Jamie Heywood: The big idea my brother inspired

[Pagra101]

If he died 3 years ago, how was still alive in October 2009?

[darryltrushell]

This is very similar to a UK project that is working on this type of technology specifically for endometriosis. Google 'theukendosurvey'.

[ProtonTherapy1]

I work in the field of radiation oncology. The treatment of cancer. This method of patient data sharing is potentially of profound use.

The link to this video was sent to me by my best friend. Also an oncology practitioner, but more importantly, and newly diagnosed ALS sufferer. He gets it, as a medical professional, and as a patient.

[Astowhy]

this is really meaningful data, it will only get better and will thus give people better health care / treatment. Great presentation.

[ritapatel58]

You are great to do this. I have been diagnosed with Parkinson's disease. I have been looking for reason for my life , I am Asian Indian and being a woman I have so many people in my life to blame in this male dominated society but instead I want to make this a positive experience and find a purpose for this life.

I went to India to my home country to find comfort with my parents and looking for the spiritual path. I found the ART OF LIVING FOUNDATION., the largest non profit foundation

[roidroid]

this could be a handy tool for transhumanists and life-extensionalists to track the effectiveness of supplements.

Hi from imminst

[FreemanGordon2009]

I have shares in lithium. SILENCE!

[Giby86]

This won't change the world because sadly it has little scientific value. But it is an outstanding source of comfort, and an amazing example of human compassion and brotherhood. I think this is the real meaning of this.

[tommyk77]

Interesting. Failed to mention that prayer would only be helpful as a placebo :-P

[crudhousefull]

@tommyk77 Are you alluding to any particular study?

[tommyk77]

@crudhousefull I know there have been a few. It's also the plausibility issue, though. Placebo is the default position too

[earlyAMbirds]

two problems:

privacy

issue of big percentage of patients not able to use computer independently

but, otherwise, genius

[mikontisott]

What a beautiful tribute to his brothers life. I was so moved to hear this. Thank you.

[omghai2u]

pharmas are such bullshit excuses for a fix when it comes to anxiety and depression

[smudge6699]

@omghai2u

So is the pseudo science of psychology and their association with big pharma..

Where's the origin from which to measure any behavioural aberration?

I've yet to find one psychologist who can tell me.

The implications of this are frightening!

[omghai2u]

@smudge6699 yeah exactly there are no absolutes with these things. people can manage themselves, they HAVE TO, there is not any other option

[bogdanbelcea]

The only thing that I may say is ....

DOUBLE BLIND RANDOMIZED STUDY

.... then again, data is at least fun .. and in time it will be very helpful

[smudge6699]

@bogdanbelcea

Depends on the protocol and any hidden agenda the study may have.

Scientists can be corrupt too.

[bogdanbelcea]

Well, this is why it has to be double blind randomized ... and of course , the resulting data has to be independently check able and reviewed. In part this is what makes a clinical trail so outrageously expensive.

What this tool does is create a high amount of of non scientific, but still relevant data.

[omegavalerius]

This would be a good way to start seeing some pattern and then go for the real scientific research to see if there is something.

[JeffreySchollar]

@omegavalerius

I agree, this could be one of the biggest strengths of this application

[smudge6699]

@bogdanbelcea

Well at least it's better than seeding new diseases to make more profit by providing the cures.

Baxter.

Joseph Moshe.

[Scurmicurv]

Oh come on people, knock it off with the whining about the prayer part. I too winced at it and I too very much wish people could just do away with their imaginary sky daddies, but really, isn't it rather silly to shout about in this context?

Anyhow, this was a very interesting idea, I hope they keep it going. Should be a pretty valuable source for future medical research.

[vasniltere]

I don't know why you would wince at it. I don't wince at people who balk at my beliefs.

[Scurmicurv]

It's more of a philosophical objection; I simply don't like religion and what it does to our species and so I also dislike it's various expressions. I especially dislike how grown ups for some reason have to resort to obviously false imagination to find peace of mind.

However, in this case my dislike doesn't really count since no one is trying to force anything on people or spreading outright lies. What counts here is only a very interesting concept for useful data gathering.

[smilegonewild]

As for the argument on whether prayer actually works there have been studies - namely the Study of the Therapeutic Effects of Intercessory Prayer - that suggest that prayer has no effect on health recovery. That being said, it doesn't mean people shouldnt do it. Prayer doesn't harm anyone. Religious freaks do. Believing in something doesnt. Getting mad at people because of their differences in belief does. Doesnt matter if youre right in your beliefs its impeding in others beliefs that is wrong.

