39 replies to this topic

[Lazarus Long]

Considering how many of our members like to diagnose and treat themselves as well as share anecdotal information and results I thought you all might find this site valuable, it is called Patients like me.

http://www.patientslikeme.com/

Our Promise

PatientsLikeMe is committed to providing a better, more effective way to capture valuable results and share them with patients, healthcare professionals, and industry organizations that are trying to treat the disease.


About PatientsLikeMe

Founded in 2004 by three MIT engineers whose collective experience spans from running the world's only non-profit biotechnology laboratory to large-scale online commerce applications, PatientsLikeMe is a privately funded company dedicated to making a difference in the lives of patients diagnosed with life-changing diseases. Our personal experiences with ALS (Lou Gehrig's disease) inspired us to create a community of patients, doctors, and organizations that inspires, informs, and empowers individuals. We're committed to providing patients with access to the tools, information, and experiences that they need to take control of their disease.

In 1998, a young carpenter named Stephen Heywood was diagnosed with ALS. The Heywood family began taking charge of Stephen's care, searching the world over for ideas that would extend his life and improve the way he lived. This set in motion a series of events that have led to PatientsLikeMe, a new system of medicine by patients for patients. We're here to give patients the power to control their disease and to share what they learn with others. We're here to help you.

Our goal is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, we've created a platform for collecting and sharing real world, outcome-based patient data (patientslikeme.com) and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits. Contact us if you're interested in working together to achieve our goals.

Our operating costs will be covered by partnerships with healthcare providers that use anonymized data from and permission-based access to the PatientsLikeMe community to drive treatment research and improve medical care. We only share anonymized data with trusted partners and all our patient information is kept safe and secure. For more information, read our privacy policy.

They also post this warning:

© 2005-2008 PatientsLikeMe. All Rights Reserved. Information on PatientsLikeMe.com does not constitute medical advice.

I advise everyone here to remember that is true for what you read at Imminst too.

That is a site which has features we might emulate a little if the community here feels that it provides a valuable service but I encourage everyone to contribute there because the information gets correlated and compared, then that helps determine what is just anecdotal versus where further study might be immediately warranted.

[lunarsolarpower]

That looks like it will become a powerful tool for improving treatment and management of diseases. Hopefully hundreds of thousands of people will become active users.

[lucid]

I haven't checked out the forum part of the website, but the page for each sup/med is pretty nice. Each displays the reason that the med is taken, the number of people that liked/didn't like it, and the average duration taken. However, while interesting, I didn't feel that I learned much or would feel more comfortable taking any of the meds I looked up. Very interesting idea though.

[lynx]

Great find, thank you.

[Lazarus Long]

Thank you Lynx. I should mention to everyone that there are specific categories now to join on many subjects that clearly overlap interests shown by members here but also they allow the participants to create their own interest groups and that means this data base will grow considerably in quantity and quality.

I am not sure but I also think results are open source and thus useful to many researchers.

[Lazarus Long]

I was reading some ofht esubmissions by our members and noted this site that also collects user experience and shares it.

The Erowid Experience Vaults

The new Experience Vaults include a system for reviewing, categorizing, and then re-reviewing each experience that is entered with trained and knowledgeable volunteers reading each report and evaluating each one for interest, quality, credibility, and focus on effects or outcomes. Each report is then organized by substance (or non-substance category), primary category, and a number of secondary categories by which they can be sorted and filtered for viewing.

This site is the is less scientific than the original subject of this thread but the methodology overlaps. The information could be very useful.

Also the site tends to focus on psychoactive substances and user expereince. This can upset some people but I think it will help more people than it could hurt.

The cultural taboos and prohibitions against the use of psychoactives have unfortunately obstructed the collection of information about the extremely widespread use of these substances and we hope visitors will find our work helpful in studying the complex relationship between humans and psychoactive plants and drugs.

[Mind]

This is and idea I have been thinking about for some time now as a major Imminst initiative. The only stumbling block is legal liability. That is it. Members who are lawyers...any idea on how to offer medical/health/treatment information while also having IRON-CLAD lawsuit protection?

A good name (that could create buzz in today's world) is "Open Source Medicine" (or not as good "Community Health"). "Open Source Medicine" has already been used in some instances but mainly for medical records nothing else.

Having a community of users to offer help in diagnosis and treatment options is something concrete that Imminst already does to a tiny extent. It is something grant-worthy, like big money grants from the Gates foundation or other charity. It also fulfills the mission of the Institute. Now in order to attract grant money, we would probably need to change the name of the Institute and that is being discussed here.

So I am all for this, just need to avoid lawsuits.

[lucid]

This is and idea I have been thinking about for some time now as a major Imminst initiative. The only stumbling block is legal liability. That is it. Members who are lawyers...any idea on how to offer medical/health/treatment information while also having IRON-CLAD lawsuit protection?

A good name (that could create buzz in today's world) is "Open Source Medicine" (or not as good "Community Health"). "Open Source Medicine" has already been used in some instances but mainly for medical records nothing else.

