LinkingPatients (https://www.linkingpatients.com) is an online health community that enables its members to share their data and experiences. The platform is operated by LinkingPatients LLC. This Privacy Policy describes how the information collected from users of the Platform, including individuals who have registered to join (“Members”), may be used.
We reserve the right to modify this policy at any time, and without prior notice, by posting an amended Privacy Policy on the Platform. We will notify Members of changes we make to this Privacy Policy. We also encourage Members to review this policy periodically for any updates.
LinkingPatients provides this platform for patients who want to:
If you become a Member of the Platform, there are four broad groups of people who might have access to your data.
The Community – This refers to your fellow Members on the platform. You can share your data through your profile and the various social components on the site. By sharing your data, others can learn from it. You can mark some data (such as a condition) to be reserved for your Personal View only and that will not be made visible to the Community.
LinkingPatients – We use the data you provide internally, both to improve our services and to conduct our own research.
Our Partners – LinkingPatients frequently partners with other institutions to conduct research. These Partners could include, but are not limited to universities, pharmaceutical companies, hospital systems, insurance companies, and regulatory bodies.
Vendors – We also contract with various service providers for business and technical services like email delivery, site hosting, marketing, help desk support, and others.
Details of how these different groups might access or use our data are provided below.
There are three privacy levels you may choose for participation on the Platform if you are a member.
You choose one of these settings:
Public view: The data associated with your username and avatar image is viewable by both non-members and members of LinkingPatients; or
Community view: The data associated with your username and avatar image is only viewable on the Platform by other members of LinkingPatients; or
Personal view: Some data (as specified by you) will not be viewable on the Platform By anyone but you (For example, you may specify one or more conditions you are tracking should be hidden from your fellow members. Note that the LinkingPatients team can see this data, when necessary, but other LinkingPatients members will not see it.)
Public profiles may be indexed or stored by Internet search engines (e.g., Google) or other independent sites, which means your information might come up in the search results by anyone on the Internet, even after you change to a different privacy level.
You can change your privacy settings at any time. None of the privacy levels allows non-members of the community to contact you.
Data that is identifying or potentially identifying is treated as “Identifying Data.” This data includes:
LinkingPatients may de-identify Identifying Data. This would include removing identifying information from free text entries like forum posts or comments. Once identifying information is removed, LinkingPatients no longer treats the data as Identifying Data.
LinkingPatients may aggregate or statistically analyze Identifying Data from more than one member, in which case such resulting aggregated or statistically analyzed data will not be treated as Identifying Data by LinkingPatients.
“Non-Identifying Data” is all information, except Identifying Data, that Members provide about themselves when using the Platform or in other communications with LinkingPatients. Examples of Non-Identifying Data that Members may submit include:
LinkingPatients may aggregate or statistically analyze data, including from more than one Member. The resulting aggregated or statistically analyzed data shall be treated as Non-Identifying Data by LinkingPatients
We, and our Vendors, use analytics code and may use web tracking technologies such as cookies and pixel tags to understand how Members use our platform and to improve products and services. Such collected data (“Platform Use Data”) can include the URL of the websites you visited before and after you visited our Platform, the type of browser you are using, your Internet Service Provider, what pages in our Platform you visit, what links you click on, date and time of your visit and duration, and whether you open email communications we send to you. The analytics code also collects information about you such as geolocation, age, gender, affinity categories, and interests, which can be used by LinkingPatients. You may be able to modify your browser settings to alter which web tracking technologies are permitted when you use the Platform, but this may limit your use of the Platform.
Platform Use Data is typically only used by LinkingPatients and our Vendors. However, when de-identified it may be shared with our research Partners to help them understand how members use and benefit from the site.
You should expect that every piece of Non-Identifying Data you submit on LinkingPatients.com may be shared with Partners.
Non-Identifying Data may be displayed to the Community on LinkingPatients.com, unless you specify that it be reserved for your Personal View and not to be displayed to the Community. This is controlled by the privacy settings you selected. (See the Privacy Settings section of this Privacy Policy above.)
Members are encouraged to share health information but should consider that the more information that is entered, the more likely it is that you could be located or identified.
There are only 3 ways Identifying Data is shared with the community.
If you are using the Platform with a special account type other than the regular Patient account type, additional identifying information about you may be shared. For example:
We will never sell your identifying information for non-LinkingPatients advertising purposes.
LinkingPatients uses Identifying Data internally, as needed, for research, for maintenance and operation of the Platform, and to create better tools and more personalized experiences for you. We take steps to protect this Identifying Data and limit access to only those who need it for their job.
If we have a member’s permission, their email address will be used by LinkingPatients to send them a variety of notifications, including private message notifications, newsletters, study invitations, and promotional content from LinkingPatients and some of our Partners. You may change this setting at signup, on your Profile page, or by clicking the unsubscribe link at the bottom of any email you receive from LinkingPatients. However, all Members receive administrative emails (e.g., password reset), which you cannot opt out of while you remain registered with the Platform.
