Participation in a research study

[Guest guest]

Participation in a research study

Dear Friends:

SORRY IF THIS IS A DUPLICATE MESSAGE

I am conducting a research study as requirement for the doctoral

degree in nursing. The main goal of this dissertation is the

development of a valid and reliable measure of patient's level of

empowerment while living with a chronic health condition. The

questionnaire is be posted through the Internet firm called `Form

Site' (http:www.formsite.com) which ensures saving the collected data

in secured files on their server until retrieved by the researcher.

The questionnaire is composed of 60 items intended to measure patient

empowerment. Personal information will be kept confidential and

participants will not be identified by coding the questionnaires and

then destroying them upon completion of the study. There is no

apparent harm associated with completing the questionnaire.

Participants have the right to quit the study at any time when they

feel uncomfortable or unable to continue. Your assistance is

instrumental for recruitment of participants, completion of the

study, and dissemination of knowledge regarding empowerment of

patients living with chronic health conditions.I appreciate your

assistance and looking forward to hearing from you. Don't hesitate to

contact the principal investigator if you have any modifications,

suggestions, or ideas concerning the instrument or the human subject

protection. Should you have any questions or concerns regarding this

study, please contact the principal investigator of this project Dr.

Carolyn D'Avanzo who can be reached at phone # (860) 486-0540 or via

E.mail Address: Carolyn.davanzo@....

If you have any questions concerning the rights of patients as

research participants, you may contact the University of Connecticut

Institutional Review Board (IRB) at (860) 486-8802. Protocol #

H03131. An IRB is a group of people that reviews research studies and

protects the rights of people involved in research.

The questionnaire's address is:

http://fs10.formsite.com/empowerment/form832048769/index.html

Cordially

Project Director

Ismat Mikky, RN, BSN, MSN, PhDc

Graduate Research Assistant

University of Connecticut

School of Nursing

Center for Nursing Research

W: (860) 486-0544

M: (860) 983-0863

[Guest guest]

>

>The questionnaire's address is:

>

>http://fs10.formsite.com/empowerment/form832048769/index.html

>

>

>Cordially

>

> Project Director

>

>Ismat Mikky, RN, BSN, MSN, PhDc

>Graduate Research Assistant

>University of Connecticut

>School of Nursing

>Center for Nursing Research

>W: (860) 486-0544

>M: (860) 983-0863

Interesting query,

Before submitting any details, can you tell me if you have a clearance to

handle sensitive information. If you have which one and to what level, and

what institution gave it to you, when does it expire.

What is your legal status after you have quit your research with formsite.

Do you have any legal responsibilities out of your profession in case

collected data is misused for other purposes you originally didn't intend

but cannot influence because you do not own the data.

You might be dealing with data that in many cases can only be accessed by

persons with a legal status, like doctors, specialists, lawyers, some

officers with a clearance. Well in case this is different in the USA than

what I am used to in Europe, maybe you can re-educate me and tell me this

sensitive info in the USA is public knowledge and protected by some vague

privacy statement and general terms of formsite.

Do the participants see the final report?

.........

Some comments by me:

1.1 These don't protect the participants:

'Subject to court order, we will release any information as required by law'.

'YOUR USE OF OUR SERVICES SHALL BE AT YOUR OWN RISK'

1.2 This is very risky:

'We may modify this agreement upon reasonable notice to you, and your

continued use of our services after receiving such notice shall constitute

your acceptance of such modifications. If any of the terms of this

agreement are deemed to be unenforceable, the other terms shall be unaffected'.

My comment on 1.2:

This means if the general terms of agreement will violate a State law -and

the violation can be really bad, the user of formsite who doesn't agree has

to sue formsite. Such a case is usually won but who can afford it to take a

lawyer in IL?

Example: this can be very tricky. In the country where I live -the

Netherlands- I know I have the possibility to sue a company for malpractice

and win. In Germany, only 100 miles away I do not have a chance because

they have a IL-like system (somewhat). It will become too expensive for me

to take the company to court.

1.3 What is this about exactly?

'Liability for Breach. For each violation by you of this Section you agree

to pay FormSite.com damages to compensate for the lost goodwill such a

violation causes, but, where warranted, FormSite.com may waive all or part

of the applicable charge. Payment by you under this Section shall not

prevent FormSite.com from seeking to obtain other legal remedies against

you, including other damages or an injunction'.

