RE: C.A.S.T. Group Data Spreadsheet

[Guest guest]

I really don't think this is such a good idea. I am not going to post Madison's for privacy reasons. I don't think we should compare our children and their results or lack there of. It's not fair to your child, his or her treatment team, or yourself. While it's nice to have some ideas of what to expect, this just isn't right in my opinion. I think if you're wanting info on what to expect you can go to the www.infantilescoliosis.org web site and go to the stories section. I am also cuious if knows about this. I don't think she would sanction this for HIPPA reasons. Jenmosunshinebaby <mosunshinebaby@...> wrote: Hi Everyone!!So here's an official post on the Spreadsheet we have set up for our children & each

of their personal (unique) cases of scoliosis, it contains columns for information on their location of curve, initial degree measurements, ages, casting measurements, etc.. All of these questions I have SO redundantly had to ask people since beginning our scoliosis casting journey in Dec. I had thought at times before that a spreadsheet would be helpful for comparison purposes but never acted on it until I saw some posts here by people mentioning the same thing.SO, all you have to do is click on the "Links" section to the left here, click on the folder titled C.A.S.T. Group Data Spreadsheet (To Add/Edit Personal Info.) and there is a link along with directions on how to get your info. in. Again, it will probably take you less than 5 min. so if you get a chance please do, it will certainly benefit a lot of people I'm sure!Your final step in the short process is posting (on this site) a post titled

CAST GROUP DATA and in that post you will include the user name you used to register on the spreadsheet site, I'll then add you as an editor and you will receive an e-mail confirmation with the link to the spreadsheet giving you access to add & edit.(There is also a VIEWING ONLY folder/ & Link to the spreadsheet for all users to have a quick access to it at all times.)And don't hesitate to post with any questions... the idea is to have as many people involved in this as possible, I think it will be so useful!!-Joy

Relax. virus scanning helps detect nasty viruses!

[Guest guest]

I simply created it per some suggestions (, Jen, ,

Deshea I believe?) I don't see anything wrong w/it, the stories on

infantilescoli. site are limited, granted each individual case is

different but again, I've asked those questions an uncountable # of

times to people & to me it seems useful to have the answers in a

quick reference format, especially for those who talk on a regular

basis and want to update their childs casting info. for their (CAST

Group friends) to view. Definitely understand if you don't want to

post your info. & if sees it as a problem or anybody else

then it's easily remediable!!

-Joy

> Hi Everyone!!

>

> So here's an official post on the Spreadsheet we have set up for

our

> children & each of their personal (unique) cases of scoliosis, it

> contains columns for information on their location of curve,

initial

> degree measurements, ages, casting measurements, etc.. All of

these

> questions I have SO redundantly had to ask people since beginning

> our scoliosis casting journey in Dec. I had thought at times

before

> that a spreadsheet would be helpful for comparison purposes but

> never acted on it until I saw some posts here by people mentioning

> the same thing.

>

> SO, all you have to do is click on the " Links " section to the left

> here, click on the folder titled C.A.S.T. Group Data Spreadsheet

(To

> Add/Edit Personal Info.) and there is a link along with directions

> on how to get your info. in. Again, it will probably take you

less

> than 5 min. so if you get a chance please do, it will certainly

> benefit a lot of people I'm sure!

>

> Your final step in the short process is posting (on this site) a

> post titled CAST GROUP DATA and in that post you will include the

> user name you used to register on the spreadsheet site, I'll then

> add you as an editor and you will receive an e-mail confirmation

> with the link to the spreadsheet giving you access to add & edit.

>

> (There is also a VIEWING ONLY folder/ & Link to the spreadsheet for

> all users to have a quick access to it at all times.)

>

> And don't hesitate to post with any questions... the idea is to

have

> as many people involved in this as possible, I think it will be so

> useful!!

>

> -Joy

>

>

>

>

>

>

>

[Guest guest]

I for one LIKE it! If you don't agree with it or like it, don't look at it or post your child's results. I don't necessarily look at it to compare my child against other children. I like it because I'm always asking everyone over and over again, there child's numbers. We are all in the same boat here, and I see nothing wrong with a chart sharing our kiddos progress and results. If HIPPA becomes an issue, we'll just have to come up with a form to sign if you are willing to post numbers, but is that really necessary? I'm not trying to be mean/rude, but I think it's a great idea. Besides, I don't care if Cole's info. is private or public. He is a super kid with or without scoli and I want everyone to know.mosunshinebaby <mosunshinebaby@...> wrote: I simply creatit per some suggestions (, Jen, ,

Deshea I believe?) I don't see anything wrong w/it, the stories on infantilescoli. site are limited, granted each individual case is different but again, I've asked those questions an uncountable # of times to people & to me it seems useful to have the answers in a quick reference format, especially for those who talk on a regular basis and want to update their childs casting info. for their (CAST Group friends) to view. Definitely understand if you don't want to post your info. & if sees it as a problem or anybody else then it's easily remediable!! -Joy > Hi Everyone!! > > So here's an official post on the Spreadsheet we have set up for our > children & each of their personal (unique) cases of scoliosis, it > contains columns for information on their location of curve, initial > degree measurements, ages, casting measurements, etc.. All of these > questions I have SO redundantly had to ask people since beginning > our

scoliosis casting journey in Dec. I had thought at times before > that a spreadsheet would be helpful for comparison purposes but > never acted on it until I saw some posts here by people mentioning > the same thing. > > SO, all you have to do is click on the "Links" section to the left > here, click on the folder titled C.A.S.T. Group Data Spreadsheet (To > Add/Edit Personal Info.) and there is a link along with directions > on how to get your info. in. Again, it will probably take you less > than 5 min. so if you get a chance please do, it will certainly > benefit a lot of people I'm sure! > > Your final step in the short process is posting (on this site) a > post titled CAST GROUP DATA and in that post you will include the > user name you used to register on the spreadsheet site, I'll then > add you as an editor and you will receive an

e-mail confirmation > with the link to the spreadsheet giving you access to add & edit. > > (There is also a VIEWING ONLY folder/ & Link to the spreadsheet for > all users to have a quick access to it at all times.) > > And don't hesitate to post with any questions... the idea is to have > as many people involved in this as possible, I think it will be so > useful!! > > -Joy > > > > > > >

[Guest guest]

I agree, there's nobody in the world I would mind seeing our info.

And it's not so much about comparing children's results (or as you

said Jen, lack there of) I would never dream of viewing it in a

competitive way and can't imagine anyone else would either. Rather

than seeing the " lack there of " I think more than anything the

positive results are what would stand out more to people &

potentially even give hope, even if the ratio of kids getting

successful correction is 1:10, I personally would think.. GREAT!

There can be positive outcomes in this! (Which is what I'm

thinking/feeling now after having gotten a lot of people's child's

individual #'s and when they were what they were, how, etc..

individually, however cumbersome or time consuming it may have

been). It's a quick reference is all it is, certainly not taking

away the fact that each case & child is different, that certainly

goes without saying!!

> > Hi Everyone!!

