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:

Your health records in several languages? Not as easy as it sounds!

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Since the creation of the project, we decided to make Andaman7 available in several languages to maximize our users’ comfort. It seems only natural to manage your health in your native language.

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But having our app available in several languages is only a small part of the solution… The complete “medical content” should also be translated … and that’s where the troubles begin.

If the medical content is codified (meaning a user cannot write whatever she wants: she has to make a choice in a list of codes), it is possible to translate it automatically. As an example, let’s take simple fields like the “gender” field: the “female” word is stored as a code, and therefore is easily and automatically translated into other languages. For other fields, it gets less obvious.

One can codify all illnesses, symptoms, medications… based on existing codification systems. It would therefore be possible for other fields to be automatically translated but this would bring up 2 main problems:

  1. There are various medical coding standards (ICD, ICPC, SNOMED, LOINC …) but none of them has been unanimously chosen (yet)…making it complicated to commit to one of them.
  2. Making a majority of fields codified means less freedom for the users and a much heavier process to input their data than “free text” fields.

Nowadays, free translation tools are widely available and make an automatic translation process possible… but far from perfect. The inaccuracies of general translation systems like “Google translate” and others quickly make you realize that in a field such as health and medicine, you just can’t risk translation misinterpretations.

So, an immediate translation of all content of our app is not something we can offer right now. However, we think this could be the case in a near future, when technology will have made sufficient progress in that field.

Meanwhile, just being able to change the language of the application and translating the codified items is already useful. If you go in a country speaking a different language, you can change the language of Andaman7 before showing your medical file to a local doctor. Even if the contents are not all translated, having fields in their own language will allow the physicians to navigate a little better and understand at least partially the content (because from one language to another, there sometimes are similarities in the technical terms being used).

Managing medical data has always been hard. And translating even harder. But we’re making progress fast. Feel free to install Andaman7 (free on AppStore and Google Play) and tell us if we are doing a good job.

Our mission is “Contribute to the good health of every human being, all over the world”.

Vincent Keunen

Patient and entrepreneur
Founder and CEO of Andaman7
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When health technology leaders meet patient reality

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A few months ago, I read the terrible news that Bill McDermott, CEO of SAP, lost his eye in an accident at a friend’s party. Forced to spend time in hospital, he realized that information management has a lot of room for improvement. Learn more about his experience here: http://bits.blogs.nytimes.com/2015/11/01/sap-chief-mcdermott-embarks-on-health-care-push-after-losing-his-eye  
Like most patients, he really had a hard time. Medical Information Technology (IT) tools are just not up to the task. “There were digital files of M.R.I.s, data from my surgery in the trauma unit and scans from the emergency response team that never went into the my health record.” he said.

It was shocking to read his comments because it is exactly the same way that I felt when I spent a year in hospital in 2007 taking care of my young son diagnosed with bone cancer. The medical information that we needed, as a family, was difficult to manage, impossible to exchange, and the patient was never in the loop. Unfortunately, there haven’t been significant of improvements in nearly 10 years.

I immediately invited him to join me in the club of IT entrepreneurs turned patients that are dedicated to synchronizing health data for everyone.

Bill accepted my invitation! He found time in his busy schedule to have a truly human discussion with me. He suggested that I meet with Werner Eberhardt, the director of personal medicine in SAP’s Walldorf, Germany, Headquarters.

Werner Eberhardt, Michael Schaper, Frank Kilian and Stephan Schindewolf, and I had an important talk about SAP’s and Andaman7’s commitment and passion for developing software for healthcare, both for business reasons and purely helping people. We also discussed how the health sector is being disrupted, the great new possibilities for patient empowerment through health technology.

SAP is a very large company and I run Andaman7, a tiny startup. We’re worlds apart in size but closely aligned in our mission to contribute directly to improving and sharing data for better health.

Please help us realize our mission by becoming an Andaman7 member. The Andaman7 App is free and available at http://www.andaman7.com or in the App Store. Your ideas and feedback about your experience using our App will be used to make on-going improvements.

My thanks to SAP, Andaman7 Members, patients and health care providers who are working to realize better health for everyone.

Vincent Keunen, Andaman7 CEO

@andaman7  @vincentkeunen  @BillRMcDermott @sap @SAP_Healthcare @SAPDEHealthcare

Open Letter to SAP CEO Bill McDermott : Welcome to the club :-/

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Dear Mr McDermott,

I am very sorry for your recent eye accident. I just read several articles on various online publications about it. I particularly appreciate the way you manage that adverse event… “It’s important to stand back up again, if you fall down”. And you seem to wish to push SAP into more healthcare projects.  Good!

