Ancestral Weight Loss Registry (AWLR) (www.AWLR.org) (“Site”) is an online registry collecting data and offering services related to paleo and carbohydrate restricted nutrition. Our goal is collect and analyze data on low carbohydrate and paleo eating behaviors in order to better understand the potential health benefits. We also use the information we collect to better inform our health professionals offering their services on the site.
WHAT KIND OF INFORMATION WE COLLECT
Some of the information that Members provide about themselves may be shared with the AWLR community, Partners, and others (“Shared Data”) in an anonymized form. No personally identifiable information will ever be shared without the consent of the registry member. Examples of Shared Data that Members may submit at the Site, may include:
Condition/disease information, e.g. diseases; family history;
Dietary Behaviors and weight changes;
Information shared via free text fields, e.g. the forum
Before and after photos, first name, and free response answers strictly for those who agree to be featured on the blog.
In the course of using the Site, Members may share information that could be used to reasonably identify them (“Personal Information”), including name, photograph, and email address. When a Member chooses to share Personal Information via a free text field (e.g. forum or featured on the blog), the information shall be treated as Shared Data.
Some of the information that Members enter into certain fields when registering to use for the registry will not be shared (“Restricted Data”) without permission. The type of Restricted Data that Members may submit at the Site may include:
Name, as collected as part of registration form
Before and after pictures
When a Member enters Personal Information, including name and email address, as part of registering to use AWLR, that Personal Information is treated as Restricted Data.
Ancestral Weight Loss Registry obtains IP addresses from users that register and submit their data into our database. This is done to:
Estimate the total number of users visiting the registry’s site from specific geographical regions.
Monitor and prevent fraud and abuse.
A cookie is a small data file that often includes an anonymous, unique token, which is sent to your browser from a website’s computers and may be stored on your computer’s hard drive. Two types of cookies are required to use the Site:
Session Cookies are temporary cookies that remain only until you log out of the website or exit your web browser. Session Cookies do not store any Personal Information, only a unique visitor ID number that may be used to ensure Members are properly authenticated and can view site information.
Persistent Cookies remain in the cookie file of your browser for much longer, even after you leave the Site. Persistent Cookies also do not store any Personal Information. Persistent Cookies store preferences that should persist from visit to visit, like “Remember Me,” and a unique token to enable us to understand how Members use the Site.
Serum Cholesterol and Dietary Intake Data
Users of the site are able to browse our Marketplace of healthcare professionals. To better assist their weight loss and progress, we encourage members to share their PhotoCalorie food journal with the healthcare professional they choose, however this is optional. Users also have the option to discuss their blood test results with their health professional. The blood test is done independent of the registry and is entirely up to the user whether or not they want to share this information with their healthcare professional.
HOW YOUR SHARED AND RESTRICTED DATA IS USED
Members should expect that every piece of information they submit (even if it is not currently displayed), except for Restricted Data, may be shared with the community, or Partners. Members are encouraged to share health information but should consider that the more information that is entered, the more likely it is that a Member could be located or identified.
There are instances where both Shared Data and Restricted Data, including Personal Information, may be used and disclosed including, but not limited to, the following:
AWLR uses both Shared Data and Restricted Data internally, as needed, for research, for maintenance and operation of the Site
AWLR may use a Member’s data in the case of an emergency or other circumstance that we determine requires a member of the management team to directly contact the Member.
AWLR may share or disclose a Member’s data where required by law or to comply with legal process.
In the event AWLR 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. Members will be notified via this Site of any such change in ownership or control of Personal Information.
How Shared Data is Used
Shared Data is always anonymous and viewable only through aggregated reports that are made available on the AWLR site. We report publicly Shared Data in aggregate, such as the number of individuals experiencing a certain side effect, or average amount of weight lost. We also may share anonymized trends with healthcare professionals on our site to allow them to better help a prospective client. For example, we may reveal the anonymized, common behaviors associated with those who have lost the most weight, to provide our healthcare professionals with some insight into what may help their current customer.
In addition to serving the individual needs of our Members, AWLR and its Partners are interested in better understanding the patient experience and improving treatment options and health outcomes for everyone. For example, we may look at questions such as, “Do certain behaviors work better for some types of people versus others?” AWLR may provide anonymized Shared Data, in individual and aggregate format, to Partners and other third parties for use in scientific research and market research. If we sell this information, AWLR removes Members’ Restricted Data to reduce the likelihood of re-identification prior to sharing information with Partners.
AWLR may also periodically ask Members to complete short surveys about their experiences (including questions about services). Survey responses are analyzed, combined with Members’ Shared Data and may be shared with and/or sold to Partners. Member participation in these surveys is not required, and refusal to do so will not impact a Member’s experience on the Site.
Requesting to Be Featured on the Blog AWLR members that wish to be featured on the public blog acknowledge and accept that any information shared through the free response text or before and after pictures may be featured on the blog. If a Member puts his or her place of business (or other Personal Information) into the free response question fields, and asks to be featured on the blog, the Member should know this information may be included in what is shared on the blog.
How Restricted Data is Used
Restricted Data is not shared with, sold to, or displayed for other Members or Partners, without the explicit request of a registry member. Specific instances where Restricted Data may be used include, but are not limited to, the following:
If a Member explicitly opts in to have their Restricted Data shared with a Partner, AWLR will share the information as instructed by the Member (e.g. co-registration with a non-profit).
If a Member makes a request, AWLR may use Restricted Data, including sharing the Member’s Restricted Data with software/service vendors, for the purpose of fulfilling the request. Examples include requesting to receive the company newsletter via email, requesting an email response from the AWLR support team, and requesting a t-shirt be mailed to the Member’s residence.
RISKS AND BENEFITS
While our goal is to help people lose weight by providing them information on paleo and low carbohydrate nutrition, and connecting them with health professionals that are would be able to help them, there are no certain benefits to using this website.
There are also no known risks to using this website, but there is a possibility that users may feel uncomfortable sharing information online. It is possible that a if a member agrees to share their story on the blog, they could be identified using information they voluntarily choose to share in their free response answers. A Member could be discriminated against or experience repercussions as a result of the information they agreed to share on the blog. For example, it is possible that employers, insurance companies, or others may discriminate based on health information they read on the blog if you agree to share your story.
In using the Site, Members are free to skip any non-required questions or data fields that make them feel uncomfortable. Members are also free to stop using this service at any time. If a Member chooses to have their data removed, AWLR will not display or sell the data in that account. However, the Member’s data will remain in the system for auditing purposes, and research conducted prior to the deactivation of a Member’s account will still include the Member’s data.