Background: full involvement of healthcare consumers in conferences is not yet the norm but is increasingly recognised as desirable. Bringing in consumers’ diverse experiences and skills has many benefits both at the event and beyond it.
Objectives: Cochrane UK decided to organize the Cochrane Colloquium 2018 as a 'Patients Included' event, co-designed, co-produced and co-presented with consumers. We offer some reflections here as a consumer and a member of Cochrane UK who were both involved.
Methods: we used the Patients Included Conference Charter to provide a framework for planning and a measure of success. We involved consumers from the beginning in planning and delivering a scientific programme with an increased consumer focus and attending to other aspects of the event that were important to them in enabling their full participation. From early face-to-face and online consultations, we convened a Patients Included Advisory Group and other consumers took on roles in planning and presenting. Financial support for consumers attending meetings included travel expenses and payment for time and more consumers than ever were funded to attend the Colloquium. Virtual participation was increased through the use of a ‘Beyond The Room’ service, run by a diverse team of eight, which included a student, a doctor and two consumers. This involved enhanced use of social media, podcasts recorded at the event and submission of questions to keynote speakers via menti.com and Twitter.
Results: the Patients Included focus influenced all aspects of the Colloquium and enriched it. We enjoyed wider and more democratic conversations. Over 2500 people in 84 countries joined in via Twitter, with around 80% coming from people not physically present at the event. We made and shared 18 podcasts, including with keynote speakers. A culture shift away from the ‘research bubble’ was noted and clearer communication encouraged. The opportunity to ask questions electronically meant more and different people’s voices were heard. Working directly with consumers at the event and hearing about joint work from their different perspectives challenged our thinking and kept consumer interests at the centre. We learned a great deal about the rewards and challenges of making a conference such as this a Patients Included event.
Conclusions: consumers bring health experience that is critical to conversations about health research and also professional skills beyond their 'just a patient' status in the minds of (still) too many in research, policy and healthcare environments. The changes driven by consumers benefited everyone and made our Colloquium a much richer event. It was a step towards genuine and positive change, which should benefit Cochrane’s work and so help us in our contribution to improving health.
Patient or healthcare consumer involvement: making the Cochrane Colloquium a Patients Included event had consumers at the centre and fully involved in all aspects.