Additionally, Identifying Data is not shared with or sold to Partners unless explicit consent is given. Specific instances where consent may be requested include:
LinkingPatients, in some instances, will allow Vendors to have access to Identifying Data for the purpose of operating or improving the Platform or other LinkingPatients activities and offerings (such as research studies). LinkingPatients investigates all engaged Vendors to ensure that their security and privacy practices are compliant with relevant regulations and up to LinkingPatients standards. Specific examples where a Vendor may have access to Identifying Data include:
The Non-Identifying Data you add to your profile--except for data that you have marked for Personal View only--is displayed to the Community via your profile pages. (See the Privacy Settings section of this Privacy Policy above.)
Aggregated data (for example, counts of the number of Members with a certain condition or on a particular treatment) is not identified and is displayed to the Community and shared with Partners. Data that a member has marked as reserved to their Personal View may be included in such counts.
In addition to serving the individual needs of our Members, LinkingPatients and its Partners are interested in better understanding the patient’s experience and improving treatment options and health outcomes for everyone. For example, we may look at questions such as, “Do certain treatments work better for some types of people versus others?” LinkingPatients provides Non-Identifying Data, in individual and aggregate format, to Partners for use in scientific research, product development, and market research. When selling this information, LinkingPatients removes Members’ Identifying Data (de-identification) to reduce the possibility of re-identification and contractually forbids Partners from trying to re-identify Members.
LinkingPatients may periodically ask Members to complete surveys about their experiences (including questions about products and services). Survey responses (possibly in combination with data from the Platform) are analyzed by LinkingPatients researchers. Insights from the analysis may be shared with and/or sold to Partners in a way that does not identify any respondent. Member participation in these surveys is not required and refusal to do so will not impact a member’s experience with LinkingPatients.
LinkingPatients may report individual adverse event and drug safety information to regulatory Partners as well as directly to pharmaceutical and other Partners. When reporting such information, LinkingPatients does not provide Identifying Data, although we reserve the right to contact Members for follow-up at the request of agencies or Partners. In this context, the data that LinkingPatients reports may include free text or images on the forums or evaluations.
Finally, LinkingPatients may use Non-Identifying Data internally or send it to Vendors who assist with operating our services. For example, we may send treatment or condition information to an email provider so that information can be included in messages we send to you. In addition, some Vendors may use Non-Identifying Data to improve their own products and services.
LinkingPatients, like other online communities, is a “public forum.” Be aware that Non-Identifying Data, in the right combinations, might be used by other Members of the community to identify you. For example, having a very rare disease might make it easier to identify somebody when gender and state of residence are also known.
For clarity, “public forum” in this context does NOT mean that the content and data are freely usable by third parties. Any uses outside of our Terms and Use and this Privacy Policy are prohibited.
We use Platform Use Data for several purposes:
Authentication: We use Platform Use Data stored in cookies on your computer to indicate that you have logged into your LinkingPatients account and to enable you to use certain portions of our Platform.
Understand Our Users: We use Platform Use Data to analyze trends, track users' movements around the Platform, and gather demographic information about our user base. This provides us with the ability to determine aggregate information about our user base and usage patterns. Understanding how people use our Platform allows us to make the Platform better for everybody. It may also be used by our Vendors to improve their products and services. We may use this information, possibly in coordination with one of our research Partners, to do relevant research on user behavior or medical outcomes. We do not sell this usage data to third parties for advertising or marketing purposes. We sometimes provide our Partners with aggregated usage data of all individuals they have referred to our site. We will only provide your personally identifying or identifiable Platform Use Data to Partners with your express consent.
Administer Platform: We use Platform Use Data to help administer the Platform and Members’ use of the Platform. We may, in some circumstances, need to review this Platform Use Data in combination with specific Identifying Data to troubleshoot and resolve issues for individual users.
Advertising: We may use cookies or Platform Use Data to tailor advertisements about joining LinkingPatients, to promote certain participation opportunities to you, or to exclude you from notifications that are not relevant to you, including when you are visiting other sites or platforms.
You are free to stop using this service at any time.
Note: If you request deactivation or deletion, research that is already in progress or that was conducted prior to your request, will still include your data. This is important to support peer review of the research and replication of results — important parts of the scientific process. LinkingPatients keeps special archives of your data for this purpose in accordance with relevant US and EU/EEA/UK regulations.
There are instances, not covered above, where your Non-Identifying Data, Identifying Data, and Platform Use Data may be used and disclosed, including, but not limited to, the following:
LinkingPatients cannot guarantee the identity of any Members with whom you may interact in the course of using the Platform or who may have access to your displayed data. Additionally, we cannot guarantee the authenticity of any data that Members may provide about themselves.
LinkingPatients takes commercially reasonable technical precautions to help keep Member data secure, consistent with applicable EU, UK, and US laws. We take these precautions to protect your information against security breaches. However, this is not a guarantee that such information may not be accessed, disclosed, altered, or destroyed by breach of firewalls and secure server software. By using our Platform, you acknowledge that you understand and agree to assume these risks.
