(From left to right: Suzie-Ann Bakker and Dimitrios Athanasiou, World Duchenne Organization)  

The role of patient organizations in international research projects is as unique as it is important. Patient organizations serve as the collective voice of people living with this specific condition. In research projects, they ensure that outputs are designed to address the needs, concerns, and priorities of patients and their caregivers.  

BEAMER recognizes the importance of including the patient’s perspective. For this reason, the World Duchenne Organization (WDO) is a partner of the BEAMER project, an EU-funded initiative that aims to shed light on factors influencing patient adherence across various disease areas. The aim of this project is to identify patient needs to provide valuable guidance to improve adherence to treatment.  

That’s why WDO is collaborating with PredictBy, another partner in the BEAMER consortium, to develop and administer a questionnaire tailored to people living with Duchenne and their caregivers. This questionnaire, available in both English and Spanish, aims to collect the experiences and perceptions of the Duchenne community regarding their condition. 

 About the questionnaire 

The BEAMER questionnaire is an important tool to identify patients’ needs, which will allow the project to develop effective and patient-specific support to improve adherence. This refers to whether people follow prescribed recommendations from a healthcare provider. For this reason, co-creation with the patient organization is crucial. The questionnaire is available in English and Spanish. The data collected is used to validate the questionnaire, aiming to effectively collect the experiences and perceptions of the Duchenne community regarding their condition. 

Dimitrios Athanasiou, WDO Board Member: “Throughout the project, we aim to gather feedback through questionnaires, interviews, and discussions to make sure the BEAMER model works well for everyone who might use it. This includes the creation of profiles of different kinds of users to better understand their needs and how the model can help them.” 

Designing the questionnaire 

During the design process, WDO ensured that the questions accurately collected the community’s experiences, concerns and needs. Secondly, WDO provided valuable input to ensure that the questions were relevant and sensitive to the experiences of people living with Duchenne. This includes identifying language or terms that might be confusing or stigmatizing. 

Also, people living with a disease are more likely to engage in a meaningful survey. By involving WDO in the design process, the questionnaire aimed to address issues that matter most to people living with Duchenne, thus increasing the willingness to participate. 

Dimitrios shares: “We are excited to share that we have initial results from the BEAMER questionnaires that validate this tool. These findings will soon be communicated to the global Duchenne community, adding valuable knowledge to the factors influencing patient adherence across disease areas.” 

Role of WDO in the BEAMER project 

In the BEAMER project, WDO is involved in the design of one of the pilot sites that will contribute to the validation of the BEAMER model. By doing so, we will help design solutions for healthcare stakeholders to provide personalized patient support and improve adherence behavior. Secondly, it will help in developing products and services that are better aligned with patient needs and limitations. 

In addition to this, WDO facilitates communication among Duchenne patient organizations worldwide. This includes sharing tailored information, and tools such as the BEAMER questionnaire and ensuring that all stakeholders have access to the necessary resources.  

By participating in the BEAMER project, WDO aims to contribute to the understanding of factors influencing patient adherence and deliver guidance that stakeholders can use to address patients’ needs while boosting adherence. Dimitrios concludes: “We are grateful for the opportunity to be part of the BEAMER project, which not only enhances the relevance of the work but also promotes patient engagement in healthcare research.” 

About the authors: 

Suzie-Ann Bakker, Communications Coordinator, World Duchenne Organization
Dimitrios Athanasiou, Board Member, World Duchenne Organization
Jim Ingebretsen Carlson, Senior Research Consultant, PredictBy 

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