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“Lighting The Way” Blog Series #3: Adherence and Timeliness

Each month, we convene several partner organisations from the BEAMER project to discuss one of the six dimensions of quality care—safety, effectiveness, patient-centredness, timeliness, efficiency and equity—as it relates to adherence to treatments.  

You will 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 a few words, can you tell us who you are and which project partner organization you are representing?

 

Nadine Bol, Tilburg University:

I am Nadine Bol, an Assistant Professor in the Department of Communication and Cognition at Tilburg University. Together with Professor Emiel Krahmer and PhD candidates Rachel Drbohlav Ollerton and Gwenn Beets, we have a central role in the (pilot-)testing, finetuning, and validating of the BEAMER model.

 

Andrés Castillo, SERMAS: 

I am Andrés Castillo, a researcher at the Fundación para la Investigación Biomedica and Head of Technological Innovation at the pediatric hospital Niño Jesús in Madrid. We are end users of the project, together with the Foundation for Research in Primary Care. I will coordinate one of the pilots in work package 4 (WP4). SERMAS is a public health provider for the Madrid region, comprising all hospitals and primary care centers.

 

Jess Vogt, Empirica:

My name is Jess Vogt, and I work for Empirica. Our role in the project is to co-lead work package 5 (WP5) and the implementation strategy. We are an academic partner and share leadership with Merck. I am one of two staff members from Empirica, and my colleague is Jessica Paul. However, we both work part-time and share the same role.

 

BEAMER is an IMI-funded project working on developing a model that will help promote better adherence behaviour and improve quality care, a term commonly used in health care. Before we dive further into the topic, we invite readers to share what “quality care” means to them personally.

 

Nadine Bol, Tilburg University:

As a communication scholar rooted in social sciences and humanities, I would define quality care as the fulfilment of patients’ needs regarding information about their health, communication related to their health, and ultimately, their health outcomes. The fulfilment of these needs depends on various personal characteristics such as a patient’s health literacy, interpersonal characteristics such as the level of instrumental and affective communication from the doctor, and environmental characteristics such as a patient’s online social support network. These characteristics should be recognized and tailored accordingly.

 

Andrés Castillo, SERMAS: 

From the perspective of a pediatric hospital, quality care is integral to all that we do. It means placing the patient at the center of the organization and recognizing that the patient is part of a family whose routines are modified by the disease. Quality care is about using technology to optimize the relationship between the patient and his/her carers to the different services of the hospital. Moreover, for the healthcare system to be viable, it must be sustainable, and research and innovation must be aligned to provide personalized care.

 

Jess Vogt, Empirica:

Quality care is when the care recipient feels well taken care of, their needs are met, and they are supported in achieving their health goals. Additionally, quality care involves ensuring that the recipient of care feels safe, trusts the care providers and feels well looked after.

 

 

It’s interesting because quality care can be so personal yet at the same time, it touches upon certain themes. To our project partners, what current challenges have you observed in terms of timeliness and poor adherence to treatments?

 

Nadine Bol, Tilburg University:

In our research on patient populations, we have identified several challenges that we hope to reframe as opportunities through the BEAMER project. First, we recognize that adherence is a complex behaviour that often requires patients to perform various complex behaviours for a prolonged period. Many barriers exist that can lead to intentional or unintentional non-adherence behaviours. For example, patients may have concerns about their medication, which may lead them to stop taking them. Second, we have observed a lack of communication efforts in conveying necessary information for patients to maintain adherence. For example, in only a small percentage of clinical consultations, clinicians dedicated time to discussing lifestyle-related advice with their patients (1). Through our research on adherence, we stress the importance of communication as a tool for supporting and promoting adherence, as it can significantly impact the quality of care.

 

Andrés Castillo, SERMAS: 

My background is in Computer Science and Sociology, so I am not a healthcare professional (HCP). However, when I discuss the BEAMER project with doctors, nurses, or GPs, their interest is immediately piqued. Healthcare professionals from all specialities are deeply concerned about their patients’ adherence. Similarly, management is also worried about poor adherence because it means millions of euros are wasted from their limited budget. Furthermore, now that I am more aware of the issues surrounding adherence, I have experienced myself and observed in my family the factors that have hindered compliance with prescribed treatments. Every day, I witness the difficulties that my parents face in managing their medications and diets as medical treatments consume a significant portion of their lives. 

 

Jess Vogt, Empirica:

Based on my experience working with patients in European projects, it has become evident that for care to be considered quality care, it must be appropriate for the recipient. Patient-centred care is a good foundation for quality care, where delivery is personalized and tailored to the patient’s needs. Unfortunately, budget constraints and pressure on healthcare professionals’ capacity must also be considered, as they can create barriers to delivering quality care in a timely manner.

In this consortium, we see involvement from various sectors, and each of you comes from a diverse background. So, how can your perspectives, expertise and experiences come together within the BEAMER project to address the issues of adherence and timeliness?

 

Nadine Bol, Tilburg University:

Tilburg University has a wealth of experience in studying patient behaviours, and how we can understand differences in behaviours and health-related outcomes. For the BEAMER project, our aim is to provide an evidence-based understanding of (non-)adherent behaviours and how to communicate health-related recommendations to patients. Using a variety of qualitative and quantitative research methods, we will not only test the validity and applicability of the BEAMER model but also put effort into understanding how we can get the BEAMER model across, such that patients and clinicians can adequately work with the outcomes of the BEAMER model. Moreover, in most of the research we do, we collaborate with the healthcare sector. As such, we have close connections to those we are designing the BEAMER model for (e.g., patients and clinicians). This approach guarantees that the research we do will have a significant impact in areas where it is most needed.

 

Andrés Castillo, SERMAS: 

At SERMAS, we provide fundamental insights for the BEAMER project from both primary care and hospital perspectives. From our daily experience, we understand that healthcare professionals (HCPs) play a fundamental role in improving adherence to treatments and ensuring patient safety and quality of life. This is why I am involved in the stakeholder engagement tasks throughout the project. We need to ensure that HCP insights are aligned with the project’s objectives in its work packages and tasks so that the project outcomes are most helpful to us.

 

Jess Vogt, Empirica:

I believe that Empirica’s extensive experience in research projects focusing on digital health for improving care delivery means that we can provide insights into typical barriers and strategies to negotiate them. Empirica supports innovation in the application of new technologies for better, person-centred care and has conducted impact assessments and developed business models skills and knowledgeThis, coupled with our expertise in sustainability, will serve us well in creating implementation guidance and a BEAMER roadmap for translating the results of the project beyond the end of the project’s lifespan.

 

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.”