Positive People, operated by Lifia Corporation, exists to create a safe, supportive environment where people living with HIV can connect, share experiences, and support one another without fear of stigma or judgment. Our mission drives everything we do: empowering our community members to improve their health outcomes, build meaningful connections, and reduce the social barriers that too often accompany an HIV diagnosis.
Essential to this mission is our unwavering commitment to protecting your privacy and maintaining the trust you place in our platform. We recognize that meaningful peer support requires a space where members feel secure in sharing their experiences, concerns, and hopes. This privacy policy reflects that commitment, detailing how we safeguard your information while enabling the connections and research that can improve health outcomes for our entire community.
The policy below explains how Lifia Corporation collects and uses information through the Positive People platform, the choices you have about sharing your experiences, and the strict protections we maintain to ensure your privacy. Every aspect of our privacy practices is designed to support our community's ability to connect, share, and grow while maintaining appropriate boundaries and protections.
If you have questions or concerns regarding this Privacy Policy, please contact support@positivepeople.us.
The Positive People platform manages several categories of information, each with different levels of visibility and protection:
1.1 Platform-Visible (public) Information: When you participate on Positive People, certain information is visible to other verified platform members, approved researchers, and Lifia staff. This shared information includes:
We will refer to this information as “public information.” Public information does not include:
It's important to understand that while public information is visible on the platform, Positive People is not a public social network. Access is restricted to verified members who have completed our authentication process, along with approved researchers and staff. We do not support the direct sharing of content to external social media platforms, and we implement strict technical measures to prevent unauthorized access to platform information.
However, since this information is visible to our broader community of verified members, we strongly recommend selecting an anonymous username and avoiding the posting of personally identifiable information (PII) in shared areas of the platform. PII includes details that could connect your virtual and physical identity, such as your physical or email address, phone number, or specific birthdate. While we employ automated systems to identify and remove PII from shared areas to maintain user privacy, the best protection is careful consideration of what you choose to share.
All members agree to our community guidelines which prohibit sharing or republishing information from the platform elsewhere. However, as with any digital platform, we cannot guarantee that all members will honor these agreements. This is why we emphasize the importance of maintaining appropriate boundaries in what you choose to share, even within our verified community.
1.2 Research-Accessible Information: Approved researchers (see section 2.2) have access to public information. Researchers also have access to some information that is not public. This information is shared under strict controls, and includes:
Clinical data and survey responses are special categories of data and require additional privacy protections and explicit consent.
1.2.1 Clinical Data Sharing: We offer members the option to share limited clinical data related to HIV care (viral load, CD4 counts, and HIV medication information) to advance HIV research and improve care outcomes. This is entirely voluntary and separate from regular platform participation. If you choose to share clinical data, your healthcare provider will securely transmit specific health information, such as lab results and medication data, to our servers.
To protect your privacy, we maintain strict separation between clinical research data and platform user information through a comprehensive system of technical and administrative controls. Clinical data is stored in a separate, secure database with its own administrative controls and access restrictions. Platform administrators who can access user content and communications cannot access clinical data, ensuring that health information remains de-identified at all operational levels.
Clinical data may be connected to your platform activity only through an anonymous identifier, ensuring that researchers cannot link clinical information to your identity. We never store clinical data alongside your personal information or platform profile.
We understand that sharing clinical data is a significant decision that warrants regular review. Every six months, we will remind you that you're sharing clinical data and provide a simple way to review or change your choice. You can opt out of clinical data sharing at any time through your account settings, by responding to our reminder notifications, or by emailing support@positivepeople.us. While opting out will prevent future sharing of your clinical data, please note that previously shared data may have already been used in research projects.
1.2.2. Survey Participation: Our platform enables researchers to conduct surveys that help advance understanding of living with HIV. All surveys are reviewed by Lifia staff. Researchers are not allowed to collect personally identifying information in surveys. Survey participation is always voluntary, and you can choose how your responses are used. When you participate in a survey, whether initiated by our platform or by approved researchers, your responses are shared with the researcher conducting the study.