> >

> > So here's an official post on the Spreadsheet we have set up

for

> our

> > children & each of their personal (unique) cases of scoliosis,

it

> > contains columns for information on their location of curve,

> initial

> > degree measurements, ages, casting measurements, etc.. All of

> these

> > questions I have SO redundantly had to ask people since

beginning

> > our scoliosis casting journey in Dec. I had thought at times

> before

> > that a spreadsheet would be helpful for comparison purposes but

> > never acted on it until I saw some posts here by people

mentioning

> > the same thing.

> >

> > SO, all you have to do is click on the " Links " section to the

left

> > here, click on the folder titled C.A.S.T. Group Data

Spreadsheet

> (To

> > Add/Edit Personal Info.) and there is a link along with

directions

> > on how to get your info. in. Again, it will probably take you

> less

> > than 5 min. so if you get a chance please do, it will certainly

> > benefit a lot of people I'm sure!

> >

> > Your final step in the short process is posting (on this site)

a

> > post titled CAST GROUP DATA and in that post you will include

the

> > user name you used to register on the spreadsheet site, I'll

then

> > add you as an editor and you will receive an e-mail

confirmation

> > with the link to the spreadsheet giving you access to add &

edit.

> >

> > (There is also a VIEWING ONLY folder/ & Link to the spreadsheet

for

> > all users to have a quick access to it at all times.)

> >

> > And don't hesitate to post with any questions... the idea is to

> have

> > as many people involved in this as possible, I think it will be

so

> > useful!!

> >

> > -Joy

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I agree with . I am always pestering other people with repeatedly asking cobb/rvad/ rotation numbers. It's all info we post anyway, but just more conveniently put together. We could leave off last names to make it "safer" although I think my name comes through with my emails anyway. I definitely don't compare numbers in a competitive way either. I know some curves are stiffer and take longer to correct and others that are super flexible and bounce back out of cast and then there are kiddos who might respond super fast to treatment. But, if doesn't want it up in the links section, I don't see why we couldn't each just add it to our personal favorites/bookmark. That's where I access it anyway.

Noelle (12-2-01)Ian (8-15-04)

Re: Re: C.A.S.T. Group Data Spreadsheet

I for one LIKE it! If you don't agree with it or like it, don't look at it or post your child's results. I don't necessarily look at it to compare my child against other children. I like it because I'm always asking everyone over and over again, there child's numbers. We are all in the same boat here, and I see nothing wrong with a chart sharing our kiddos progress and results. If HIPPA becomes an issue, we'll just have to come up with a form to sign if you are willing to post numbers, but is that really necessary? I'm not trying to be mean/rude, but I think it's a great idea. Besides, I don't care if Cole's info. is private or public. He is a super kid with or without scoli and I want everyone to know.mosunshinebaby <mosunshinebaby@...> wrote:

I simply creatit per some suggestions (, Jen, , Deshea I believe?) I don't see anything wrong w/it, the stories on infantilescoli. site are limited, granted each individual case is different but again, I've asked those questions an uncountable # of times to people & to me it seems useful to have the answers in a quick reference format, especially for those who talk on a regular basis and want to update their childs casting info. for their (CAST Group friends) to view. Definitely understand if you don't want to post your info. & if sees it as a problem or anybody else then it's easily remediable!!-Joy> Hi Everyone!!> > So here's an official post on the Spreadsheet we have set up for our > children & each of their personal (unique) cases of scoliosis, it > contains columns for information on their location of curve, initial > degree measurements, ages, casting measurements, etc.. All of these > questions I have SO redundantly had to ask people since beginning > our scoliosis casting journey in Dec. I had thought at times before > that a spreadsheet would be helpful for comparison purposes but > never acted on it until I saw some posts here by people mentioning > the same thing.> > SO, all you have to do is click on the "Links" section to the left > here, click on the folder titled C.A.S.T. Group Data Spreadsheet (To > Add/Edit Personal Info.) and there is a link along with directions > on how to get your info. in. Again, it will probably take you less > than 5 min. so if you get a chance please do, it will certainly > benefit a lot of people I'm sure!> > Your final step in the short process is posting (on this site) a > post titled CAST GROUP DATA and in that post you will include the > user name you used to register on the spreadsheet site, I'll then > add you as an editor and you will receive an e-mail confirmation > with the link to the spreadsheet giving you access to add & edit.> > (There is also a VIEWING ONLY folder/ & Link to the spreadsheet for > all users to have a quick access to it at all times.)> > And don't hesitate to post with any questions... the idea is to have > as many people involved in this as possible, I think it will be so > useful!!> > -Joy> > > > > > >

[Guest guest]

I agree with . I am always pestering other people with repeatedly asking cobb/rvad/ rotation numbers. It's all info we post anyway, but just more conveniently put together. We could leave off last names to make it "safer" although I think my name comes through with my emails anyway. I definitely don't compare numbers in a competitive way either. I know some curves are stiffer and take longer to correct and others that are super flexible and bounce back out of cast and then there are kiddos who might respond super fast to treatment. But, if doesn't want it up in the links section, I don't see why we couldn't each just add it to our personal favorites/bookmark. That's where I access it anyway.

Noelle (12-2-01)Ian (8-15-04)

Re: Re: C.A.S.T. Group Data Spreadsheet

I for one LIKE it! If you don't agree with it or like it, don't look at it or post your child's results. I don't necessarily look at it to compare my child against other children. I like it because I'm always asking everyone over and over again, there child's numbers. We are all in the same boat here, and I see nothing wrong with a chart sharing our kiddos progress and results. If HIPPA becomes an issue, we'll just have to come up with a form to sign if you are willing to post numbers, but is that really necessary? I'm not trying to be mean/rude, but I think it's a great idea. Besides, I don't care if Cole's info. is private or public. He is a super kid with or without scoli and I want everyone to know.mosunshinebaby <mosunshinebaby@...> wrote:

I simply creatit per some suggestions (, Jen, , Deshea I believe?) I don't see anything wrong w/it, the stories on infantilescoli. site are limited, granted each individual case is different but again, I've asked those questions an uncountable # of times to people & to me it seems useful to have the answers in a quick reference format, especially for those who talk on a regular basis and want to update their childs casting info. for their (CAST Group friends) to view. Definitely understand if you don't want to post your info. & if sees it as a problem or anybody else then it's easily remediable!!-Joy> Hi Everyone!!> > So here's an official post on the Spreadsheet we have set up for our > children & each of their personal (unique) cases of scoliosis, it > contains columns for information on their location of curve, initial > degree measurements, ages, casting measurements, etc.. All of these > questions I have SO redundantly had to ask people since beginning > our scoliosis casting journey in Dec. I had thought at times before > that a spreadsheet would be helpful for comparison purposes but > never acted on it until I saw some posts here by people mentioning > the same thing.> > SO, all you have to do is click on the "Links" section to the left > here, click on the folder titled C.A.S.T. Group Data Spreadsheet (To > Add/Edit Personal Info.) and there is a link along with directions > on how to get your info. in. Again, it will probably take you less > than 5 min. so if you get a chance please do, it will certainly > benefit a lot of people I'm sure!> > Your final step in the short process is posting (on this site) a > post titled CAST GROUP DATA and in that post you will include the > user name you used to register on the spreadsheet site, I'll then > add you as an editor and you will receive an e-mail confirmation > with the link to the spreadsheet giving you access to add & edit.> > (There is also a VIEWING ONLY folder/ & Link to the spreadsheet for > all users to have a quick access to it at all times.)> > And don't hesitate to post with any questions... the idea is to have > as many people involved in this as possible, I think it will be so > useful!!> > -Joy> > > > > > >

[Guest guest]

Hello all,

I really appreciate all of your views on the C.A.S.T data spreadsheet.

