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BEAMER Consortium Teams Up with Privacy Symposium to Spotlight Healthcare Data Privacy in Venice Event

Data has repeatedly been characterised as the “new gold”, highlighting its growing importance in all aspects of human activities. As such, data forms a central part of research and, by extension, the BEAMER project. This is particularly relevant for the design, development, implementation, and testing of the BEAMER model framework, a disease-agnostic behavioural and adherence model for improving the quality, health outcomes, and cost-effectiveness of healthcare.

When dealing with data, especially sensitive personal data related to health, privacy and confidentiality play a major role in all of the related activities envisioned. Ensuring that data is adequately protected and secured is essential from the design phase and throughout the data lifecycle. This need is even more emphasized when advanced technologies, such as Artificial Intelligence, are being deployed.

The BEAMER Consortium, committed to promoting privacy-preserving solutions and adopting a privacy-by-design and by-default approach, has partnered up with the Privacy Symposium (https://privacysymposium.org/), taking place in Venice from June 10^th to 14^th, to bring forward important topics related to data in healthcare.

The Privacy Symposium aims at promoting international dialogue, cooperation, and knowledge sharing on data protection, regulatory compliance, and innovative technologies. It will offer over 100 sessions with over 300 top-level speakers and data protection authorities, including international organisations, European authorities, national data protection authorities, and experts in innovative technologies, including experts from the BEAMER Consortium.

This year’s edition will feature dedicated sessions for health and medical data privacy within the track on Health and Medical Data Compliance, focusing on evolving regulations that will impact health data and medical research, including the European Health Data Space Regulation, the AI Act and the Medical Devices Regulation. It will discuss in depth the secondary use of data, emphasising the needs and challenges, as well as the solutions and innovative approaches adopted through research and practice.

Such dedicated sessions on health and medical data will include:

European Health Data Space in Practice
AI Act, MDR, and EHDS Interplay and Impact on Medical Research
Secondary Use of Data: Needs and Challenges
What is the Value of Synthetisation, Pseudonymisation and Anonymisation for the Secondary Use of Medical Data?
Alternative Legal Basis to Consent for Processing Medical Data
Extending the Data Space: International Transfer of Health and Medical Data for Research

Join the Privacy Symposium to hear more about data compliance in health and the BEAMER approach, as well as to explore more topics, including Artificial Intelligence, Cybersecurity, Privacy-Enhancing Technologies, and Technology and Compliance!

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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.”