I found something very beautiful and very inspiring on TED.com
It is a story about a journey of a dying man and his brother who are both intent on making something positive about the whole situation.
They managed to create a website, PatientsLikeMe.com, that provides support for others and help explain and predict certain symptoms or future outcome of patients with the same disease. You can create timelines of a patients conditions to see if patients taking the same drugs or certain therapy (they even have one on prayer). You can also seen charts of effectiveness of some drugs or certain therapy and compare it with other patients. See real data that shows what are the different drugs, even experimental, taken to relieve a certain symptom or disease. All these data displayed in a meaningful way.
I found it amazing that this website was created with such a beautiful, positive and heartwarming intent and not a greedy one where money can be made out of this but just a website to cater to patients.
As doctors, they know all the statistics available for side effects and possible outcome by giving a certain drug after seeing patients of the same disease and reading tons of medical journals.
Patients, on the other hand, either have no access to such real data or have no knowledge of them and can easily be misled by random publications that are completely incorrect in their theories or studies just like the example in the video.
This website gives patients a place to do their own research, to have a say about their own treatment and to gain some control over their own lives. You can even print data out for doctors to analyze.
Patient-doctor communication is extremely crucial. Patients have to know that they need to participate in the diagnosis and treatment of their medical condition. They have to help the doctors and help themselves to pick out the right diagnosis and treatment. Doctors are not perfect beings who make no mistakes. What patients can do is to help doctors to keep on the right tracks.
You can find tons of information on this website and there is no saying if anyone would misuse the endless capability of the internet but let’s leave that to the webmasters. Some say that this is a breach of patient’s confidentiality but these patients are willing sharing their confidential medical records knowing that it might just help someone else.
I know that statistics are just number and they easily be wrong. There are outlier cases all the time but most statistics are right and numbers gives people a form of comfort and confirmation in times of uncertainties.
If you do have some kind of disease, PatientsLikeMe.com is a great place to garner support, to research on treatments and therapy and gain something positive as well as helping others. It is truly empowering.
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