Last Update: July 1, 2020
TREND Community Inc. (“TREND,” “we,” “us,” “our”) is a digital health technology company that was founded by parents who understand the needs of parents and other community members dealing with rare and underserved diseases. As parents of a child with a rare disease (Prader-Willi Syndrome) who share very personal information about our journey as caregivers on social media, we truly understand your concerns about privacy. Our mission is to inspire solutions that accelerate treatment discovery and improve the quality of life for those of us living with or caring for those with rare and underserved diseases by listening to communities and uniting stakeholders around them.
First and most importantly, the purpose of our analysis is to shed light on the prominent burdens and pressing unmet needs of your community. Most rare diseases have no cure and limited treatment options. One of the significant challenges that innovators encounter is the lack of data about these diseases. While there is a wealth of existing anecdotal information shared by patients and caregivers in their conversations on social media, it can be difficult to meaningfully extract these insights from such vast amounts of data.
TREND uses to analyze years of conversations shared within social networks to quantify disease burden, disease management strategies, and possible unmet needs. TREND uses these data to create Community Voice Reports and other products, which are shared back with the community for free, and used by its partners and sponsors.
TREND’s mission starts with its most important stakeholders, the community of people living with or caring for those with rare and underserved diseases. TREND learns from these communities and provides its Community Voice Reports to these communities for free.
In addition to the communities, TREND’s other stakeholders also include its partners and clients – foundations, medical researches, pharmaceutical and biotechnology companies, etc – who sponsor or pay for reports or the use of the insights TREND generates from the social data.
TREND has produced reports for over a dozen rare disease communities and several new communities are currently in the pipeline. TREND’s work is already having a profound impact. Here are some examples:
Privacy is a priority at TREND and integral to its business practices and products. TREND is committed to maintaining confidentiality and, wherever possible, anonymity. TREND strives to minimize the amount of personal data it receives, and further anonymize it during the analysis process to ensure that it cannot be traced back to any individual. Indeed, in most instances even TREND cannot trace the data to any individual person. TREND’s reports are summaries of or are drawn from a community’s experience, and do not include data that can be traced back to an individual unless TREND has that person’s specific consent, such as when TREND includes individual data or a direct quote. TREND consults with domain experts in both privacy and to remain abreast of current regulations and to ensure that everything TREND does is both legal and ethical. TREND also takes steps to keep the personal information it gathers from the use of its website trend.community (the “Website”) private and secure, and does not share that information with third parties, unless otherwise specified in this policy.
TREND incorporates the following definitions of personal and non-personal information.
Personal information is information that can be specifically tied to an individual such as a person’s:
TREND also collects IP addresses when you use the Website, which in some circumstances can be considered personal information.
Non-personal information is any information about an individual that does not reveal their specific identity, does not directly relate to an individual, and cannot be connected back to an individual, such as:
In addition to the uses otherwise specified under this policy, TREND may use non-personal information in the following ways:
TREND’s social media analytics begins with the data created by social media community groups. The specific types of data TREND collects, and how TREND uses that data, depends on the social media network from which it originated.
TREND collects only de-identified data from Facebook groups and pages. Before TREND collects any data from a Facebook group or page, it meets with the administrator(s) to discuss what TREND does, and how it might partner with the community. TREND then works with the administrator(s) to craft a statement notifying the group of TREND and its plans. This statement gives the membership an opportunity to ask questions and voice any concerns. At least one group administrator must sign a TREND Data Access Agreement indicating that they give TREND permission to analyze the group or page conversations before TREND obtains any information from that group or page. Once the TREND Data Access Agreement is signed, an administrator installs the TRENDshare app in the apps section of the group and initiates the data pull. TRENDshare is a sanctioned Facebook developer API (an interface or communication protocol between a client and a server intended to simplify the building of client-side software) that allows TREND to receive the anonymized conversation data for analysis.
The data TREND obtains from Facebook does not include any user profile information. Indeed, TREND does not collect user IDs and does not have a way to connect any post or comment to a specific user. The data TREND collects do not even allow it to determine that a set of comments and posts are linked to the same person. TREND neither receives nor has access to the names or other identifying information about the people in the group or people following the page.
