What we had planned

In November, the International Forum for Quality and Safety in Healthcare hosted its first fully virtual conference. Over the last few years there has been an increasing momentum to involve and partner with patients at this event. This has included having patients reviewing submitted abstracts and serving on the organising committees. The International Forum has offered patients, and family members, scholarships to attend the forum covering registration and travel costs. There has also been a push to encourage all presenters to co-present with a patient or family member.

This year the European International Forum was due to take place in April in Copenhagen and would have welcomed over 3500 delegates. A small working group had spent the previous year planning how we could use the event to drive forward patient and public involvement in quality improvement and to also connect a community of patients and family members. There were plans for patient led workshops, a dedicated space in the exhibition, regular meetups and an overall aim to create a “patient manifesto” that would be presented from the main stage in the closing keynote.  

What we did

As with so many events in 2020, in March the decision was taken to postpone the International Forum, and it was held a fully virtual conference in November. It became very clear that our original plans would need to be adapted considerably to fit this new format, and to recognise that the pandemic had not only precipitated massive change in how services were organised and delivered but resulted in considerable challenges to the principle and practice of patient involvement in healthcare.

Rather than trying to simply move our original plans online we decided to rethink our strategy. It felt important to use some sessions to acknowledge and reflect on the impact of massive service configuration, and the marginalisation of patient and public involvement. We therefore invited delegates to share and reflect on what happened to PPI during the pandemic. Observations from a survey of around 250 delegates in one session confirmed that co-production had become more difficult for most since the start of the pandemic and it was not clear how best to redress this given the speed at which healthcare needed to adapt and change. 

What worked well

One element that we agreed we should retain from our original plans was  a shared space for patients and family members to connect during the event. We held a virtual “patient meet up” one evening, where anyone interested in issues relating to PPI was invited to attend an open discussion. Around 30 people joined, including patients, carers, service users as well as clinicians, researchers and people working in policy. During this session we shared not only some of the challenges we had experienced in PPI but also some silver linings and examples of where things had changed for the better, including the move to remote consultations and being able to attend more events like the quality forum without having to travel or take time out of work. 

Further to this, another key benefit to the virtual event was that we were able to make recordings of all of the conference content available for delegates to view for six months after the event. This allowed people to engage in the sessions that interested them around their other commitments and opened up access to those who would not have been able to take full days out of their schedule to attend. 

What could be improved

One powerful tool virtual events can offer is the ability to use data analysis to connect relevant people together. At a busy face to face event. it’s often difficult for patient participants to find each other, and we had hoped the use of digital features such as a matchmaking tool that would recommend contacts based on shared interests would make it easier to know who to reach out to. However, we found that in practice more valuable connections and conversations came out of our group based activities and interactive sessions, where interaction felt more natural and less forced. In the future we will focus more on hosting discussion groups and topic forums rather than relying on just data driven solutions.

We also found that while on-demand content was a fantastic resource to catch up on sessions you had missed, there needed to be some form of chat box or ongoing conversation function added so those attending later could still play a part in the discussions. This would also allow the topics to continually grow and evolve even after the conference is over.

Where do we go from here?

As many events planned for 2021 are starting to consider whether they will meet in person or virtually, we want to ensure that patients are not forgotten. One of the benefits of online events is the broader accessibility to attend, especially for patients who may not have the resources to attend events in person. We were able to offer complimentary access to over 30 patient representatives for the virtual event and hope to extend this even further in future. 

However, there also needs to be some thought on how to ensure online events are relevant and meaningful to patients. Particularly in how to help patients feel included and connected to others. From our recent experience we suggest that involving patients in the design from the outset, allowing flexible access, and providing plenty of opportunities for discussion and debate are key. Using the conference platforms technologies to provide spaces for patients to “meet” one another is also important. This can include using matching making functions, breakout rooms or creating patient meet up sessions within the program to ensure the sense of togetherness and support despite not being able to meet face to face. 

Kyle Rolph, Senior Conference Producer, BMJ Events.

Emma Doble, patient editor, The BMJ.

Competing interests: none declared.