Welcome to the club, M McDermott… I am a 51 years old entrepreneur and 8 years ago, I was diagnosed with blood cancer (leukemia). And as you say: “I’m still alive.” I am very fortunate to be treated by a magical pill called Glivec, from Novartis.  The same year, 2007, my son Pierre, then 10 years old, was diagnosed with bone cancer.  Two cancers in the family, at 3 months interval.  No fun.  But he is also alive today.  He lost his leg to the cancer, but he’s still enjoying life, sports, friends… His whole story is at pierre.keunen.net

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Last year, I was fortunate enough to sell my software company Manex to Lampiris, one of the new green energy players in Belgium. Yes – we are neighbors Germany – Belgium.

So I decided last year to invest some of my money in a new, hopefully disruptive project to improve healthcare too.  Like you, when we were in hospitals for my son and I (more than one year in our case), I realized that there is still a lot of work to do to make sure doctors, patients, and all related health care practitioners have the right information at the right time – while still preserving privacy.

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So I used my expertise from 3 large scale successful projects in Belgium (in EHR and secure medical messaging) to build a new solution that I called Andaman7.  Andaman is an island that, according to wikipedia, was isolated from the rest of the world for a long time.  Pretty similar to the current medical IT situation.  And the 7 is for HL7, but also 2007…  that famous year for our family.  Andaman7, the company, is a 1 year old startup but we’ve been working for 3 years on the technology.  We just raised our first 1.3M€.

So welcome to the club!

And if you see collaboration opportunities, let’s talk.  Small can help big, big can help small.  🙂

Vincent Keunen

vincent.keunen@andaman7.com

Anti Cancer foods – Richard Beliveau

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Get the book at: http://amzn.com/0771011350
En français: Les aliments contre le cancer
Excerpt. © Reprinted by permission. All rights reserved.

Cancer prevention facts to add to your diet

  • Approximately one third of all cancers are directly related to diet.
Book: Foods that fight cancer

Book: Foods that fight cancer

  • A diet containing three or four weekly servings of broccoli, nothing too excessive, was shown to be sufficient to protect individuals from colon polyps.
  • Cruciferous vegetables (brussel sprouts, broccoli, cabbage, cauliflower, kale) should be lightly cooked and thoroughly chewed when eaten in order to fully benefit from their anti-cancer potential. Chewing releases the active molecules.
  • Freshly crushed garlic is by far the best source of anti-cancer compounds and should be preferred over supplements.
  • The key to benefiting from the anti-cancer effects of soy lies in consuming about 50 grams per day of the whole food, such as raw (edamame) or dry roasted soybeans. Supplements containing isoflavones are not an acceptable alternative to the whole food and should be avoided.
  • Colon cancer appears to be one of the cancers on which curcumin may have the greatest positive impact. The daily addition of a teaspoon of turmeric to soups, salad dressings, or pasta dishes is a simple way of providing curcumin intake sufficient to prevent the development if cancer.
  • Green Tea contains large amounts of catechins, compounds that boast many anti-cancer properties. To maximize the preventative effects afforded by tea, select Japanese green teas, allow for an eight-to-ten minute brewing period and always drink freshly brewed tea, and avoiding Thermoses.
  • Eating cranberries should be preferred over drinking cranberry juice.
  • The best way to increase omega-3 levels in diet is to eat fatty fish (wild salmon, sardines, and mackerel) once or twice a week or add one tablespoon of freshly-milled flax seeds to your breakfast cereal.
  • Eating two tomato sauce-based meals per week may lower your risk of developing prostate cancer by up to 25%.
  • Citrus fruits are essential foods in cancer prevention: for their capacity to act directly on cancerous cells as well as their potential for enhancing the anti-cancer effects of other phytochemical compounds present in diet.
Richard Beliveau

Richard Beliveau

  • The resveratrol present in red wine possesses powerful anti-cancer activity which may be responsible for the beneficial effects of wine on the prevention of certain cancers. Grape juice and cranberry juice contains resveratrol but at levels ten times less than red wine.
  • The daily consumption of 40 grams of dark chocolate (chocolate containing 70% cocoa mass) may have definite health benefits and should replace or reduce that of sugar- and fat-filled candies with no phytochemical content.
  • Many herbs and spices used as seasonings, in particular ginger contain large quantities of molecules that act as anti-inflammatory compounds, which also reduce the risks of developing certain chronic diseases.
  • Instead of replacing butter with margarine, use olive oil as much as possible as a source of dietary fat; you will benefit from its healthful lipids knowing that it also possesses anti-cancer properties of its own.

This is just a summary.  It’s good to read the book to get a better understanding of why all these foods have an impact on cancer – when we understand better, we are more efficient at adapting our diet correctly.

PS: If you already have cancer, ask your doctor first – but make sure your doctor is open to “global therapy”, ie modern medicine + diet + alternative means.
PS2: These foods will not cure your cancer alone – modern medicine is very efficient in curing cancer (more than 50% of cancers can be cured and it’s improving); but these foods will significantly improve your chances of success.

Vincent