The information TREND collects from the Facebook groups includes the following:
The only information used as part of TREND’s analysis is data collected from the text of the anonymized Facebook post or comment. The only way that TREND might inadvertently collect personal data in this process is if the text of a comment or post identifies a person or other associated individuals. TREND never stores the keys to reverse this process and is not able to reverse engineer the identities of the individuals who made posts or comments.
The information TREND collects from Facebook may be used to develop the following:
TREND Connect is an invitation-only online platform where patients and caregivers are invited to participate in moderated discussions, tell their stories, post photos, and journal about their daily experiences within specific communities (“TREND Connect Communities”). Upon joining, participants sign a consent to share their de-identified data for analysis. Information pulled from TREND Connect and used as part of its analysis include:
Unlike the information gathered from Facebook, TREND does not anonymize the information posted on TREND Connect. Therefore, the raw data that are collected through TREND Connect may include personal information. However, TREND does not share this personal information with anyone outside of the relevant TREND Connect Community without explicit consent. TREND only uses these data for analysis after receiving participants’ consent and de-identifying it.
Please note that any information that you volunteer in the TREND Connect platform will be accessible to other TREND Connect users. TREND cannot control what other TREND Connect users do with the information you share on the TREND Connect platform.
TREND may use the data it collects from TREND Connect and de-identifies in:
TREND Research is a cloud-hosted research and data management platform. It allows subscribing organizations (“TREND Research Organizations”), which can be individuals, groups of researchers, companies, institutions, or research organizations, to create portals to support their research goals. TREND Research Organizations use TREND Research to create patient registries, track clinical research, and capture real-world data.
TREND Research participants will receive an invitation to a specific TREND Research portal, where they will be asked to provide consent for the TREND Research Organization to collect their data through that specific portal. The participant typically provides data by answering surveys created by the TREND Research Organization. Examples of the type of data typically collected include, but are not limited to:
The data collected through the portals are owned by the associated TREND Research Organization in accordance with the terms of the consent provided to the participants.
TREND also gathers information through one-on-one interviews with patients and/or caregivers, which are conducted in person or by videoconference. TREND only shares this information if the patient and/or caregiver gives their consent. TREND may use the information from these interviews to:
TREND also reviews public content on Reddit for information about diseases.
The information that TREND collects from Reddit includes the following:
TREND does not collect media (such as pictures) from Reddit.
The information TREND collects from Reddit may be used to develop the following:
TREND also collects data from email listservs and other closed discussion groups where the participants know of and consent to TREND’s data collection. TREND’s process for collecting data through email listservs and closed discussion groups is similar to the process for Facebook. The remainder of TREND’s data collection is from public platforms, such as Reddit, Twitter, Instagram, or blogs – TREND can only access these data if it is public.
When using these data, TREND does not link the information to a name, username, or other identifier. TREND also does not collect media (such as pictures) from these sources.
A Community Voice Report is an overview of the topics discussed by a patient community on social media. Working with community leaders, TREND accesses and analyzes the conversations of patients and caregivers on social media. TREND’s Community Voice Reports quantify topics related to disease burden, disease management, and possible unmet needs discussed by the group. For example, Community Voice Reports list the trending topics that are discussed in a specific Facebook group or other social media discussion group.
Community Voice Reports include summaries and aggregated information. They never include personal information and none of the topics discussed in a Community Voice Report are attributable to any individual. We never use direct quotations from social media. Community Voice Reports do include anonymized quotations provided to TREND in one-on-one interviews with explicit consent. Direct quotations from social media postings are never included in Community Voice Reports. See Use of Quotations for more information.
The information gathered and used in Community Voice Reports comes primarily from social media platforms, such as Facebook groups, Instagram, Twitter, and Reddit. Email listervs, blogs, and other closed discussion groups are also consulted. This information is sometime supplemented with information gathered through TREND Connect and one-on-one interviews, the contents of which are used only with the consent of the participants. For more information on how TREND collects information from each of these sources, refer to the Data Collection section.
The Community Voice Reports are shared free of charge with the community from which TREND obtained information. For example, if information from a Facebook group is used to create a Community Voice Report, that final report will be shared with that Facebook group. TREND encourages community members to share the Community Voice Report with their medical and support teams, family members, teachers, researches, and pharmaceutical and biotechnology companies, as well as anyone else who can benefit from a better understanding of issues facing a rare disease community. Community Voice Reports are being used by communities and advocacy organizations to:
TREND also provides the Community Voice Reports to its clients who may be recognized as providing funding in support of the work to produce each report. Pharmaceutical companies and other stakeholders use the reports to:
Information from the Community Voice Reports can also be used in Community Impact Reports.
