The Center for Data Innovation spoke with Vincent Keunen, chief executive officer and founder of Andaman7, an eHealth company based in Belgium that provides patients with a tool to manage their health information on their smartphone. Keunen discussed how Andaman7’s platform drives efficiency in healthcare services and facilitates communication between patients, hospitals, and researchers.
Eline Chivot: What led you to create Andaman7, and where does the name come from?
Vincent Keunen: I’m a software engineer by training and I developed healthcare projects for the most part of my career. In 2007, I was diagnosed with blood cancer—CML or chronic myeloid leukemia—but I was fortunate enough to benefit from an extremely efficient treatment with Gleevec. Before this medication had been made available, life expectancy for patients was about two months to maximum two years, so this disease really used to be a death sentence. Gleevec is life-changing, it comes with almost no side effects, and life expectancy of patients who respond to this treatment (95 percent!) reverts back to normal.
Unfortunately, three months after I was diagnosed with leukemia, my 10-year-old son Pierre was also diagnosed, but with a more serious form of cancer—a bone cancer. He received a tough chemotherapy, radiotherapy, and then a bone marrow transplant, and although doctors said things were looking good, they needed to amputate him to avoid the risk of relapse post-transplant. Today he is 23 years old, he walks with a prosthesis, but the outcomes of his diseases have been more problematic than mine. We are two cancer survivors from the same family: One with almost no side effects or long-term impacts, the other with a terrible experience and consequences for the rest of his life.
This is what motivated me to create Andaman7 back in 2014, with two main goals for patients. First, if we could contribute to research and find efficient drugs such as Gleevec for other diseases, this would spare patients difficult experiences like the one my son went through. Second, the idea was to enable patients to be in control of their health data. As a family we had a hard time going through these events, notably because we didn’t have much access to information. Yet this is important for many good reasons, such as when one needs to ask for a second opinion, to be informed, or to follow a treatment. The lack of access to this data is also problematic for doctors, to have the right information at the right time, between departments of a hospital it is difficult, even more going from one hospital to another, and let’s not even mention across countries.
Being a patient, it was important for me to have privacy. So I created Andaman7 to store data on the patient’s smartphone only, not in the cloud or on a server. No company, no one can have access to the data, except the patient. This approach is different from most other actors in that it is all for the benefit of patients and it’s strictly privacy-based.
Andaman is an archipelago in India that is completely isolated from the modern world, and is—according to Wikipedia—the last place on Earth where the population—primitive tribes—does not want to have any contact with the modern world. I chose that part of the company’s name to show that the medical sector’s own isolation and the lack of communication between its actors. Of course there are security and privacy issues, but this shouldn’t be an excuse when a more efficient exchange of data is needed to achieve what healthcare is for: Curing patients. ‘Seven’ has two meanings. Health Level Seven or HL7 is a protocol, a set of international standards for transfer of clinical data, used by healthcare providers—so this represents the opposite of silos and isolation—and 2007 is the year my son and I were diagnosed so it coincides with our personal story. Hence the name, Andaman7.
Chivot: How does your platform work? What kinds of technology does it use, and what purpose does it serve?
Keunen: We use all the advanced technologies available to develop mobile applications for both iPhone and Android. Our exchange platform allows patients to exchange data with other people they select and is also based on advanced technology and security mechanisms.
This data includes medical data from doctors, hospitals, and labs, such as allergies, drugs, vaccines, past and current conditions, lab test results and much more. It also includes health data in general, which is much broader and includes nutrition, sleep, and activity data—for example the number of hours of sleep, sleep quality, the number of steps, nutriments, vitamins… It isn’t considered as pure medical data, but is becoming more and more important in order to have a holistic and real world view of the patient.
To exchange data, we use a peer-to-peer architecture for this platform, which means there is no cloud storage of the data. Of course, when I share health records with my wife, the data goes through the Internet, but when this data lands on her smartphone, it is deleted from there and remains only locally stored on the smartphone.
