UniRares (www.UniRares.ch) presents Patient support personal record: Empowering patients to take active role in their medical care
In its first year of operation, the association UniRares has developed a paper version of the PSPR in order to help patients take an active role in their medical care, as they are often the best-placed to know their own disease, for better or worse.
This summary document aims at gathering and structuring all the different medical information that has been built over time, and should be presented to physicians during consultations. It can also serve as a reminder for the patient on the questions that he would want to ask during a medical consultation, and helps the isolated patient to gather on one single document the medical history, the identity card of the patient, the symptoms, the medical journey, the successful or unsuccessful drugs, the analysis results and the positive or rejected diagnoses. The “patient support personal record” can also be a tool for patients to set and prepare questions for the medical specialist in order to set short-term, mid-term and long-term goals together.
When the paper version of the PSPR was finally released in summer 2019, the question of the digital version arose.
From paper to digital: UniRares, LivingLab and the HES-SO Valais Wallis take the digital PSPR project forward.
As you may have seen in the newspapers, the electronic patient record (EPR) is being led by hospitals from the Swiss Romandie under the name of “CARA”, in particular by HUG and CHUV. CARA is expected to launch and to become publicly available this year. It will greatly facilitate the relationship among health care professionals, and will provide a continuous access to everyone to its medical record. All this in a legal clear framework, and within a validated and common exchange protocol. This is a huge step for us, as patients.
In spring 2020, thanks to a working partnership between LivingLab and the HES-SO Valais Wallis, the digital PSPR project has been taken forward.
Yannick Mermod – a final-year student from the section “Information System”, supervised by Dr. Prof. Michael Ignaz Schumacher and Benjamin Nanchen – Living Lab Manager, has chosen to work on a Web Application for the PSPR as part of his Bachelor thesis, and to make it more extensive than the EPR. More extensive, as the amount of data for patients suffering from rare diseases is more important than for other patients.
A patient suffering from a rare disease needs solutions adapted and designed accordingly to his own needs and specificities. His life is filled with administrative paperwork required by his health condition, over-complicated and absurd insurance pathways and countless medical appointments.
Usability and Privacy-centricity are the key components to design a complete and up-to-date medical record, easy to be used on a daily use.
UniRares is convinced that the rare disease patient must have a complete and up-to-date medical record to facilitate its daily use. His data must be at the same time secure and easy to share.
As part of his Bachelor work, Yannick has analyzed the needs of UniRares and has selected the platform PrYv (www.pryv.com) to meet the requirements in terms of data storage. Mr. Pierre-Mikael Legris – PrYv co-founder, has demonstrated a high interest for this project, and has contributed to the project by sharing his knowledge of the platform and helping Yannick in designing the right data model.
The very first Web Application of the “patient support personal record” – UniRares is ready to be launched.
It is thanks to these enriching encounters and the close collaboration between the different partners of the PSPR that Yannick Bachelor’s work has given rise to the Beta version in web format of the “personal patient assistance file” – UniRares. In order to make it available to its members, the next step will be to obtain support and funding to finance the improvement of the technology, as well as the hosting of the application and associated data, while guaranteeing privacy and confidentiality.
UniRares knows that patients suffering from rare diseases or without diagnoses are the weakest. Hence its wish to develop a mentoring program between UniRares members to set up and run this “patient support personal record”, while benefiting from each other’s experience.
This idea of mutual help is the DNA of the association.
Mélanie Gillard Almeida Oliveira David Pecoraro
Unirares Vice-president UniRares President
Dr. Michael Ignaz Schumacher