Sharing Health Information

If I could have invented one thing, it would have been a medical database of patient profiles and treatments that would be accessible to the entire health community. Patients, caregivers, doctors, researchers, and pharmaceutical companies would be able to share what they know. PatientsLikeMe.com allows patients to take control of their health by sharing their health, connecting with others going through similar situations and learning from each other.  I’d love to start an Adrenal Cancer community on PatientsLikeMe and have inquired because currently it looks like it’s open to a handful of other health conditions. 

The Openness Philosophy of PatientsLikeMe.com

“Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.”

 

“We the people have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost.”

      -Jaime Heywood

 

Please watch this video: Jaime Heywood on the big idea that his brother inspired.

Soksabay

Soksabay from Phnom Penh. I can’t believe December is ending soon! Where did the time go? Next month I leave beautiful Cambodia and it feels that there is still so much work to do here. I’m not sure why I am not inspired to write while living in Phnom Penh. So many experiences in such little time and I don’t want to forget about any of them yet I don’t feel the urgency to document them.

I still teach daily at the head office located in the heart of Phnom Penh. It’s the travel to the communities that I enjoy most. I’ve been teaching in two of the slum communities for CVCD twice a week. The two classes from 8:30-10:30 am go by quickly. I will travel with a staff member or teacher by moto to the classroom for about 30 minutes from the city. The kids look much younger than they really are because of malnutrition. The 14-year olds look like they are only eight. But they have the same laughter and enthusiasm as any child I know. Some kids will ask me to write down the word for them but I encourage them to watch me as I write the words on the white board. At the other end of that spectrum are some kids who refuse help. They really are independent and prefer to do the work on their own.

Yesterday, Mr. Pheak and I drove to a slum community by the railroad tracks near our head office, crossing the bridge on Russian Boulevard. The Khmer teacher who teaches there sat and became our student as we, Mr. Pheak and I, co-taught English for an hour. The classroom was not designed to fit the 30+ kids that attend. I watched as they brought in stools from their homes to sit in the back. Parents and young kids crowded each other in the doorway and window to watch. A man came in drunk and asked us for $2 but we asked him to leave and we locked the wooden door by lowering the tiny wooden latch. We asked some kids to come to the front of the classroom and they practiced simple conversation. How are you? What is your name? How old are you? For some kids this was a difficult exercise in pronunciation so it was good practice. As a game, I wrote the phrase on the board and called out words such as “name” and “what” to see who would be the first one to point the word out. Lots of volunteers for that exercise.

As we left the community, I saw a few of the same kids helping their parents selling used clothing or petrol in pepsi bottles on the side of the road.

Greetings!

 

Sak sa bye from Phnom Penh.  Today is a public holiday (King’s Coronation Day) so I am enjoying my day-off at a coffee shop.  I am online catching up with email, news and updates. 

Yesterday Mr. Sarath, CVCD director, and I met with John, founder of MatesAbroad a great supporter and contributor of CVCD.

We traveled to five community schools built by CVCD to speak with the teachers to discuss student progress and also to get their ideas on how they could improve learning and living conditions for the community.   

None of the schools have electricity.  The teacher and students work by the natural sunlight that enters through the windows.  There are wooden chairs attached to wooden desks, white boards, posters, and a small library in the back of each classroom.  We visited one classroom equipped with electricity since it’s the computer learning class but the power was down while we were there.  Mr. Sarath mentioned that they are working on a generator for that class.

Electricity is expensive in Phnom Penh.  At the home where I live, the electricity has been turned off occasionally after 8 pm.  This lasts anywhere from 15 to 45 minutes.  Thank goodness for my book light, not to mention my books!

Normally, Miss Thida, the CVCD receptionist will pick me up on her moto.  My duties at the CVCD organization include practicing English conversation with staff, updating computer tutorials (thanks Mr. Westfall), and working with Mr. Sarath in accounting work.  On Monday I sat with project managers, Mr. Sama and Mr. Kosal, and showed them how to create an online journal on WordPress.  I’ll give you an update when we finish with that.

It’s almost noon.  Soon, I’ll be walking to a friend’s home for lunch.  I used to pay $1 for a moto ride but find that it’s actually close enough to walk.  From the café it will take me about 15 minutes to reach my friend’s home.  One thing I will never take for granted is sidewalks.  It’s difficult to walk here alongside all the motos and vehicles but I manage.  Pedestrians don’t have the right of way here. 

Hope all is well!