It was a challenge to set this up, because as data travels to many directions, this architecture must ensure the data is up-to-date on the various locations it is sent to: on my phone, on my wife’s phone, but also, if shared with a doctor, on his or her own platform. But it was worth it, because now our levels of privacy and security are extremely high. Medical data stored in the cloud by other solutions is at risk of hacking. Our system has been built to be secure by design because there is no place centralizing all the data. If someone hacks my phone, this would only give access to my own records, and not anybody else’s, which is not interesting in itself for hackers, who typically would aim to access hundreds of thousands of accounts. Our system is also privacy compliant by default—because no data is shared with no one unless a patient decides and chooses to do so. There is no collection or exchange of data unless patients take that action explicitly.
We also act as a health intermediary by offering companies clinical trials for research purposes. In that case, we send their questionnaire to patients, who then know exactly what data they will share and why. So this exchange of information remains extremely controlled as well.
There is a significant change happening in medical research. It is now called RWE or real-world evidence and touches pharmaceutical companies, companies building medical devices, hospitals doing research, and research organizations. Previously, institutions such as the European Medicines Agency (EMA), the Food and Drugs Administration in the United States (FDA), and other equivalents would require clinical evidence. This would mainly involve doctors to approve or to reimburse medication, or to carry out research. Today, they require real-world evidence, such as patient-reported outcomes, in addition to clinical evidence, which means they want to know what happens with patients in the real world—are they satisfied with a treatment, are they experiencing any side effects, has the treatment improved their lives, which medication works better or has less side effects than another?
With the rise of chronic diseases, taking quality of life into consideration has become more important, and so for the research industry, collecting direct feedback from patients has therefore become more important. Indeed, we can cure about 50 percent of all cancers today. That’s a major improvement but this also means that many more people do and will live with cancer, or with cancer as part of their medical history with a risk of relapse. I still have cancer, as it is a chronic type of disease: My medication does not cure it, for the rest of my life I will take Gleevec and blood tests every three months. This is the same for other chronic diseases such as diabetes or heart disease. Hence, Andaman7’s secure and privacy-minded services are very relevant and helpful to enable this shift from research based on pure clinical evidence to research combining medical evidence and real-world evidence from patients.
Chivot: Could you give a concrete example of how Andaman7 benefits patients and healthcare practitioners?
Keunen: Andaman7 improves care and offers better disease management, simplifies a patient’s experience, and ensures an efficient process. A few months ago I was feeling extremely tired, so I decided to see an endocrinologist to see whether that was related to my thyroid, as fatigue can result from a decrease in thyroid hormone production. The doctor asked me a few questions for 15 minutes, after which she suggested the next steps to be a blood test, and then a second consultation to discuss the results. But as I have leukemia and must do blood tests regularly, there was no point in taking another test. Of course, she did not have access to my regular blood test results… But with Andaman7 on my phone, I was able to show her the results of the latest one, immediately. She took a look and was able to tell me that there was no problem with my thyroid. So as a patient, I didn’t have to go through the painful process of yet another blood test, I didn’t have to go to yet another consultation, and my concerns were alleviated by an immediate assessment. This is much more efficient and cheaper for the healthcare system and its practitioners as well: Instead of one more blood test and two consultations, my consumption of healthcare services amounted to just one consultation.
Another example of a concrete benefit is, for instance, what happens when you are on a holiday with your family, and fall ill or have an accident. Typically you will not be able to remember everything about your allergies, the vaccines you have had, any of your previous health conditions, or information you have heard during previous consultations with a doctor.
Andaman7 is this tool that helps you easily keep and carry your health data with you. In case you must see a doctor for the first time in another country or another region, this doctor will have limited information about your health history even based on what you will be able to share then. With Andaman7 you do not have to make this effort to try and remember everything, you can simply show that history.
