Social Health is Harambee!


Social Business. We have heard about that. A lot. Social Health? We have not heard so much about that, except the fact that health is a social thing when you catch the flu from your colleagues at work.

Social Health in a social technology meaning is probably new to many, but according to Jamie Heywood , engineer at MIT, social networks have existed in health care for 100 years.

An article in Fortune describes how Jamie and his brother Ben, both engineers at MIT, got frustrated by the lack of reliable information and support online when they learned that their other brother Stephen ha ALS (Lou Gehrig’s disease).

Therefore, in 2004, they launched the website PatiensLikeMe as a destination for visitors to share personal stories, medical histories and responses to online questionnaires. Today the site have more than 200.000 users and covers more than 1.800 diseases.

Now, this is of course very useful for the patients. Myself, I am a diabetic, and know a lot about my disease. I have read thousands of pages about diabetes mellitus. And I am the one who knows my body and my body’s reactions best. Even better than my doctor. The best source for knowledge on diabetic are the diabetics!

Social medical communities!

A lot of organizations have social communities online where their members discuss their diseases and how to cope with them. It is always a good support to get tips and guidance by someone who is more experienced than yourself and also a great inspiration to handle the disease and cope with ones life. And sometimes it can be really inspirational.

But these communities are not only good help for the patients themselves, they are also a great source of knowledge for researchers, doctors and nurses. Learning from the patients is a great help to all health care workers and also to the medical industry, hospitals an universities.

Even with all the privacy laws that regulate patient data, PatientsLikeMe, is able to bundle and release it’s networks information. As Ben Heywood says to Fortune: – We are radically open about it. We tell our members exactly what we do with their data, where it is going and for what purpose!

The greater good!

And the purpose is for the greater good. The data can be used for making better, more targeted drugs and better devices. So what they really have developed PatientsLikeMe to become is a «Learning Health Care System».

Another social community for health care is the doctor-to-patient network Practice Fusion. By first glance this does not seem to be a social network, but provides a cloud based electronic medical records system for doctors. The service is free, but is financed by ads. According to Fortune, CEO Ryan Howard, know that doctors would never use a system like this unless it offers them more convenience. To succeed in getting doctors to use it, Practice Fusion has added a bunch of tools that makes it easier for MD’s to do their work. One of the most important functionalities is the possibility to transfer medical records from one doctor to another.

Nearly 150.000 medical professionals are now using Practice Fusion and the service has about 60 million patients!

Norway still using taxi for medical records transfer!

And this is going on when my home country, Norway, are still not able to transfer medical records electronically between medical doctors and hospitals. They are so afraid of privacy that they send my medical records by taxi – as if the taxi driver is to be more trusted than a data cable!

I do not care who knows what disease I have, as long as my medical records is available with the click of a mouse at the very second my doctor need it – and transparent between all Norwegian hospitals and doctors. And as long as the information is not sold to any medical firm that want to push their products on me. Like all the Viagra ads I get on Facebook, just because of my age!

My medical records are my own!

My medical records, my information is, in my opinion, owned by me and nobody else. So what I would like to have is a smart card – like a credit card – that I could keep in my pocket wherever I go. And if I have an incident, the paramedic could put the card into a device, plug in his authorization code and voila – there is my medical record, my medication, my diseases, my allergies, my insurance number, my social security number – and the contact info to my spouse and my kids.

That would give me an exceptional patient experience which could be called Social Health. Because sharing medical information and experiences between patients make each of us better equipped to understand and cope with our diseases. And it means that our doctors and nurses could learn from each other and all us patients.

Because none of us is smarter than all of us. And because social means doing things together. Like the «Harambee» the word in swahili that means pulling together, collaborating and supporting each other. It perfectly captures the essential elements of social ecosystems – the ability of institutions and individuals to pull together and build a mutually supportive environment.

Harambee!

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