Unfortunately, ISOP and C.A.S.T is unable to sanction this type of

spreadsheet.

Honestly, I have wanted to compile a group spreadsheet for a few years,

but cannot. Due to strict HIPAA laws/reg's. Sadly, this is a clear

violation of federal HIPAA law.

ISOP is very involved in doing an official, research based project, with

orthopaedic professionals.....So rest assured, no data will be lost.

Bottom line, we must do our best to ensure that federal law is not

broken/compromised, at any time....If a spreadsheet like this was

developed/passed around, we would be putting ISOP, and the early treatment

message in jeopardy.

I realize that this spreadsheet was developed by Joy, due to members

request....This would definately make it easier for us to track the

progress of other children...Who we have all grown to care for,,,, but

this is not a safe way to go about it....I wish it could be this easy, but

it truly is not. This HIPAA stuff is tricky business. T

We can still communicate via phone and internet, we just cant post info on

a group/public spreadsheet....Even, if releases were signed. Its a lot

more complicated than that, and we cant afford to take chances.

Sorry, I am not passing along the news that most wanted, but my main goal

is to protect ISOP and our work to promote early treatment for our

precious infants/children.

I hope you all understand.

Please check out HIPAA laws/regs on the net.

Sincerely,

HRH

> I really don't think this is such a good idea. I am not going to post

Madison's for privacy reasons. I don't think we should compare our

children and their results or lack there of. It's not fair to your child,

> his or her treatment team, or yourself. While it's nice to have some

ideas of what to expect, this just isn't right in my opinion. I think if

> you're wanting info on what to expect you can go to the

> www.infantilescoliosis.org web site and go to the stories section. I am

also cuious if knows about this. I don't think she would

sanction

> this for HIPPA reasons.

>

> Jen

> mosunshinebaby <mosunshinebaby@...> wrote:

> Hi Everyone!!

>

> So here's an official post on the Spreadsheet we have set up for our

children & each of their personal (unique) cases of scoliosis, it

contains columns for information on their location of curve, initial

degree measurements, ages, casting measurements, etc.. All of these

questions I have SO redundantly had to ask people since beginning our

scoliosis casting journey in Dec. I had thought at times before that a

spreadsheet would be helpful for comparison purposes but

> never acted on it until I saw some posts here by people mentioning the

same thing.

>

> SO, all you have to do is click on the " Links " section to the left here,

click on the folder titled C.A.S.T. Group Data Spreadsheet (To Add/Edit

Personal Info.) and there is a link along with directions on how to get

your info. in. Again, it will probably take you less than 5 min. so if

you get a chance please do, it will certainly

> benefit a lot of people I'm sure!

>

> Your final step in the short process is posting (on this site) a post

titled CAST GROUP DATA and in that post you will include the user name you

used to register on the spreadsheet site, I'll then add you as an editor

and you will receive an e-mail confirmation with the link to the

spreadsheet giving you access to add & edit.

>

> (There is also a VIEWING ONLY folder/ & Link to the spreadsheet for all

users to have a quick access to it at all times.)

>

> And don't hesitate to post with any questions... the idea is to have as

many people involved in this as possible, I think it will be so useful!!

>

> -Joy

>

>

>

>

>

>

>

[Guest guest]

It's a shame that the laws are so strict, but I totally understand...we definitely wouldn't want to compromise ISOP and the wonderful work you have been doing .

Noelle (12-2-01)Ian (8-15-04)

Re: C.A.S.T. Group Data Spreadsheet

Hello all,I really appreciate all of your views on the C.A.S.T data spreadsheet. Unfortunately, ISOP and C.A.S.T is unable to sanction this type ofspreadsheet.Honestly, I have wanted to compile a group spreadsheet for a few years,but cannot. Due to strict HIPAA laws/reg's. Sadly, this is a clearviolation of federal HIPAA law.ISOP is very involved in doing an official, research based project, withorthopaedic professionals.....So rest assured, no data will be lost.Bottom line, we must do our best to ensure that federal law is notbroken/compromised, at any time....If a spreadsheet like this wasdeveloped/passed around, we would be putting ISOP, and the early treatmentmessage in jeopardy.I realize that this spreadsheet was developed by Joy, due to membersrequest....This would definately make it easier for us to track theprogress of other children...Who we have all grown to care for,,,, butthis is not a safe way to go about it....I wish it could be this easy, butit truly is not. This HIPAA stuff is tricky business. TWe can still communicate via phone and internet, we just cant post info ona group/public spreadsheet....Even, if releases were signed. Its a lotmore complicated than that, and we cant afford to take chances.Sorry, I am not passing along the news that most wanted, but my main goalis to protect ISOP and our work to promote early treatment for ourprecious infants/children.I hope you all understand.Please check out HIPAA laws/regs on the net.Sincerely,HRH> I really don't think this is such a good idea. I am not going to postMadison's for privacy reasons. I don't think we should compare ourchildren and their results or lack there of. It's not fair to your child,> his or her treatment team, or yourself. While it's nice to have someideas of what to expect, this just isn't right in my opinion. I think if> you're wanting info on what to expect you can go to the> www.infantilescoliosis.org web site and go to the stories section. I amalso cuious if knows about this. I don't think she wouldsanction> this for HIPPA reasons.>> Jen> mosunshinebaby <mosunshinebaby@...> wrote:> Hi Everyone!!>> So here's an official post on the Spreadsheet we have set up for ourchildren & each of their personal (unique) cases of scoliosis, itcontains columns for information on their location of curve, initialdegree measurements, ages, casting measurements, etc.. All of thesequestions I have SO redundantly had to ask people since beginning ourscoliosis casting journey in Dec. I had thought at times before that aspreadsheet would be helpful for comparison purposes but> never acted on it until I saw some posts here by people mentioning thesame thing.>> SO, all you have to do is click on the "Links" section to the left here,click on the folder titled C.A.S.T. Group Data Spreadsheet (To Add/EditPersonal Info.) and there is a link along with directions on how to getyour info. in. Again, it will probably take you less than 5 min. so ifyou get a chance please do, it will certainly> benefit a lot of people I'm sure!>> Your final step in the short process is posting (on this site) a posttitled CAST GROUP DATA and in that post you will include the user name youused to register on the spreadsheet site, I'll then add you as an editorand you will receive an e-mail confirmation with the link to thespreadsheet giving you access to add & edit.>> (There is also a VIEWING ONLY folder/ & Link to the spreadsheet for allusers to have a quick access to it at all times.)>> And don't hesitate to post with any questions... the idea is to have asmany people involved in this as possible, I think it will be so useful!!>> -Joy>>>>>>>

[Guest guest]

It's a shame that the laws are so strict, but I totally understand...we definitely wouldn't want to compromise ISOP and the wonderful work you have been doing .

