Jaw Dropping – the future of health…Patients Like Me

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  1. This social experiment is really innovative but at the same time I would also like to say that data may get wrongly interpreted by patients themselves without talking to their doctors. Patients often overread and overinterpret. So if they get diagnosed with something like ALS and see the downhill course as a graph, wont they freakout. I believe that such data should be disclosed by their physicians in an appropriate setup rahter than on a website.

    Of course it is a great source to study their quality of life and understand their disease course in addition to what a physician understands in his office or reads in books.

  2. You bring up 2 key points:

    1. Appropriate data interpretation is critical – today physicians take full responsibility for data interpretation. In most fields, we take responsibility for interpreting data related to ourselves and our actions – but not in the area of disease and injury. When will we move to providing general education, and perhaps going to the extent of certifying patients in specialty areas to interpret some of the data and some general understanding of the visual information like x rays and scans? While not for everyone, today this is not under general consideration, yet an educated patient is more likely to make better informed decisions about their health options

    2. Indeed this is a source “from the point of view of the customer” in our CRM jargon – and from here we can work out what matters most to the patient. When all the data is collected by the doctor and interpreted by the doctor, it is no surprise that the perspective of the patient can get lost. When this happens in CRM we recovnize that we have failed to hear the Voice of the Customer – but the Voice of the Patient is rarely heard in healthcare except in extraordinary initiatives like PatientsLikeMe

    Mei Lin Fung
    Twitter: meilinfung Blog: Mei Lin Fung says Professionals Earn Customer Trust

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