This conversation is closed.

Facebook like sharing and learning for healthcare

There is a lot of health information available but no real and reliable, accessible and actionable health data. In today’s scenario if one had a medical query (for e.g. what is the cure for tendonitis), one would start with a google search and come across multiple websites offering basic to specific information which is disorganized, unstructured, difficult to manage and even difficult to validate. The end result of the query currently depends on the perseverance, patience and competency of the user to navigate the information generated by the query. The resulting conclusions drawn by the user is inconsistent and in most cases leaves users with more questions than answers. In all cases, users are left to the mercy of their current health service providers.
What we found in our quest is that after the initial readings, all the information on the web is too generic and hard/impossible for non-medical people like us to infer anything useful from it. There were lot of forums and blogs which described what people were going through, but it was not always complete information or structured enough for us to piece their journeys together.
From such personal experiences was born the idea of myMEDistry, the goal of which is to help people around the globe capture their medical journeys in a structured manner to help others easily find them and more importantly use them. We believe such sharing of real world experiences makes it possible to collaborate in a global level and make breakthroughs in newer treatments possible.
Come, join myMEDistry BETA today and help us make a difference in the global healthcare experiences. Also, provide us feedback as we are working on the next version based on all your feedback

  • Jan 22 2012: Thanks for the comments Armistral. Privacy has been an open consideration for us while we were talking to users. We totally understand the inhibitions that people may face while sharing their medical journey. We have addressed it here on our blog http://www.mymedistry.com/sharing and hope it eases some of the fears.
    • thumb
      Jan 22 2012: That is excellent that you have thought about and are addressing this. I hope MyMedistry goes big and gets lots of content/activity. I can imagine many uses and directions for sharing this kind of information for healers and those that need healing. I signed up (even though I don't have much to share yet)!
  • Jan 22 2012: People posting medical information on the web may lack medical knowledge. If a reader follows web-based 'advice' from a random source, they may come to harm and the source of the information may be viewed as holding themselves out as a medical practitioner... in legal terms they may also be held to have given medical advice. None of which is an ideal situation.

    Any medical specialty is beset with arguments for and against a treatment option that may be considered to be definitive. Another reason why internet advices may appear to be generic rather than specific. e.g. Your myMEDistry page on high cholesterol is based upon the notion that high cholesterol is both harmful and a disease.

    This is complete nonsense, especially when you consider that our brains contain 25% of our total body cholesterol, you will see that you are in error. Cholesterol has NEVER been shown in the medical literature to be the cause of cardiovascular disease.

    The idea of a central repository of medical knowledge is a good one. That knowledge should be evidence-based and peer-reviewed for it to be meaningful. Another reason why so much of the web-based information is ill-informed. The knowledge should not be charged for, as in expensive medical journal subscription articles and it ought to be updated and maintained as an active database so that it does not become less useful by being superseded by new information.

    Personal experience (anecdote) is not the basis of sound medical practice and this part of your idea makes little sense to me. My medical journey (personal medical history) is mine and mine alone. It will not help anyone else and I have no wish to make it public in even the most anonymous form. Strict scientific method is the way that medical practice advances and people detailing their own personal journey has little to do with best clinical practice.
  • thumb
    Jan 22 2012: This is a great idea. I hope you also consider the fact that many people will feel that revealing their personal medical history might jeopardize their wellbeing in terms of employment, social standing or even their safety by allowing them to sign up with anonymous accounts that would still allow for contact to occur without the (easy) tracing of their actual identity. For some this would be a barrier to them joining such a site but their data and experiences may be among the most valuable, assuming they can feel reasonably safe in sharing it. I am going to post this as a solution on WeSolver.org as it appears to be a valuable and viable solution to the problem you are posing! Thank you for doing this!

    Regards,

    Armistral
  • Jan 22 2012: Thanks for taking the time Jeff. We totally agree that mymedistry or for that matter any such web resource alone cannot be regarded as sound medical advice and one needs to be very careful while taking them directly. We are at best a research resource to help patients be better prepared by reading about what others like them are going through. While I agree that your medical journey is yours alone, I feel strongly that others can learn from your experiences and at a minimum be better prepared to ask their doctors' the right questions. Our page on cholesterol is just showing some users' journey with high cholesterol, shows the medicines they have been prescribed and side effects they are experiencing..So, this can help someone else who recently got their cholesterol numbers and are being prescribed some other medication.
    The idea came from a number of personal experiences where we felt we could have benefited immensely if only we could connect with others who are going through a similar medical condition or treatment.
    http://www.mymedistry.com/blog-entry/imagine-world
    • Jan 23 2012: Thank you for your response, Vasantha. I believe that the current medical research ought to be made freely available to members of the public. It begs several questions: Only impartial research that advances medical knowledge should be available. It should be pre-digested so that the language it is couched in is easily understood by non-medically trained people. It should not be interpreted to give false hope to people suffering from progressive diseases. It should be non-sensationalist in its terminology. It should reflect the current medical position with regards to best clinical practice. It should be maintained by an institution with no vested interest in promoting any particular viewpoint.

      I think it can be helpful for people who are suffering with similar conditions to talk to others who are or have experienced the same condition. In my experience, there needs to be careful moderation of debates held under the notion that similar conditions will produce some sort of common bond between people with shared experiences. Support groups (for specific diseases) appear to be the most efficient way of sufferers gaining support for their medical condition and I would favour this approach rather than a random unwell people website.

      Nonsense tends to be prevalent when healthcare and treatment options are discussed among people without benefit of medical backgrounds... it even abounds when people are medically qualified! For a medical resource to be really useful it has to be current and utterly impartial. The implication is that the written word is not necessarily true nor unbiased and all possible treatment options ought to be discussed with the knowledge seeker's personal medical practitioner, before the person acts upon advices gleaned from such a website.