[vasniltere]

aha.. there is the most eloquent way of stating it that I have ever heard.. prayer doesn't harm anyone, religious freaks do. not believing in prayer doesn't hurt anyone, but attacking someone, verbally or otherwise, because they do believe in it, does. The argument runs both ways..

[IanEColeman]

Prayer does harm people. Believing in anything irrational is dangerous, as is any form of delusion. I don't attack anyone verbally (unless they choose to attack me), but I will let people know what I think if they start talking to me about it (or otherwise writing about it in public forums). We would all be better off without prayer and religion.

[smilegonewild]

This is truly innovative! Amazing that someone could take something so tragic and make the best of it. I'm really really impressed with the brother who kept fighting to make his life meaningful - inspiring!

[djScottyTea]

The battles over intellectual superiority are so bitter, because the stakes are so low.

[vasniltere]

well said.

[Scinery]

fucking hell how did i guess you retards would be arguing about the prayer thing.

[vasniltere]

I wouldn't call them retards, but I do agree that arguing about the prayer thing is immature. It really gives a bad name to atheists to do so. I've heard many atheist complain that their right to not believe in God is being stomped on, yet then some among their ranks turn around and bash on subjects like prayer... it's kind of hypocritical. Mind you, don't misread me. The hypocrisy is on both sides and I understand that, but it still doesn't make hypocrisy right.

[thethreeheadedmonkey]

Atheists bash on prayer because prayer is bullshit, and has been medically proven to be so.

[UniversalBrother108]

false

[thethreeheadedmonkey]

@UniversalBrother108:

Yes, go ahead, argue with evidence. It's also been shown that non religious people aren't as thick-headed as religious people. Go figure. I can cite you that article if you'd like, but I'm sure you think God just fucks with all the scientists to make them think they know something.

[UniversalBrother108]

That is a rather presumptions, and dare I say thick-headed, response. Good job embodying the qualities you are down casting. Science has not categorically proven prayer to be 'bullshit'; despite a recent study or two that suggest that.

[thethreeheadedmonkey]

@UniversalBrother108:

For a guy who pretends to have a big vocabulary, you need a spellcheck. If you want to seem smart when arguing, at least spell right. And yes, science HAS categorically decided that. Until there's proof prayer WORKS, then prayer is bullshit. All the evidence is on the bullshit side. Let me know when that changes.

I can cite you the article - and by thick headed, I mean unwilling to criticize ones own views and perspectives. People like me do that a whole lot more.

[UniversalBrother108]

"San Francisco cardiologist Randolph Byrd conducted an experiment in which he asked people to pray for 192 people hospitalized for heart problems, comparing them with 201 not targeted for prayer. No one knew which group they were in. He reported in 1988 that those who were prayed for needed fewer drugs and less help breathing.

William S. Harris of St. Luke's Hospital in Kansas City, Mo., and colleagues published similar results in 1999 from a study involving nearly 1,000 heart patients"

[UniversalBrother108]

Different studies are producing different results; the results are not absolutely conclusive. And with a subject such as prayer it is difficult to get quality, repeatable results. Especially considering that there have been so few rigorous studies done on the subject. Science does not 'decide' anything per se, it is suggestive. It would be completely ridiculous to say that prayer doesn't have a beneficial effect on those who practice it; there is a clear psychological benefit.

[vasniltere]

Proven so? those are some pretty strict words, pretty fickle words as well. What is the nature of proof? How can anyone prove anything when we already know that the mind and the senses can be deceived. Perhaps then, proof isn't what really matters, but instead, what really matters is what someone believes is true. You believe what you believe, that prayer is bullshit. I believe otherwise. And there we stand, apparently infringing on one another? no?

[IanEColeman]

There is a definite line between proof and perception. Anything that our senses regularly register over and over again, we must take as reality. This is true or else you would not be able to function in any way shape or form. The world is very black and white; there either is or isn't a God. Your belief is entirely irrelevant, and an intelligent person would not settle for faith, ever. Any other method of thought falls short of a legitimate ideology.

[vasniltere]

I do not agree.. but of course, I can see from the way you have stated things here, you will not be swayed since you already think you have it figured out. So. whatever..

[smudge6699]

@IanEColeman

What about NO thought?

Your second sentence captures the concept of propaganda perfectly.

Indoctrination.

Where is the truth?

