The International Society for Quality of Life Research (ISOQOL) has a strong commitment to privacy, recognizing that we are a public society. This statement outlines the policies and procedures concerning information gathering and dissemination practices for our organization.
- On our website.
- In e-mail, text and other electronic messages between you and our website.
- When you sign up for any events that we host.
- When you interact with us in another way – for example, contacting us with an inquiry.
This Policy outlines our policies and practices regarding your personal information (information relating to you from which you can be identified) and how we will treat it. This Policy may change from time to time (see Changes to This Policy section below), so please check the Policy periodically for updates. If any questions arise about the meaning or interpretation of this Policy, the English-language version of this Policy is the official text.
Collecting and Using User Information
ISOQOL collects information in different ways from those who access our site. We primarily use this information to provide a customized experience as you use our site and do not share this information with third parties. However, we may disclose personal information collected if we have received your permission beforehand or in very special circumstances, such as when we believe that such disclosure is required by law, or in other special cases described below.
Our site uses order forms for customers to request information, products, and services. We collect users’ contact information (e.g., name and email address) and financial information (e.g., account or credit card numbers). Financial information is used to bill the user for products and services and then is deleted from our records in compliance with the Payment Card Industry Data Security Standard (PCI-DSS). Contact information from the order form is used to send orders, contact the user regarding any problems with the order, and to provide the user with information about our society, including promotional materials. Users may opt out of receiving future communications at any time by contacting firstname.lastname@example.org.
Additionally, be aware that if you visit non-ISOQOL websites where you are prompted to log in or that are customizable, you may be required to accept cookies. Third parties and other non-ISOQOL websites may also use their own cookies. We do not control use of these cookies and expressly disclaim responsibility for information collected through them.
Finally, cookies are used to support Google Analytics functionality for website activity tracking. Google Analytics stores information at Google. Read more about Google Analytics privacy and security information.
When you visit our website, we automatically collect information from your browser or your mobile device, such as Internet Protocol (IP) address or unique device identifier, cookies, and data about which pages you visit in order to allow to operate and provide the website and our services. This information is used to protect our Website and services and to keep the website secure, analyze and improve our website and services and understand how the website works for users, and provide advertising to you and a more personalized experience for our users.
If you receive email communications from us, we may use certain tools to capture data related to when you open our messages, click on hyperlinks or banners it may contain, and make purchases. We use this information to enhance and support our marketing and sales operations.
When you create an ISOQOL account we collect your contact information, including your email address and postal address. Users may opt out of receiving future communications at any time by contacting email@example.com.
Surveys, Questionnaires, Social Media
When you submit a survey, questionnaire, contest entry, or similar form by using the website, social media, or other online survey tools and platforms accessible via our website, we or third parties operating those tools, platforms, or social media websites may collect your social media handle or profile, or any other identifier that you use to be contacted online or offline. This information may also include personally identifiable and business information, but only to the extent that you voluntarily provide it to us.
Use of Personal Information
In addition to the uses described above, we use the personal information collected in an effort to improve your experience on the website, to provide services to you, and to communicate with you about the information you have requested. We may also use personal information to help target specific offers to you and to help us develop and improve our website and services. Additionally, we may use your personal information in the following ways:
- To provide you with services you have requested and to manage our relationship with you, including administering your account, processing payments, accounting, auditing, billing and collection and taking other steps necessary to the performance of our business relationship with you;
- To present and improve website contact and functionality;
- To determine user interests, needs and preferences;
- To provide notice of changes to our website or the services we offer or provide through it;
- To conduct research and analysis;
- To develop new products and services;
- To manage and maintain the security of our website and services;
- To market our services to you. We will only provide you with marketing-related information after you have, where legally required to do so, opted in to receive those communications and having provided you with the opportunity to opt-out of such communications at any time. We do not sell, rent, or lease our customer lists to third parties.
Disclosure of Personal Information
Updating User Profile
Individuals who have created an account with ISOQOL have the ability to update or change all personal information provided. To do so, users may visit the User Profile section of the ISOQOL website.
ISOQOL provides individuals the opportunity to opt out of receiving communications from us when we request information about the user. To update these preferences, users may visit the ISOQOL website or contact firstname.lastname@example.org.
Current ISOQOL members’ contact information is made available through the Membership Directory. This information is only available to other current ISOQOL members. Members may opt out of being listed in the Membership Directory through their User Profile.
We maintain appropriate technical and organizational measures to prevent your personal information from being accidentally lost, used or accessed in an unauthorized manner, altered or disclosed during collection, storage, and processing. While our security measures seek to protect your personal information in our possession, no security system is perfect and we cannot guarantee that your personal information will remain absolutely secure in all circumstances or that any privacy settings or security measures contained on the Website cannot be circumvented.
The majority of communications on our Website, including any submissions through available forms, are sent through the standard HTTP protocol and may be delivered using regular e-mail. Information sent over HTTP is not encrypted. E-mail, while convenient, does pose some risks (e.g., e-mail is not a secure form of communication, is unreliable, can be forwarded, etc.).
The safety and security of your personal information also depends on you. Where you use a password for access to restricted parts of the Website, you are responsible for keeping the password confidential. Do not share your password with anyone.
If a security breach causes an unauthorized intrusion into our Website or systems that compromises your data, we will notify you and any applicable regulator when we are required to do so by applicable law.
Updating Your Personal Information
If the personal information you have provided to us changes, please let us know. For instance, if your email changes, you wish to cancel any request you have made of us, or if you become aware of inaccurate personal information about you, visit the User Profile section of the ISOQOL website to update your information. You may also edit your account details if you have a user account through our Site.
We are not responsible for any losses arising from any inaccurate, inauthentic, deficient or incomplete personal data that you provide to us.
The website is not intended for children under 16 years of age. ISOQOL does not knowingly collect personally identifiable information from children under 16. If you are under 16, do not use or provide any information on the Website or provide any information about yourself to us, including your name, telephone number, email address or any screen name or user name you may use. If we learn we have collected or received personally identifiable information from a child under 16 without verification of parental consent, we will delete that information. If you believe we might have any information from or about a child under 16, please contact us at email@example.com.
Links to Other Sites
This site contains links to other websites. ISOQOL is not responsible for the privacy practices or content of other websites. We encourage you to read the privacy statements of each website that collects your personally identifiable information.
Changes to This Policy
To ask questions or comment about this Policy or ISOQOL’s privacy practices, contact us at firstname.lastname@example.org.
Our mailing address is:
International Society for Quality of Life Research
555 E. Wells St., Suite 1100
Milwaukee, WI 53202
The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).
Together, we are creating a future in which patient perspective is integral to health research, care and policy.