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“Lighting The Way” Blog Series #2: Adherence and Patient-Centredness

Each month, we gather a few partner organisations from the BEAMER project to discuss one of the six dimensions of quality care—safety, effectiveness, patient-centredness, timeliness, efficiency, and equity—related to treatment adherence. Today, we’ll speak with patient organisation APDP Diabetes Portugal, full-service recruitment and adherence company Link2Trials, and non-profit organisation UDG Alliance.  

You’ll learn more about who they are and why they care so much about improving adherence across Europe. You’ll also gain insights about how their specific role within the BEAMER project can help prove critical to achieving the quality care that comes when we work together towards better health outcomes. 

In brief words, can you please let us know who you are and which project partner organisation you are representing?

João Filipe Raposo, APDP Diabetes Portugal: 

My name is João Filipe Raposo, and I am the Clinical Director of APDP Diabetes Portugal. Founded in 1926, APDP Diabetes Portugal is the oldest diabetes association in the world. It is also an outpatient clinic with specialised and integrated diabetes care, actively involved in developing support for people with diabetes, their families, and caregivers. 

Aad R. Liefveld, Link2Trials:

My name is Aad R. Liefveld, and I’m on the advisory board of Link2Trials. 

Link2Trials offers patient pre-selection, recruitment, and adherence services for clinical studies. We focus on improving the patient’s experience to fulfill our mission. We also provide services that help our customers run clinical studies as efficiently and effectively as possible. 

Adrián Quesada Rodríguez, UDG Alliance: 

My name is Adrián Quesada Rodríguez. I serve as the project manager and data protection officer for UDG Alliance. This association develops multidisciplinary solutions that ensure connectivity, compliance, and trust in the context of European-funded research projects and beyond.  

BEAMER is an IMI-funded project working to develop a model that will help promote better adherence behaviour and improve quality care—a word commonly used in health. Before we dive further into the topic, can the readers know what does “quality care” mean for you personally?

João Filipe Raposo, APDP Diabetes Portugal: 

“Quality care” means the provision of care that is integrated within the healthcare sector, that is, which knows and addresses people’s needs. This process of care should aim to have the best use of available resources, empower patients, and involve policymakers. Services should focus on improved health outcomes, especially as it relates to people living with a condition. 

So, “quality care” means having the best value for money, whereby the concept of value includes the previously mentioned dimensions. 

Aad R. Liefveld, Link2Trials:

Apart from being effective, safe, efficient, equitable, timely, and integrated, quality of care, in my mind, is first and foremost about the person in the centre. Someone like you and me, dealing with challenges triggered by their condition and treatment on top of daily life. 

That person has an equivalent partnership with HCPs [healthcare professionals] to treat their condition, and the care provided should follow that person’s changing needs across his/her/their health journey. 

Adrián Quesada Rodríguez, UDG Alliance: 

“Quality care” means effective, safe, and people-centred healthcare facilitated by trustworthy solutions and services. In the context of BEAMER, I believe quality care will be supported by our consortium’s goal to generate research insights that help tailour care to patients needs and context to maximise its efficiency, timeliness, and equitability. 

It’s interesting because quality care can be so personal, yet at the same time, it touches upon certain themes. For our patient organisation APDP Diabetes Portugal, what have you seen as current challenges regarding patient-centredness and poor adherence to treatments? 

João Filipe Raposo, APDP Diabetes Portugal: 

The current dominant pattern of diseases in our countries is non-communicable diseases. Health system organisations are still based on traditional care models designed for acute care conditions. That said, when considering multimorbidity and polypharmacy, treatment adherence is a challenge.  

Furthermore, we can foresee how difficult adherence can be if we consider a lack of multidisciplinary teams, training on patient education and empowerment, and clear definitions of tasks within multidisciplinary teams. Compounding that is the fragmentation among different levels of health provision. 

In this consortium, we see many sectors involved. Each of you, in fact, comes from different backgrounds. So, how can your perspectives, expertise, and even experience come together within the BEAMER project to address the issue of adherence and patient-centredness? 

João Filipe Raposo, APDP Diabetes Portugal: 

APDP Diabetes Portugal brings expertise resulting from 96 years of experience as a patient organisation. We have a long tradition of strengthening patient education, accessing people’s needs, and redesigning healthcare processes. A project like BEAMER that addresses one of the biggest challenges in healthcareadherencewill gain from incorporating all this expertise, which APDP is happy to share. 

Aad R. Liefveld, Link2Trials:

For Link2Trials, our journey to improve adherence and support for patients started long before BEAMER. Because of the services we provide to the pharmaceutical and healthcare industry, we have direct contact with patients, see the challenges before HCPs, and understand the consequences for the pharmaceutical industry and our society. 

What Link2Trials brings to the table is that helicopter viewthe expertise related to our services plus our commitment and focus on improving the patient experience. 

Adrián Quesada Rodríguez, UDG Alliance: 

The potential mainstream adoption of patient-centred solutions looking to support adherence is intrinsically related to trust. UDG Alliance has extensive legal and technical experience and expertise in the research and development of trust-enhancing solutions. Personal data protection, ethics, and security are core elements of this expertise; as part of our work in BEAMER, we seek to ensure that the innovative solutions developed by the consortium are ethical and compliant by design! 

 

For more information about the BEAMER Project and how you can get involved to support its aim to help improve adherence to treatments, visit our page here!

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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.

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.”