[IanEColeman]

I don't even understand this comment. In what way does my second sentence capture the concept of propaganda perfectly? Then you just right indoctrination (good for you). Where is the truth? What does this question mean? Are you asking me if there is a God? If so my answer is more than probably no.

[DanHipp]

If you read what we said we were discussing the efficacy of it, not bashing it.

[Yokailo]

Great idea. ^^

I think stuff like this should be talked about more.. I don't think many people with those kind of diseases know about the site. o-o

[no1sjester]

I shivered at the bluntness of his brother's death.

Sure, he's had a few years for it to gloss over... But... I just couldn't ever view the slow death of a sibling as a gift, no matter how much incentive or publicity I received for a cause or idea.

[bullwhipjesus]

He said in the video that prayer works now which of the thousands of gods out there where they praying to. If they were all praying to different gods that means it is only meditation that helps and not a sky being.

[DanHipp]

@bullwhipjesus He did not suggest that there was a god answering the prayers. He said prayer works. The claim is disputable but you should not misrepresent it.

[nicanicabad]

Oh I've no doubt they are praying. As an atheist, i resent saying that prayer helps. It's not the prayer,--well, it could be the prayer--ie a calmness--but their prayers are not answered.

[DanHipp]

@nicanicabad First, sorry for thumb downing you...didn't mean to. Second, I am an atheist of sorts too, but I am happy that people find a way to help themselves. Placebo effects are what they are - let's not look a gift horse in the mouth. It does suck, though, that the praying will probably be less effective for us! haha

[nicanicabad]

It's fine to mark me down--people who believe will have me invisible in no time so no harm done! Placebo effects are indeed wonderful--and I agree--praying would not work for us. For us we must wish and visualize and hope. I'm not ill btw.

I'll pray i'm not marked down any further lol!

[nicanicabad]

This is fantastic, except for the prayer--should it not be called meditation instead--for OBVIOUS reasons.

[DanHipp]

@nicanicabad No, because if you ask these people, they will plainly tell you they are praying not meditating.

[polleywong]

I love the idea and the ACTION that they've took. It reminds me that one simple thought could be priceless when you actually DO something about it. Also, I truely believe that we were created to have connections with others. I wish them the best, and maybe, I'll have a chance to use the system myself in the future. Who knows.

[proatheism]

Great innovation.

[planetdarwin]

I like the idea of getting data out there. Though I do wonder if this project accounts for the reality of feedback loops... which is peole going to the site, seeing trends, and then having those trends consciously or unconsciously impact their view of the data they submit later.

[rodrigo3hm]

You put the data, so privacy its not violated. You know what to put. Like any other social network, but focused on health. Congratulations. Good idea.

[BallinTrollin]

HOW ABOUT WEED. People who need to consume thc everyday!

[KnightsofEmerald]

wow, genius! This will change the world.

[BrutusAlbion]

sadly no, while it is a brilliant idea. it will break all privacy laws and it will never pass the legal system. Just imagine what happends when all those politiicians and people in power have to admit they are taking prozac or other kinds of mentaly instabile drugs. It's their ass which is on the line and its more important than your healthcare. Besides they have the money to pay for whatever they need, u just need to take it down a notch and accept ur place as a lackey.

[Durgles]

Except that this is an optional service, which means the privacy laws that you're referring to don't apply.  Good try though!

[KnightsofEmerald]

Yes! I agree it should never be obligatoryl, then BrutusAlbion would be right.

If ever I get sick, or take meds, i will for sure due my part.

[thisisyourtest]

@BrutusAlbion

This site is for people who are very sick not the kind of people you are referring to. As for most of the comments I've read, you are idots!! Get a life and leave these poor suffering people alone.

[BrutusAlbion]

@thisisyourtest

wow wow wow man I realise that my original point was invalid because the organisation is free and people owned. However my concerns were that if this was institutionalized for companies it would break tonnes of privacy and ethical issues. I hope you can understand that much.

[thisisyourtest]

@BrutusAlbion

This site is for people who are very sick not the kind of people you are referring to. As for most of the comments I've read, you are idots!! Get a life and leave these poor suffering people alone.

[WunderMaus]

Nod to James Burke... an elegant adaptation to "connections" - ( check out Burke's k-web "knowledge web" ) - well done, Jamie.

[0Krusnik0]

This needs to be done for a lot of disorders and on a massive scale to get data.

[SilentSnipest]

This is an amazing advancement for medicine. Include more diseases and this will revolutionize everything.