This is helpful as well when asking for a second opinion. Studies suggest that after a consultation, patients will remember an extremely small percentage of what a doctor has told them, because—and especially if this is bad news—they find themselves in a high-stress situation and do not register everything. They then lose a large part of the information and will not be able to share it with another practitioner.
Chivot: As a social project, Andaman7 is freely available to patients and health professionals. How do you plan to ensure the sustainability of this business model?
Keunen: When I created Andaman7, I wanted this project to have a social goal—which is to focus on the patient: It’s free and will always be free. Already today, whoever wants to download it on his or her smartphone can use it at no cost. But indeed, a sustainable source of revenue is crucial to guarantee a salary to our team of 12 experts, and to continue to provide a free service as our company’s main purpose.
One source of revenue comes from the research industry, for instance pharmaceutical companies. As mentioned, it needs to collect more real-world evidence, but in Europe its researchers are not allowed to have direct contact with patients or access to their identity, to avoid commercial or advertising practices. These companies are therefore interested in working with partners like us. We work based on paid projects, to send questionnaires to patients, anonymize their answers, and send aggregated results back to the team leading the research for industry.
In Europe, the remote monitoring of patients by hospitals and healthcare practitioners in general will increasingly become part of the follow up and the reimbursement of healthcare costs. Staying at a hospital is just as costly as staying in a five-star hotel—around €700 per night. As a result, there is a push to reduce the duration of hospital stays and send patients home sooner to alleviate the financial burden on our social security systems in Europe and taxpayers or insurance companies in other areas. This means that the continuity of care outside healthcare facilities will become ever more important, for instance to avoid relapse or anticipate complication, but also because of the increasing number of chronically ill patients, whose treatments can be done at home. Hospitals will likely be interested in systems like ours that enable remote patient monitoring and telemedicine.
Chivot: One difficulty in the healthcare sector is that there are many data silos in healthcare. Can you explain why this is an obstacle to the development of solutions like yours? How did you address this challenge?
Keunen: There are two key efficiency challenges in terms of interoperability for health data: The exchange of data, and its storage.
Medical health information is very diverse and complex. Diverse, because it includes simple data such as numbers, text data, images, and even electro sounds. Complex, because, for example, images can be heavy in terms of megabytes, and text cannot be processed by a computer in its pure form so it must be codified, transformed into a structured format (with codification systems such as LOINC, Snomed, etc.).
Another difficulty is that hospitals and the research industry do not use the same tools or standards for reporting or sharing data. Hospitals use tools such as electronic health records (EHR) and standards such as HL7, FHIR, LOINC, or Snomed. The research industry uses tools such as electronic data capture (EDC) and different standards such as CDISC and ODM. Although these two parties are talking about and processing the same information, such as vital parameters, conditions, drugs, allergies, etc., they speak a different language in that they use completely different tools and standards. We created an unusual and innovative data model that allows us to store any kind of data but which can be mapped to both of these systems, for both the care and the research sides. And we store more than just medical data from hospitals and doctors: We also store health data in general. In this respect, our data model is extremely advanced, and in some ways much more than that of many hospital systems.
Interoperability has been a huge problem in the last 25 years and still is today, everywhere in the world. Things have been moving faster in the United States in the last two years due to recent changes—an agreement among vendors on the fast healthcare interoperable resource (FHIR) protocol. Indeed, by law, if U.S. hospitals want to be reimbursed, they are obliged to use software that uses an FHIR application programming interface (API). All software vendors were then more or less incentivized to implement that API. This has led to the development of many startups, solving the problem of interoperability, and enabling a much more efficient and a faster exchange of data. We certainly do hope that Europe and other parts of the world will enforce the use of FHIR by all actors.
Andaman7 is compatible with hundreds of hospitals in the United States, where we cover 85 percent of the population. This means that 85 percent of Americans can install our app, connect to their hospital, and have their data stored locally on their phone. In Europe we’re only compatible with a few hospitals and labs as, unfortunately, we do not have common healthcare Internet standards. European countries are moving extremely slowly in this direction.