Florida Lifespan Respite Alliance

Policy on Collection and Use of Personal Information

The Florida Lifespan Respite Alliance (FLRA) values and respects an individual's right to keep certain Personal Information private. Likewise, the FLRA values the need to collect and use Personal Information that will enable the FLRA to effectively deliver products and services leading to improving the lives of Caregivers and those being cared for.  FLRA neither collects nor stores personal information on its website.


"Personal Information" is "Demographic Information" and/or "Medical Information" which identifies a specific individual with a minimal degree of effort. Demographic Information includes name, address, city and other similar information. Medical Information includes diseases, treatments, lifestyle behaviors, family history, and other similar information. Transactional Information is data collected on an individual based on the individuals' interactions with the FLRA. Aggregate Information is information in summary form that does not contain data that would permit the identification of a specific individual.


FLRA Collection of Personal Information

The FLRA will collect Personal Information on an individual only if the individual provides the information to the FLRA. The FLRA may also collect Aggregate Information (in which no one person is identified) for research and service improvement purposes.

With respect to the collection by other organizations of personal information, the FLRA does not have any agreements, nor does it intend to have any agreements with outside organizations to collect personal information at this website.

FLRA Use of Personal Information

* When an individual provides Personal Information to the FLRA, the FLRA may use the Personal Information for its programs, research and fundraising.
* It is conceivable that from time to time, there is a benefit in allowing a third party to use collected Personal Information on individuals. However, unless an individual gives permission, the FLRA will not allow any third party to use Personal Information collected by the FLRA.
* The FLRA uses Transactional Information for research purposes for the development or implementation of its programs, products and services. Since Transactional Information is highly proprietary, it will not be disclosed to third parties.
* The FLRA will disclose all information as required by law.
* If the individual requests, the FLRA will not use that individual's Personal Information.

Specific Requirements

 Administrative Requirements

* All Personal Information collected on individuals will be kept confidential and in a secure environment.
* Access to Personal Information will be restricted to only those personnel with a legitimate FLRA business purpose.
* The FLRA owns all Personal Information provided to it by individuals.

Scientific Research Requirements

* Any research funded by, or in which the FLRA participates, that involves human subjects (e.g., information collected on individuals) must conform ethically to the guidelines prescribed by the National Institutes of Health; this includes obtaining informed consent from each individual.

Third Party Disclosure Requirements

* Permission is required before the FLRA discloses Personal Information to a third party.
* No permission is necessary for Aggregate Information, since Aggregate Information does not identify a specific individual.
* For disclosure of Demographic Information, the FLRA as a minimum will use the "Opt-Out" approach. An "opt-out" is obtained when the FLRA, through some correspondence, gives an individual an opportunity to decline or "opt-out" of disclosures to third parties. If the individual does not opt out, permission is deemed granted.
* Depending upon the nature of an activity or project, a higher standard than "opt-out" may be used, such as "opt-in" whereby an individual must affirmatively give consent before information is disclosed.