Noelle (12-2-01)Ian (8-15-04)

Re: C.A.S.T. Group Data Spreadsheet

Hello all,I really appreciate all of your views on the C.A.S.T data spreadsheet. Unfortunately, ISOP and C.A.S.T is unable to sanction this type ofspreadsheet.Honestly, I have wanted to compile a group spreadsheet for a few years,but cannot. Due to strict HIPAA laws/reg's. Sadly, this is a clearviolation of federal HIPAA law.ISOP is very involved in doing an official, research based project, withorthopaedic professionals.....So rest assured, no data will be lost.Bottom line, we must do our best to ensure that federal law is notbroken/compromised, at any time....If a spreadsheet like this wasdeveloped/passed around, we would be putting ISOP, and the early treatmentmessage in jeopardy.I realize that this spreadsheet was developed by Joy, due to membersrequest....This would definately make it easier for us to track theprogress of other children...Who we have all grown to care for,,,, butthis is not a safe way to go about it....I wish it could be this easy, butit truly is not. This HIPAA stuff is tricky business. TWe can still communicate via phone and internet, we just cant post info ona group/public spreadsheet....Even, if releases were signed. Its a lotmore complicated than that, and we cant afford to take chances.Sorry, I am not passing along the news that most wanted, but my main goalis to protect ISOP and our work to promote early treatment for ourprecious infants/children.I hope you all understand.Please check out HIPAA laws/regs on the net.Sincerely,HRH> I really don't think this is such a good idea. I am not going to postMadison's for privacy reasons. I don't think we should compare ourchildren and their results or lack there of. It's not fair to your child,> his or her treatment team, or yourself. While it's nice to have someideas of what to expect, this just isn't right in my opinion. I think if> you're wanting info on what to expect you can go to the> www.infantilescoliosis.org web site and go to the stories section. I amalso cuious if knows about this. I don't think she wouldsanction> this for HIPPA reasons.>> Jen> mosunshinebaby <mosunshinebaby@...> wrote:> Hi Everyone!!>> So here's an official post on the Spreadsheet we have set up for ourchildren & each of their personal (unique) cases of scoliosis, itcontains columns for information on their location of curve, initialdegree measurements, ages, casting measurements, etc.. All of thesequestions I have SO redundantly had to ask people since beginning ourscoliosis casting journey in Dec. I had thought at times before that aspreadsheet would be helpful for comparison purposes but> never acted on it until I saw some posts here by people mentioning thesame thing.>> SO, all you have to do is click on the "Links" section to the left here,click on the folder titled C.A.S.T. Group Data Spreadsheet (To Add/EditPersonal Info.) and there is a link along with directions on how to getyour info. in. Again, it will probably take you less than 5 min. so ifyou get a chance please do, it will certainly> benefit a lot of people I'm sure!>> Your final step in the short process is posting (on this site) a posttitled CAST GROUP DATA and in that post you will include the user name youused to register on the spreadsheet site, I'll then add you as an editorand you will receive an e-mail confirmation with the link to thespreadsheet giving you access to add & edit.>> (There is also a VIEWING ONLY folder/ & Link to the spreadsheet for allusers to have a quick access to it at all times.)>> And don't hesitate to post with any questions... the idea is to have asmany people involved in this as possible, I think it will be so useful!!>> -Joy>>>>>>>

[Guest guest]

As an attorney who has to deal with HIPPA law daily, I can assure you that it is not a violation for a parent to willingly release data on a child, it is a violation for a doctor, or a healthcare professional. It is no different than a parent choosing to write a story about their child on the ISOP website, it is a personal choice.

E

From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of heather@...Sent: Friday, February 24, 2006 11:47 AMinfantile scoliosis treatment Subject: Re: C.A.S.T. Group Data Spreadsheet

Hello all,I really appreciate all of your views on the C.A.S.T data spreadsheet. Unfortunately, ISOP and C.A.S.T is unable to sanction this type ofspreadsheet.Honestly, I have wanted to compile a group spreadsheet for a few years,but cannot. Due to strict HIPAA laws/reg's. Sadly, this is a clearviolation of federal HIPAA law.ISOP is very involved in doing an official, research based project, withorthopaedic professionals.....So rest assured, no data will be lost.Bottom line, we must do our best to ensure that federal law is notbroken/compromised, at any time....If a spreadsheet like this wasdeveloped/passed around, we would be putting ISOP, and the early treatmentmessage in jeopardy.I realize that this spreadsheet was developed by Joy, due to membersrequest....This would definately make it easier for us to track theprogress of other children...Who we have all grown to care for,,,, butthis is not a safe way to go about it....I wish it could be this easy, butit truly is not. This HIPAA stuff is tricky business. TWe can still communicate via phone and internet, we just cant post info ona group/public spreadsheet....Even, if releases were signed. Its a lotmore complicated than that, and we cant afford to take chances.Sorry, I am not passing along the news that most wanted, but my main goalis to protect ISOP and our work to promote early treatment for ourprecious infants/children.I hope you all understand.Please check out HIPAA laws/regs on the net.Sincerely,HRH> I really don't think this is such a good idea. I am not going to postMadison's for privacy reasons. I don't think we should compare ourchildren and their results or lack there of. It's not fair to your child,> his or her treatment team, or yourself. While it's nice to have someideas of what to expect, this just isn't right in my opinion. I think if> you're wanting info on what to expect you can go to the> www.infantilescoliosis.org web site and go to the stories section. I amalso cuious if knows about this. I don't think she wouldsanction> this for HIPPA reasons.>> Jen> mosunshinebaby <mosunshinebaby@...> wrote:> Hi Everyone!!>> So here's an official post on the Spreadsheet we have set up for ourchildren & each of their personal (unique) cases of scoliosis, itcontains columns for information on their location of curve, initialdegree measurements, ages, casting measurements, etc.. All of thesequestions I have SO redundantly had to ask people since beginning ourscoliosis casting journey in Dec. I had thought at times before that aspreadsheet would be helpful for comparison purposes but> never acted on it until I saw some posts here by people mentioning thesame thing.>> SO, all you have to do is click on the "Links" section to the left here,click on the folder titled C.A.S.T. Group Data Spreadsheet (To Add/EditPersonal Info.) and there is a link along with directions on how to getyour info. in. Again, it will probably take you less than 5 min. so ifyou get a chance please do, it will certainly> benefit a lot of people I'm sure!>> Your final step in the short process is posting (on this site) a posttitled CAST GROUP DATA and in that post you will include the user name youused to register on the spreadsheet site, I'll then add you as an editorand you will receive an e-mail confirmation with the link to thespreadsheet giving you access to add & edit.>> (There is also a VIEWING ONLY folder/ & Link to the spreadsheet for allusers to have a quick access to it at all times.)>> And don't hesitate to post with any questions... the idea is to have asmany people involved in this as possible, I think it will be so useful!!>> -Joy>>>>>>>

[Guest guest]

As an attorney who has to deal with HIPPA law daily, I can assure you that it is not a violation for a parent to willingly release data on a child, it is a violation for a doctor, or a healthcare professional. It is no different than a parent choosing to write a story about their child on the ISOP website, it is a personal choice.

