and care decisions and co-production and working together. These are all really important for topics for users and co-producers of evidence.
The full programme sessions will soon be announced. I know there will be a plenary devoted entirely to engagement and involvement, a Special Session about improving the evidence for, and practice co-production, and a “Consumers 101” workshop for those researchers and patients who want to be involved in producing evidence.”
Sarah, what are some of the benefits of involving consumers in conferences like the Cochrane Colloquium?“Having consumers involved promotes transparency, accountability, and trust in the way that research is produced. It also makes for a much richer conference experience for everyone, as we discovered at our first Patients Included event; more enjoyable, more inspiring and more relevant! “
Finally, what are you most excited about for this year's Cochrane Colloquium?
Sarah: “I can’t wait to welcome everyone to London – both familiar and new faces. It’s been five years since our last conference and we will be coming together in a changed world and challenging times, when producing trustworthy, relevant evidence seems more important than ever. While remote working is rightly here to stay, an in-person event provides a great opportunity to work creatively together, to be inspired and to gain some fresh perspectives. Bring it on!”
Richard: “I’m really excited to be meeting in person. This hasn’t happened properly since the Edinburgh conference. It will be so lovely to gather together with at least some of our community of volunteers, face to face at last. The Patients Included element ensures that we can have many meaningful discussions about evidence, and working together, and make plans for the future. Roll on September!”