In the event of a breach, LinkingPatients will notify relevant regulatory authorities within 72 hours of becoming aware of the breach. We will notify affected Members as soon as possible after that.
While our goal is to help patients improve health outcomes, there are no certain benefits to using this website. However, keeping track of personal well-being, treatments, and symptoms has been shown to be helpful in improving overall health.
There is a possibility that you may feel uncomfortable sharing information online. It is possible that you could be identified using information you elect to display on LinkingPatients (and/or in conjunction with other data sources). You could be discriminated against or experience repercussions as a result of the information you share. For example, it is possible that employers, insurance companies, or others may discriminate based on health information.
You should understand that anyone can register on LinkingPatients and view the data you have chosen to share on the Platform.
In using the Platform, you are free to skip any non-required questions or data fields that make you feel uncomfortable.
The LinkingPatients health services hub aims to connect members to useful healthcare resources that may help them in managing their conditions. As a result, LinkingPatients may link to or refer to third party websites or services that we do not own or control. Any personal information you provide to them is provided directly to such third parties and is subject to the third party’s privacy policy. The LinkingPatients Privacy Policy does not apply to other websites or services, and we are not responsible for the privacy practices or content of any websites or services not controlled by us, nor are we responsible for such third party’s use or misuse of your personal information. If you have any concerns, we urge you to review the terms of those other websites or services for more information about their applicable policies.
If you have questions or comments about our Privacy Policy or contact us at:
LinkingPatients LLC
Attn: Privacy and Compliance Dept.
We and our servers are located in the United States and are subject to the applicable US local and national laws. These laws may not have equivalent privacy protection as those in your country of residence. When we share information about you with our various Partners, the data-sharing agreement includes data protection clauses. We also comply with the EU-US and Swiss Privacy Shield Frameworks.
Be aware that the European Court of Justice (ECJ) has determined that no data transferred to the United States can be adequately protected from the United States government and that the United States does not provide adequate judicial remedies against the United States government for invasions of Europeans’ privacy.
Those who choose to access the Platform do so on their own initiative and understanding that their use of the Platform and use of the Non-Identifying Data, Identifying Data, and Platform Use Data is subject to EU, UK, and US laws and regulations including the GDPR. If users choose to access or use the Platform, they consent to the use and disclosure of information (including GDPR "special category" data such as race, ethnicity, and data concerning health) in accordance with this Privacy Policy and subject to such laws. Transfer of data from residents of the EU/EEA/UK is done under this consent and for the purpose of providing this service to those users, as allowed by Article 49 of the GDPR.
LinkingPatients LLC complies with the EU-US and the Swiss-US Privacy Shield Frameworks as set forth by the US Department of Commerce regarding the collection, use, and retention of personal information transferred from European Union member countries (including Iceland, Liechtenstein, and Norway), the United Kingdom, and Switzerland transferred to the United States pursuant to Privacy Shield. LinkingPatients LLC has certified to the Department of Commerce that it adheres to the Privacy Shield Principles with respect to such information. If there is any conflict between the terms in this Privacy Policy and the Privacy Shield Principles, the Privacy Shield Principles shall govern. To learn more about the Privacy Shield program and to view our certification please visit https://www.privacyshield.gov and https://www.privacyshield.gov/list.
We acknowledge the right of EU, UK, and Swiss individuals to access their personal data under the Privacy Shield. Individuals wishing to exercise this right may do so by contacting our team.
We will also provide EU, UK, and Swiss individuals opt-out or opt-in choices before we share their data with third parties other than our agents, or before we use it for a purpose other than which it was originally collected or subsequently authorized. To request limiting the use and disclosure of your personal information, you may do so by contacting our team.
Pursuant to the Privacy Shield, LinkingPatients LLC is liable for the onward transfer of personal data to third parties unless we can prove we were not a party to the actions resulting in the damages.
In compliance with the Privacy Shield Principles, LinkingPatients LLC commits to resolve complaints about your privacy and our collection or use of your personal information transferred to the United States pursuant to Privacy Shield. European Union, UK, and Swiss individuals with Privacy Shield inquiries or complaints should first contact LinkingPatients.
All individuals have rights regarding their data. The European Union’s (EU) General Data Protection Regulations (GDPR) describe these rights in law. They include:
In some cases, these rights might be restricted. Some examples would include where the information requested compromises the privacy of another individual or is the subject of legal proceedings or investigation. Additionally, processing that has already occurred cannot be undone. If you have questions or complaints about our handling of these rights, see the information at the end of this policy.
GDPR sets out several possible bases, three of which apply to LinkingPatients and the Platform:
If you are a resident of the European Union or the UK and have a complaint about our use or processing of your data, you have a right to lodge a complaint with a national Data Protection Authority. The UK and each European Union member nation has established its own Data Protection Authority; you can find out about the Data Protection Authority in your country.
