Those who know me personally remember that 2007 was a difficult year for our family. In March, I learned that I was suffering from leukaemia (blood cancer, CML — I was 43 years old) and just three months later, our son, Pierre, was diagnosed with Ewing sarcoma (bone cancer) at 10 years old. More information on his blog.
Today it is 2014, 7 years later, and we are both here and in good health. Pierre lost a leg (he was amputated below the knee) and every day I take a magic pill called Gleevec. We are, therefore, both survivors of cancer. This shows how modern medicine is truly of excellent quality, and is continuing to improve quickly.
However, during Pierre’s treatment (it lasted one year, which involved many doctors and several hospitals) I have seen how the information management was truly terrible, in comparison of private companies, for example (and we’re not talking about ISO quality standards…). Being myself a software engineer, I was particularly concerned with the lack of quality in the handling of information; I even felt a little responsible for it. In fact, I have participated in various large medical IT projects: secure medical messaging systems meXi and Medibridge in Belgium (15,000 physicians, hospitals, and laboratories) and a large medical/prevention records system for Idewe, managing more than 400,000 workers. Despite all of this, information in the medical world seems significantly behind.
Therefore, I decided to turn my little stone into a building by starting a new project: Andaman7.
During Pierre’s year of treatment, here are the main problems that we came across:
- Many medical dossiers are still in the form of print, so:
- It is almost impossible to transmit them, either between a hospital and a generalist, or simply to another hospital
- There is a significant risk of loss—who is making backup copies of paper?
- It is almost impossible to find information quickly—who has time to seek a sheet from a pile of 500 papers? Surely not a doctor, often overworked.
- When I accompanied Pierre to another hospital, 100 km from our original hospital (because only this one had the x-ray therapy for children), the doctors in this hospital had almost no information about Pierre… In the same aspect, the information that I had received at this hospital could not be easily recorded or passed on to our original physicians (our oncologist, our general doctor). If I could have had one copy of Pierre’s medical file to transmit it, and the ability to add some notes… Of course I am no doctor, but I am capable of writing down what a doctor has told me to pass it on.
- When I went to ask for a second opinion in Paris, our excellent oncologist (Dr. Claire Hoyoux) was very helpful and open, and even assembled an extract of the dossier for Paris. This really helped confirm the diagnosis, but at the price of extra work for her. If Pierre’s dossier (or a portion of it) had been able to be transmitted, everyone could have saved valuable time.
- On the eve of Pierre’s amputation, a doctor had to prepare the operation. Not having access to the file, he asked Pierre if his last blood test had been good… On the eve of a “small” operation such as an amputation, it seems to me that asking this kind of question to a 10 year old child was a little light. With the chemotherapy and all, it was important to know whether his coagulation was normal (among other things)—but this doctor had no access to the information.
The idea of the project is, therefore, to improve the storage of medical information and facilitate access and sharing, while preserving confidentiality. This last point is extremely important to me, obviously, but not enough to harm the quality of care, of course. ;-)
The objectives of the project are as follows:
- Benefit from the wave of mobile devices (tablets and smartphones) that allow much more user-friendly information: touchscreen interface, mobility, voice commands and dictation, excellent communication skills…
- Allow patients to participate in their own healing: patient involvement is desired by modern doctors, and by a number of “informed” patients—it simply improves the quality of care, several scientific studies prove it.
- Allow physicians to share data between themselves in a simple but secure and traceable manner: hospitals, exchanges between specialists and general doctors, exchanges between physicians and other people such as home nurses, physiotherapists,…
- Allow the patient access to his file and the ability to complete it with supplementary information: medication side effects, documents and information provided by other doctors…
- Allow the patient to keep a copy of the file: for trips abroad, to follow his/her vaccinations, to share children files between separated parents, to gather important documents…
Andaman7 therefore consists of a combination of two mobile applications. One for the doctor, to manage all patient records. The other for the patient, allowing him to manage his own medical record (and possibly that of his children or elderly parents). No medical information resides on servers (nothing in the cloud)—all will be retained on mobile devices. This avoids the “big brother problem,” threats on medical confidentiality (employers, insurers…) and greatly reduces the risks associated with data security. No data is shared by default. Everyone is free to share or not to share a part or all of the data it manages. No one will be forced to receive other people’s data (requires a prior acceptance). Everyone is responsible to comply with the rules of their country and to the requirements of their local order of physicians.
The application is free and will always remain so for both physicians and patients. We will fund the operating costs by very unobtrusive ads and maybe specific paying modules.
So, no obligation, but modern and secure technologies for those who want to advance in medicine of the twentieth…um, of the twenty-first century. :-)
If you want to participate in this (r)evolution, join us at www.andaman7.com. Install the application and tell us what you think. We are open to any and all suggestions.
A few press articles on Andaman7 : http://bit.ly/a7allPress
TEDx Liège video : http://bit.ly/tedxvk