“Lighting The Way” Blog Series #4: Adherence and Effectiveness

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?

Anne Moen, University of Oslo: 

I am Anne Moen, RN, PhD, FACMI, FIAHSI, a full professor at the Faculty of Medicine at the University of Oslo, Norway, and an adjunct Professor at the Norwegian Center for eHealth Research in Tromsø, Norway. I am also the Director of UiO: CoLab, Institute for health and society, which is a research lab that supports technology-mediated complex, patient-focused interventions in primary care or the home, as well as multidisciplinary teamwork where health professionals, patients and their families collaborate to sustain health and wellbeing. 

The University of Oslo is one of the research partners for the BEAMER project and will oversee the activities to validate the BEAMER model.  

Hamza Nahoui, Akershus University: 

I am currently undergoing my cardiology training at Akershus University Hospital. In September 2022, I began working on a PhD project titled “Severe Obstructive Sleep Apnea, Heart Failure and Daytime Respiration”. The second article of the project will aim to investigate PAP adherence among the study population and identify possible predictors of non-adherence to this important treatment. 

Karolina Mackiewicz, ECHAlliance: 

I am leading the Innovation team as Innovation Director at the European Connected Health Alliance (ECHAlliance), a global connector for digital health. Our team supports and facilitates transformational research and development projects to boost the digital transformation in health and care. Currently, we work with more than a dozen projects and IMI is one of the most important of them. At BEAMER, we lead communication and dissemination efforts, making sure that the world knows about BEAMER and its results.  

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 our authors to share what “quality care” means to them personally.

Anne Moen, University of Oslo:

Quality of care comes with many meanings; it is a highly subjective and value-laden concept. To me, quality care includes the best possible professional judgment in treatment and care, coupled with ample opportunities for meaningful engagement and preferred participation of the ultimate beneficiary – the patient and support network. Shared decision-making and respect for the patient’s voice, as well as opening opportunities to actively use and act on personal health data, are examples of components that help achieve quality care. 

Hamza Nahoui, Akershus University: 

It means adapting our care individually in a way that makes it easier for recipients to understand the background of our assessments. People will be more capable of recognizing quality care when they can relate our advice and actions to their challenges in a reasonable and logical manner. This will also underscore the interest we, as care providers, have in making positive changes in the lives of our patient group. 

Karolina Mackiewicz, ECHAlliance: 

In essence, quality care, to me, entails healthcare services that meet the highest standards of safety, effectiveness, and patient-centeredness. Similarly, to what has been previously mentioned, quality care means delivering the best possible care while considering a patient’s individual preferences, values, and needs. 

In the context of BEAMER, which is treatment adherence, quality care would involve ensuring that the patient fully understands the importance of adhering to the prescribed treatment plan and providing them with the necessary resources and support. This might include clear instructions on how to take medication or perform certain treatments, regular check-ins to monitor progress and address any concerns, and ongoing education about the benefits and potential side effects of the treatment. 

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 effectiveness and poor adherence to treatments?

Anne Moen, University of Oslo: 

From a person and patient perspective, it is necessary to reflect on what we are conveying as we are discussing “adherence”. We should try to better understand choices and behaviours as such, and in particular what we convey in characteristics of “poor” adherence. In my opinion, a challenge we should elaborate on in BEAMER is how to better understand the reasons for choices leading to certain behaviours, also those often characterized as “non-adherence”. Fitting treatment activities and follow-up into daily life may not follow a projected path or expectations. Therefore, developing the conversation between the patient and his/her health providers can help, also to drive supportive behaviours that increase adherence and safe use of medicines and supportive technologies.     

Hamza Nahoui, Akershus University: 

It becomes challenging to assess the benefits and outcomes of methods and treatments, both from a clinical and academic perspective. A significant hurdle is convincing non-adherents to heed advice with logical and individualized arguments. However, an even greater challenge lies in finding alternatives when non-adherence is unchangeable.

Karolina Mackiewicz, ECHAlliance: 

Coming from public health, I believe that a person’s health and health behaviours are significantly influenced by their social, economic, and other environmental factors, which can be seen as a system. Therefore, it is important to examine the systemic challenges when it comes to effectiveness and poor adherence to treatment. Some examples that come to mind include lack of patient education, the complexity of treatment regimens, the cost of treatment, potential side effects, communication barriers or cultural differences. 

As an immigrant myself, originally from Poland and now residing in Finland for the past 15 years, despite being proficient in the language and considering myself health literate, I often encounter difficulties navigating the healthcare system and comprehending the procedures. 

Adopting a system-based approach necessitates a multi-stakeholder and multi-layered response, which is precisely why the diversity represented by the BEAMER consortium is indispensable. 

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 effectiveness?

Anne Moen, University of Oslo:

I think with BEAMER we have a “mandate” and responsibility to incorporate insight from everyday activities and situational constraints when we advance progress with the development and testing of the BEAMER. I am committed to contributing to more diversified and personalized approaches to ensure the full benefit of any treatment and also ensure evidence-based changes in recommendations and effectiveness. 

Hamza Nahoui, Akershus University: 

In one of the studies of my PhD project, I am trying to identify predictors of PAP non-adherence by assessing daytime respirations in individuals with sleep apnea. As a clinician, it is understandable to primarily concentrate on the conditions and treatment related to these individuals. However, this approach may inadvertently overlook the individual and environmental circumstances that can significantly influence the overall situation and outcomes. Engaging various resources with diverse backgrounds will assist me, as a clinician, in recognizing these “external” factors and comprehending their impact on improving adherence. 

Karolina Mackiewicz, ECHAlliance:

I think that both ECHAlliance and I bring a diverse perspective encompassing numerous stakeholders, which is vital for addressing the complex issue of treatment effectiveness and adherence, as mentioned previously. ECHAlliance has more than 1000 members coming from government, academia, business and civil society and thanks to the way our organization work, we are able to facilitate the dialogue between the different groups, understanding their interest and agendas and thus, communicating effectively to them. In essence, we possess a comprehensive 360-degree view of the health ecosystem and possess the ability to bring this perspective to the BEAMER initiative and connect BEAMER with these various stakeholder groups. 

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!