World Duchenne Organization

Health conditions and target population approached by WDO:

Caregivers of patients with Duchenne Muscular Dystrophy. Experienced adherence challenges are that caregivers are given advice and materials to understand what care is needed for their children and what to avoid in case of an emergency, but the materials are often so overwhelming that caregivers do not understand the content. WDO has their headquarters in the Netherlands and has an umbrella organisational structure with member organisations in different countries. Caregivers will be recruited through WDO and the member organisations.

WDO is a non-profit worldwide organisation dedicated to finding a cure and viable treatments for DMD. WDO is also a Members of EURORDIS, RDI and EPF. The organisation’s overarching goals are to promote research activities and provide information to patients and their families as well as clinicians, on current research, drug development, standards of care (SOC) and patient advocacy. It has 45 member patient organisations across Europe and the globe.

World Duchenne Organization

Health conditions and target population approached by WDO:

Caregivers of patients with Duchenne Muscular Dystrophy. Experienced adherence challenges are that caregivers are given advice and materials to understand what care is needed for their children and what to avoid in case of an emergency, but the materials are often so overwhelming that caregivers do not understand the content. WDO has their headquarters in the Netherlands and has an umbrella organisational structure with member organisations in different countries. Caregivers will be recruited through WDO and the member organisations.

WDO is a non-profit worldwide organisation dedicated to finding a cure and viable treatments for DMD. WDO is also a Members of EURORDIS, RDI and EPF. The organisation’s overarching goals are to promote research activities and provide information to patients and their families as well as clinicians, on current research, drug development, standards of care (SOC) and patient advocacy. It has 45 member patient organisations across Europe and the globe.

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.

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.”