E

From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of heather@...Sent: Friday, February 24, 2006 11:47 AMinfantile scoliosis treatment Subject: Re: C.A.S.T. Group Data Spreadsheet

Hello all,I really appreciate all of your views on the C.A.S.T data spreadsheet. Unfortunately, ISOP and C.A.S.T is unable to sanction this type ofspreadsheet.Honestly, I have wanted to compile a group spreadsheet for a few years,but cannot. Due to strict HIPAA laws/reg's. Sadly, this is a clearviolation of federal HIPAA law.ISOP is very involved in doing an official, research based project, withorthopaedic professionals.....So rest assured, no data will be lost.Bottom line, we must do our best to ensure that federal law is notbroken/compromised, at any time....If a spreadsheet like this wasdeveloped/passed around, we would be putting ISOP, and the early treatmentmessage in jeopardy.I realize that this spreadsheet was developed by Joy, due to membersrequest....This would definately make it easier for us to track theprogress of other children...Who we have all grown to care for,,,, butthis is not a safe way to go about it....I wish it could be this easy, butit truly is not. This HIPAA stuff is tricky business. TWe can still communicate via phone and internet, we just cant post info ona group/public spreadsheet....Even, if releases were signed. Its a lotmore complicated than that, and we cant afford to take chances.Sorry, I am not passing along the news that most wanted, but my main goalis to protect ISOP and our work to promote early treatment for ourprecious infants/children.I hope you all understand.Please check out HIPAA laws/regs on the net.Sincerely,HRH> I really don't think this is such a good idea. I am not going to postMadison's for privacy reasons. I don't think we should compare ourchildren and their results or lack there of. It's not fair to your child,> his or her treatment team, or yourself. While it's nice to have someideas of what to expect, this just isn't right in my opinion. I think if> you're wanting info on what to expect you can go to the> www.infantilescoliosis.org web site and go to the stories section. I amalso cuious if knows about this. I don't think she wouldsanction> this for HIPPA reasons.>> Jen> mosunshinebaby <mosunshinebaby@...> wrote:> Hi Everyone!!>> So here's an official post on the Spreadsheet we have set up for ourchildren & each of their personal (unique) cases of scoliosis, itcontains columns for information on their location of curve, initialdegree measurements, ages, casting measurements, etc.. All of thesequestions I have SO redundantly had to ask people since beginning ourscoliosis casting journey in Dec. I had thought at times before that aspreadsheet would be helpful for comparison purposes but> never acted on it until I saw some posts here by people mentioning thesame thing.>> SO, all you have to do is click on the "Links" section to the left here,click on the folder titled C.A.S.T. Group Data Spreadsheet (To Add/EditPersonal Info.) and there is a link along with directions on how to getyour info. in. Again, it will probably take you less than 5 min. so ifyou get a chance please do, it will certainly> benefit a lot of people I'm sure!>> Your final step in the short process is posting (on this site) a posttitled CAST GROUP DATA and in that post you will include the user name youused to register on the spreadsheet site, I'll then add you as an editorand you will receive an e-mail confirmation with the link to thespreadsheet giving you access to add & edit.>> (There is also a VIEWING ONLY folder/ & Link to the spreadsheet for allusers to have a quick access to it at all times.)>> And don't hesitate to post with any questions... the idea is to have asmany people involved in this as possible, I think it will be so useful!!>> -Joy>>>>>>>

[Guest guest]

Wow, that makes sense to hear. I didn't completely understand how it would be a violation at all, I just can't see how sharing personal info. like that with people could possibly be violating any laws because it's just that... personal. It's your info. to share in a country w/freedom of speech. And as far as it not being fair to Dr.'s & their teams, I as the mother of a patient would personally love to see and know what Dr.'s out there are getting great correction results, not that I had a column on there to even list the patients Dr.'s however, I think that info. should be published. All of these Dr.'s doing early correction are getting good results with growth, it's what brought me here & to Shriner's Hospital for that matter, I would think it would be beneficial for anybody involved with a scoliosis child to see. But anyway, I took the link off this site so it's all good & done!!> > Hi Everyone!!> >> > So here's an official post on the Spreadsheet we have set up for our> children & each of their personal (unique) cases of scoliosis, it> contains columns for information on their location of curve, initial> degree measurements, ages, casting measurements, etc.. All of these> questions I have SO redundantly had to ask people since beginning our> scoliosis casting journey in Dec. I had thought at times before that a> spreadsheet would be helpful for comparison purposes but> > never acted on it until I saw some posts here by people mentioning the> same thing.> >> > SO, all you have to do is click on the "Links" section to the left> here,> click on the folder titled C.A.S.T. Group Data Spreadsheet (To Add/Edit> Personal Info.) and there is a link along with directions on how to get> your info. in. Again, it will probably take you less than 5 min. so if> you get a chance please do, it will certainly> > benefit a lot of people I'm sure!> >> > Your final step in the short process is posting (on this site) a post> titled CAST GROUP DATA and in that post you will include the user name> you> used to register on the spreadsheet site, I'll then add you as an editor> and you will receive an e-mail confirmation with the link to the> spreadsheet giving you access to add & edit.> >> > (There is also a VIEWING ONLY folder/ & Link to the spreadsheet for all> users to have a quick access to it at all times.)> >> > And don't hesitate to post with any questions... the idea is to have> as> many people involved in this as possible, I think it will be so useful!!> >> > -Joy> >> >> >> >> >> >> >

[Guest guest]

Wow, that makes sense to hear. I didn't completely understand how it would be a violation at all, I just can't see how sharing personal info. like that with people could possibly be violating any laws because it's just that... personal. It's your info. to share in a country w/freedom of speech. And as far as it not being fair to Dr.'s & their teams, I as the mother of a patient would personally love to see and know what Dr.'s out there are getting great correction results, not that I had a column on there to even list the patients Dr.'s however, I think that info. should be published. All of these Dr.'s doing early correction are getting good results with growth, it's what brought me here & to Shriner's Hospital for that matter, I would think it would be beneficial for anybody involved with a scoliosis child to see. But anyway, I took the link off this site so it's all good & done!!> > Hi Everyone!!> >> > So here's an official post on the Spreadsheet we have set up for our> children & each of their personal (unique) cases of scoliosis, it> contains columns for information on their location of curve, initial> degree measurements, ages, casting measurements, etc.. All of these> questions I have SO redundantly had to ask people since beginning our> scoliosis casting journey in Dec. I had thought at times before that a> spreadsheet would be helpful for comparison purposes but> > never acted on it until I saw some posts here by people mentioning the> same thing.> >> > SO, all you have to do is click on the "Links" section to the left> here,> click on the folder titled C.A.S.T. Group Data Spreadsheet (To Add/Edit> Personal Info.) and there is a link along with directions on how to get> your info. in. Again, it will probably take you less than 5 min. so if> you get a chance please do, it will certainly> > benefit a lot of people I'm sure!> >> > Your final step in the short process is posting (on this site) a post> titled CAST GROUP DATA and in that post you will include the user name> you> used to register on the spreadsheet site, I'll then add you as an editor> and you will receive an e-mail confirmation with the link to the> spreadsheet giving you access to add & edit.> >> > (There is also a VIEWING ONLY folder/ & Link to the spreadsheet for all> users to have a quick access to it at all times.)> >> > And don't hesitate to post with any questions... the idea is to have> as> many people involved in this as possible, I think it will be so useful!!> >> > -Joy> >> >> >> >> >> >> >

[Guest guest]

& everyone,

Again, I appreciate your input...

