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alternative research model?

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Old 06-30-2015, 02:55 AM   #1
job1119
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Default alternative research model?

At MD Anderson's Leukemia Center, personalized treatment for each patient could be done, by comparing, disease, genetic data, scans, treatment histories, and symptoms from the enormous medical bases. The development of personalized treatment plans, based on researching the above factors has not been extensive. Since it can take numerous researchers several weeks to analyze data and develop such a plan. (The Washington Post, June 27,2015).

But, what if a computer could do some or most of these functions i.e.,review patient's disease profile compared to other persons with a similar profile, treatment and outcome? To develop such a personalized treatment plan would involve analyzing: symptoms, observations, imaging(e.g. DAT scans, etc.), lab tests, published and private research, data basis, treatment histories, genetic data, environmental factors.

Enter "Watson"

"Watson", named after IBM's first CEO, is the nickname of an advanced computer, which comes closest to our concept of artificial intelligence. That is, read and understand natural language, research, develop and test hypotheses, and "learn" from it's experiences.

IBM is now training Watson to become a cancer specialist. Where numerous researchers may take weeks to develop a personalized treatment plan, Watson, potentially could do in several minutes.

Jho Low's, grandfather was Dx with leukemia in Asia. The Asian doctors worked with specialists at MD Anderson Leukemia Center to develop a personalized treatment plan. Subsequently, MD Anderson's Leukemia Center received 50$(USD) million, from Jho Low for integrating "Watson" into it's research and treatment program.

Where is the Watson computer for PWP?
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Old 06-30-2015, 07:26 AM   #2
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These "personalized treatments" are just a PR stunt, mainly for IBM. Will your health insurance company pay for advanced treatment like this? Mine won't even come close and we have a reputed "very good" plan.

While the headlines from studies make it sound like we're close to this, we are miles away .. so far away that unless you are in the 1% and paying with your own money, or risk joining into a study that just happens to be doing what you want and are lucky enough not to be in the placebo group. At least that's the way I see it in the states. Perhaps it's much better in the UK or France, I don't know.

If there was ANY interest in "personalized treatment" your docs would do genetic testing first and you would be getting all kinds of serum tests and biopsies, etc. In my experience they never do this stuff till it's almost always too late. Insurance companies determine the treatment methods because they determine what they will pay for.

Sorry if this sounds like a rant .. I guess it is. Has anyone here had a different experience in the US, or any country for that matter?
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Old 06-30-2015, 07:58 AM   #3
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Originally Posted by BreezyRacer View Post
These "personalized treatments" are just a PR stunt, mainly for IBM. Will your health insurance company pay for advanced treatment like this? Mine won't even come close and we have a reputed "very good" plan.

While the headlines from studies make it sound like we're close to this, we are miles away .. so far away that unless you are in the 1% and paying with your own money, or risk joining into a study that just happens to be doing what you want and are lucky enough not to be in the placebo group. At least that's the way I see it in the states. Perhaps it's much better in the UK or France, I don't know.

If there was ANY interest in "personalized treatment" your docs would do genetic testing first and you would be getting all kinds of serum tests and biopsies, etc. In my experience they never do this stuff till it's almost always too late. Insurance companies determine the treatment methods because they determine what they will pay for.

Sorry if this sounds like a rant .. I guess it is. Has anyone here had a different experience in the US, or any country for that matter?
what are you ranting about!!!!
the first dose of penicillin likely cost $1million, there was a board set up to determine who received it, basically who lived or died, there was no prescription insurance back in the 1940's.

l-dopa cost a fortune to manufacture when first discovered, read the history. but eventually they became dirt cheap. same story is happening in genetic testing. cost isn't going to be the problem, it's not an exact science and interpreting the data is slowing implementation, not cost, which is why i think some docs don't want to open that can of worms with patients on all but the most serious of genes affecting diseases. i'm not an expert on this but had to reply.

i used to write software for retail pharmacies, i'll never forget the day i had to change the software to handle drug prices over $9999.99, and as drugs became more expensive, more people had to buy insurance to cover the costs and control them. but even in a 1 payor system, talk to some brits or canadians, you have to jump thru hoops to get expensive meds.

i hate the profit motive in medicine as much as anyone and i think pd'ers suffer more than they should in just getting the best treatment using the cheaper meds such as C/L, requip, mirapex since neuros are so overworked and often don't have the time to fine tune dosing unless a patient insists on it or find the absolutely best drug regime.

sorry for my rant.
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Old 06-30-2015, 08:44 AM   #4
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Sorry if I seemed a bit vague. I have nothing against the profit model .. the entire world I live in operates that way.

What I am miffed at are all the studies that "find this, find that", yet conventional treatment modalities never change. The research never seems to make it down to the patient level because it's your insurance company that dictates treatment methods.

How is any doc supposed to ever try these new modalities (speaking in general terms of health care, not specific to any particular disease like PD, etc).

