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Andaman7: Pioneering Patient Mediated Research

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(English below – Version française de ce texte ici)

(Presentation of Andaman7, video, 2.5 minutes: http://bit.ly/A7videoWhatis (English))

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 (a blood cancer).  I was 43 years old. Only 3 months later, our son, Pierre, was diagnosed with Ewing sarcoma (a bone cancer). He was 10 years old.

Today, years later, we are both alive 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 cancer survivors. This shows how modern medicine is truly of excellent quality, and is continuing to improve quickly.

Pierre, ages 14 and 19

Before Gleevec, patients with CML like me would have a few months to 2 years life expectancy at most. So learning that diagnosis was a death sentence.  With Gleevec, the life expectancy is reverted back to normal values. Thank you Novartis!

There is a big difference between our two cancers.  Mine was very easy to cure – one pill per day, for the rest of my life – but Pierre went through 2 very difficult years of treatment, and his leg is lost forever…

Therefore, I don’t need to tell you how important it is, and how motivated I am, to contribute to research and help the pharmaceutical and medical devices industry work faster and cheaper. And this will be even more important for rare diseases for which the cost of development is high compared to expected revenue.  With a pill for Ewing sarcoma, my son would still have his 2 legs…

Pierre and I, family holiday, 2014

Pierre and Vincent, family holiday, 2014

There were other problems we faced too, as patients or caregivers.

During Pierre’s treatment, which involved many doctors and several hospitals, I witnessed first hand how difficult the health information management was. Being myself a software engineer, I was particularly concerned with the lack of quality in the handling of information; I even felt a little bit responsible for it. In fact, I have participated in various large health IT projects: secure medical messaging systems meXi and Medibridge in Belgium (15 000 physicians, hospitals, and laboratories) and a large prevention EHR system for Idewe, managing close to 1 million workers’ health.  Despite all of this, information management in the health sector is still significantly behind.

And finally, for patients, it’s very difficult to have access to their health data.  And it is of the utmost importance. Numerous studies show that the efficacy of treatments is improved with more patient empowerment.

Therefore, I decided to contribute to these unmet needs with Andaman7.  We created a very ambitious platform to ease the communication between patients and actors of the health sector – it’s a project by patients for patients.

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We want to contribute in 3 ways:

  1. Empowering patients: every patient should have access to all their health data
  2. Helping research: offering PRO (Patient Reported Outcomes), RWE (Real World Evidence), questionnaires for clinical trials…
  3. Helping care actors: facilitating home care, remote monitoring of patients, etc.

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Andaman7 is first a social project: any patient can install the app today on their mobile device and start managing their health data.  The app is free and will always be. Download it from our website: https://www.andaman7.com.  It both is very safe and completely respects our privacy as patients.  No health data is stored on the cloud, and Andaman7, the company, does not have access to your data – everything is on your smartphone.

And we want the project to be sustainable.  So we are asking for financial contributions from pharmaceutical companies and medical device manufacturers for PRO, RWE, trials, questionnaires… and from hospitals and care actors for remote monitoring, home care,…

Vincent Keunen, Health 2.0 and TEDx conferences

If you want to participate in this (r)evolution, join us at www.andaman7.com. Install the application and tell me what you think (vincent.keunen@andaman7.com). We are open to any and all suggestions.

Thank you!

Vincent Keunen

Other links:

Andaman7 – Lorsque médecins et patients collaborent…

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(English version of this post here)

Ceux qui me connaissent à titre privé se rappellent que 2007 fut une année difficile pour notre famille. En mars, j’apprenais que j’étais atteint d’une leucémie (cancer du sang). J’avais 43 ans.  A peine 3 mois plus tard, notre fils Pierre était diagnostiqué d’un sarcome d’Ewing (cancer des os). Il avait 10 ans.

Aujourd’hui, des années plus tard, nous sommes tous les deux là et en bonne santé. Pierre a perdu une jambe (il a été amputé sous le genou) et je prends chaque jour une pilule magique: le Glivec. Nous sommes donc deux survivants du cancer.  Ce qui montre à quel point notre médecine est d’excellente qualité – et elle continue à progresser à grande vitesse.

