5 ms·

My point is that this man is searching for a cure. His form of cure is a beautiful, inclusive, democratic thing (I mean that with no sarcasm) including art, doc

by robbiep 14y ago

My point is that this man is searching for a cure. His form of cure is a beautiful, inclusive, democratic thing (I mean that with no sarcasm) including art, doctors, other patients, support from other run of the mill humans, and the treatment opinions and recommendations of people that are formally or informally trained in treatments that are not scientifically valid. Your suggestion that I am undertaking 'middlebrow dismissal' of this man's work and passion misses the point of my post entirely. Which I will reiterate for you, is not that I disagree with this man's idea, or the general principle, but that there is no filter or adjustment in place to take treatment suggestions and approximate a 'better treatment' A deeper point you raise is, does every point of view have merits, and should it be given the same airtime as all other views. This is particularly important when someone's views begin attracting a lot of attention: The good, or valid, ideas should be supported, and the invalid suggestions should be weeded out by discourse. I believe that any patient has the rights to make their own treatment choices, and they should not be judged as a result of those choices (Unless they are a parent deciding for an incompetent child, however there are many legal cases that establish when this should be possible) But this patient is influential; what he says will influence other patients with his condition; I have 2 issues here: 1) It breeds 'back door' legitimacy for fraudulent treatments 2) Some alternative-inclined patients may choose to opt solely for those treatments, which will kill them. So this error with his model should be pointed out, that a more perfect use of modern communications technologies can be used to enhance the patient's quality of life and treatment.

JabavuAdams 14y ago
> Some alternative-inclined patients may choose to opt solely for those treatments, which will kill them. This kind of negative feedback loop is not a bad thing.
- taybin 14y ago
  Why would that be? Surely you're not suggesting that people who make poor medical choices deserve to die...
  - tomhoward 14y ago
    Yeah. Surely not...
  - JabavuAdams 14y ago
    People who make poor decisions will by definition have poor outcomes. But maybe they don't have the same metric. What seems like a poor decision to us may make them perfectly happy until they die in a way that's consistent with their (incorrect-to-us) beliefs. The best we can do is to make information available, to debunk scams and de-incentivize scamming, and to continue to learn more about human cognitive biases.
tomhoward 14y ago
Does every point of view have merits, and should it be given the same airtime as all other views. He doesn't need you to point out what has merits and what should be given airtime. His approach is designed to determine what will work, based on evidence. He should be entitled to include absolutely anything he chooses as something that may have the slimmest possible hope of being in some way beneficial. If his open-source approach is valid, anything that is ineffective will be shown to be so. there is no filter or adjustment in place to take treatment suggestions and approximate a 'better treatment' The whole open-source process is the filter. The point is that his process, if it works, will find a far better outcome than a dogmatic approach represented by such a sentiment as "anyone with a half rational brain should be alarmed by this statement".
- DanBC 14y ago
  > He should be entitled to include absolutely anything he chooses as something that may have the slimmest possible hope of being in some way beneficial. Ignoring the not-slim possibilities of serious harm from side-effects? (Not to mention interactions with other treatments, making them less effective or more harmful.)
  - tomhoward 14y ago
    No, not ignoring them at all! Taking everything into account. Yes, everything. Did you not see the bit where he talked about having a whole lot of conventional doctors involved, and having practitioners from every discipline be made aware of the recommendations that each other were making?
    - DanBC 14y ago
      Vulnerable people in England get some protection. One form of that protection is provided by local government Social Services. (Each scheme has a different name because they're provided by different regional authorities. And this one I'm talking about is obsolete.) MARMAP - multi agency risk management & assessment panel is a group of the people involved in the care and treatment of a vulnerable person who is at high risk of harming themselves or other people. Let's make a hypothetical patient, and call him Bob. Bob has a GP. Bob has a care coordinator. Bob has a consultant psychiatrist for outpatient care. Bob has a consultant psychiatrist for inpatient mental health hospital care. Bob has a community treatment team. Bob has a community psychotherapist. Bob has a crisis team. This is about ten people just for the mental health stuff. I can tell you now that these people do not agree about the best way forward for Bob. Even though they're all in the same room as Bob, and they all get minutes of the meetings, one doctor will call Bob non-compliant when Bob follows the conflicting advice of another doctor. (EG: The in-patient consultant tells Bob to avoid going to hospital. The out-patient team admits Bob, against his will. Bob is called manipulative by the in-patient doctor.) This is a lousy situation. Even though clinicians are talking face to face with each other communication gets garbled. Imagine the problem when communication goes from a nurse observing Bob to one doctor, through their juniors, to a secretary, to another team (sometimes using weird technology such as fax machines) through to a team leader, to a team member. ("Interface Problems") And this is within the same organisation. Moving data from the MH trust to a different medical trust is tricky, and to social services or law enforcement is even trickier. Getting more people involved causes problems, and that's when the people are in the same specialism and broadly agree on modes of treatment. Getting more people involved when those people have fundamentally different opinions about treatment is going to distract them from providing good treatment as they focus on debunking stuff that's useless but has vigorous advocates.
genuine 14y ago
> a more perfect use of modern communications technologies Grammar problems! Definitely not someone I want to have working on me if you are truly a med school student.

