Is It Helpful for a Patient to Know About a Disease That Is Incurable?

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We may think, then don't give that information to the patients because we don't know what it means yet, we don't know how it affects the treatment decision, we don't know how it affects their prognosis, patients though have a say in this and many patients are saying I want to know that and as an example we've just been working on a project that you see yourself, I'm advising on it but it was done in the department of neurology by some very, very interesting people including a research geneticist Peter [xx] and Steve Hauser his mentor and they've developed an MS bio screen, so it's a very devastating disease but we haven't known which individual is going to wax and weigh in their course or have a rapidly progressive course, so you might say how is it helpful for them to know even if we get beyond descriptive analytics to predictive, if their's know great intervention, there are some earlier and earlier effective interventions in slowing disease progression, same thing with dementia we have tools that're getting more sensitive in early detection of dementia through digital technology again demonstrated that in one department of UCSF, but what's the point if you can't treat it? The truth is patients want to know because that's a window in time where they can make life choices, where they still feel like they have some say, and if we catch dementia or Neutrogena diseases too late, they've lost their window of opportunity to say what they want and how they want it to be within the constraints of the abilities of their disease.