In recent years, patient involvement in scientific congresses has gained substantial momentum. This can take multiple different forms: patients can take on roles as event co-designers, speakers, active audience participants, co-authors of research posters and abstract review committee members. 1,2,3 Patients can also participate in networking and press conference sessions.1,2,3
Patient involvement in congresses remains relatively rare, with just 25% of congresses in Europe and 20% in North America actively including patients in congress activities.2,3 The gold standard, however, is to involve patients in the planning and delivery of congresses by including them as members of the organising committee; this ensures that events are inclusive and accessible to patients.2,3
Congresses such as those organised by the European Alliance of Associations for Rheumatology (EULAR), the European Society for Medical Oncology (ESMO) and the European Conference on Rare Diseases (ECRD) are leading the way, each involving patients in the organising committees in various capacities. For example, the EULAR Congress committee involves a PARE (People with Arthritis/Rheumatism across Europe) representative to input on decision-making, and has a PARE programme, which highlights research and activities centred on patient perspectives and interests.4
Trishna Bharadia, a patient advocate and patient engagement professional, was involved in co-creating a patient-facing satellite event with Merck KGaA during the annual meeting of the European Committee Treatment and Research in Multiple Sclerosis (ECTRIMS) in 2019. She says, “the fact that the delegates could see that I had been involved in the development of the event and that I was a visible presence at the event itself, really set the tone. It felt like it was an event for them. Thanks to the event’s success, the Merck lead for that project has gone on to design other events in collaboration with patient advocates”.
People affected by a condition, including patients themselves, carers and family members, offer unique insights and lived experiences that greatly enrich the scope of scientific congresses. Involving patients is mutually beneficial: patients can express their views on the issues important to them, and how they prefer medical research to be communicated, while healthcare professionals (HCPs), researchers and the pharmaceutical industry can learn from the patient experience to refine their research priorities and inform clinical trial design.5,6
However, enabling patient participation is not without its challenges. Below, we will explore some of the benefits, challenges and future opportunities for patient engagement at scientific congresses.
Ensuring the patient voice is heard is crucial to ensuring that developments in the pharmaceutical industry and healthcare research are informed by the needs and unique perspectives of those whose lives we are trying to improve.2
By attending these events, patients can connect with leading clinicians and researchers in their disease area, facilitating conversations that may advance patient-centred care.2 Forging strong connections between the patient, HCP and research communities can lead to valuable opportunities for collaboration, e.g. boosting recruitment to clinical trials, co-designing health services, or developing patient-relevant outcome measures.6,7
Inclusive conferences offer attending patients opportunities to learn, and the potential for education can extend beyond the event itself. Patients can bring their learnings back to the patient community, for example through forums and social media channels, using language that is understandable to a diverse patient audience. This ensures that information is accessible for all patients, not exclusively to those who attend the congress themselves, leading to a more informed patient community.8
Below, we outline some of the common challenges faced when involving patients in congresses and explore potential solutions.
If patients are unable to secure financial support, registration fees and associated attendance costs (e.g. travel, accommodation) may hinder patient participation.
Financial Support:
Local regulations can be confusing and complex, which may discourage congresses from involving patients. Restrictions on which areas of a congress patients can attend, for example due to prohibited content, may exacerbate lack of patient integration in the congress and lead patients to feel unwelcome or not fully included. Additional complexities around pharmaceutical-sponsored sessions could further exacerbate this feeling, for example, a patient may not be allowed to freely talk about specific drugs.
Codes of Practice and Regulations:
Patients may struggle to have their voice heard in congresses traditionally designed for HCPs and science professionals, and they may lack the confidence to fully engage in congress activities.
Inclusivity:
Patients may not be aware of the opportunities to engage with the industry through conference attendance and involvement, and there is often a lack of accessible information summarising congress insights.
Enhanced Communication:
In contrast to HCPs, who often have access to study leave, many patients may have to use their annual leave allowance or take unpaid leave to attend events. Additionally, symptoms or disabilities may limit patients’ ability to travel to congresses or fully participate, for example due to the duration of sessions.
Hybrid Models:
Involving patients in congresses offers significant opportunity to elevate the patient voice, and there are a range of effective solutions available to overcome challenges and support meaningful participation. As we look to the future, we hope to see more congresses meaningfully and systematically involving patients in congress design and delivery.
Here at Costello Medical, we are eager to leverage our expertise to enable greater patient involvement at congresses. Our dedicated Patient Engagement team can provide a range of support and guidance on how to involve patients.
References
If you would like any further information on the themes presented above, please get in touch, or visit our Patient Engagement page to learn how our expertise can benefit you. Kate Metcalfe (Analyst) and Trishna Bharadia (Patient Advocate) created this article on behalf of Costello Medical. The views/opinions expressed are their own and do not necessarily reflect those of Costello Medical’s clients or affiliated partners.