Having a community of users to offer help in diagnosis and treatment options is something concrete that Imminst already does to a tiny extent. It is something grant-worthy, like big money grants from the Gates foundation or other charity. It also fulfills the mission of the Institute. Now in order to attract grant money, we would probably need to change the name of the Institute and that is being discussed here.

So I am all for this, just need to avoid lawsuits.

Well I have been wanting to have a medical forum for some time. It's main function would be to post news about new drugs and clinical practices. Further, It would be appropriate to have some threads focusing on a particular ailment and then review some medicines which could help to treat said problem.

I think that if we were to do this, then we would have to be careful to avoid suggesting that people self medicate. Hopefully the forum would be used as a way for people to inform themselves and make suggestions to their doctors. There is however some merky water in the case of very safe drugs where self medication without the supervision of a doctor might not be irresponsible, however that may still be a liability to us.


I have lots of medical news that I want to post and discuss. Wish i had a forum in which to do so.

[Mind]

Just another review of the "self-medicating" sites that are proliferating

Tursera.com

Daily Strength

Caring.com

Now obviously all of these sites must have to deal with liability issues, yet their "terms of use" agreements all look pretty standard. I wonder if they have any kind of liability insurance. Anyone have any idea?

Also, it might be good for Imminst to make itself known to these "communities" since we have a lot of good information here.

[jerryflower]

It is a great effort for the patients, to provide such type of information, which they highly required. I hope organization will success in his aim. It will become so useful for the patients.

_____________________________________________________________
jerry
[url="http://www.treatmentcenters.org/idaho"rel="dofollow"]Idaho Treatment Centers[/url]

[Mind]

More good news in this realm.

I am still wondering how these sites handle liability. Maybe if these medical information sharing sites proliferate a bit more, then it will become easier to avoid lawsuits. I suspect all it will take is one lawsuit to shut everything down for awhile.

Unfortunately, some states such as California and New York are trying to prevent or control citizen access to health information. I don't think they will succeed but it will slow things down.

But paging Dr. Google can lead patients to miss a rich lode of online resources that may not yield to a simple search. Sometimes just adding a word makes all the difference. Searching for the name of a certain cancer will bring up the Wikipedia entry and several information sites from major hospitals, drug companies and other providers. Add the word “community” to that search, Ms. Fox said, and “it’s like falling into an alternate universe,” filled with sites that connect patients.

As a result, said Dr. Ted Eytan, medical director for delivery systems operations improvement at the Permanente Federation, “patients aren’t learning from Web sites — they’re learning from each other.” The shift is nothing less than “the democratization of health care,” he went on, adding, “Now you can become a national expert in your bedroom.”

These expanded capabilities allow people to share information easily, upending the top-down path of information between doctors and patients. Today, said Clay Shirky, an expert in the evolving online world, patients are “full-fledged actors in the system.”

[eternaltraveler]

we medical establishment types like our monopoly

[thefirstimmortal]

This is and idea I have been thinking about for some time now as a major Imminst initiative. The only stumbling block is legal liability. That is it. Members who are lawyers...any idea on how to offer medical/health/treatment information while also having IRON-CLAD lawsuit protection?
NO!!!

A good name (that could create buzz in today's world) is "Open Source Medicine" (or not as good "Community Health"). "Open Source Medicine" has already been used in some instances but mainly for medical records nothing else.

Having a community of users to offer help in diagnosis and treatment options is something concrete that Imminst already does to a tiny extent. It is something grant-worthy, like big money grants from the Gates foundation or other charity. It also fulfills the mission of the Institute. Now in order to attract grant money, we would probably need to change the name of the Institute and that is being discussed here.

So I am all for this, just need to avoid lawsuits.

Members can discuss advise share and generally do anythhing in this area, but once you as an organization start offering medical/health/treatment information/diagnosis, you're far more likely to draw more attention from the FDA than you are a grant. It's one thing if Missminni, Lucid, Maxwatt, Mixter and everyone else offers personal advice. Different ballgame if lminst offers it. Besides, you'll all fight about what advice should be given.

[thefirstimmortal]

Well I have been wanting to have a medical forum for some time. It's main function would be to post news about new drugs and clinical practices. Further, It would be appropriate to have some threads focusing on a particular ailment and then review some medicines which could help to treat said problem.

I think that if we were to do this, then we would have to be careful to avoid suggesting that people self medicate. Hopefully the forum would be used as a way for people to inform themselves and make suggestions to their doctors. There is however some merky water in the case of very safe drugs where self medication without the supervision of a doctor might not be irresponsible, however that may still be a liability to us.


I have lots of medical news that I want to post and discuss. Wish i had a forum in which to do so.

Just start a thread and post what you want to post. As an idividual you can do that, no liability attaches. You can even suggest that people self medicate.

[Mind]

All I envision is Imminst providing the forum structure (meeting place) for people who want to discuss medical treatments, conventional or alternative....not actually providing or endorsing the advice as an organization. But even just providing a "place to talk" and organizing the effort can be construed as official support (I think, or I am at least paranoid).