By default, survey responses are also saved in our research database, where they may be used for future approved research projects. However, we recognize that you might want to participate in a specific survey while keeping your responses private from broader research use. For this reason, every survey includes an option to opt out of having your responses saved in our research database. This opt-out choice affects only the storage of your responses in our database—your answers will still be shared with the researcher conducting the specific survey.
For both clinical data and survey responses, we employ strict security measures to protect your information. All research projects using this data must be approved by our steering committee, which includes a majority of members living with HIV. This ensures that research serves community interests while maintaining appropriate privacy protections. Before sharing platform data with researchers, we employ a comprehensive process to protect user privacy. This includes automated scanning tools to identify potential personally identifiable information, human review of flagged content, and strict verification procedures. While we make every effort to remove PII from research data, we strongly encourage users to maintain anonymity in public areas of the platform as an additional privacy protection.
1.3 Browser Data and Cookies: We use cookies (small text files stored in your browser) to improve your experience on the platform:
You can control cookie settings through your browser, though some platform features may not work without basic cookies. We never use cookies to track you across other websites or collect personally identifiable information. Selected cookie data (see Section 1.2 under “De-identified site analytics”) may be included in anonymized research about platform usage patterns.
1.4 Private Information: This information is accessible only to authorized Lifia staff and is never shared with researchers or other members:
We protect this information with encryption and / or strict access controls.
1.5 Temporary Verification Information: During the account verification process, we temporarily collect sensitive documents to verify your HIV status. This includes either:
This information is used only for verification, is accessible only to authorized staff or your selected provider, and is permanently deleted once verification is complete.
Positive People uses and shares information to advance our mission of supporting people living with HIV, improving health outcomes, and reducing stigma. This section explains how we use different types of information and who may access it.
2.1 Use of Information: We use information collected through the platform to create a supportive community environment and advance HIV research and care. Platform data helps us understand community needs, improve our services, and demonstrate the impact of peer support on health outcomes. We analyze usage patterns to enhance platform features and identify areas where additional support or resources may be needed.
Information collected through surveys and clinical data sharing enables research that can improve HIV care and support services. This research helps healthcare providers better understand the needs of people living with HIV and helps identify gaps in current care systems.
2.2 Who Has Access to Information: Access to platform information is carefully controlled and varies by user role and information type:
All research proposals are reviewed by our steering committee, which includes a majority of members who are living with HIV. This ensures research serves community interests and maintains appropriate privacy protections. The steering committee evaluates proposals based on potential benefit to the community, privacy safeguards, and alignment with platform values.
2.3 Publication and Research Oversight: Before any research findings can be published, Lifia Corporation reviews all materials to ensure:
Lifia's research staff also conducts internal research to improve platform features and understand community needs. Internal researchers follow the same privacy and ethical guidelines as external researchers.
2.4 Aggregate Information Sharing: We may share aggregate statistical information with healthcare providers, insurers, and other organizations that support our mission. Aggregate information combines data from many users to show general trends and patterns, such as:
We share this information to demonstrate the value of peer support, secure resources for platform operation, and improve healthcare services for people living with HIV. This allows us to maintain the platform as a free service while protecting individual privacy. Aggregate information never includes details that could identify individual users.
2.5 Statement regarding HIPAA compliance and Data Management: The Health Insurance Portability and Accountability Act (HIPAA) governs the collection, use, and distribution of individually identifiable health information by healthcare providers and their business associates. Lifia Corporation, which operates the Positive People platform, serves as a business associate to various healthcare organizations and maintains HIPAA-compliant systems for managing protected health information (PHI). When users voluntarily share information on our platform, this sharing is not governed by HIPAA. However, when we receive clinical data from healthcare providers, this data is managed under HIPAA-compliant protocols. This arrangement includes:
For research purposes, Lifia maintains secure systems to combine platform data, authorized clinical data, and selected survey responses. This combined data is carefully de-identified before being shared with approved researchers. While we maintain necessary technical connections between different data types, these connections are protected by robust security measures that maintain appropriate separation of clinical and platform data.This approach allows us to advance HIV research while maintaining the highest standards of privacy protection. Users can revoke their consent for clinical data sharing at any time through their account settings.
