What have patients and carers told us will make the 2018 Cochrane Colloquium, Cochrane For All, accessible, inclusive and interesting? As we work to make this conference a Patients Included event, here are some of their ideas.
Sitting with friends in the last hours of 2017, our conversation turned, inevitably, to reflecting on the old year and our hopes for the new one. We talked about what we intended to do, but also what we hoped to stop doing, or to do differently. It was sometimes easier to see where change was needed than to work out how to do it; we were lacking ideas to start us off and, without these, no changes will be made!
Thankfully, we have plenty of ideas to help us with a really exciting change that we’re working towards in 2018, which is making this year’s Cochrane Colloquium, our annual global conference, a Patients Included event. To achieve Patients Included status, the involvement of patients and carers in the design, planning and delivery of the Colloquium, and facilitating their participation in person and virtually, are basic requirements, and this is a really helpful starting point. But what do we actually need to DO to make it happen? What will make the Colloquium inclusive and accessible? What do we need to do in order to increase participation by healthcare consumers? What will make it interesting, and how will everyone benefit from their involvement? Well, we only had to ask…!
The announcement of our plans, back in the autumn, was followed by a period of consultation through two tweetchats, a webinar and an online survey, to reach international consumers, and face to face meetings in Edinburgh and Oxford. These consultations have drawn on a wealth of expertise from people who are patients, carers and patient advocates, with some also having experience as researchers or research participants. The broad range of suggestions for all aspects of the Colloquium that were put forward will be of enormous help in the planning of this event. The 20 participants of the face-to-face meetings have become our Patients Included Advisory Group, and are proving invaluable for advice on many aspects of the planning; just one of the ways in which we are involving consumers in preparing and planning the Colloquium.
We don’t know yet what the event is going to look like, nor which of the suggestions gathered will come to fruition. Here is a flavour of them through some of the key themes and ideas that have emerged from our consultations.
A popular idea was that people should ‘leave their titles at the door’, as a way of avoiding pre-judging people’s expertise. There was much enthusiasm for enabling people with shared areas of interest to find each other, to enable conversation and potential collaboration. Suggestions to promote this include having information about participants’ areas of interest next to their names in a delegate list, colour coding on badges, and having space and time for The observation over a period of time of people taking part in a study to measure outcomes under investigation (for example, their symptoms). conversations after talks. The global nature of the event, and the opportunities to gain broad perspectives from different settings, is generating much enthusiasm and ideas for getting people together, through pairing people who share their first language in presentations and workshops and having an international networking session for patients from around the world.
In it together
We know that first impressions count, and what happens on arrival anywhere is important, isn’t it? Suggestions to assist people from the off and enable them to get stuck in include having lots of people on the ground to help others navigate the venue; perhaps a buddy system, and a welcome session for those new to Cochrane (a feature of previous Colloquia). Someone to take the role of go-to person for all patients/carers attending, who can help keep things running smoothly and to whom they can go for help with anything, is another great idea.
Making everyone feel welcome at an event has lots of components to it, of course, and it isn’t just about what happens when you walk through the door. We intend to have patients and consumers in mind in all aspects of the event, and those involved in the planning and execution of it will be ensuring that happens! We want the event to have a culture of inclusivity and respect, to live up to its #CochraneForAll tag.
This is basic, but worth reiterating, that we hope and expect to see healthcare consumers sharing the platform with clinicians and researchers (and quite possibly people who wear all three of those ‘hats’) as presenters, workshop leaders and panel members.
Stand up, sit down, keep moving!
It will be so refreshing, in more than one sense of the word, for everyone at the conference if we can follow many of the suggestions for making the physical space, and ways of working, inclusive and flexible!
Ideas include a chill out area for people to rest, comfy seats, plenty of chairs in communal areas, opportunities to walk, stand or recline in sessions and a separate room from which talks can be viewed. Technological solutions and thoughtful seating to help those with visual or hearing impairments. Lots of loos and places where you can change clothes. Places to sit whilst eating and plates big enough to easily take the food, with dietary requirements catered for, of course. Plenty of drinks available throughout the day – who doesn’t appreciate that?! Maybe we should dub this #everydaythoughtfulness.
Moving beyond ‘chalk and talk’
I have to confess to being particularly excited about the possibilities for adopting new ways of working together than we have been used to in previous conferences. Can we bring in ideas from the arts to work creatively together? In addition to workshops, talks, panels and posters, there were suggestions that we could use things like graffiti walls, poetry, drawing, Lego, stories, ‘speed dating’-style events, and the intriguingly named ‘Failure Wake’! Online participation will be hugely enhanced by Beyond The Room, a new and exciting digital conference service.
The heart of the matter
There have been many suggestions for themes and topics that people would like to see in the programme and we’ve also gathered suggestions for speakers. The call for abstract and workshop submissions is now open; we are asking that every submission explains its relevance to, or production with, patients or carers, and every submission will be reviewed by a patient or carer. The programme will be published on the Colloquium website.
It can be really intimidating to ask a question in a conference session, and there were lots of comments about ways this could be made easier, as well as enabling those participating virtually to ask their questions, and allowing other forms of interaction such as voting. Suggested ways to do this ranged from paper-based (such as post-it walls and suggestion boxes) to digital methods via apps, social media or platforms such as https://www.sli.do.
When the going gets tough…
Let’s face it, conferences can be really exhausting even for the youngest and fittest, so it was useful to have some comments about what could help. Along with the kind of physical comforts and opportunities for rest that I’ve already mentioned, ‘sensible’ start and finish times were proposed, and careful scheduling of key sessions not too early or late in the day. Comments about ensuring people know they are not obliged to attend every session were particularly helpful, as we might have assumed that people would feel free to drop in and out as they wished. There was also a plea for attendance for a single day of the three day conference to be made possible. Which brings us to…
Money, money, money…
I think we’re all very conscious that our intentions could all come to nothing if we can’t secure more funding than usual to enable consumers to attend, the costs of conference attendance often being prohibitive for many people. A lot of energy is being directed into finding ways to do this. We hope that more healthcare consumers will be sponsored to attend than ever before. Are you interested in being a sponsor, or perhaps work with a charity or other organization that might be willing to fund a patient or carer to attend? You can read here about the sponsorship and stipend opportunities available, or find out more by emailing firstname.lastname@example.org.
What does success look like?
It was agreed that this goes beyond getting more ‘Consumer’ is Cochrane’s preferred term for patients (or someone with personal experience of a health condition), care-givers or family members of someone with a health condition. (https://consumers.cochrane.org) participants, though that is something we will work hard to achieve. There was a strong feeling that it is really important that everyone at the conference has a positive experience, values the mixture of expertise there and sees tangible Outcomes are measures of health (for example quality of life, pain, blood sugar levels) that can be used to assess the effectiveness and safety of a treatment or other intervention (for example a drug, surgery, or exercise). In research, the outcomes considered most important are ‘primary outcomes’ and those considered less important are ‘secondary outcomes’..
Keeping it real
Several people stressed the importance of enabling everyone to reflect (at the start and throughout) on what we are trying to achieve together; of managing expectations and of ensuring involvement is purposeful. We are keen that work done together here, knowledge shared, and partnerships formed, should have a life beyond the event, feeding into new work with Cochrane. Let’s see what we can do together!