Members already dispense advice, I was just thinking about organizing it a bit more (integrating things with the wiki, for example) so it would be more helpful to members and the public at large.

[thefirstimmortal]

Having a community of users to offer help in diagnosis and treatment options is something concrete that Imminst already does to a tiny extent. It is something grant-worthy, like big money grants from the Gates foundation or other charity. It also fulfills the mission of the Institute. Now in order to attract grant money, we would probably need to change the name of the Institute and that is being discussed here.

All I envision is Imminst providing the forum structure (meeting place) for people who want to discuss medical treatments, conventional or alternative....not actually providing or endorsing the advice as an organization. But even just providing a "place to talk"

That would be a remarkable if somewhat redundant achievement, the meeting place already exist, people are self-assembling this all without “official support” or assistance. They have a place to talk, have been talking and will continue to talk.

There are already self-assembled efforts here. Have you checked out the amazing efforts of the Res community, they have assembled what I believe is the planets foremost Res community, all without Imminst help. I don’t see them asking for “official support” or “assistance” and I just use them as one of many examples.

Are you sure this isn’t more about getting grant money?

Members already dispense advice, I was just thinking about organizing it a bit more

Organizing it, or controlling and capitalizing on it? Or am I be paranoid?

[Mind]

Or am I be paranoid?

Yes

[thefirstimmortal]

POSTED UNDER THE THREAT OF CENSORSHIP

Or am I be paranoid?

Yes

Really, well just keep in Mind, I’m a true blue Libertarian so chasing dollars or words like “profit” aren’t dirty words in my vocabulary.

[Mind]

Medpedia to open at the end of 2008. Yay!

Medpedia is the collaborative project to collect the best information about health, medicine and the body and make it freely available worldwide.

[Mind]

we medical establishment types like our monopoly

Being a "bad patient" can save your life.

In his books "It's Only Temporary," and "Time on Fire," Handler wrote that during his months in the hospital, he was given intravenous drugs that were supposed to go to another patient, that nurses tried to give him medications his doctors had forbidden for him and that staff members refused to follow the hospital's posted hygiene precautions for immunosuppressed patients like himself.

Cohen: You describe your first doctor as being nasty, hostile and disrespectful. He yelled at your father for calling him on the phone with a question about your care. He yelled at you when you were in the middle of chemotherapy and came to see him with a rash and a fever because the fever was only 100 degrees. Did you wait too long to fire him?
Health Library

Handler: Oh, yeah. Doctors had told me that I would be endangering my care if I switched doctors, but that advice was criminal. Look, the only way to change things is through the marketplace. Recently I needed to have something in my mouth looked at. The doctor performed a biopsy without lidocaine -- just put a blade in my mouth and cut without telling me. I never went back, and I wrote him a three-page letter. You should leave a bad doctor, and if you have the energy, tell them why you left.

[Mind]

More people calling for online health collaboration

The problem, according to Shirky, is that we are overestimating the value of individuals accessing information, and underestimating groups collaborating.

"Patients in aggregate behave very differently than when solo," Shirky explained today. "Think about what you do when you get a bad diagnosis - you fire up Google, find out who has what you have, and then talk to them. That ability, for patients to pool their resources, is a massive change to the health industry."

[Mind]

Top 50 health blogs

Great list, however, missing one of the best - the Immortality Institute.

[Heliotrope]

Top 50 health blogs

Great list, however, missing one of the best - the Immortality Institute.

yeah i get lots of health and science news from imminst, which covers quite a broad range, unlike some of the other narrow and focused blogs.

there's a blog sectin here too but it doesn't do nearly as well as the forums. wasn't there a mobius award of $100 to best blogs on imminst?

maybe each member can take up a specific topic of interest..

[Shepard]

maybe each member can take up a specific topic of interest..

I kind of like this idea. The blogs are dead, this would at least help give a narrow focus to each one.

[Mind]

Another list of blogs - top 100 healthcare blogs, as ranked by search engine hit and other web metrics. Fight Aging checks in at 93. Eades is at 64. Some of the other top blogs were not that great - just somehow had high page rank. I like CATO (#8) but they only cover health care policy from time-to-time. Biosingularity has promise. Interesting entry from the diet blog how much food is in 100 calories.

[Mind]

Rareshare.org

While rare disorders seem to impact only a small portion of the population, together they affect over 30 million people in the United States and Europe. Due to the comparably low level of occurrences of individual rare disorders, there is often a lack of information and support for patients and their families. We're working to change this.

[Mind]

Another web resource in the "heal thyself" category.

Healing food reference compiled by Health Ranger.

Multiple lists of what foods might help with what illnesses. Basically, you are going to be healthier if you eat a lot of the foods listed on the reference page.

[Mind]

Guidemed.com

Another site that guides users through a list of symptoms and then suggests potential reasons for those symptoms.

I can't really judge how accurate it is. Scant details on who compiled the database of questions.

[Mind]

Querycat FAQ about common medical conditions/diseases.

iMedisearch - claims to be a source of medical information from "reputable" sources.

[Mind]

Dlife - Diabetes resource website. Comprehensive information and help for managing diabetes.