The ISOP board has strongly discouraged me to make public this type of

" spreadsheet " . Although, the board of ISOP doesn't consist of an attorney

that deals with HIPAA laws/regs on a daily basis....All ISOP board members

have extensive backround/experience (over 65 years cumulative) in

non-profits that relate to health..

I look forward to presenting this issue (again) at my next board meeting,

this week.

HRH

> As an attorney who has to deal with HIPPA law daily, I can assure you

> that it is not a violation for a parent to willingly release data on a

> child, it is a violation for a doctor, or a healthcare professional. It

> is no different than a parent choosing to write a story about their

> child on the ISOP website, it is a personal choice.

>

> E

>

> ________________________________

>

> From: infantile scoliosis treatment

> [mailto:infantile scoliosis treatment ] On Behalf Of

> heather@...

> Sent: Friday, February 24, 2006 11:47 AM

> infantile scoliosis treatment

> Subject: Re: C.A.S.T. Group Data Spreadsheet

>

>

> Hello all,

>

> I really appreciate all of your views on the C.A.S.T data spreadsheet.

> Unfortunately, ISOP and C.A.S.T is unable to sanction this type of

> spreadsheet.

> Honestly, I have wanted to compile a group spreadsheet for a few years,

> but cannot. Due to strict HIPAA laws/reg's. Sadly, this is a clear

> violation of federal HIPAA law.

> ISOP is very involved in doing an official, research based project, with

> orthopaedic professionals.....So rest assured, no data will be lost.

> Bottom line, we must do our best to ensure that federal law is not

> broken/compromised, at any time....If a spreadsheet like this was

> developed/passed around, we would be putting ISOP, and the early

> treatment

> message in jeopardy.

> I realize that this spreadsheet was developed by Joy, due to members

> request....This would definately make it easier for us to track the

> progress of other children...Who we have all grown to care for,,,, but

> this is not a safe way to go about it....I wish it could be this easy,

> but

> it truly is not. This HIPAA stuff is tricky business. T

> We can still communicate via phone and internet, we just cant post info

> on

> a group/public spreadsheet....Even, if releases were signed. Its a lot

> more complicated than that, and we cant afford to take chances.

> Sorry, I am not passing along the news that most wanted, but my main

> goal

> is to protect ISOP and our work to promote early treatment for our

> precious infants/children.

>

> I hope you all understand.

>

> Please check out HIPAA laws/regs on the net.

>

> Sincerely,

>

> HRH

>

>

>

>> I really don't think this is such a good idea. I am not going to post

> Madison's for privacy reasons. I don't think we should compare our

> children and their results or lack there of. It's not fair to your

> child,

>> his or her treatment team, or yourself. While it's nice to have some

> ideas of what to expect, this just isn't right in my opinion. I think

> if

>> you're wanting info on what to expect you can go to the

>> www.infantilescoliosis.org web site and go to the stories section. I

> am

> also cuious if knows about this. I don't think she would

> sanction

>> this for HIPPA reasons.

>>

>> Jen

>> mosunshinebaby <mosunshinebaby@...> wrote:

>> Hi Everyone!!

>>

>> So here's an official post on the Spreadsheet we have set up for our

> children & each of their personal (unique) cases of scoliosis, it

> contains columns for information on their location of curve, initial

> degree measurements, ages, casting measurements, etc.. All of these

> questions I have SO redundantly had to ask people since beginning our

> scoliosis casting journey in Dec. I had thought at times before that a

> spreadsheet would be helpful for comparison purposes but

>> never acted on it until I saw some posts here by people mentioning the

> same thing.

>>

>> SO, all you have to do is click on the " Links " section to the left

> here,

> click on the folder titled C.A.S.T. Group Data Spreadsheet (To Add/Edit

> Personal Info.) and there is a link along with directions on how to get

> your info. in. Again, it will probably take you less than 5 min. so if

> you get a chance please do, it will certainly

>> benefit a lot of people I'm sure!

>>

>> Your final step in the short process is posting (on this site) a post

> titled CAST GROUP DATA and in that post you will include the user name

> you

> used to register on the spreadsheet site, I'll then add you as an editor

> and you will receive an e-mail confirmation with the link to the

> spreadsheet giving you access to add & edit.

>>

>> (There is also a VIEWING ONLY folder/ & Link to the spreadsheet for all

> users to have a quick access to it at all times.)

>>

>> And don't hesitate to post with any questions... the idea is to have

> as

> many people involved in this as possible, I think it will be so useful!!

>>

>> -Joy

>>

>>

>>

>>

>>

>>

>>

[Guest guest]

& everyone,

Again, I appreciate your input...

The ISOP board has strongly discouraged me to make public this type of

" spreadsheet " . Although, the board of ISOP doesn't consist of an attorney

that deals with HIPAA laws/regs on a daily basis....All ISOP board members

have extensive backround/experience (over 65 years cumulative) in

non-profits that relate to health..

I look forward to presenting this issue (again) at my next board meeting,

this week.

HRH

> As an attorney who has to deal with HIPPA law daily, I can assure you

> that it is not a violation for a parent to willingly release data on a

> child, it is a violation for a doctor, or a healthcare professional. It

> is no different than a parent choosing to write a story about their

> child on the ISOP website, it is a personal choice.

>

> E

>

> ________________________________

>

> From: infantile scoliosis treatment

> [mailto:infantile scoliosis treatment ] On Behalf Of

> heather@...

> Sent: Friday, February 24, 2006 11:47 AM

> infantile scoliosis treatment

> Subject: Re: C.A.S.T. Group Data Spreadsheet

>

>

> Hello all,

>

> I really appreciate all of your views on the C.A.S.T data spreadsheet.

> Unfortunately, ISOP and C.A.S.T is unable to sanction this type of

> spreadsheet.

> Honestly, I have wanted to compile a group spreadsheet for a few years,

> but cannot. Due to strict HIPAA laws/reg's. Sadly, this is a clear

> violation of federal HIPAA law.

> ISOP is very involved in doing an official, research based project, with

> orthopaedic professionals.....So rest assured, no data will be lost.

> Bottom line, we must do our best to ensure that federal law is not

> broken/compromised, at any time....If a spreadsheet like this was

> developed/passed around, we would be putting ISOP, and the early

> treatment

> message in jeopardy.

> I realize that this spreadsheet was developed by Joy, due to members

> request....This would definately make it easier for us to track the

> progress of other children...Who we have all grown to care for,,,, but

> this is not a safe way to go about it....I wish it could be this easy,

> but

> it truly is not. This HIPAA stuff is tricky business. T

> We can still communicate via phone and internet, we just cant post info

> on

> a group/public spreadsheet....Even, if releases were signed. Its a lot

> more complicated than that, and we cant afford to take chances.

> Sorry, I am not passing along the news that most wanted, but my main

> goal

> is to protect ISOP and our work to promote early treatment for our

> precious infants/children.

>

> I hope you all understand.

>

> Please check out HIPAA laws/regs on the net.

