Jenevive Health
This policy is provided by Jenevive Health, LLC, which publishes the Papaya mobile app, and Jenevive Health, Inc., which conducts research and data reporting (together, “Jenevive Health,” “Company,” “we,” or “us”). The two entities are affiliates under common ownership and jointly operate the Service described below; references to “we” in this policy refer to both entities, and the commitments in this policy bind both.
This policy describes the types of information we may collect from you or that you may provide when you visit or use the jenevive.health domain, including any content, functionality, and services offered on or through jenevive.health, and our Papaya mobile app (collectively, the “Service”), and our practices for collecting, using, maintaining, protecting, and disclosing that information.
Because Papaya is a health-focused application, much of the information you provide through the Service is consumer health data. Our practices for consumer health data are described in our Consumer Health Data Privacy Policy below, which forms part of this policy. Where this general policy and the Consumer Health Data Privacy Policy differ with respect to consumer health data, the Consumer Health Data Privacy Policy controls.
Please read this policy carefully. If you do not agree with our policies and practices, your choice is not to use our Service. By accessing or using the Service, you acknowledge this privacy policy. Note that where the law requires your affirmative consent for a specific collection, sharing, or use of your information — including consumer health data — we will obtain that consent separately rather than relying on your general use of the Service.
Our Service is not intended for children under 13 years of age, and no one under 13 may provide any information to or on the Service. We do not knowingly collect personal information from children under 13. If we learn we have collected or received personal information from a child under 13 without verification of parental consent, we will delete that information. If you believe we might have any information from or about a child under 13, please contact us at info@jenevive.health.
Where permitted by our Terms of Use, minors between 13 and 17 years of age may use the Service only through an account established and supervised by a parent or legal guardian. Participation in our research program is limited to users who have reached the age of majority in their state of residence (see Section 6).
We collect several types of information from and about users of our Service, including:
We collect information:
Our website may use cookies to recognize your browser, understand how and when you visit, and remember your preferences. You may refuse browser cookies through your browser settings, though some parts of the Service may not function properly if you do.
We use our own first-party analytics, operated on our own infrastructure, to understand aggregate usage of the Service and improve it. We do not use third-party analytics or advertising trackers, advertising pixels, or behavioral advertising networks in the Papaya app, and we do not disclose consumer health data to any analytics or advertising provider.
We use information that we collect about you or that you provide to us:
We use consumer health data only for the purposes described in Section 10, and we will not use it for purposes beyond those you have consented to or that are necessary to provide a product or service you requested.
Jenevive Health operates a research program consisting of one or more research studies designed to better understand real-world treatment patterns, symptoms, and outcomes in the conditions our apps serve. Current studies include the Hidradenitis Suppurativa Registry of Experiences and Long-Term Outcomes (“HS-REAL”); studies may be added, modified, or concluded over time. This section describes how research participation affects your data across all of our studies. Each study is governed by its own informed consent document presented to you before you enroll in that study. The applicable informed consent describes that study's specific purpose, procedures, data elements, risks, and compensation; if anything in this policy conflicts with a consent you have agreed to, the consent controls for that study.
There are two distinct ways your data can be used for research, each requiring your affirmative choice:
With the Research Participation setting enabled, research data may include the health information you record through ordinary use of the app:
Free-text notes you write in the app are not transmitted to research servers and are not used for research; they remain on your device as described in Section 9.
If you enroll in a specific study, that study may additionally collect, as listed in its informed consent:
Research data is collected and stored in de-identified form, consistent with the HIPAA Safe Harbor de-identification standard. Your research record is linked to an internal participant identifier through a one-way cryptographic process; the research team does not store your name, email address, login credentials, or payment details, and cannot look up your identity from the research dataset. Information you provide to receive compensation is collected and held by our payment provider (Tremendous) and is never joined to your research data.
Journal data used for research consists only of structured entries (scores, selections, medications, doses, and dates) — not free-text notes. This structured format substantially reduces the risk of identifying information entering the research dataset.
De-identified research data is owned by Jenevive Health and may be used for:
Any such use involves only de-identified data. We contractually prohibit recipients of de-identified data from attempting to re-identify any individual. You will not receive compensation from any commercial use of de-identified study data, and such use is disclosed in the study's informed consent.
If you withdraw from a study (or disable Research Participation entirely), no new research data will be collected about you for that study (or for any study). In addition, upon your verified request, we will delete the records that associate your account with your research participant identifier(s). Once these linking records are deleted, the connection between you and your previously contributed research data is permanently severed: neither we nor anyone else can identify which records in the research dataset were yours, and no further data can ever be attributed to you. The de-identified research data itself remains in the research dataset and may continue to be used as described in Section 6.4. Data already included in distributed de-identified datasets or published analyses cannot be recalled.
De-identified research data is retained indefinitely to support long-term, longitudinal research.
The Papaya app allows you to take and store photographs of affected skin areas to track your condition over time. These photos are stored locally on your device by default and are not transmitted to our servers. We cannot access them. You control these photos directly, including by deleting them within the app or deleting the app. If you use photos to generate reports for your healthcare provider, that sharing happens at your direction.
Some research studies may invite participants to contribute photographs for research purposes. No photo is ever transmitted to us or used for research unless you have affirmatively consented to sharing photographs.
If you consent to contribute photos to a study:
We may disclose aggregated or de-identified information that does not identify any individual for research, publication, product improvement, and commercial purposes as described in Section 6.
We may disclose personal information that we collect or that you provide:
We do not sell your personal information, and we do not share consumer health data with third parties for advertising purposes. Consumer health data is shared only as described in Section 10.
Much of the information you provide through the Service — including the health conditions, symptoms, treatments, and other health information you record — is "consumer health data" under the Washington My Health My Data Act and similar laws. Our collection, use, and sharing of consumer health data, and your rights with respect to it (including the rights to access, withdraw consent, and request deletion), are governed by our Consumer Health Data Privacy Policy, available at https://jenevive.health/papaya/privacy/chd.html. The Consumer Health Data Privacy Policy is incorporated into this Privacy Policy by reference and, with respect to consumer health data, controls in the event of any conflict between the two.
We have implemented administrative, technical, and physical safeguards designed to protect your information from accidental loss and from unauthorized access, use, alteration, and disclosure. These include encryption of data in transit using industry-standard TLS protocols, encryption of stored research data and photographs, separation of identifiable payment information from research data, and access controls limiting research team access to de-identified data only.
The one-way cryptographic linkage between user accounts and research identifiers is designed to prevent re-identification of participants from the research dataset, and is intended to significantly reduce the impact of any unauthorized access to research data.
The safety and security of your information also depend on you. Where you use an identity provider (Google or Apple) to access the Service, you are responsible for safeguarding those credentials. Unfortunately, the transmission of information via the internet is not completely secure. Although we work to protect your personal information, we cannot guarantee its absolute security, and any transmission of personal information is at your own risk.
We post any changes we make to this privacy policy on this page, with the revision date identified at the top. If we make material changes to how we treat our users' personal information — and in particular, before we collect, use, or share consumer health data for any purpose not disclosed at the time of collection — we will provide notice through the Service or by other reasonable means (such as email) and, where required by law, obtain your consent.
Jenevive Health (Jenevive Health, LLC and Jenevive Health, Inc.)
PO BOX 2841, Kirkland, WA 98083
General inquiries: info@jenevive.health
Privacy and consumer health data requests: privacy@jenevive.health