Author Archives: Gangadhar

Power of the internet and e-patients.net

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As you might know, I am a member of the Society for Participatory Medicine (S4PM). They publish a blog called e-patients.net where empowered patients share their stories and exchange ideas on how to take control of their own healthcare.

Last week, I came across this awesome story of how these parents had to learn about DNA, gene mutation and medicine to understand what was going in their son’s body. It is quite technical and extremely interesting. If you have not read it yet, please do read it.

I shared this link with the members only listserv of the S4PM. This listserv is available for everyone to read here. E-patient Dave saw this post and published a blogpost on e-patients.net under the section – found on the net. Today, he shared that a mother contacted him to share that they saw this post and are contacting the doctor mentioned in the post. I really hope this helps their child. This is the reason for sharing such information on blogs. Even if it helps one person, it is completely worth it! Special thank you to Dave for posting this into the e-patients.net blog.

If you are not a member of S4PM, you should become a member to participate in the awesome discussion with the members of S4PM. It takes only $30/year to become a member.

Greek Hospitality

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As some of you might know, I was in Athens for a conference to present our DiaLog app to the Mobile Monday Athens conference. You can click here to find out how it went.

Since the event happened during our family vacation, we decided to extend our vacation to Athens also. So I ended up in Athens with my family. This post is all about how the Greek people received us with warm hospitality. We want to go back there again and so should you!

We experienced this unique hospitality right from the moment we landed in Athens. We took the metro to our hotel since we always to live like the locals and not travel like tourists. This meant that we were able to get to the metro stop near the hotel but we did not have directions to get to the hotel from the stop (special thanks to Aurelija Sukeviciute, one of the conference organizers, for giving extremely precise directions to the metro stop!). I ended up asking for directions from the guy at the security booth at the station. He looked up the hotel on the internet and then invited me into the office to show me the google maps and explain the directions to the hotel! Not many public officials will do this for tourists.

After the conference was over, Vicki Kolovou and her team of organizers were going to a Greek tavern for a late dinner. They not only invited me to join them but also my wife and son too! Paul Uza and Aurelija (Two of the organizers) actually came back to the hotel with me, then walked to the tavern with all of us explaining the history and background of all the places that we encountered along the way. We thoroughly enjoyed the tour of the Athens area given by someone who lives here and is aware of the history!

View of the Parthenon from our hotel room

A couple of days later, we went to visit the Panathenaic Stadium where the 1896 olympics was held. After our visit, we went to a near by park where my son wanted to play. We encountered Andreas Constantinou, one of the co-founders of the MoMoAth event, here with his family. We got to talk with him and his wife. When we were about to leave, they invited us to join them for dinner in the evening.  We Indians are very familiar with this kind of hospitality. When we meet new people and if we like them, we tend to invite them to our family dinners almost immediately. We have not seen this in any of the western societies that we have lived in. We were really touched by their gesture.

There was this other time when we got lost and asked for directions from a lady running a store. We asked for directions to the metro station which was our landmark to the hotel. She gave us directions but she also wanted to make sure that we took the shortest path and not be tired by going to the metro station first before going to the hotel. This was something that we noticed in almost everyone we encountered. They did not just want to help us, but they REALLY wanted to be helpful by giving us the most efficient, easy ways to get to our destination.

We had heard that the Greek coffee is very different and it should be tried while in Greece. I enquired at the front desk of the hotel if they served Greek coffee. One of the ladies who serves breakfast was also there and she immediately told me – “I will make Greek Coffee for you along with your breakfast”. She came to our table, asked for how we wanted the coffee and made it for us even though it was NOT on the menu. She also refused to charge for the coffee since she wanted our stay to be memorable and nice!

These are the positive memories that I remember after two weeks out. There were many more that I do not remember. It is amazing that the Greeks are such amazing hosts. Coupled with their awesome history, I feel Greece is an awesome country to visit!

TEDMED 2012: A Quick Summary

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I was able to secure a scholarship to TEDMED 2012, thanks to TEDMED organizers and Johnson and Johnson. TEDMED is an annual feast of Health and Medicine innovators and has recently moved to Washington DC from San Diego.

You can see the great summaries of TEDMED on their blog page. Since there are so many sessions and such variation in topics (Medicine, Healthcare, Patients, Doctors, Artists etc), the experience for every participant will be different. This is my summary of the talks that I liked. I hope the TEDMED community will post the videos soon so that everyone will enjoy them.

Jonathan Eisen‘s talk was about useful microbes in our life and how our modern life is removing these microbes (over cleanliness!). He was diagnosed with Diabetes and this got him studying about how the lack of useful microbes might be causing the auto immune diseases like Diabetes, Allergies etc. One of the startling findings he mentioned related to how kids born by C-section are at a 3-4 times higher risk for auto immune disorders like allergies and type-1 diabetes. He is also an avid blogger and is on twitter too.