by robbiep 14y ago

JabavuAdams 14y ago

> Some alternative-inclined patients may choose to opt solely for those treatments, which will kill them. This kind of negative feedback loop is not a bad thing.

taybin 14y ago
Why would that be? Surely you're not suggesting that people who make poor medical choices deserve to die...
- tomhoward 14y ago
  Yeah. Surely not...
- JabavuAdams 14y ago
  People who make poor decisions will by definition have poor outcomes. But maybe they don't have the same metric. What seems like a poor decision to us may make them perfectly happy until they die in a way that's consistent with their (incorrect-to-us) beliefs. The best we can do is to make information available, to debunk scams and de-incentivize scamming, and to continue to learn more about human cognitive biases.

tomhoward 14y ago

Does every point of view have merits, and should it be given the same airtime as all other views. He doesn't need you to point out what has merits and what should be given airtime. His approach is designed to determine what will work, based on evidence. He should be entitled to include absolutely anything he chooses as something that may have the slimmest possible hope of being in some way beneficial. If his open-source approach is valid, anything that is ineffective will be shown to be so. there is no filter or adjustment in place to take treatment suggestions and approximate a 'better treatment' The whole open-source process is the filter. The point is that his process, if it works, will find a far better outcome than a dogmatic approach represented by such a sentiment as "anyone with a half rational brain should be alarmed by this statement".

DanBC 14y ago
> He should be entitled to include absolutely anything he chooses as something that may have the slimmest possible hope of being in some way beneficial. Ignoring the not-slim possibilities of serious harm from side-effects? (Not to mention interactions with other treatments, making them less effective or more harmful.)
- tomhoward 14y ago
  No, not ignoring them at all! Taking everything into account. Yes, everything. Did you not see the bit where he talked about having a whole lot of conventional doctors involved, and having practitioners from every discipline be made aware of the recommendations that each other were making?
  - DanBC 14y ago
    Vulnerable people in England get some protection. One form of that protection is provided by local government Social Services. (Each scheme has a different name because they're provided by different regional authorities. And this one I'm talking about is obsolete.) MARMAP - multi agency risk management & assessment panel is a group of the people involved in the care and treatment of a vulnerable person who is at high risk of harming themselves or other people. Let's make a hypothetical patient, and call him Bob. Bob has a GP. Bob has a care coordinator. Bob has a consultant psychiatrist for outpatient care. Bob has a consultant psychiatrist for inpatient mental health hospital care. Bob has a community treatment team. Bob has a community psychotherapist. Bob has a crisis team. This is about ten people just for the mental health stuff. I can tell you now that these people do not agree about the best way forward for Bob. Even though they're all in the same room as Bob, and they all get minutes of the meetings, one doctor will call Bob non-compliant when Bob follows the conflicting advice of another doctor. (EG: The in-patient consultant tells Bob to avoid going to hospital. The out-patient team admits Bob, against his will. Bob is called manipulative by the in-patient doctor.) This is a lousy situation. Even though clinicians are talking face to face with each other communication gets garbled. Imagine the problem when communication goes from a nurse observing Bob to one doctor, through their juniors, to a secretary, to another team (sometimes using weird technology such as fax machines) through to a team leader, to a team member. ("Interface Problems") And this is within the same organisation. Moving data from the MH trust to a different medical trust is tricky, and to social services or law enforcement is even trickier. Getting more people involved causes problems, and that's when the people are in the same specialism and broadly agree on modes of treatment. Getting more people involved when those people have fundamentally different opinions about treatment is going to distract them from providing good treatment as they focus on debunking stuff that's useless but has vigorous advocates.

genuine 14y ago

> a more perfect use of modern communications technologies Grammar problems! Definitely not someone I want to have working on me if you are truly a med school student.