Why and how to involve patients in scientific congresses: a dedicated White Paper from AIM Group International

A broader view of treatments and therapies; identification of unmet needs; increased media exposure are some of the benefits of involving patients in congresses.

AIM Group International publishes today a new White Paper by Francesca Manzani, head of the Florence Office of AIM Group. The paper provides perspectives on why you should consider the integration of patients in your next congress and how to do it with success.

Patient involvement in clinical care and research has gained momentum in recent years, firstly because the patient community itself is asking for a more active role. But also, because patient participation in health care systems has been proven to improve treatment outcomes.

«Scientific associations are increasingly recognising that patients can contribute to the success of congresses and health care meetings – outlines Francesca Manzani –. But involving patients in scientific congresses is a sensitive matter which must be carefully managed, decision-making needs to involve all stakeholders and ethics and compliance rules need to be scrupulously followed».

At medical events, virtual patients and in some cases real patients have been involved passively to facilitate HCP learning. In recent years, it has been widely accepted that providing patients, and patient associations, with a more “active” role can change mind-sets and open new and enriched learning opportunities.

The White Paper explains that, once a decision has been made to strategically involve patients in the congress, they can be entrusted to play different roles, such as:

• Event co-designers. Patients can contribute to developing the scientific programme.
• An additional point of view. Patients can be engaged as active audience participants or intervene as speakers.
• Logistics counsellors, to take care of the physical and medical needs of patients at the congress venue.

«Various research studies have demonstrated the positive effect of patient involvement which strongly surpasses any risks and associated costs. The win-win collaboration between healthcare professionals and patients at congresses can provide major benefits» adds Manzani. The benefits from patients involvement described in the White Paper includes:

• Patients can contribute their personal experiences, express issues that matter most to them and ask essential questions that lead to engaging conversations.
• By attending congresses, patients can be updated on the most recent research in clinical treatments which have a direct benefit on their health and psychological wellbeing.
• Participating in the congress, helps patients establish better, collaborative relationships with physicians and healthcare professionals (HCPs). All stakeholders involved will be more cohesive, will have mutual trust and this will have long-term benefits.
• Patients and their families are social hubs, simply through word of mouth they contribute to raise awareness of illnesses and very often to catch more attention of the media.
• As social media ambassadors, patients are able to function as influential hubs to disseminate information to a broad community, raising the quality and quantity of discussions on social media.

Finally, Ms. Manzani uses the real life example of  the World Systemic Sclerosis Congress, which AIM Group organised since its first edition in 2010, to demonstrate patients fundamental role in improving the impact of a congress.

«One of the main features of the 3-day congress is that it gathers not only physicians, health care professionals and researchers but also patients affected by this serious disease. The connection between physicians and patients makes the congress really original and particularly rich in building human empathy. The presence of patients over the years has contributed to maintaining a greater attention to their needs and helping make improvements to their daily lives» concludes Manzani.

The full white paper can be downloaded from the AIM Group website.