My Health Connections | Knowledge Information Sharing Platform

Privacy & Confidentiality Policy Statement

Privacy & Confidentiality Statement for HCI's Knowledge- and Information-Sharing Platform (KISP)
Last updated 20 November 2011

The following principles reflect HCI's commitment to maintaining the rights to privacy and confidentiality of any personal information related to visitors to its Knowledge- and Information-Sharing Platform, also known as the My Health Connections website, hereafter called the 'Site'. In this context, privacy refers to the right of the individual website visitor to choose whether to allow personal information to be collected by the Site (in this case, HCI) or by third parties and to know what type of information is collected and how that information is used. Confidentiality refers to the right of an individual to not have personally identifiable medical and/or other information disclosed to others without that individual's express informed consent.

The Internet has the potential to allow information about website use to be tracked in aggregate form and at the individual user level. The tracking of personal, medical and/or health-related information (i.e., medical conditions, health-seeking behaviours and questions, and requests about drug therapies or medical devices and information pertaining to them) could breach an individual's personal privacy and make public an individual's health data.

HCI takes every reasonable measure to ensure the safety and security of its website server and to guard against divulging any user's private information. 1% believes that website visitors should know who (e.g., the organisation itself or a third party) is tracking personal information and the types of personal information that are tracked. However, the best protection for users is to not share any personal identifiable information on the Internet. HCI will take every necessary step to ensure that the data that users of the Site provide is safe once it has entered our systems.

The privacy of our users and members is of the utmost importance to us. Since the Site and its related services does gather certain types of information about our users, we feel that you should completely understand the conditions and terms surrounding the gathering and use of information about those using our website. This Privacy & Confidentiality Policy Statement describes the type of information we collect, how we use it, and how to correct or change it. In this statement, the pronouns 'you' and 'your' are used to refer to the end user, while 'we', 'us' and 'our' are used to refer to HCI. By visiting the Site, or by using one of its services, you are accepting the practices described in this Privacy & Confidentiality Policy Statement. We may amend this Statement at any time; if we make changes to our Privacy & Confidentiality Policy Statement, we will post those changes on this page. Any questions regarding our Privacy & Confidentiality Policy Statement should be directed to HCI ( info@healthconnections.info ) for clarification and further elaboration.

