The next step in patient involvement in diabetes conferences
Diabetes conferences and events have long been an opportunity for health professionals and/or researchers to get together. Share ideas. Create connections and to learn from one another.
Yet it is only recently that people living with diabetes have started to be included as a specific group. It is increasingly being recognised that people living with diabetes (either as patients themselves or as family/friends) bring their own unique, and important, skills, knowledge and capabilities.
Diabetes advocate voice Emma Doble attended ATTD 2024 as a #dedoc° voice, ensuring the voice of people living with diabetes was present. Source: Emma Doble
#dedoc° has been a huge part of ensuring that many of the major diabetes conferences have people living with diabetes in attendance, both in person and online. The impact of this can be seen in the online presence that the #dedoc° voices create during and after the conference, sharing their learnings from these events back to their own communities following the #PayItForward ask.
Although having people living with diabetes in attendance at these conferences is huge progress, I believe there is a bigger step to be made.
The Patients Included charter
In 2010, Lucien Engelen (an avid patient advocate) expressed his aspirations for healthcare conferences to be ‘patients included’. This followed his frustration of patients often being invited to healthcare events to tell their story but not being included in the conversation about what is best for them.
By 2015, the first Patients Included charter for conferences was published, written by a group of patient advocates and members of the public.
The Patients Included charter logo: this shows that people with lived experience are involved in an event about them. Source: PatientsIncluded.org
So what is meant by ‘patients included’?
By the charter, it means that people with lived experience should be involved in the planning and delivery of a conference or event, as well as being invited to attend (with the relevant bursaries in place).
What this means for each conference may be different but some key and common ways of doing this include: having someone with lived experience on the organising committee of a conference, having people with lived experience involved in the program (as speakers or moderators), and/or providing ways for people with lived experience to attend conferences in person/online to engage with and learn from the content presented.
Differing perspectives on healthcare delivery from HCPs and people living with diabetes show why having patients included at conferences is so essential. Source: Emma Doble
This would then allow a conference or event to meet the ‘Patients Included’ criteria and to use the Patients Included logo throughout the event. It gives conference organisers a way to share their commitment to the inclusion of people with lived experience in the true method of partnership and really demonstrating #NothingAboutUsWIthoutUs within their event.
Where do we go from here?
For many of the big diabetes conferences, the involvement of #dedoc°* means that there is already an engaged and proactive group of people with lived experience involved and in attendance.
So how do we, as the diabetes community, take the next step? My suggestions would be to take on these 3 key steps:
Invite someone with lived experience onto the organising committee to participate in the design and planning including selection of topics, presenters and themes.
Have someone with lived experience present (either speaking or co-chairing/moderating) at every key session within the conference or event.
Start the conference (the opening keynote) with the voice(s) of those with lived experience on what matters to them. This might be through a presentation or a video from someone with lived experience, for example.
Finally, if there are any conferences or events that are meeting all of these Patients Included criteria, please shout about it. Use the Patients Included logo. Tell people about it. Share your experience (either as a organiser, attendee or person with lived experience).
This will only help others see that including people with lived experience in diabetes conferences is no longer just a ‘nice to have’. It is important and necessary to demonstrate and share the real impact of getting the diabetes community together.
*For any conferences or events not working with #dedoc°, step one in becoming Patient Included is to identify a person or group of people with lived experience who are willing to get involved in your event.
What are your top tips for organisations wanting to become Patient Included? Let us know in the comments — we'd love to hear from you!
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