Powerful website for Ataxia and more

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Permalink Reply by Patsy on December 23, 2011 at 5:03am

no mention of ataxia though

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Permalink Reply by Sentient SF on December 23, 2011 at 1:10pm

it is not made for any 1 disease and is more expansive, and you will find we have people with Ataxia there.

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Permalink Reply by Tina Cox on December 28, 2011 at 11:28am

Going to have a look tonight :)

Sentient SF said:

it is not made for any 1 disease and is more expansive, and you will find we have people with Ataxia there.

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Permalink Reply by Jeannie Ball on March 10, 2012 at 9:28pm

My real concirn with that site is the tracking. What's to say there won't be health identity theft? I won't use it because it's too detailed, but that's me. I'm married to a Consumer Protection person that works in the DA's office and he is very leary of the site where unknown people can access personal information details.

Sorry, had to add my 2 cents! :0)

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Permalink Reply by Michael Ward on March 10, 2012 at 10:24pm

Once you get used to it you can track yourself.

Really nice site!

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Permalink Reply by Sentient SF on March 10, 2012 at 11:13pm

Jeannie,

I totally understand your concern and how public to make your info. is upto you. Use a different name, etc. It's the data that counts. Keeping it accurate helps the community too.

No-one can really use your identity from it in any way. What's to prevent me from overhearing your name and precription at a Pharmacy and use that?
I think this fear of identity theft is kind of old-school thinking and gets misleading and it is upto you how much to make public about yourself. Granted, one has to be careful and see how the info. is used.

People share intimate details on blogs and google groups and here too and these are more dangerous.

Health-networking can really help create a community, so there is an upside to sharing.

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Permalink Reply by Jeannie Ball on March 11, 2012 at 1:02pm

My thought is, why would I (or anyone for that matter) want to leave myself open by putting details of medical information on any site that has a potential for being hacked or used inappropriately?

A website has no real face or names to it. Like you said you can use any name you want right? It may not have a privacy policy that it may maintain or uphold.  My point is you never really know.  It leaves doubt in your mind and you’re taking a chance.

We should want to limit our exposure to possible ID theft. It’s the number one threat as reported to the Federal Trade Commission.

I have read the privacy policy of the site and it notes the following:

“This Privacy Policy outlines the type of information PatientsLikeMe collects from individuals who have registered to join PatientsLikeMe (“Members”) and how it is shared with other third parties, including, but not limited to, pharmaceutical companies, medical device companies, non-profits, and research institutions (“Partners”).”

“PatientsLikeMe, like most Internet communities, is a public forum (emphasis added), and Members acknowledge and accept that any information shared through free text or images might be connected to Members’ Shared Data (which may be shared with, sold to, or displayed for others).”

“In the event PatientsLikeMe goes through a business transition, such as a merger, acquisition by another organization, or sale of all or a portion of its assets, the Shared Data and Restricted Data, including Personal Information, might be among the assets transferred.”

Persons using the site should also read the heading “Risks and Benefits.” See the entire Privacy Policy at  http://www.patientslikeme.com/about/privacy by clicking on the highlighted link.

It (we) should be clear and transparent that when we recommend a site to join that we fully disclose its inherent risks, benefits, and if there is any chance that participants in the open and public forum created by the site leaves participants vulnerable to potential ID theft or they might share with parties, unknown to them, information that is personal and confidential.

To join or not to join, to share and what to share is a matter of personal choice and each person must weigh their options and whether the benefits outweigh the risks.

 

 

Sentient SF said:

Jeannie,

I totally understand your concern and how public to make your info. is upto you. Use a different name, etc. It's the data that counts. Keeping it accurate helps the community too.

No-one can really use your identity from it in any way. What's to prevent me from overhearing your name and precription at a Pharmacy and use that?
I think this fear of identity theft is kind of old-school thinking and gets misleading and it is upto you how much to make public about yourself. Granted, one has to be careful and see how the info. is used.

People share intimate details on blogs and google groups and here too and these are more dangerous.

Health-networking can really help create a community, so there is an upside to sharing.

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Permalink Reply by Iain Stevenson on March 11, 2012 at 1:10pm

I agree with you Jeannie

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ModeratorPermalink Reply by Scott Orn on March 13, 2012 at 1:51am

I like the PatientsLikeMe concept but it's impossible to know what they are doing with that data. Personally, I would cautious as it could be sold without users knowledge.

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Permalink Reply by Michael Ward on March 15, 2012 at 10:51pm

Sentient how come you don't maintain your charts?

I appreciate the encouragement however shouldn't you also participate?

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Permalink Reply by Sentient SF on March 18, 2012 at 7:12am

I do maintain my medication and mood there and also use an excel spreadsheet because I track much more data than they do. Also, look in the forum for Ataxia thread, which I had started

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Permalink Reply by Michael Ward on March 18, 2012 at 1:23pm

Senteint it is a cool site for sure!

It seems that the ATAXIA community is falling victim to the doubting Thomas society?

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