It cannot be said that Vincent Keunen’s family have had it easy. In 2007, Vincent was diagnosed with leukaemia. Three months later doctors diagnosed his son Pierre with bone cancer.
Fortunately both are now in good health. Since then, Vincent has been taking a ‘magic’ pill, as he calls it, which guarantees normal life expectancy. Life is more complicated for Pierre as doctors were forced to amputate both his legs just under the knee. He was ten years old at the time.
Vincent is now familiar with the medical world. Every day he is grateful for the quality of the care he and his son have received.
“It is not difficult to understand why I want to contribute to medical research efforts. If there had been a magic pill for the Ewing sarcoma, my son would still have both his legs.” (Vincent Keunen, CEO of Andaman7)
Vincent and his family had other problems as patients and caring family members. The communication between the various healthcare providers requires centralized medical records for the patient, especially in case of serious illness and long durations of treatment as experienced by Vincent and his son. “Belgium has a long way to go before medical records are centralized. It is hard for patients to access their own medical data. This is, however, a right provided by legislation,” says Vincent Keunen. “Furthermore, many studies show that the efficiency of treatment improves when patients understand and actively participate in their treatment.”
The Andaman7 adventure begins...
Vincent believes that, despite all the large-scale projects in Belgium, the level of programming of the medical world seems to have fallen behind. As a programmer and a patient he feels committed to changing this. He established Andaman7, a start-up with a social goal alongside its corporate aim: ensuring all patients can manage their own medical records.
The biggest challenge of the exchange of information within the medical sector is the complexity of the data.
Treating physicians, specialists, laboratories, hospitals, etc. – every patient comes into contact with many parties who are each responsible for some of their health data and for the medical follow-up process. There are many sources of information are many and it seems to be complex to collect all the information in a single place. Vincent Keunen is convinced it should be easy to do so.
The Andaman7 principle is quite simple. Patients install the free app on their smartphone and start managing their healthcare information. The plan is to make sure the app is and remains free. The patient can enter all information on vaccinations, allergies, medical history, etc. If the hospital where the patient is treated is connected to Andaman7, all information, reports, images, analysis results, etc. are sent to the patient’s smartphone, transparently, safely and confidentially. Andaman7 does not store the data centrally (nothing in the cloud!) but makes sure the data is transferred from the hospital to the patient is encrypted to the same extent as the banks. If they wish, patients can share their medical data with anyone they like (treating physician, specialists, care providers, parents, friends, etc.).
In Belgium people seem to forget that medical records are the patient’s property
This is how it has worked at Liège University Hospital since September 2016: more than 3000 patients have decided to receive all their medical data on their smartphone. As part of the digitisation of the hospital’s medical records, patients received their full medical history. Every time they consult a physician or had a test, the patients automatically receive the results. Andaman7 has recently signed a similar contract with Les Laboratoires Réunis, a network of laboratories in Wallonia. Most hospitals are reticent despite these positive experiences. “This system will be ready to be rolled out when the medical world is ready”, says Vincent Keunen. “But the mindset of the sector is currently developing rather slowly.”
“People have to stop treating patients like small children. Giving patients control over their medical information is a sign of respect,” says Vincent Keunen.
Andaman7’s American Dream
Andaman7 is growing in the US, where many changes have taken place since the Obama government made it mandatory for all hospitals to provide patients with access to digital data on their health, as well as making it possible to share the information or make it available for research.
FHIR, Fast Healthcare Interoperability Resources, is the Andaman7 app compatible with IT systems in hundreds of hospitals in the US. Vincent Keunen: “In the US, people are open to changing the status quo regarding patient access to their records and are willing to move forwards. The medical sector in Belgium is not ready yet. 85% of patients are currently willing to share their medical data to assist with scientific research.”
Real World Evidence for better research
A mobile health app such as Andaman7, which is currently used by approximately 25,000 people in 35 countries and in more than 20 languages, gives each patient control over their data and their health. Andaman7 is also a platform for data exchange between all healthcare providers (hospitals, research centres, physicians, nurses, etc.). The goal is to include on the platform services that require interaction between providers in order to coordinate healthcare, improve its quality and to prevent risks to patient health where possible.
This platform gives patients the option to contribute to medical research by participating in clinical trials organized by hospitals and research centres such the EORTC (European Organisation for Research and Treatment of Cancer). “Patients who have consented to taking part in the study will receive the corresponding forms. The data collected is first anonymized on our platform, then forwarded for clinical analysis.” It is a paper-free solution, much faster than the traditional procedures. This results in an advantage that the collection of Real World Evidence (as opposed to Clinical Evidence), essential for research into medicinal products and medical devices.
Andaman7 has announced that they will be cooperating with O.I.s (Oncology Information Service), a German clinical research company. Vincent Keunen: “Together with partners such as Clinerion, a specialist in Real World Data solutions, we want to take a huge step forward in developing a database of real patients who are treated daily in clinical practices, to be used to help research projects. Connecting to our technology will mean that unique data can be generated to determine what really works and to improve the results and the experience of cancer patients.”
Feel free to contact Karlien Erauw for more information on Agoria’s work on eHealth interoperability standards. You can also register for the workshop on eHealth standard HL7 FHIR at our annual R&S event. Further information.
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