Pierre à l’âge de 14 et 19 ans

Avant l’existence du Glivec, les patients atteints d’une leucémie comme moi (LMC) avaient une espérance de vie de quelques mois à deux ans maximum.  Depuis le Glivec, l’espérance de vie est revenue à la normale. Merci Novartis!

Cela fait donc une grande différence entre le cancer de Pierre et le mien. Ma leucémie est “facile à soigner” – une pilule par jour, pour le reste de mes jours – mais Pierre, lui, a dû passer par deux ans de traitements lourds, et sa jambe est perdue à tout jamais.

Inutile donc de vous dire à quel point je trouve essentiel de contribuer à la recherche médicale en aidant les sociétés pharmaceutiques et les fabricants d’appareils médicaux à innover plus vite et pour des coûts moindres.  Ce sera d’autant plus important pour les maladies rares, pour lesquelles le coût de la recherche est élevé comparé aux espoirs de retours financiers.  S’il existait une pilule magique pour le sarcome d’Ewing, mon fils aurait toujours ses deux jambes…

Pierre and I, family holiday, 2014

Pierre et Vincent, vacances en famille, 2014

En tant que patients ou aidants proches, nous avons aussi rencontré d’autres problèmes.

Pendant le traitement de Pierre, de nombreux médecins et hopitaux sont intervenus.  J’ai pu constater à quel point la gestion de l’information était difficile. Étant moi-même informaticien, je me sentais particulièrement concerné – et peut-être un peu responsable?  En effet, j’ai participé à divers projets d’informatique médicale d’ampleur: les messageries médicales meXi et Medibridge en Belgique (15.000 médecins, hôpitaux et laboratoires d’analyse), ainsi que le dossier médical de prévention de Idewe, gérant la santé de plus d’un million de travailleurs. Malgré cela, l’informatique du monde médical me semble significativement à la traîne.

Enfin, il reste très difficile pour les patients d’avoir accès à leurs données médicales. Or c’est un droit, mais c’est aussi très important. De nombreuses études montrent que l’efficacité des traitements est améliorée quand le patient comprend et participe.

J’ai donc décidé d’apporter ma pierre à l’édifice en démarrant un nouveau projet: Andaman7.  Il s’agit d’une ambitieuse plateforme pour faciliter l’interaction entre les patients et les acteurs du monde de la santé – c’est un projet par des patients, pour des patients.

Nous contribuons aux problèmes mentionnés plus haut de 3 manières:

  1. L’empouvoirment du patient: chaque patient doit avoir accès à toutes ses données de santé
  2. L’aide à la recherche médicale: nous offrons des outils pour les études cliniques, les études en vie réelle, des questionnaires patients,…
  3. L’aide aux acteurs de soins: nous facilitons le suivi du patient à domicile, la surveillance à distance, PREM, PROM, etc.

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Avant tout, Andaman7 est un projet social: chaque patient peut installer l’application et commencer à gérer sa santé.  L’application est gratuite et le restera toujours. Vous pouvez l’installer à partir de notre site web: https://www.andaman7.com.  Andaman7 est à la fois sûre et respecte intégralement la vie privée.  Aucune donnée médicale n’est stockée dans le cloud. La société Andaman7 n’a accès à aucune de vos données.  Toutes les données sont sur votre smartphone.

Mais nous voulons que le projet soit durable.  Pour le financer, nous demandons une contribution financière aux sociétés pharmaceutiques et aux fabricants d’appareils médicaux afin de réaliser des enquêtes de suivi, des études cliniques, des études en vie réelle, etc.  Aux hôpitaux, nous demandons une contribution pour les projets de suivi à domicile, de télémédecine,…

Vincent Keunen, orateur aux conférences Health 2.0 et TEDx

Si vous voulez participer à cette (r)évolution, rejoignez-nous sur www.andaman7.com. Installez l’application et dites-moi ce que vous en pensez (vincent.keunen@andaman7.com).  Nous sommes ouverts à toutes les suggestions.

Merci!

Vincent Keunen

Autres liens:

Article mis à jour en décembre 2018.

Uber bravo !

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First Uber experience: wow!

This is my first Über experience and I must say I’ve been *very* impressed!

