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 (pryv.gihub.io/www) 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

 Professor                               

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Medisanté and Pryv join forces to combine the best of both worlds, thus making Remote Patient Monitoring simple and scalable while ensuring GDPR compliance out-of-the-box.

Lausanne/Lucerne, Switzerland, March 19th, 2020 – The Swiss leading provider of privacy and personal data management software, Pryv SA, and Medisanté Group AG, the world’s leading provider of direct-to-cloud medical IoT infrastructure, announced a strategic collaboration.

A simple and secure solution for remote monitoring of patients at home is ready to be implemented by any home-care service and healthcare facility, globally. The platform addresses the imperatives across the continuum of care: focusing on delivering seamless user experience, reliable health-metrics, and establishing a patient-to-care team relationship, without compromising on data privacy and digital ethics.

 ”Today, more than ever, remote access to care is nothing less than an indispensable service. We are thrilled to be able to work with Medisanté products, which have been proven in delivering the unbeatable strength of accessibility, connectivity, and usability.” says Pierre-Mikael Legris, CEO at Pryv. “Leveraging on Medisanté’s zero-touch medical IoT infrastructure, we are determined to ushering remote patient monitoring and telecare where it is needed the most, to anyone, at any time”

Strengthening the adoption of innovative digital health solutions relies on two main pillars: usability and trust. The personal patient data is critical and highly sensitive- thus, undoubtedly, security and privacy are at the core of designing reliable medical-grade digital solutions. GDPR, MDR, national-specific regulations and reimbursement plans set up high entry barriers for medical IoT and digital healthcare providers, leaving them no choice but to comply. The regulations make it clear: « consent should be explicitly and freely given». Moreover, any system provider should be able to offer an opt-out option at any given time.

“Our strategic partnership with Pryv offers a major added value to care organizations and CROs using our solution for Remote Patient Monitoring, as it allows them to guarantee data privacy. It also gives them top-grade tools to manage explicit consent to share patient data with the various stakeholders, such as health insurances in countries where reimbursement of RPM is dependent of a minimal number of measurements performed by the patient each month.” – Gilles Lunzenfichter, CEO and Co-founder of Medisanté

Harnessing the power of medical IoT devices allows keeping track of patients’ health outside of the healthcare premises, drastically decreasing costs, optimizing resources and most importantly significantly improving the well-being and comfort of patients.

Facilitating the care teams’ daily operations while scaling up telemonitoring to millions of chronic and elderly patients is a reality now. Not tomorrow, but today. Book a demo.

Powered by Medisanté & Pryv. 

ABOUT

About Medisanté: https://www.medisante-group.com/

Medisanté is headquartered in Switzerland and is an innovation champion in the Personal Connected Health Alliance where it chairs the direct-to-cloud workgroup. Its global direct-to-cloud medical IoT infrastructure radically simplifies the integration of Patient Generated Health Data into clinical systems. It combines the best of global tech for anonymous device data with the best of healthcare privacy for sensitive patient data. By abstracting hardware complexity and diversity in the home of the patient, Medisanté allows Remote Patient Monitoring to scale anywhere in the world. Its cellular devices and cloud-based hub – ELIOT Hub – abstract physicians from the complexity of devices and allow them to focus on achieving better medical outcomes for remote patients within their existing clinical systems. It also allows bio-medical engineers to manage remotely the device fleet across multiple types of devices as they would normally do within the hospital.

About Pryv:  pryv.gihub.io/www

Pryv makes health personal data processing as secure and trustworthy as online banking. We help organizations manage personal data from creation through use and sharing, as well as address the enhanced data subject rights under GDPR such as transparency, portability, and right-to-be-forgotten. Our solution, pryv.io, is an extensible personal data lifecycle management platform specifically engineered to empower developers to rapidly create and scale breakthrough GDPR and HIPAA compliant products, services, and experiences. The software has been developed to accommodate rapid integration. It comes with turnkey IoT connectivity, a secure storage vault, fine-grained consent management, and comprehensive auditing capability that radically cut IT development costs and accelerate time-to-benefit while addressing the most stringent data protection requirements.

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Dr. Damian Meli, Project lead at umana, said: “This partnership represents a further step in umana’s journey to building the most user-centric patient-doctor communication tool to be integrated with the Swiss Electronic Health Record system. Comprehensive data protection and compliance with data management regulations are essential to our development. We chose Pryv because they share our belief that the confidentiality and privacy of our users is a top priority. The integration of the pryv.io software is designed to meet the increasing demands from patients and regulating authorities for more transparent and trustworthy methods for the management of personal data.”

Pierre-Mikael Legris, CEO and co-founder of Pryv SA, said: “We are proud to have been chosen by umana. It shows that they are committed to the increasing value of digitized content in healthcare. By working with some of the world’s eHealth pioneers, like umana, Pyrv can accumulate reliable industry experience which we can deploy in our development and agile operating model. Not only has umana demonstrated that they value each patient, but they are also interested in building a relationship based on trust with them, which will surely foster more efficient digital communication between patients and healthcare providers.”   

Pryv’s privacy-by-design approach promotes privacy and data protection compliance to guide patients’ data security decisions throughout their experience with a tool such as umana. As healthcare organizations increasingly integrate personal data into their services and processes, they continuously encounter the challenges of compliance and the chances of a breach of private data. Unfortunately, the defense mechanisms are often added on to existing structures as an after-thought, or in some cases, ignored altogether despite the fact that they should be embedded into the foundation of the system.

As an eHealth platform, umana aims to connect service providers, such as doctors or pharmacists, with their patients. The solution will allow for appointment booking, direct messaging, medication plans and, in the future, Swiss EPD – all regulated via one access point. For patients, umana will allow them to book appointments and share vital parameters and personal information with doctors through web and smartphone applications. Thanks to Pryv, this transparent exchange of private information will be compliant with GDPR and Swiss DPA regulations.

About umana

umana is a new Swiss health platform that offers products and services for patients and doctors. As an international team of family doctors and engineers, we have used our expertise and creativity to reduce and optimize the wait time before a patient meets with their healthcare provider. The booking tool can be easily integrated into any practice and makes consultations more streamlined and more pleasant for patients. At umana, we harness the power of digitalization to create comprehensive, relevant and personalized health services.

www.umana.ch 1 min video of umana

About Pryv

Pryv makes health personal data processing as secure and trustworthy as online banking. We help organizations manage personal data from creation through use and sharing, as well as address the enhanced data subject rights under GDPR such as transparency, portability and right-to-be-forgotten.  Our solution, pryv.io is an extensible personal data lifecycle management platform specifically engineered to empower developers to rapidly create and scale breakthrough GDPR and HIPAA compliant products, services and experiences. The software has been developed to accommodate rapid integration. It comes with turnkey IoT connectivity, a secure storage vault, fine-grained consent management and comprehensive auditing capability that radically cut IT development costs and accelerate time-to-benefit while addressing the most stringent data protection requirements.

pryv.gihub.io/www

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