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Understanding Duchenne: The Role of World Duchenne Organization in BEAMER 

 

(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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Supported by a grant from IMI, the project has received funding from the Innovative Medicines Initiative 2 Joint Undertaking under grant agreement No 101034369. This joint undertaking receives support from the European Union’s Horizon 2020 research and innovation programme, the European Federation of Pharmaceutical Industries and Associations [EFPIA] and Link2Trials. The total budget is 11.9 M€ for a project duration of 60 months.

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Healthcare Professional

The primary aim of the end user personas is to support the creation of materials to support the implementation of the BEAMER model framework and to help define requirements for the elements of the BEAMER model framework. Hence, healthcare professionals (HCPs) represent the primary envisaged end user group of the BEAMER model framework and the associated Adherence Intelligence Visualisation Platform (AIVP)

It is one learning from the joint design process that the job titles of healthcare professional team members do not necessarily predict the roles they would play within the change management process for implementing BEAMER and installing it as a standard model within healthcare. Additionally, the role and responsibilities of certain job titles, for example nurse, varies across different healthcare systems and would affect how they interact with the BEAMER model outputs and the access they would be permitted and so it would not be helpful to include these job titles: The four personas represent role-independent archetypes within the group of HCPs. They encompass a Managerial HCP Persona, an Implementer HCP Persona, a Support HCP Persona, and a Established HCP Persona.

These healthcare professional personas may be further tailored to specific healthcare settings depending on the needs of the individual pilot sites. Thus, adapted or spin-off versions of these original personas may be considered. The persona displays include a summarising statement, goals, challenges, experience, and needs to enhance the accessibility and usability of the model while minimising user burden.

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Patient Organisation

Patient organisations are considered potential users of the model outputs. Consequently, personas were designed for these groups to assure that the implementation materials may also support their needs in the longer term, thus fostering sustainability of the project outputs.

The identified focus areas within this persona are goals, needs, skills and tools, along with potential challenges anticipated during the implementation process. The persona emphasises awareness-raising, capacity building, education, peer support provision, and the promotion of research and development in therapeutic care.

The patient organisation persona serves as a theoretical framework representing how patient organisations could benefit from and include the BEAMER model framework in their therapy and care related as well as their organisational work. This persona comprises the needs, goals, challenges and necessary tools, facilitating preparation and implementation of the model and optimising the user experience of patient organisations as end users of the BEAMER model framework. It can be used as a guide to identify potential obstacles and understand the prerequisites for a patient organisation to successfully adopt and integrate the BEAMER model framework.

“In implementing the BEAMER model, we want to be able to respond to the different needs of our patients to ensure their adherence, build a supportive community and improve outcomes.”

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