Ben Goldacre talked about how negative results are not published in medicine and how they affect the way physicians and public perceive the efficacy of new drugs. He gave the example of a anti-depressant drug for which there were 41 published studies of the drug with 38 positive and 3 negative results. This made everyone think that the drug was very useful. There were other 33 studies with negative results that did not get published! Imagine how differently you would look at a drug where 38 studies are positive and 36 negative as opposed to one where 38 are positive and only 3 are negative! He is trying to get these negative studies into the spotlight. To learn more, you should check out this video by E-Patient Dave and follow him on twitter.

In my previous post about TEDxMaastricht, I had talked about how the TED talks do not have a Q&A in the end. I felt that this format hurt the conversation since there were some talks which could have used some conversation. There was a talk from Jon Cohen, from Quest Diagnostics on if patients can be like consumers. In my opinion, it did a tremendous disservice to empowered patients by stating that patients will judge the quality of a doctor or hospital by things like availability of donuts in the waiting room. I feel like this might be the difference maker if all things are equal but in the example quoted by the speaker (Hernia surgery), I feel patients do make the right judgement. It is to judge quality of health delivery based on outcomes (did the patient get all the information they needed about the surgery, did it help them? etc). The speaker also said that medicine quality should be based on “judgement” and “experience” of the doctor. I felt that even though “judgement and experience” are important from a medicine’s point of view, it does not matter to a patient as long as the outcome does not match expectations. I saw that many people disagreed with the speaker on twitter. A conversation at TEDMED would have helped clarify the speaker’s thoughts.

Dr. Atul Butte of Stanford University had an interesting talk about how science is now democratized thanks to the web. Just like Elance.com and odesk.com brought outsourcing to technology and other tasks, there are websites like Assaydepot.com which is bringing outsourcing to science, pharmacology and toxocology tests on the web. I had never heard of this and I was very surprised to find that you can even outsource your mice tests!

We also heard from Dr. Diane Kelly who has done amazing original work on invertebrate penises (yes, penises!). She described her research in a very fun and very easy to understand way. Her research is related to answering the question of what is unique of the penis structure that helps in maintaining its shape during erection. I cannot wait to see the video of this talk. She blogs at Science Made Cool.

There were also artists who performed and showcased their works at TEDMED. I got to meet Regina Holliday, of the walking gallery fame, in person. She paints to give the patient voice in health information technology. Her story is very powerful and is a must read on her blog!

We heard the story of Ed Gavagan. He was stabbed on the street in some gang initiation ritual and he survived due to the timely actions of the emergency personnel and the doctors. His video will be very powerful to watch since no words can describe his experience narrated on stage.

There were many many more powerful talks. These are the ones that I remember. I will post more thoughts as and when my memory helps me in the coming days. If you saw some talks that should be included, please do let me know so that I can write up another post with the ones that I missed here!

Summary of TEDxMaastricht 2012

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I was fortunate to be invited to attend TEDxMaastricht 2012 in person. I had watched its first edition last year on youtube and was keen to attend. Since this was my first TEDx event, I did not know what to expect. It turned out to be awesome. Here is a quick summary of what I saw. If you want to watch all the speakers, they are available at the TEDxMaastricht channel on Youtube.

TEDxMaastricht is the European Health focused TEDx event organized by Radboud University Nijmegen Medical Centre. In keeping with the guidelines from the TED organization, the speakers are all chosen for their original ideas and are given 8 minutes to present them to the audience. Unlike traditional conferences, there are no Q&As at the end of the talk. Also, unlike traditional conferences, the TED events tend to mix it up with inspirational talks, music, video from other TED talks etc.

The two main themes that caught my attention at TEDxMaastricht 2012 were: “Doctors are human” and “patients should be at the center of their care”.

On the first theme, Dr. Jeroen van Dillen showed the dilemma that doctors face today in caring for their patients. They are asked to do everything – care for the patients, be understanding of their emotions, be available for the patients, participate in research etc. His message was that doctors should talk about these dilemmas in an open and respectful way and not try to manage all by themselves. This was done in the form of a skit and the message was delivered very well. His talk is here.

We also saw this video from TEDXToronto by Dr. Brian Goldman where he talks about the mistakes he did during his career as a emergency physician. (A side note – when I watched it in the afternoon, I felt that this video was as long as the talks today – 8 minutes. Now I noticed that it is actually 19 minutes! It certainly did not feel like 19 minutes. It is that powerful). He talked about how nobody knows the batting average of a doctor that they are going to see. No one would like to go a doctor who is batting .400 (a superstar in baseball!) since he has made mistakes in 6 out of 10 cases! His point was that doctors are human, and they will make mistakes like any human being. There is a need for doctors to have an open environment to talk about their mistakes so that they can help others not to repeat those mistakes without fear of reprisals or punishments.

The same message was repeated by Paul Levy (ex- CEO of Boston’s Beth Israel Deaconess Hospital). He talked about how daily a jumbo jet 747 worth of lives are lost due to preventable medical errors. The solution to this is NOT to punish the doctors but to foster an open environment for them to help in preventing these mistakes in the future. He used the learnings from his time coaching his daughter’s soccer team and written a book about it. Thanks to a delay from USPS, we did not get a copy of it! His talk is here.

The second theme had a variety of talks around patient stories and how patients should be at the centre of their care.

