Meaningful patient participation in online events: #InvolvingPatientsOnline

In the nine years since it was first formulated, the Patients Included charter has become an important indicator of quality and inclusiveness for organisers of healthcare conferences looking to ensure that patients are active participants—not subjects of discussion notable for their absence. Conferences supported by BMJ are expected to meet its requirements around co-design, active participation, and accessibility, and major international meetings such as the Cochrane Colloquium have signed up to the charter.

The shift to online gatherings in the wake of the covid-19 crisis gives conference organisers new opportunities to maximise the inclusion of patients. But as anyone who has participated in one will know, online meetings bring their own challenges in terms of access, communication, and social dynamics. How best then to make the most of online conferences to ensure that patients are not just passive observers, while avoiding pitfalls around who is included and how?

This was the focus of discussion among patients, carers, healthcare professionals and researchers in a Tweetchat co-hosted by The BMJ and The Healthcare Improvement Studies Institute (THIS Institute) at the University of Cambridge. THIS Institute is supported by the Health Foundation, an independent charity committed to bringing about better health and healthcare for people in the UK.

The Tweetchat followed THIS Space 2020, an annual conference organised by THIS Institute focusing on research and evidence around improving quality in healthcare, which took place online for the first time. Attracting over 700 registrations, with around 10% identifying as patients or carers, THIS Space 2020 included sessions on inclusive improvement research, doing research online, and remote care. In the Tweetchat, we brought in the question of online events themselves, and how to make them more inclusive.

The Tweetchat produced plenty of thought-provoking exchange, but three areas of discussion stand out. First, there was the question of how to make online meetings accessible for all concerned. In part this is to do with publicising – if “real-world” events are hard to find, online ones can be even harder—and there is a risk of reinforcing the “digital divide”, even if there are some ways of mitigating this. It also relates to key questions about format and structure. Regular breaks and chances to stretch legs are good for everyone, and a shift to online events probably means a radical rethink about how long is long enough. As a few people commented, there is something about concentrating on a screen that is particularly challenging and tiring, and there were some useful tips on how participants can get the most out of online meetings. Some platforms offer instant (though imperfect) subtitles as people speak, and other providers can add captions to video-conferencing services, which can help to overcome some barriers to participation. 

Second, there was lively discussion of what makes for a meaningful online conference for all delegates, including patients. Including all relevant groups from the start in the design and planning of events is just as important as with in-person conferences. Some conferencing platforms include advanced functions like polling, chat and break-out rooms, but making best use of these features means being mindful and judicious. Perhaps even more than their real-life equivalent, virtual break-out rooms need structure, clarity of purpose, and time for forming, norming and other social etiquette—all the more so when groups are mixed and power relationships can readily reproduce themselves. Effective online facilitation is a vital skill. And of course, with virtual events, meaningful participation can continue after the meeting has formally ended—perhaps aided by summaries and probes to keep the contributions coming in.

Finally, how best to ensure that all those involved feel able to take part equally? Some contributors were optimistic that the online space itself helped to neutralise hierarchical relationships, with markers of professional prestige less visible and everyone in the same-sized box. Others, though, were clear that offline power structures could easily be reproduced online. Again, good facilitation, and a balance of “lived” and “learned” experience, were seen as crucial, along with active efforts on the part of organisers to put patients themselves in positions of prominence, such as plenary panels. 

The shift towards online events is unlikely to reverse in a post-covid world. Concerns about the contribution of travel to climate change, as well as positive experiences about what can be done in an online environment, are likely to continue to move towards fewer and better in-person conferences, supplemented by interesting and engaging virtual meetings. While in-person meetings still have their place as a basis for lasting, trusting interpersonal relationships, a blended approach to research conferences has the potential to be more inclusive and more useful for everyone involved.

Graham Martin is Director of Research at The Healthcare Improvement Studies Institute (THIS Institute), University of Cambridge. THIS Institute is supported by the Health Foundation, an independent charity committed to bringing about better health and healthcare for people in the UK. Twitter: @graham_p_martin

Competing interests: trustee of the Foundation for the Sociology of Health and Illness (to September 2020); employment supported by the Health Foundation’s grant to the University of Cambridge for The Healthcare Improvement Studies Institute (THIS Institute).

Thank you to Emma Doble, Patient Editor at The BMJ and Hannah Flack, Communications Administrator at The Healthcare Improvement Studies Institute (THIS Institute), who coordinated the twitter chat.