[ Joint press release ]
Developing a patient-centered, real-world dataset for cancer research
Andaman7 and OncologyInformationService ( O.I.s) ) announce a partnership to achieve a major advance in developing a patient-centered, real-world dataset for cancer research. The partnership will provide new insights by combining clinical real-world data with patient experience data to achieve Real World Evidence (RWE) across Europe.
Andaman7 and O.I.s), together with Clinerion Ltd., are building in partnership a holistic view of cancer treatment by combining the Andaman7 patient app, the O.I.s) RWE platforms and Clinerion’s Patient Network Explorer (PNEx). The partnership will begin with multiple myeloma, where O.I.s) has established a RWD database, TherapyMonitor, with more than 5,000 longitudinal treatment courses from more than 200 institutions, since 2016. TherapyMonitor is based on an approved methodology accepted by European health technology assessment (HTA) authorities. The new platform will connect this unique RWE source with patient-reported disease and treatment experience in daily life through the Andaman7 app. PNEx will allow query of anonymized patient data among Clinerion’s worldwide network of partner hospitals and PNEx technology will be used as the platform to query all the partners’ databases, taking advantage of its fast data collection and real-time update capability. This will enable the partners to address patients globally and generate real-world data based on EMR. In a next step, the partnership will then expand into other forms of cancer.
For the full overview of the Andaman7/Clinerion/O.I.s) ecosystem of partners and processes, please see the attached graphic:
According to Lenka Kellermann, CEO and Founder of O.I.s), “Patient engagement must be a cornerstone of quality of care. The work of Ethan Basch, MD, has shown that the mere act of having a patient self-report on their care improves outcomes. These same self-reporting applications, developed by Andaman7, engage patients in their care and are also great research tools to see what really works for patients, creating RWE. We have established a collaborative group with leading hematologists/oncologists and patient advocacy groups in order to optimize the tool for specific cancer types in Europe. A recent survey among multiple myeloma patients disclosed a high unmet need for supporting communication with the physician in order to tackle daily disease-related discomfort. Patients appreciate having access to their own clinical data as a cornerstone of mutual trust. Almost all of them would share their anonymized data with specified research organizations.”
“In addition, Andaman7 is a great partner for Europe-based research because their tool is fully GDPR compliant and available in more than 20 languages. The most convincing topic for O.I.s) is the data ownership by the patients themselves and the option for patients to manage their entire health record on a mobile device, with no storage in the cloud, for the highest privacy and security. Andaman7 allows patients to decide who can access each respective item and keeps the data anonymous,” continued Kellermann.
Vincent Keunen, CEO and Founder of Andaman7, added: “Both O.I.s) and Andaman7 are dedicated to enhancing patient literacy and making self-care and communication more intuitive and easier for patients, while also becoming more accessible for oncology research. O.I.s) has shown tremendous benefits for multiple myeloma patients across Europe, bringing together patients, physicians and researchers into an ecosystem designed to improve outcomes and experiences. We are incredibly proud to have our app selected by O.I.s) to help expand the view of the patient experience for clinical research, globally. It’s a testament to the hard work of our team, and a great honor."
Since O.I.s) was founded in 1993, the idea was to dig down into complex real world data in oncology and hematology to analyze treatment algorithms and adherence to the clinical guidelines. It is our major objective to achieve a holistic view on cancer care. Therefore, we believe the patient reported experience should serve as a common thread of understanding between patient advocacy groups, oncologists and hematologists, research centers and pharmaceutical companies.
More information may be obtained at https://www.oncologyinformationservice.com
Andaman7 was founded in 2014 and offers an advanced technology combining mobile apps for patients and a platform to collect data allowing continuity of care for care stakeholders (hospitals, doctors, nurses, etc.) and research. The mobile app Andaman7 is available in 20+ languages and is currently being used by more than 25,000 patients, spread over more than 30 countries. Without storing data in the cloud (peerto-peer architecture), the app allows patients to manage all their health data in a personal health record on iOS and Android mobile devices and a HIP™ (Health Intermediation Platform) which is designed to support patient data exchange and collection.