>

> Sincerely,

>

> HRH

>

>

>

>> I really don't think this is such a good idea. I am not going to post

> Madison's for privacy reasons. I don't think we should compare our

> children and their results or lack there of. It's not fair to your

> child,

>> his or her treatment team, or yourself. While it's nice to have some

> ideas of what to expect, this just isn't right in my opinion. I think

> if

>> you're wanting info on what to expect you can go to the

>> www.infantilescoliosis.org web site and go to the stories section. I

> am

> also cuious if knows about this. I don't think she would

> sanction

>> this for HIPPA reasons.

>>

>> Jen

>> mosunshinebaby <mosunshinebaby@...> wrote:

>> Hi Everyone!!

>>

>> So here's an official post on the Spreadsheet we have set up for our

> children & each of their personal (unique) cases of scoliosis, it

> contains columns for information on their location of curve, initial

> degree measurements, ages, casting measurements, etc.. All of these

> questions I have SO redundantly had to ask people since beginning our

> scoliosis casting journey in Dec. I had thought at times before that a

> spreadsheet would be helpful for comparison purposes but

>> never acted on it until I saw some posts here by people mentioning the

> same thing.

>>

>> SO, all you have to do is click on the " Links " section to the left

> here,

> click on the folder titled C.A.S.T. Group Data Spreadsheet (To Add/Edit

> Personal Info.) and there is a link along with directions on how to get

> your info. in. Again, it will probably take you less than 5 min. so if

> you get a chance please do, it will certainly

>> benefit a lot of people I'm sure!

>>

>> Your final step in the short process is posting (on this site) a post

> titled CAST GROUP DATA and in that post you will include the user name

> you

> used to register on the spreadsheet site, I'll then add you as an editor

> and you will receive an e-mail confirmation with the link to the

> spreadsheet giving you access to add & edit.

>>

>> (There is also a VIEWING ONLY folder/ & Link to the spreadsheet for all

> users to have a quick access to it at all times.)

>>

>> And don't hesitate to post with any questions... the idea is to have

> as

> many people involved in this as possible, I think it will be so useful!!

>>

>> -Joy

>>

>>

>>

>>

>>

>>

>>

[Guest guest]

Although, I would love to have the spreadsheet, I totally understand you have to do what you have to do to protect ISOP. Thanks for all of your hard work .

Noelle (12-2-01)Ian (8-15-04)

Re: C.A.S.T. Group Data Spreadsheet>>> Hello all,>> I really appreciate all of your views on the C.A.S.T data spreadsheet.> Unfortunately, ISOP and C.A.S.T is unable to sanction this type of> spreadsheet.> Honestly, I have wanted to compile a group spreadsheet for a few years,> but cannot. Due to strict HIPAA laws/reg's. Sadly, this is a clear> violation of federal HIPAA law.> ISOP is very involved in doing an official, research based project, with> orthopaedic professionals.....So rest assured, no data will be lost.> Bottom line, we must do our best to ensure that federal law is not> broken/compromised, at any time....If a spreadsheet like this was> developed/passed around, we would be putting ISOP, and the early> treatment> message in jeopardy.> I realize that this spreadsheet was developed by Joy, due to members> request....This would definately make it easier for us to track the> progress of other children...Who we have all grown to care for,,,, but> this is not a safe way to go about it....I wish it could be this easy,> but> it truly is not. This HIPAA stuff is tricky business. T> We can still communicate via phone and internet, we just cant post info> on> a group/public spreadsheet....Even, if releases were signed. Its a lot> more complicated than that, and we cant afford to take chances.> Sorry, I am not passing along the news that most wanted, but my main> goal> is to protect ISOP and our work to promote early treatment for our> precious infants/children.>> I hope you all understand.>> Please check out HIPAA laws/regs on the net.>> Sincerely,>> HRH>>>>> I really don't think this is such a good idea. I am not going to post> Madison's for privacy reasons. I don't think we should compare our> children and their results or lack there of. It's not fair to your> child,>> his or her treatment team, or yourself. While it's nice to have some> ideas of what to expect, this just isn't right in my opinion. I think> if>> you're wanting info on what to expect you can go to the>> www.infantilescoliosis.org web site and go to the stories section. I> am> also cuious if knows about this. I don't think she would> sanction>> this for HIPPA reasons.>>>> Jen>> mosunshinebaby <mosunshinebaby@...> wrote:>> Hi Everyone!!>>>> So here's an official post on the Spreadsheet we have set up for our> children & each of their personal (unique) cases of scoliosis, it> contains columns for information on their location of curve, initial> degree measurements, ages, casting measurements, etc.. All of these> questions I have SO redundantly had to ask people since beginning our> scoliosis casting journey in Dec. I had thought at times before that a> spreadsheet would be helpful for comparison purposes but>> never acted on it until I saw some posts here by people mentioning the> same thing.>>>> SO, all you have to do is click on the "Links" section to the left> here,> click on the folder titled C.A.S.T. Group Data Spreadsheet (To Add/Edit> Personal Info.) and there is a link along with directions on how to get> your info. in. Again, it will probably take you less than 5 min. so if> you get a chance please do, it will certainly>> benefit a lot of people I'm sure!>>>> Your final step in the short process is posting (on this site) a post> titled CAST GROUP DATA and in that post you will include the user name> you> used to register on the spreadsheet site, I'll then add you as an editor> and you will receive an e-mail confirmation with the link to the> spreadsheet giving you access to add & edit.>>>> (There is also a VIEWING ONLY folder/ & Link to the spreadsheet for all> users to have a quick access to it at all times.)>>>> And don't hesitate to post with any questions... the idea is to have> as> many people involved in this as possible, I think it will be so useful!!>>>> -Joy>>>>>>>>>>>>>>

[Guest guest]

Jen,

Thanks for your support on this. No worries, it will all be figured out

in a way that will ensure we are following HIPAA laws/regs, protecting

ISOP, satisfying constituents and the medical professionals that are

involved, etc...

Sincerely,

HRH

> It's a shame that the laws are so strict, but I totally understand...we

> definitely wouldn't want to compromise ISOP and the wonderful work you

> have been doing .

>

>

> Noelle (12-2-01)

> Ian (8-15-04)

> Re: C.A.S.T. Group Data Spreadsheet

>

>

> Hello all,

>

> I really appreciate all of your views on the C.A.S.T data spreadsheet.

> Unfortunately, ISOP and C.A.S.T is unable to sanction this type of

> spreadsheet.

> Honestly, I have wanted to compile a group spreadsheet for a few years,

> but cannot. Due to strict HIPAA laws/reg's. Sadly, this is a clear

> violation of federal HIPAA law.

> ISOP is very involved in doing an official, research based project, with

> orthopaedic professionals.....So rest assured, no data will be lost.

> Bottom line, we must do our best to ensure that federal law is not

> broken/compromised, at any time....If a spreadsheet like this was

> developed/passed around, we would be putting ISOP, and the early

> treatment

> message in jeopardy.

> I realize that this spreadsheet was developed by Joy, due to members

> request....This would definately make it easier for us to track the

> progress of other children...Who we have all grown to care for,,,, but

> this is not a safe way to go about it....I wish it could be this easy,

> but

> it truly is not. This HIPAA stuff is tricky business. T

> We can still communicate via phone and internet, we just cant post info

> on

> a group/public spreadsheet....Even, if releases were signed. Its a lot

> more complicated than that, and we cant afford to take chances.