We are getting further away from "personalized care", not closer to it. When was the last time a doc even tried to get you a homocysteine level test, much less any genetic testing. The treatment you get is cookie cutter because that's all that will be paid for by your insurance company.

So, does the doc determine the treatment? No, it's the insurance companies. That's the way my doc explained it to me. Ask your doc about it ..

I am GLAD I'm not a doctor .. it's got to be stressful as hell .. if you still care.
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Old 06-30-2015, 09:03 AM   #5
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Originally Posted by BreezyRacer View Post
Sorry if I seemed a bit vague. I have nothing against the profit model .. the entire world I live in operates that way.

What I am miffed at are all the studies that "find this, find that", yet conventional treatment modalities never change. The research never seems to make it down to the patient level because it's your insurance company that dictates treatment methods.

How is any doc supposed to ever try these new modalities (speaking in general terms of health care, not specific to any particular disease like PD, etc).

We are getting further away from "personalized care", not closer to it. When was the last time a doc even tried to get you a homocysteine level test, much less any genetic testing. The treatment you get is cookie cutter because that's all that will be paid for by your insurance company.

So, does the doc determine the treatment? No, it's the insurance companies. That's the way my doc explained it to me. Ask your doc about it ..

I am GLAD I'm not a doctor .. it's got to be stressful as hell .. if you still care.

if your're saying insurance companies don't like to compensate doctors for keeping you healthy, some do more than others. you mention insurance companies not compensating for testing for homocysteine or i guess other tests you think are important. i see your point now. yet ironically, more unnecessary tests/procedures are likely prescribed than ever before due to defensive medicine. just joking but why sweat the details, as technology improves, we'll just get organ replacements, stem cells.

now lets talk about global warming, i'm in seattle and we are hitting record highs and record drought. don't even want to think about what life will be like here with no snow pack in future years
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Old 06-30-2015, 09:21 AM   #6
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It's more that insurance companies don't like to change established protocols that they will pay for. They will pay for a homocysteine test, of course, as long as the doc talks to them nicely about why it's needed. It has to get approved and a doc will be thinking "can I sell this to the insurance company or will they push back?".

So the decision making happens at the insurance company level rather than the doctor level.

Given that that's the case, how does a doc follow a hunch, or innovate, or even personalize treatment? That's what set me off, the "personalized treatment" aspect of the posting. AIN'T EVER GONNA HAPPEN .. unless it saves money (never mind any curative nature of the treatment).

I used to care about global warming quite a bit, and act accordingly. However over the last few years I've concluded that it's beyond control, much like registering a gun for instance. Now a days I try to concentrate on things I THINK I can have some control over.
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Old 06-30-2015, 09:22 AM   #7
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To answer the questions about the situation in England there is a body called NICE (National Institute for Health and Care Excellence) which decides whether a particular therapy will be paid for by the NHS. The hurdle is currently about 30000 per QALY (quality-adjusted life year). There is also local budget holding that may result in something passed by NICE not being available in a particular location (this is called a post code lottery). Although one may argue with particular decisions, the general principle seems right: without it pharmaceutical companies could charge what they like. Medicines are not free (except to the under 18s, over 60s and special groups, but not PwP), but an annual payment of about 130 will cover all drugs. In practice this means that I get all reasonable Parkinson's drugs, but may be the generic version of some, but not Duodopa.

I share the previous posters' view that we are a long way from personalized medicine. However, as I see it there is a huge benefit from taking the lead ourselves:

Advances in technology, such as cheap computers, smart phones, genetic testing, sensors, etc., have given us the ability to generate huge amounts of data, and the internet gives us the ability to communicate it.

23andMe, who do free genetic testing for PwP.

Even as a trial of size one, ourselves, we can seek to understand the effects of our drugs, monitor their performance and actively look for an optimal dosage regime for ourselves.

John
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Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 06-30-2015, 09:35 AM   #8
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That sounds like a pretty good and open system, John. It sounds like the patient can have a say in it too.

It's an undefined thing that happens in the background here in the US, determined by your insurance carrier.

It's not hard to imagine that insurance companies get kickbacks from the drug companies here, just like doctors get kickbacks. Hell, here chemo docs actually get to sell the drugs they use, directly profiting from every chemo treatment you get .. there is a lot of dirty money in that end of the business.

I also agree with your assessment that it's never been easier for us patients to learn, and "self diagnose", and "self treat", though you need to to hide a lot of that from your doc. They HATE self diagnosing patients even though they only get 20-30 minutes with you to figure out what's going on.

Are your patient visits limited in time there?
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Old 06-30-2015, 09:35 PM   #9
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There are big variations across the NHS. But, in my experience, GP visits are usually limited to 10 minutes, the initial consultation with a neurologist to 60 minutes and subsequent ones to 30 minutes. When things are stable it is common in the UK to see a specialist nurse every 6 months, rather than a neurologist.

John
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Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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