HCI will not the collect name, e-mail address, or any other personal information unless voluntarily provided by the user after the user is informed about the potential use of such information. HCI does not collect any personal information from a site visitor unless that visitor explicitly and intentionally provides it.
The collection, retention, and use of personal information about visitors and/or users to the website may occur if you choose to register at the Site. Depending on how you use the Site, you may be asked to provide specific types of personal information. HCI may require your name, address, telephone number, e-mail address, credit card number, social security number and/or other identifying information. However, you will also be warned before any such information is collected and will always be given the opportunity to cancel and/or amend such use of the site.
In order to post to the Site, the user must register. For the registration process, HCI requires some information such as your name, e-mail address and profession. Information which is required and which is optional will be indicated as such. Additional information requested is done so on a voluntary basis and is optional. Information collected during the registration process is never shared with third parties in a personally identifiable way.
HCI uses traffic analytical tools (e.g., Google analytics) on our servers to monitor user traffic patterns throughout the Site. HCI uses this data to allow access to registration and to understand overall usage statistics according to IP addresses, domain names, browser types, and MIME types by reading this information from the data automatically sent by the browser whenever a web page is requested.
Personal information about a visitor's access and navigation and personal information volunteered by site visitors as part of a survey may be used by HCI to improve the site, but will not be shared with or sold to other organisations for commercial purposes without the site visitor's express permission.
HCI will use e-mail addresses voluntarily provided by site visitors to notify them about opting in to receive updates, products, services, activities, or upcoming events organised by HCI or affiliated entities. Site visitors who do not wish to receive such e-mails from HCI should not opt in. Site visitors are able to opt out of receiving such information at any time.
HCI may use your personal information collected via the website (with the exception of e-mail addresses, the use of which is partially outlined above as well as below) for the following purposes:
- To verify a user's identity.
- To process the registration of participating users of the Site.
- To process, fulfil and/or follow up on requests for additional information.
- To answer your e-mail.
- To send information you may request.
- To send and/or process surveys.
- To ensure that the Site is relevant to and meets your needs.
- To deliver services such as newsletters, meeting invitations and/or reports, or announcements regarding upcoming events.
- To notify you about new features of the Site, special offers, upgrades to the system, and other related information from HCI.
HCI also occasionally outsources to other companies and/or organisations to provide limited services on our behalf, including, but not limited to, translation services, packaging, mailing and delivery of services, responding to user questions about our products or services, posting of mail, and the processing of event registration. We will only provide these entities with the information they need to deliver the service and sign agreements specifying that they are prohibited from using that information for any other purpose.
HCI may disclose your personal information if required to do so by law or in the good-faith belief that such action is necessary to: (a) conform with legal requirements or comply with legal proceedings served to HCI; (b) protect and defend the rights and/or property of HCI; or (c) protect the personal safety of HCI's personnel and/or members of the public in urgent circumstances.
Non-identifiable visitor data may be collected and used to help shape and direct the creation and maintenance of content and to determine the type of advertisements made visible to users whilst logged into the Site.
No-spam policy: Your e-mail address will not be sold to a third party should you register to the Site. If you sign up for an e-mail newsletter or reminder, you will only receive the e-mail newsletter or reminder you have requested. You may on occasion receive an offer from HCI to sign up for a new newsletter or reminder or receive information about other services from HCI, but you will not receive additional newsletters or reminders unless you specifically have requested them.
Delete/deactivate policy: Users may unsubscribe to any of our electronic newsletters or reminders at any time by following the instructions contained at the end of every newsletter or reminder. They may also request removal from the Site. If you no longer wish to use any of HCI's services or receive any information from HCI, you may request that your personal information is removed from HCI's databases by sending a request via e-mail ( support@healthconnections.info ), including your first and last names and the e-mail address with which you originally registered. If you have provided answers to particular questions, however, your name and affiliation will remain as a part of the original attribution.
User information is stored on your computer through the browser functionality. The user is responsible for the protection and/or removal of that information.
As a matter of policy, HCI will sell advertising space on its website when the inclusion of advertising does not interfere with the mission or objectives of HCI or its programme activities. To maintain the integrity of the Site, advertising (i.e., promotional material, advertisements from representatives, companies and/or manufacturers) will not influence editorial decisions or editorial content. Decisions to sell advertising space are made independently of and without information pertinent to specific editorial content. HCI 's representatives working on the sale of website advertising shall have no prior knowledge of specific editorial content before it is published.
Please note that HCI does not control the practices of the advertisers on their sites. When you click on links and/or advertising banners that take you to third party websites, you will be subject to the third parties' privacy policies. We encourage you to read the privacy policy statement whenever using any website. If you have questions about how one of our advertisers uses information about you when you click their ad, visit their site, and/or view their content, please contact them directly.
E-mail messages may not be secure. Site visitors should be careful when sending confidential information via e-mail. Site visitors sending e-mail accept the risk that a third party may intercept their e-mail messages.
If you are a registered user of the Site, you may review, update and/or amend your information by updating the information contained at the 'My Profile' section of the Site once you are logged in or by contacting the Secretariat at support@healthconnections.info.
Given that the organisation itself and memberships change from time to time, this Privacy & Confidentiality Statement is expected to change as well. HCI reserves the right to amend the Privacy & Confidentiality Statement at any time for any reason. We will post a notice that this statement has been amended by revising the 'last updated' date at the top of the page.
Legal Disclaimer: We make every reasonable effort to ensure that your personal information stored by the Site is kept confidential and secure. Only personal information which was supplied as a part of a user profile and may be listed in the 'Experts' section of the Site will be visible to other users of the Site. This applies only to those users who wish to post answers and/or serve as 'expert' users. Unfortunately, no data protection method or combination of methods can be guaranteed as 100 percent secure. We strive to protect your personal information as described throughout this policy. As a result, you use the Site, the content, products, and services at your own risk. HCI will not be liable for disclosures of your personal information due to errors in transmission and/or due unauthorised acts by third parties.
HCI hosts a copy of the Site on its servers. This Site may be updated with information from other copies of the Site, potentially residing in other sovereign states. Other copies of the Site, potentially residing in other sovereign state or states, may update their copies with information from this Site. In these cases no personally identifiable information, including information used in the 'Expert' listing, will be copied over to the other copies of this Site.
Contacting Us. If you have any questions about this Privacy & Confidentiality Policy Statement, the use of the Site, or would like to provide comments to us, please contact us at info@healthconnections.info.
This Privacy & Confidentiality Policy Statement applies only to information collected by HCI through the Site.
All disputes that may arise shall be settled exclusively by a competent court in The Netherlands. This agreement shall be governed by and interpreted in all respects in accordance with the law of The Netherlands.

Confidentiality Statement

Information shared via and published within the Site that includes patient information should adhere to patient privacy and anonymity principles, which are based on the recommendations of the International Committee of Medical Journal Editors (http://www.icmje.org/ethical_5privacy.html). These principles apply equally to formal medical publications and the informal interactive communication permitted by HCI's services and tools, including online discussion groups, chat rooms, or e-lists.

Users and members of the Site should be aware when they provide information about individual medical conditions in the context of such discussions that information may not be linked with a personal identifier. The Site will not collect information about individual medical conditions without the express permission of the patient visiting a health professional.

Physicians and other healthcare professionals should be aware that any patient information reported in the context of the Site must adhere to the confidentiality principles listed herein. Moderators of the Site will make every effort to ensure that all posted material adheres to the principles stated herein and, when in doubt, will query the individual providing the information. If the individual is a patient providing such information, the moderator should query the patient as to whether the patient intends for sensitive medical information to be revealed. If the individual providing the information is a healthcare professional, the moderator should query the professional as to whether the patient discussed has provided informed consent and shall ask for verification if and when necessary.

Patients have a right to privacy that should not be infringed without express informed consent. Identifying patient information should not be published in print or online descriptions, photographs, or pedigrees (illustrations of how a disease is expressed within an extended family for purposes of determining possible inheritance) unless the information is essential for scientific purposes and the patient (or parent or guardian) gives express informed consent for publication.

Identifying details should be omitted if they are not essential, but patient data should never be altered or falsified in an attempt to attain anonymity. Complete anonymity is difficult to achieve, and informed consent should be obtained if there is any possibility of identifiable information being disclosed. When express informed consent has been obtained, it should be indicated in the information posted.