Through my portfolio, I invite you to explore my journey as a designer and the projects that reflect my commitment to human-centered design.
Have a question or want to share your thoughts about my work? Feel free to send an email.
Through my portfolio, I invite you to explore my journey as a designer and the projects that reflect my commitment to human-centered design.
Have a question or want to share your thoughts about my work? Feel free to send an email.
WINNERS OF THE EUROPEAN RARE DISEASE REGISTRY COMPETITION
HEALTHCARE
DATA ALTRUISM
BRIEF
Design a scalable operating model and a MVP for a European rare disease registry. The model was expected to align with the principles of data altruism and be adaptable to the upcoming data altruism law. However, specific expectations for the outcome were not clearly defined, leaving room for innovation and creativity. The brief encouraged our team to present our vision of the information architecture and a clickable prototype of the European Rare Disease Registry.
The main challenge of the project was striking a balance between the needs of the physicians for an efficient and comprehensive registry and the needs of the patients for quicker, more accurate diagnoses and a comprehensible treatment journey.
USER RESEARCH
Initially, we familiarized ourselves with the data altruism law and the objectives of the competition. We then proceeded to gain a deeper understanding of the world of rare diseases. This involved a series of interviews with two of Estonia's notable rare disease specialists, Katrin Õunap (Professor in clinical genetics at the University of Tartu) and Sander Pajusalu (Head of the Genetics and Personalised Medicine and Medical Geneticist at the Tartu University Hospital and Associate Professor at University of Tartu).
Through these discussions, we discovered that although current methods for storing genetic and other patient data related to rare diseases are secure, they are not designed for sharing. To gain a broader perspective, we also engaged with a local and a foreign caregiver for patients with rare diseases. It was revealed that the diagnostic process for these conditions can span several years and even then, the resulting diagnosis could potentially be inaccurate.
As you can see from our brief, there was a multitude of factors to consider during the design process.
The strength of our team lay in its balanced approach: half of the team focused on the human aspect, addressing design and user needs, while the other half delved into the technical capabilities and legal restrictions associated with the development of such a platform.
The quality of life of the patient (and the team's loved ones), depends on the doctor's ability to find the best possible/right solution to a rare disease.
The challenge lies in the scarcity of patients within a single country, making diagnosis more challenging for doctors. Furthermore, the global medical community faces obstacles in exchanging information due to the inability of genetic data to cross international borders.
Establish a vision of the registry for the doctor-researcher but also develop a solution aimed at benefiting patients — a secure community. This initiative aims to relocate sensitive health information from insecure platforms like Facebook groups, offering a protected space for patients to connect and share experiences.
THE SOLUTION
Over the course of six weeks, we diligently developed a sophisticated registry equipped with decision support, a well-structured backend, and a design tailored for doctors. However, in the final week, we were reminded of Sander Pajusalu's insightful advice: never underestimate the patient.
In these 8 weeks, we built a comprehensive system for all the stakeholders, interviewed and validated our product with dozens of scientists, patients and doctors from Estonia and the EU. Nearly every interview demonstrated how vulnerable patients are in finding the correct diagnosis.
We ultimately presented a two solution catering to both the patient and the doctor-researcher.
For patients, we designed an application primarily aimed at creating a secure community for patients and their loved ones who are either awaiting a diagnosis or living with a rare disease. The application allowed users to log their vital signs, thus maintaining a health diary, and communicate with other users about the disease and related experiences.
The first was an open registry, accessible with appropriate permissions, where necessary data could be easily retrieved. The second component was a closed access system, essentially a remote desktop solution, where doctor-researchers could securely examine other patients' genetic data and perform necessary tests. The third component was designed to facilitate the transfer of test data from the remote desktop to the doctor-researcher's personal computer.
All data transfers and visibility would be under stringent protection ensured by the backend and an ethics committee.
READ MORE
https://www.artun.ee/ane-laande-ja-helen-bender-rahvusvahelise-disainivoistluse-voitjate-seas/
https://www.linkedin.com/posts/helen-bender-designer_designcompetition-rarediseaseregistry-informationarchitecture-activity-7007003315754446848-IvIZ?utm_source=share&utm_medium=member_desktophttps://erdr.eu/
https://erdr.eu/