Open Source Cure for Brain Cancer

As I was reading the news, I stumbled across a very interesting article pertaining to open source medical records.  More specifically, the article was about a man named Salvatore Iaconesi whom was recently diagnosed with brain cancer.  The article gives insight into his journey to battle the cancer as well as his unique approach to fight it.  Salvatore decided to make his medical records publicly available in a variety of formats, such as plain text documents, excel documents, and audio recordings, which he then made publicly available on his website called The Cure.

Salvatore’s unique approach has lead to thousands of additional case studies of his particular situation as well as good wishes, and a wide range of support/advice from others who were in his situation.  I am curious to know what everyone thinks of this idea behind open sourced medical records.  Personally, I feel as if it is someone’s personal choice whether they would like their personal medical records to become public.  However for those who oppose the idea entirely, I think the support and additional help Salvatore has received has been incredible and frankly I am surprised by the immense outreach he has received from people across the world.  

I do question how effective open sourced medical records would be in a broader scale.  Perhaps there is a certain interest in Salvatore case but how much help would be given to individuals if there were several thousand public medical records available?  

The article also reminded me of the 4th Paradigm article relating to the expansion of a worldwide healthcare system.  Although open sourced medical records are slightly different, if this idea took off it would be interesting to see how collaboration could enhance the medical field as a whole.  Please comment below to let me know what you think of this unique idea and feel free to watch the TED Talk on the link given below.

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3 Responses to Open Source Cure for Brain Cancer

  1. cbaughma says:

    I agree with you in that I think it should be the patient’s choice whether their medical records are made public or not. I also think that doctors should encourage their patients to make their records public in order to increase collaboration. The more information we gather, the closer we get to finding a cure. I believe that open source medical records can do great things for our society and advancement in the medical world. People with rare diseases can come together and compare symptoms or side effects of some sort of medication. From these connections, we can discover trends or even perhaps prevent such diseases from occurring to others. The potential of open source cure is incredible, and it could lead to a massive overall increase in public health across the world.

  2. maddiegogo says:

    Since medical records are so personal it has to definitely be the persons choice to make their records public or not. The Salvatore case is very interesting because it is a case where the making the records public helped many others lives. But just because one set of medical records made a big difference in others lives does not mean that all of them are. I think we should be careful in what medical records are public are not. Maybe instead of doctor’s encouraging all of their patients to make their records public, they should only encourage those who they think could impact others’ situations. Or perhaps there could be some general depository, where people decide what records make it or not. In many ways this issue of deciding if medical records should be public and if so, which ones is similarly to issues concerning archives.

  3. caseylynn122 says:

    This is a unique dilema because they are personal records, but I think opening up to the public, or even all medical professionals, could be really beneficial in making progress in diagnosis. It could help to find trends, especially in diseases that are more uncommon.

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