The first talk on this topic was by Clarissa Silva, who got the first standing ovation for her talk about how she overcame mental illness. She used to be a caregiver to patients with mental illness when she herself was diagnosed with mental illness. She was devastated to find that they had written in her dossier that “she is not capable to follow through even though she is quite capable”.  She was able to overcome these problems because she worked with her allies in the care team. It was awesome to hear that no one considered the word “recovery” in her context and she is now helping others to heal. Her message was that as long as the care givers and the clients are having an equal relationship, the patients/clients can have a full recovery. The most memorable comment was “courage is being scared but doing it anyway”. Her talk can be seen here.

The second patient story was from Maarten Lens-FitzGerald, who is proud to call himself Ex-Patient 2.0! He was diagnosed with cancer and he took to sharing information about himself and his condition on twitter and blogged about it. He was being subjected to more chemotherapy when someone he had found online informed him that it feels like the chemo has not worked on it but in reality it would have. The only way to know is to allow some time. Then when his doctor also agreed with that assessment, he did not have to get more chemo again. He has been cancer free since then. He then went onto create Layar, the augmented reality browser that is so famous on smartphones these days. I was able to meet him in the dinner the day before too. He is @dutchcowboy on twitter.  His talk can be seen here.

There were couple more talks about having patients in the centre of care. One was by Dr. Paul Grundy, the global director of IBM’s Healthcare Transformation Initiative. He talked about the concept of Patient Centered Medicine Home. It showed how it is changing the ancient practice still followed in medicine of the doctor considered the master builder and the expert. By having patients at the centre, the costs of healthcare can be reduced and quality of the care improved.

The second one was by DocMikeEvans, who creatively tries to address the question of how to how to share medical information with patients so that it is easy to learn. His video 23 and 1/2 hours (about the single most effective thing you can do for your health) has been watched more than 2 million times on youtube.

We also heard Roni Geiger (aka Dr. Google) talk about his work as Chief Health Strategist for Google. He talked about how there are expert patients around the world who become experts in their condition in a short amount of time. He is now collaborating with Gilles Frydman, the president of ACOR, to scale up the power of these experts.

There were other interesting talks as well. The second standing ovation was for Dr. Bart Knols who is trying to find ways to eliminate malaria and dengue spread by mosquitoes. If one jumbo jet crashes due to medical errors in USA, there are 7 of them crashing everyday due to deaths from Malaria. This is why he took up the challenge to do something about it. He has found three ways to fight them – the first is the finding that mosquitoes are just as attracted to cheese as they are to sweaty feet. The second one is training dogs to sniff out the pools of water where mosquito larvae are living. The third one is a pill that a human can take which will kill the mosquitoes that might bite them!

There was also a medicine man from Surinam who talked about the need to conserve forests and the traditional medicine. He talked about how he wanted to be a part of the process when his wife went to the hospital to give birth. He also gave a blessing to everyone who participated in the event. It was very interesting to find that the TEDx organizers were brave enough to invite a practitioner of alternate medicine.

All in all, it was an awesome event. The people behind the event – Lucien Engelen and his team did a wonderful job. Now hoping to be there at TEDxMaastricht 2013!

Lifestyle and Health (aka what I saw at Quantified Self Europe Part 2!)

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I know that my first post about QS2011 was back in November and I had promised a second one. Here is that post after mulling over it for more than three months.

At the QS2011 conference, there were so many devices to track activity – Fitbit, Basis band, pedometers etc. Many of the participants (including yours truly) had tried these tools or were planning to. I realized that I had started using Fitbit and stopped and here is why I stopped.

Fitbit is a versatile device which can work as a pedometer during the day and sleep monitor at night. You just keep wearing it and it will automatically upload the stats online so that you can compare and evaluate them on your computer.

I also tried the tool for 2-3 weeks. I stopped after I noticed that consistently I was walking 4-5 kms of distance everyday. This would never happen when I was living in the US. So this is what convinced me that tools like fitbit cannot really help in an active lifestyle.

I realized that I had bought Fitbit to make sure that I was getting the required amount of walking/running everyday. But in the USA where I used to jump into a car to go anywhere, I needed an external measure to tell me that I have not been very active that day.

Fast forward to life in France and things have changed. I hardly use the car. All the places that I go to daily (grocery stores, school etc) are all within 1-2 km distance. And more importantly, driving a car is a real nuisance due to bad traffic and hard to get parking. This means that everytime, I need to go anywhere in the vicinity of 1-2 km one way, I almost always choose to walk.

This got me thinking. The real key to getting a healthy lifestyle is NOT these gadgets but a lifestyle where you walk and are on your feet most of the time as our bodies were expected to. No point in slapping on a gadget to see how many steps we have walked after spending 3-4 hours driving in a car!

Now there is new research which suggests that if one spends a very active one hour in the gym and then sits in front of a desk all day, it is just as bad as having a sedentary lifestyle. Considering this, the only way to stay healthy is to be active all day. What better way to be active than to include physical activity to go with your daily activities like going to work, shopping etc? No gadget can do that for us! Only we can choose to.