2.6 Technical Infrastructure and Security: Positive People employs comprehensive technical measures to protect your information and maintain platform security. The foundation of your account security is your unique username and encrypted password combination, which controls access to protected areas of the platform and ensures that only authorized users can access secure features. We strongly recommend choosing a strong password and never sharing your login credentials.
Our security infrastructure includes industry-standard encryption protocols that protect your information both during transmission and storage. All data transmitted between your browser and our servers is encrypted, and sensitive information receives additional encryption protection while stored on our servers. Our database encryption provides yet another layer of protection for particularly sensitive data.
Our server infrastructure incorporates multiple security layers, including enterprise-grade firewalls to protect against unauthorized access, regular security audits and penetration testing, and continuous monitoring for suspicious activity. The physical servers themselves are housed in secure locations with environmental controls and restricted access.
Internally, we maintain strict security protocols that govern how our staff interacts with user data. Access to user information is limited by role and necessity, with all employees receiving regular security training. We require periodic password changes for internal systems, maintain comprehensive activity logs, and regularly review and update our security policies to ensure they remain effective.
2.7 Communication Policies: When you create an account with Positive People, you agree to receive certain types of communications from us. Some communications are essential to platform operation and cannot be opted out of while maintaining an active account. These include account verification and security notifications, responses to your support requests or inquiries, service-related announcements such as maintenance notifications, and legal notices and policy updates.
We also send optional communications that you can manage through your account settings. These include notifications of relevant platform activity, research participation opportunities, platform feedback requests, community updates, newsletters, and feature announcements.
For users who participate in research activities, we may send additional communications related to their participation. These might include survey invitations, updates about research they've participated in, requests for additional information, or notifications about clinical data sharing renewal.
2.8 Policy Updates and Changes: We regularly review and update this privacy policy to ensure it reflects our current practices and provides appropriate protection for your information. Updates may occur for various reasons, including changes in platform features or operations, new research initiatives, updates to relevant laws or regulations, enhanced security measures, or in response to community feedback.
When we make significant changes to this policy, we will notify you through multiple channels. We'll post a notice on the platform homepage, send an email notification to all users, and update the "Last Modified" date at the top of this policy. For substantial changes, we'll provide a summary of the modifications and, when appropriate, request renewed consent for data sharing.
2.9 User Control Over Information
We believe in giving you comprehensive control over your information and how it's used. Most of your information can be accessed and reviewed directly through your account settings. For information not visible in your account settings, you can submit a request to support@positivepeople.us.
You can update or correct most personal information through your account settings. For changes that cannot be made directly through your account, our support team is available to help. We commit to responding to such requests within a reasonable timeframe, typically within 30 days.
Your data sharing preferences remain under your control and can be modified at any time. This includes your research participation settings, clinical data sharing authorization, public profile visibility, group memberships, and communication preferences.
If you wish to delete your account, you can make this request by contacting support@positivepeople.us. Upon verification of your request, we will delete your personal information from our active databases, anonymize or remove your public content, delete your private messages, and terminate any clinical data sharing. However, you should be aware that some information may persist in encrypted backups, anonymized research data cannot be retroactively removed, and we must retain certain information as required by law. Additionally, content that others have copied may exist outside our control.
We retain your information only as long as necessary to provide platform services, comply with legal obligations, support legitimate research activities, and maintain platform security and integrity.
2.10 Additional Information
Positive People is designed for adults and does not knowingly collect information from individuals under 18 years of age. If we discover we have received information from a person under 18, we will promptly delete that information.
There may be circumstances where we must disclose information to comply with legal requirements, including valid court orders, subpoenas, or other legal processes. When legally permitted, we will notify you of such requests.
For any questions about this privacy policy or your information, you can reach us at support@positivepeople.us, through our support portal at https://positivepeople.us/support, or by mail at:
Lifia Corporation
4736 Marsh Road
Okemos, MI 48864
or email support@positivepeople.us
We strive to respond to all inquiries within 5 business days.
