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Opening Ethical Access to Medical Data for Public Good

Opening Ethical Access to Medical Data for Public Good
Ecosystem News

Global healthcare company Novartis and the Polish Donate Your Data Foundation are announcing a partnerships that aims to prove that medical innovation can co-exist alongside the fundamental rights to privacy and the self-determination of patients when it comes to their medical data. It also marks a new era of patient-centric medical research in which patients are equal stakeholders, and are being empowered to make decisions regarding their most sensitive data sets.

Data is one of the cornerstones of clinical trials, medical research, and AI development and is playing an increasingly critical role in shaping the future of healthcare. It’s also becoming more and more crucial in identifying potential new therapies, as well as understanding how existing treatments can be improved. Medical research both requires and generates vast amounts of data, all of which has the potential to provide insights into the efficacy and safety of new treatments and improve patient outcomes.

Recognizing the growing importance of objective, representative medical data, as well as the need to take into account the interests and rights of patients in data acquisition, Novartis and Fundacja Podaruj Dane have established a partnership to promote the use of medical data in the data donation model. The data is obtained only for research and development purposes, with full respect for the patient’s rights and with the highest ethical and technological standards. The partnership provides for the provision of reports based on anonymous data.

The partnership between Novartis and the Podaruj Data Foundation is a result of the growing role that objective, reliable medical data plays in medical research and healthcare. Until recently, there was no easy, ethical and legal way to access EU citizens’ medical data, which was an obstacle to the development of healthcare innovation. The solution may be access to data based on the patient’s informed, voluntary consent. This model of data altruism is also promoted by the European Commission in the new Data Governance Act regulation, which enters into force in September 2023.

The Donate Your Data Foundation (Fundacja Podaruj Dane) is a non-profit organization that aims to advance medical science and improve patient outcomes by providing access to consent-based, anonymized data for research. Along with 30+ other organizations, the Foundation has built a global data donation system (Global Medical Data Donation | Donate Your Data). The Foundation is a pioneer in developing an organizational and technological framework for the idea of data donation. It is based on a technological system that allows patients to easily grant or withdraw consent to the use of their medical data. Such a change can be made in person, at a healthcare facility, or online. The data donation platform was created in accordance with EU and Polish regulations on data protection and patient privacy. It is also monitored on an ongoing basis by patient organizations that care about the patient’s interests and rights.

We are pleased to welcome Novartis to the data donation system. By providing objective, real-world data on patients’ treatment pathways, we hope to help Novartis discover new ways to optimize therapy and accelerate the development of innovative pro-patient solutions.” says Dr Ligia Kornowska, President of Podaruj Dane. “We are convinced that privacy and innovation can coexist, and our system is proof of this. Not only are we breaking medical data silos, but we are also taking the first step in building social acceptance of the wide and ethical use of medical data. This is crucial not only for clinical trials, but also for all upcoming technological advances in medicine.” 

The team behind the Foundation realizes that the democratization of medical data will play a key role in promoting research and development in health care. Therefore, it also works with individual researchers, smaller companies, and research units that may not have the budget to work with large data sets. By democratizing access to data, the Foundation strives to ensure equal access to innovation-based healthcare around the world.

Novartis is a global healthcare company that is reimagining medicine to improve and prolong people’s lives. As a leading global pharmaceutical company, they use modern scientific and digital technologies to provide innovative therapies that respond to significant medical needs. Their mission to search for new drugs makes them consistently one of the leading companies in terms of investment in research and development, and they will bring their extensive experience in the research and development of medicines to the collaboration.

At the heart of our activities is the desire to improve patient treatment outcomes and their quality of life,” says Monique Clua Braun, Country President Novartis Poland. “We believe that increasing patient involvement in all aspects of healthcare will result in better processes, better treatments and better outcomes for patients around the world. The involvement of patients and their consent is extremely important to us, and the implementation of the study in accordance with the idea of ​​data donation ensures that it is compliant with national and EU regulations, as well as with patients’ rights. We hope that thanks to this cooperation we will lead to significant progress in healthcare.” adds Monique Clua Brown.

Many in the healthcare field believe that a new era of personalized, patient-centric medicine is on the horizon. Medical research companies such as Novartis don’t view patients as “study subjects” who generate data for them, but as primary stakeholders who are informed, consulted, and key to the success of the trials.

Support for patient-centric and consent-based medical innovation has never been higher, with many pro-patient organizations joining and vocally supporting the movement. Amongst them is Ogólnopolska Federacja Onkologiczna – the Polish National Oncology Federation – one of the signatories of the Data Donation Manifesto.

As a patient advocacy organization, we believe that a consent-based approach to medical data donation is not just supporting evidence-based medicine, but is setting the global standard for pro-patient medical research. Through medical data donation, we believe that we can help accelerate the development of treatments and cures, ultimately improving the lives of patients everywhere.” says Dorota Korycinska, Board Director of Ogólnopolska Federacja Onkologiczna.

Patient organizations aren’t the only entities encouraging medical data donation and this type of ‘ethical innovation’ partnerships. There is also broad support from national and international organizations that represent healthcare providers. In Poland, one of the coordinators of this idea and co-creator of the Podaruj Dane Foundation is the Polish Hospital Federation, which is a member of the European and International Federation of Hospitals.

I am thrilled to see the first impacts on innovation through medical data donation in Poland, and proud to have Donate Your Data leading this effort in Europe. The sharing of medical data is crucial for the advancement of healthcare, and this initiative will undoubtedly accelerate progress in the field.” says Professor Federowski, President of the Polish Hospital Federation. “I applaud Donate Your Data’s dedication to making medical data flow more accessible, and transparent as well as their commitment to working with patients to ensure their data is used ethically and responsibly. This effort has the potential to benefit not just patients in Poland but around the world, and I look forward to seeing the positive outcome it will have on healthcare research and development.”    

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The partnership between Podaruj Dane and Novartis aims to further prove that medical innovation can co-exist alongside the fundamental rights to privacy and the self-determination of patients when it comes to their medical data. It also marks a new era of patient-centric medical research in which patients are equal stakeholders, and are being empowered to make decisions regarding their most sensitive data sets.

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