I installed the app – it’s straightforward and the app is well designed and very easy to use. I entered my personal info, including PayPal and credit card payment details.

When I tried Uber, I was in Montreal – and I don’t know Montreal so finding a bus, subway or even a taxi was not obvious.  I fired up the app. It found my location (a great apartment rented via AirBNB – another great and disruptive tool which I recommend, by the way).  So I didn’t have to explain where I was… (1)

I entered my destination. Über displayed the cars in my area: there were a few. I confirmed my request. A few seconds later, it was accepted: I was informed that I would be picked up by a driver named Bolivar in 3 minutes!… (2)

On the map, I could see my driver approaching: good to stay inside while waiting (3) – Montreal is cold at this time of the year… 🙂

The car was there on time and when I opened the door, I was greeted by a warm “Good morning Vincent”!… (4) Yes, the driver knew my first name via Über… Cool! So I replied “Good morning Bolivar “… Felt almost like old friends…

I knew Bolivar was a serious driver: he was rated 4.5 stars out of a max of 5. (5)

We chatted:

  • Bolivar has been an Über driver for 3 months
  • He likes the system but there are more and more drivers so he has less business…  Market laws in effect…
  • He is also a bit frustrated because he does not know why he sometimes does not get a 5 star.  🙂
  • He also told me that, unlike taxi drivers that take “people on the street”, he only carries identified people (Uber identifies all passengers and all drivers thru email and credit card) – a much appreciated extra security for him, and for me.  (6)

It was also very clear from our discussion that Bolivar was extremely interested in my satisfaction…  (7) The number of stars I would give him was important to him.  Quite a difference with many taxi drivers that just don’t care about you because, “anyway, I won’t see that stranger anymore”.  The benefits of being evaluated and in a public and trustable system: extra motivation to do good.  And it was fair too: as a customer I would also be evaluated by my driver…  (8) So both parties do have an interest in behaving correctly, being polite, being honest.  This is the benefit of local communities where everyone knows everyone, but on a worldwide scale!  “Community of trust” has a real meaning here.

While driving, I could follow on my Uber GPS the roads that Bolivar was taking.  It felt good to know that he was taking the shortest / fastest road.  (9) With taxis, you never know what trick they will use to make the trip more expensive.  Besides my control, Uber also knows the number of kilometres and time of my ride.  So I’m pretty sure that they can make sure all drivers stay honest with a bit of statistics.

We arrived at destination.  I greeted my driver and hopped out of the car. No money involved! (10) My trip would be charged to my credit card.  No unexpected extras for you-never-what-your-taxi-driver-will-add (extra for late hour, extra for luggage, extra for blablabla…).  (11).  A few seconds later, I received all the details of the trip by email (12):

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Which makes it also easy to create a quick expense report if your company requires it – without the wait in the taxi for a driver that hates doing that.  (13) And by going to the web site, you can see all your previous trips… (14)

Update: Since that first trip with Uber, I travelled a few times more in Montreal, but also in Budapest. Always the same great experience.  And an extra benefit in Budapest: everything goes smooth even if you don’t know the local language and your driver is not too good in English! (15). Congratulations to Uber!  Keep up the good work!

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PS: I don’t want to make too big a deal of that, but in practice, Uber has completely changed the local transportation by car, and made it a much better experience.  Somehow, the world is a bit better without all those taxi problems…  Technology can indeed improve our ways of living.

(1) the numbers in parentheses in my text count the advantages of Uber over conventional taxis…  I’m aware that some mention also disadvantages but most of them are related to taxi companies loosing their privileges.  They will need to evolve.  The world is changing.  The world is improving.

My TEDx Liège talk – Open source in the medical sector

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You know I love open source software. You also know I have had cancer as well as my son Pierre:

Why can’t open source help with the discovery of new miracle drugs, like the one I’m taking for my leukemia: Gleevec ?

That’s the subject of my talk at TEDx Liège (in French – subtitles in other languages are coming – help translate):

Vincent Keunen - TEDx Liège - Open Source Rebirth

Vincent Keunen – TEDx Liège – Open Source Rebirth

Let me know what you think by commenting on this post or sending me an email at vincent@keunen.net.