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Improving Treatment Adherence: The Importance of Science Of Patients’ Engagement

 

Why Is Treatment Adherence Important? 

Failing to adhere correctly to a therapy can have serious consequences, both individually and for the entire healthcare system. For people with multiple sclerosis, not following treatment can lead to worsening symptoms, an increase in relapses (reoccurrence of new or old symptoms), and in some cases, progression of the disease. Additionally, non-adherence to therapies (not following treatments as planned) contributes to increased healthcare costs due to hospitalizations, emergency treatments, and other expensive interventions. 

BEAMER aims to collect valuable data from people with multiple sclerosis and their caregivers to identify the factors that affect treatment adherence. This data will be used to develop predictive models that can anticipate non-adherence and provide personalized solutions to prevent it. 

What is the BEAMER Project? 

BEAMER (Behavioral and Adherence Model for improving quality, health outcomes, and cost-Effectiveness of healthcare) brings together experts from various disciplines to analyse the factors influencing patients’ behaviour towards prescribed therapies. The ultimate goals are to support individuals in following their treatment plans, improve their quality of life, and reduce healthcare costs associated with non-adherence. 

AISM and its Foundation FISM have long been pioneers in promoting a better quality of life for people with multiple sclerosis. Their participation in BEAMER marks another significant step in this direction. The Foundation brought the expertise developed through the MULTI-ACT European project, an initiative that set a benchmark for patient engagement in research by creating an innovative governance approach that promotes the active participation of all stakeholders. 

Conducting science “with and of patient input” is now a fundamental requirement for scientific research to achieve life-changing results. The primary aim is to gather the essential perspectives of all involved actors and translate them into scientific terms. 

The FISM team applied this innovative governance model, focusing not only on data collection but also on ensuring representativeness within the research methods used. In this context, the work of the Engagement Coordination Team (ECT) is crucial (i). The main goal of this cross-functional working group is to ensure that the process is inclusive, placing the needs and experiences of patients at the centre of the research project. One key focus of the FISM Engagement Coordination Team, supporting BEAMER, was to help finalize a survey designed with and for people with multiple sclerosis. This survey aimed to understand the factors that influence non-adherence to therapies. 

The impact of this work was to ensure that the survey was truly representative and effective. It’s not just important to gather opinions or perspectives through surveys, but also to carefully consider how the survey is designed. Involving those directly affected makes a significant difference in the quality and relevance of the outcomes. 

The MULTI-ACT Method: Involving to Improve 

The MULTI-ACT method is a collaborative governance model designed to involve various stakeholders—patients, researchers, clinicians, and policymakers—in the research and development process. This multidimensional approach allows for the integration of diverse perspectives, leading to solutions that more effectively address the real needs of people. 

This approach has already been adopted by several  projects and multi-stakeholder initiatives, such as the International Progressive MS Alliance—a global collaboration of MS organizations, researchers, health professionals, the pharmaceutical industry, companies, trusts, foundations, donors, and people affected by progressive MS working together to address the unmet needs of people with progressive MS—or the PRO MS initiative, jointly led and coordinated by the European Charcot Foundation and the Multiple Sclerosis International Federation (MSIF), with the Italian MS Society acting as the lead agency on behalf of the Global MSIF Movement (ii,iii). The global PROMS survey designed with and for people with MS (via ECT) was able to reach 5000 people globally. 

AISM and its Foundation’s commitment to the BEAMER project represents an important step towards a future where people with multiple sclerosis can live full and satisfying lives, better managing their condition. Capturing people living with the disease experiences and preferences and make it scientifically meaningful by and for the other stakeholders is at the root of the creation of the BEAMER predictive model that can anticipate and prevent non-adherence, offering real personalized solutions. 

About the authors:

Paola Zaratin, Director of Scientific Research, Italian MS Society – Italian MS Foundation and team


i: Zaratin P, Khan U, Graffigna G. Comment on “Reflections on patient engagement by patient partners: How it can go wrong”. Research Involvement and Engagement. 2023;9(1):122. 
ii: Zaratin P, Vermersch P, Amato MP, Brichetto G, Coetzee T, Cutter G, et al. The agenda of the global patient reported outcomes for multiple sclerosis (PROMS) initiative: Progresses and open questions. Multiple Sclerosis and Related Disorders. 2022;61:103757.
iii: Zaratin P, Samadzadeh S, Seferoğlu M et. al (The global patient-reported outcomes for multiple sclerosis initiative: bridging the gap between clinical research and care – updates at the 2023 plenary event. Front. Neurol. 15:1407257. 2024; doi: 10.3389/fneur.2024.1407257

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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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Information on this website reflects project owner’s views and neither IMI nor the European Union, EFPIA, or any Associated Partners are responsible for any use that may be made of the information contained therein.

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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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