[SuperHiDef99]

Don't doctors already have these kinds of statistics and are able to recommend the best treatment? Without the pretty graphics ofcourse. This is dangerous you don't want your medical information public, it will be mirrored by whatever spam sites and it will affect you for many years into the future.

[Brandonduboff]

This kind of organization and consolidation can completely change the way medical care is looked at.

[Kotonargro]

Its going to be on Flash, guess you can't get on it on your iPad.

[vasniltere]

fo sho.. lol

[roidroid]

are you paid to mention that device?

[kupu2pagi]

this is amazing

[Poisonfrogg]

this is pretty wicked ^_^

[sugarkang]

He earns money doing this stuff. Not saying that his work is not meaningful. Just saying that this is most definitely not a philanthropic endeavor like he's making it sound.

[PeeeU]

I can image one day people will have something similar to this for their medical records.

[Hamesjayward]

Haha wicked my names James Hayward.

[HiAdrian]

That's pretty wicked mate!

[xr0]

I feel kinda bad for the people that are blind/have bad sight that won't be able to use the new version of your platform. Shame, isn't it?

[xr0]

Actually, nevermind me. He never said the parts of the website where the patient inserts their "status" is made with flash.

[awesomeSkins]

@xr0 so r u saying he shouldnt have made it at all then, just because of that. You cant treat blindness anyways, mostly

[Poisonfrogg]

@xr0

not really .. you know the have soft ware for blind to run other programs...

[TheReasonWhyGuy]

We're entering into an era, where the information is gathered, far faster than it can be sorted, and processed.... this is what we need

[defect530]

prayer is a placebo.

[Poisonfrogg]

piacebos still work for some people...

[defect530]

@Poisonfrogg that is why they are called placebo's  @@

[Fensterplaetzchen]

I'm against TED-talk titles not stating the subject. Just saying.

[hughtub]

@Fensterplaetzchen Agreed. It comes across as a sensationalist headline rather than a title optimized for searching and letting the viewer decide if it's a subject they are interested in. I almost didn't watch it, but the idea is interesting, health status updates for people with the same disease, helps to find correlations and trends. "The big idea my brother inspired" has no information content.

[roidroid]

yes, we are so used to cynically interpreting sensationalist headlines that we prettymuch read them as "i've got nothing substantial to say, don't bother reading me" and just skip over.

[andresico2]

People that pray do better? Hmm... last time I checked every single study relating health and prayer showed a negative correlation...

[NermalsChannel]

@andresico2 Seems like there'd be a lot of confirmation bias with this site's results for prayer.

[roidroid]

actually no,

BLIND studies of prayer show no difference. (ie: praying for someone to get better, without their knowledge, has no effect)

But non-blind studies of prayer actually show a difference. Which makes sense, if someone is sitting with you wishing for you to get better - it tends to have a psychologically positive effect.

Positive thinking, and the feeling of being cared for. Basically just good bedside manner.

[andresico2]

@roidroid actually no,

Non-blind studies actually showed a difference, but not the one you pointed out. The people that knew they were being prayed for actually got worse.

Surprised? Not really. Do you research first man

[roidroid]

facinating

"[heart bypass] patients who knew that others were praying for them fared worse than those who did not receive such spiritual support, or who did but were not aware of it."

[andresico2]

@roidroid ok champ if you knew how to read you'd realize how stupid you are to have quoted the exact quote that proves you wrong.

Read the first line... read it again, try AGAIN. See? The people who received prayers and knew about them did WORSE.

Good job

[roidroid]

why do you assume i'm disagreeing with you?

please settle down, you will give yourself a stomach ulcer :(

[thegiveproject]

@andresico2 hmmm... that's interesting because I just read a study recently that studied different types of prayer.

Some views of God and prayer certainly had a negative correlation with them, but these were mostly the forms of prayer that associated God as judge of good and bad - aka gulit and shame were associated.

Other forms of prayer, those that viewed God as sustainer and "He who suffers with" to be more precise, showed drastic improvements in people's health. Just food for thought

[andresico2]

@thegiveproject more like shit for thought...

[martysoffice]

the picture of AL Gore in the opening is disturbing

[strandwolf]

If you'd been robbed of the Presidency you might also decide to devote your life to something meaningful.

[LeadPaintSandwich]

damn straight! health care applications should be more sophisticated then stock market applications.

i hope this idea goes far and wide.

[alch3myst]

this is a great idea

[HairyLaser]

FAIL !