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“Lighting The Way” Blog Series #5: Adherence and Equity

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 partner organization you are representing?

Kristina Livitckaia, Centre for Research and Technologies Hellas (CERTH): 

My name is Kristina Livitckaia. I hold a PhD in Medical Informatics, an MSc in Computer Science (eHealth), and an MSc in Economics. My PhD thesis focused on patient adherence. Over the past ten years, I have been involved in various roles within academia, industry, and Research and Development (R&D) facilities across several European countries, focusing on health and safety aspects. In BEAMER, I represent the Information Technologies Institute at the Centre for Research and Technologies Hellas (CERTH/ITI), where I work as a postdoctoral researcher and Research and Development Manager. CERTH/ITI is one of the leading research facilities in Greece, with a strong focus on health research and projects. We are truly interested and aim to provide the most suitable decisions, evidence, and knowledge to improve the lives of patients and healthcare consumers. 

Kathrin Scheckenbach, HNO-Klinik, Universitätsklinikum Düsseldorf (UDUS):

I am Kathrin Scheckenbach, representing the ENT (Ear, Nose, Throat) Department of the Düsseldorf University Hospital, Germany. I am a certified ENT specialist and for more than 10 years I have been Head of our Neck and Cancer Centre. ENT is a very diverse and interesting speciality. We care for patients of all age groups and our patients experience different diseases that are not comparable to each other in terms of physical, functional, psychological, as well as social impairment.  Surgery, conservative treatment methods, and the use of medical health devices all play a role in the therapeutic options that we can offer to our patients. Thus, we have to manage adherence across different situations and for very diverse patients. 

Joao Fonseca, MEDIDA:

I am the co-founder and general manager of MEDIDA and full Professor of Clinical Research at Porto University Medical School (FMUP), where I’m currently the Head of the Department of Community Medicine, Information and Health Decision Sciences. I am a physician and Head of the Allergy Unit at CUF Porto Hospital and Institute. My main interests are Patient-centered innovation, mobile Health, Patient-Reported Outcomes and health technologies assessment.

MEDIDA is an SME established in 2007 as a spin-off of Porto University. Its motto is “Supporting the patient, improving health”, as it aims to improve (i) the quality of healthcare through R&D&I and (ii) the quality of life of patients with respiratory and allergic diseases by providing personalized healthcare services and solutions. MEDIDA is credited by the Portuguese government agency for Innovation (ANI) for R&D services in health and information and communication technologies applied to health. MEDIDA’s expertise ranges from the development of health technologies, especially PROMs and digital health tools directed to chronic patients, to clinical care services and health technology assessment studies.

MEDIDA has been developing mobile health apps since 2012 with a focus on adherence to treatment since 2018 with the INSPIRERMUNDI and INSPIRERS HTN apps. INSPIRERMUNDI aims to improve adherence to inhaled treatments using image processing technology and gamification concepts. INSPIRERS HTN aims to improve hypertension treatment adherence and blood pressure self-monitoring also using an embedded smartphone camera and advanced image processing.

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.

 

Kristina Livitckaia, Centre for Research and Technologies Hellas (CERTH): 

I think it is smart to ask for personal and professional perceptions of quality of care. In BEAMER, we bring together diverse expertise and experiences within healthcare. The quality of care defies a single definition because it encompasses numerous dimensions, such as care efficiency, patient safety, personalization, knowledge integration and many others. From my perspective, quality care involves an approach that integrates multiple approaches and technologies to drive personalization and patient/consumer satisfaction, considering the specific circumstances of the condition. Quality care is about precision health: timely, tailored, and informed decisions based on the best available evidence, supported by medicine and technologies. 

Kathrin Scheckenbach, HNO-Klinik, Universitätsklinikum Düsseldorf (UDUS):

Quality care represents the ultimate aim of patient care. It comprises professional, ideally evidence-based diagnostics and treatment options, as well as supportive and appreciative interactions among medical stakeholders for the well-being of the patient. 

Joao Fonseca, MEDIDA:

The meaning of quality care can differ depending on the context and personal factors. Overall, I would highlight the perception of the patient and the degree to which the aims of care are met. In other words, it concerns how patients experience care and how well it aligns with the goals and expectations of the various stakeholders. 

 

Photo by ANIRUDH on Unsplash
Photo by ANIRUDH on Unsplash

 

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

 

Kristina Livitckaia, Centre for Research and Technologies Hellas (CERTH): 

There are indeed many challenges. Firstly, adherence is a complex and subjective matter, varying across different settings, making it difficult to define. Secondly, there is a lack of comprehensive patient profiles, highlighting the need for a better understanding of patients’ psychological, behavioural, and environmental factors. Recognising that patients are unique individuals with their own motivations, beliefs, and external influences is crucial. Thirdly, there is a need for cohesive approaches that consider an integrative vision of influencing factors, combining different dimensions of adherence. Lastly, more evidence is needed for disease-agnostic approaches that can be applied across various healthcare contexts.

 

Kathrin Scheckenbach, HNO-Klinik, Universitätsklinikum Düsseldorf (UDUS):

Defining ‘equity’ can be challenging as it can encompass various aspects. Our patients differ in terms of age, basic health and mental status, social status, income, family status, external support, living situations, and more. It becomes complex to define ‘equity’ given these diverse factors. Poor adherence may be influenced by all these mentioned points and many others.

 

Joao Fonseca, MEDIDA:

The quality of care can vary significantly, and patient characteristics play a major role in unwarranted variation. Healthcare systems face significant equity challenges, ranging from access to care to personalization of treatment. Even geographic factors, such as where individuals live, can impact the care they receive and have access to. As chronic diseases become increasingly prevalent in healthcare, poor adherence to treatments emerges as a major threat to achieving desired outcomes. It is often under-recognised that adherence is a key driver of treatment success.  

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 equity?

 

Kristina Livitckaia, Centre for Research and Technologies Hellas (CERTH): 

I come from a technical and economics background, focusing on solutions for healthcare throughout my entire career, and what I envision is essential to be delivered is the importance of data-driven cohesive approaches and an interdisciplinary blend of aspects for decision-making. However, I am not the only one in the CERTH/ITI team who supports the project – we are a team of highly motivated and experienced people. Together, we aim to deliver quality technical outputs such as BEAMER and Adherence Data Lab Platforms that will serve both the clinical and research community, ensuring that each aspect of the technology selected is fit for each BEAMER setting. 

Kathrin Scheckenbach, HNO-Klinik, Universitätsklinikum Düsseldorf (UDUS):

We are in direct contact with patients of a broad spectrum of diseases with varying impacts on their personal condition and ongoing life. Thus, we are able to contribute to the project by bringing in our experience with a view on diversity. Since the overarching idea of the BEAMER project is disease-agnostic adherence, our scientific and clinical experience with a very diverse group of patients and diseases could help to identify and test aspects of adherence that are relevant across all of these patient groups and disease entities. 

 

Joao Fonseca, MEDIDA:

MEDIDA’s experience in health technology assessment helped the projects’ efforts to systematically review the literature to inform the ‘BEAMER model’. Data from previous studies have shown how adherence to treatment can contribute to necessary insights into patients’ perspectives. We can participate in the design of new clinical studies on adherence and the collection of new data. As mentioned from the start, MEDIDA would like to use the mHealth technologies we developed to monitor patients’ adherence in real-life settings. Given our experience, we are available to help with data analysis using data from different sources.  

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.”