1.4 This is not good enough:

'PRIVACY STATEMENT FORM FORMSITE -(copied from website formsite.com)

Your privacy is of the utmost importance to FormSite.com. FormSite.com

attempts to minimize personal information members need to reveal. However,

we do ask for some basic personal information when creating forms at

FormSite.com. This information provides aggregate demographic data that

FormSite.com uses to better understand the types of people using

FormSite.com. This data also allows us to do a better job of recommending

content that may be of interest to you on FormSite.com, and to show you

advertisements that are relevant to your age and geographic location.

Ultimately, however, the decision to provide this information is yours.

Information that FormSite.com requests, but does not require, includes Home

Zip Code, Birth Year, and Gender.

FormSite.com may send you email messages on a regular basis to keep you

apprised of your membership status and inform you of new services available

to you. Included in each of these messages are simple instructions on how

to remove yourself from these mailings if you do not wish to receive them

in the future.

You can elect to terminate your membership with FormSite.com at any time,

by sending email to support@.... Be sure to include your Username

in the body of your message, so that we can easily identify your account.

Upon termination, your account information will not necessarily be removed

entirely from FormSite.com - this is to reserve your identity so that no

one else can create a new account with your Username or Email Address, and

also allows you the privilege of reactivating your account at a later date

if you wish to use FormSite.com again. .

We strive to protect your data from unauthorized access. All security

measures at the site are derived from the idea that the person who creates

a form and solicits data for that form is the ultimate owner of the data.

We will never give out

any data collected from your form without your permission. Furthermore, we

will not give out your name or any identifying information about specific

users to any third party. Nor will we use any email address you provide for

any third-party

solicitations without your permission. Subject to court order, we will

release any information as required by law.

The systems containing the FormSite.com data are password protected and

well administered. If our server is in some way compromised, the data may

be revealed. Such an event is extremely unlikely.

.....................................

GENERAL TERMS (copied from website fromsite.com)

Limitation of Liability. WE EXPRESSLY DISCLAIM ALL WARRANTIES EXPRESS AND

IMPLIED, INCLUDING WITHOUT LIMITATION WARRANTIES OF MERCHANTABILITY AND

FITNESS FOR A PARTICULAR PURPOSE. YOUR USE OF OUR SERVICES SHALL BE AT YOUR

OWN RISK. WE SHALL NOT UNDER ANY CIRCUMSTANCES BE RESPONSIBLE FOR ANY LOSS

OR DAMAGES OF ANY KIND UNDER ANY LEGAL THEORY ARISING FROM YOUR USE,

REGISTRATION TO USE, OR INABILITY TO USE, OUR SERVICES, EVEN IF WE ARE

ADVISED OF THE POSSIBILITY OF SUCH DAMAGES.

Prohibited Uses.

1. Illegal Activity. You expressly agree not to use the FormSite.com in a

manner that is prohibited by any law or regulation, or to facilitate the

violation of any law or regulation. You acknowledge that prohibited conduct

includes, but is not limited to, use of the FormSite.com to invade the

privacy of third parties, impersonation of FormSite.com personnel or other

parties or entities, or transmitting abusive, profane, libelous,

slanderous, threatening or other harassing material.

2. " Spamming. " You agree not to use the FormSite.com in connection with the

sending of the same or substantially similar unsolicited electronic mail

messages, whether commercial or not, to a large number of recipients. You

agree not to send unsolicited mass mailings from another service, which in

any way implicates the use of FormSite.com or results in the use of

FormSite.com resources.

3. Liability for Breach. For each violation by you of this Section you

agree to pay FormSite.com damages to compensate for the lost goodwill such

a violation causes, but, where warranted, FormSite.com may waive all or

part of the applicable charge. Payment by you under this Section shall not

prevent FormSite.com from seeking to obtain other legal remedies against

you, including other damages or an injunction.

Suspension or Termination of Services.

With or without notice to you, FormSite.com may suspend the Services for

any duration and for any reason whatsoever including, but not limited to,

violation of FormSite.com prohibitive uses, maintenance, new releases or

other improvements, and/or to safeguard the integrity of the Services

and/or FormSite.com's system.

If an account in does not receive a form submission for 6 months or is not

logged into for 6 months the account will be removed, along with all forms

and data, from FromSite.com.

Miscellaneous. This agreement shall be governed in accordance with the laws

of the state of Illinois applicable to contracts entered into and wholly to

be performed therein, without regard to that body of law applicable to

conflicts of laws. Jurisdiction over any disputes arising under this

agreement shall be exclusively with the courts of the county of Cook,

Illinois. We may modify this agreement upon reasonable notice to you, and

your continued use of our services after receiving such notice shall

constitute your acceptance of such modifications. If any of the terms of

this agreement are deemed to be unenforceable, the other terms shall be

unaffected'.