> Sorry, I am not passing along the news that most wanted, but my main

> goal

> is to protect ISOP and our work to promote early treatment for our

> precious infants/children.

>

> I hope you all understand.

>

> Please check out HIPAA laws/regs on the net.

>

> Sincerely,

>

> HRH

>

>

>

> > I really don't think this is such a good idea. I am not going to post

> Madison's for privacy reasons. I don't think we should compare our

> children and their results or lack there of. It's not fair to your

> child,

> > his or her treatment team, or yourself. While it's nice to have some

> ideas of what to expect, this just isn't right in my opinion. I think

> if

> > you're wanting info on what to expect you can go to the

> > www.infantilescoliosis.org web site and go to the stories section. I

> am

> also cuious if knows about this. I don't think she would

> sanction

> > this for HIPPA reasons.

> >

> > Jen

> > mosunshinebaby <mosunshinebaby@...> wrote:

> > Hi Everyone!!

> >

> > So here's an official post on the Spreadsheet we have set up for our

> children & each of their personal (unique) cases of scoliosis, it

> contains columns for information on their location of curve, initial

> degree measurements, ages, casting measurements, etc.. All of these

> questions I have SO redundantly had to ask people since beginning our

> scoliosis casting journey in Dec. I had thought at times before that a

> spreadsheet would be helpful for comparison purposes but

> > never acted on it until I saw some posts here by people mentioning the

> same thing.

> >

> > SO, all you have to do is click on the " Links " section to the left

> here,

> click on the folder titled C.A.S.T. Group Data Spreadsheet (To Add/Edit

> Personal Info.) and there is a link along with directions on how to get

> your info. in. Again, it will probably take you less than 5 min. so if

> you get a chance please do, it will certainly

> > benefit a lot of people I'm sure!

> >

> > Your final step in the short process is posting (on this site) a post

> titled CAST GROUP DATA and in that post you will include the user name

> you

> used to register on the spreadsheet site, I'll then add you as an editor

> and you will receive an e-mail confirmation with the link to the

> spreadsheet giving you access to add & edit.

> >

> > (There is also a VIEWING ONLY folder/ & Link to the spreadsheet for all

> users to have a quick access to it at all times.)

> >

> > And don't hesitate to post with any questions... the idea is to have

> as

> many people involved in this as possible, I think it will be so useful!!

> >

> > -Joy

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

HI !

I didn't mean to stir up any trouble and I should add that I do not do non-profit related to health work. However, I would think that so long as you have a disclaimer that states all information in this chart was voluntarily provided and entered by parents it should be okay.

Also because I am an over protective mother I would suggest maybe not putting the child's name but maybe using initials or assigning a number that the parent doing the entering has to keep track of.

E

From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of heather@...Sent: Saturday, February 25, 2006 8:32 AMinfantile scoliosis treatment Subject: RE: C.A.S.T. Group Data Spreadsheet

& everyone,Again, I appreciate your input...The ISOP board has strongly discouraged me to make public this type of"spreadsheet". Although, the board of ISOP doesn't consist of an attorneythat deals with HIPAA laws/regs on a daily basis....All ISOP board membershave extensive backround/experience (over 65 years cumulative) innon-profits that relate to health..I look forward to presenting this issue (again) at my next board meeting,this week.HRH> As an attorney who has to deal with HIPPA law daily, I can assure you> that it is not a violation for a parent to willingly release data on a> child, it is a violation for a doctor, or a healthcare professional. It> is no different than a parent choosing to write a story about their> child on the ISOP website, it is a personal choice.>> E>> ________________________________>> From: infantile scoliosis treatment > [mailto:infantile scoliosis treatment ] On Behalf Of> heather@...> Sent: Friday, February 24, 2006 11:47 AM> infantile scoliosis treatment > Subject: Re: C.A.S.T. Group Data Spreadsheet>>> Hello all,>> I really appreciate all of your views on the C.A.S.T data spreadsheet.> Unfortunately, ISOP and C.A.S.T is unable to sanction this type of> spreadsheet.> Honestly, I have wanted to compile a group spreadsheet for a few years,> but cannot. Due to strict HIPAA laws/reg's. Sadly, this is a clear> violation of federal HIPAA law.> ISOP is very involved in doing an official, research based project, with> orthopaedic professionals.....So rest assured, no data will be lost.> Bottom line, we must do our best to ensure that federal law is not> broken/compromised, at any time....If a spreadsheet like this was> developed/passed around, we would be putting ISOP, and the early> treatment> message in jeopardy.> I realize that this spreadsheet was developed by Joy, due to members> request....This would definately make it easier for us to track the> progress of other children...Who we have all grown to care for,,,, but> this is not a safe way to go about it....I wish it could be this easy,> but> it truly is not. This HIPAA stuff is tricky business. T> We can still communicate via phone and internet, we just cant post info> on> a group/public spreadsheet....Even, if releases were signed. Its a lot> more complicated than that, and we cant afford to take chances.> Sorry, I am not passing along the news that most wanted, but my main> goal> is to protect ISOP and our work to promote early treatment for our> precious infants/children.>> I hope you all understand.>> Please check out HIPAA laws/regs on the net.>> Sincerely,>> HRH>>>>> I really don't think this is such a good idea. I am not going to post> Madison's for privacy reasons. I don't think we should compare our> children and their results or lack there of. It's not fair to your> child,>> his or her treatment team, or yourself. While it's nice to have some> ideas of what to expect, this just isn't right in my opinion. I think> if>> you're wanting info on what to expect you can go to the>> www.infantilescoliosis.org web site and go to the stories section. I> am> also cuious if knows about this. I don't think she would> sanction>> this for HIPPA reasons.>>>> Jen>> mosunshinebaby <mosunshinebaby@...> wrote:>> Hi Everyone!!>>>> So here's an official post on the Spreadsheet we have set up for our> children & each of their personal (unique) cases of scoliosis, it> contains columns for information on their location of curve, initial> degree measurements, ages, casting measurements, etc.. All of these> questions I have SO redundantly had to ask people since beginning our> scoliosis casting journey in Dec. I had thought at times before that a> spreadsheet would be helpful for comparison purposes but>> never acted on it until I saw some posts here by people mentioning the> same thing.>>>> SO, all you have to do is click on the "Links" section to the left> here,> click on the folder titled C.A.S.T. Group Data Spreadsheet (To Add/Edit> Personal Info.) and there is a link along with directions on how to get> your info. in. Again, it will probably take you less than 5 min. so if> you get a chance please do, it will certainly>> benefit a lot of people I'm sure!>>>> Your final step in the short process is posting (on this site) a post> titled CAST GROUP DATA and in that post you will include the user name> you> used to register on the spreadsheet site, I'll then add you as an editor> and you will receive an e-mail confirmation with the link to the> spreadsheet giving you access to add & edit.>>>> (There is also a VIEWING ONLY folder/ & Link to the spreadsheet for all> users to have a quick access to it at all times.)>>>> And don't hesitate to post with any questions... the idea is to have> as> many people involved in this as possible, I think it will be so useful!!>>>> -Joy>>>>>>>>>>>>>>