Data Explorations further analyze existing social data to uncover deeper insights. Unlike the breadth of a Community Voice Report, Data Explorations examine a single topic and reanalyze the surrounding posts, comments, and feedback to better understand the community’s interest.
The level of analysis done for Data Explorations depends on the depth requested by TREND’s client:
Like the Community Voice Reports, the information gathered to develop Data Explorations comes from the data TREND receives from TREND Connect Communities and other communities on social media, as detailed in the Data Collection section of this policy.
With the consent of patients and/or caregivers TREND uses the information it gathers from one-on-one interviews to create Patient Story Posters, which can be exhibited in the corporate office, at conferences, and other venues to raise awareness for the community.
TREND creates Community Impact Reports to demonstrate unmet medical needs for individuals affected by certain diseases and urgency for treatments. These reports are generated from data compiled from the following sources:
Community Impact Reports are developed for TREND’s clients, who can use the reports for purposes such as support for FDA submissions, payer negotiations, and other patient-centered initiatives.
TREND may also publish its findings in peer-reviewed journals, which may be co-authored by community partners and/or clients, present the findings at scientific and patient advocacy conferences, or post the findings on the Website’s “News” page. TREND compiles these findings by gathering information from: Community Voice Reports, Data Explorations, Health Initiatives, Interviews, Focus Groups, and Surveys.
TREND also uses the data from its reports to find unmet needs of certain communities. In some cases, TREND will organize and fund an initiative, known as a “Health Initiative,” where people can apply to participate in a study. All participants sign a consent form before participating.
TREND uses quotations that are provided by consenting participants through one-on-one interviews or online focus groups conducted on the TREND Connect platform. The participants provide consent to TREND to use their words publicly, but the quotations are anonymized. TREND uses the quotations in:
In addition to the social media analytics described under Data Collection TREND also receives and stores information when users visit the Website. Examples of information TREND receives through visits to its Website include:
TREND uses the information for such purposes as responding to requests, keeping users informed of news and information about TREND, sending invitations to participate in TREND Connect, customizing future visits to the Website, improving the Website or TREND’s products and services, and communicating with users.
Please note that the TREND Connect platform is a function of the Website. For more information about how TREND handles information shared through TREND Connect, see TREND Connect™ – Social Network and Screening Portal.
The Website also collects a set of general data and information during each visit. This information includes:
TREND uses this information to:
In general, TREND uses this information to improve the security and performance of the Website as well as to evaluate and improve the products and services it offers, whether on the Website or otherwise. Other than the IP address, TREND does not automatically collect personal information, though in some places on the Website the user has the opportunity to send TREND such information. For example, users can sign up for TREND’s newsletter, fill out a request for an invitation to TREND Connect, or share their stories on the TREND Connect platform. See TREND Connect™ – Social Network and Screening Portal for details regarding information automatically collected through TREND Connect.
|trend.community||trend_jwt||24 hours||Tracks session you are logged into|
|google.com||_ga||2 years||Used to distinguish users (Google Analytics)|
|google.com||_gid||24 hours||Used to distinguish users (Google Analytics)|
|google.com||_gat||1 minute||Used to throttle request rate (Google Analytics)|
Users can always choose not to input their information, even though it might be needed to take advantage of TREND’s services.
Users can set browsers to block cookies or erase TREND’s cookies from their computer, though doing so may prevent some aspects of the Website from working properly.
Most browsers provide the ability for people to manage cookies to meet their needs. In some browsers, users can set up rules to control cookies on a site-by-site basis, giving users granular control over their privacy. These features enable users to disallow cookies from all sites except the trusted sites. Please note that the Website and other TREND applications do not collect personal information about your online activities over time or across third party websites or online services. Therefore, “do not track” signals broadcasted from web browsers do not apply.
Please see the list below for browser manufacturers’ help pages that relate to cookie management:
For other browsers, please consult the documentation that your browser manufacturer provides.
Users can prevent data collection by Google Analytics by clicking on the following link: https://tools.google.com/dlpage/gaoptout. This will place an opt-out cookie, which prevents the future collection of data when visiting TREND’s (or another) Website. This opt-out cookie must be stored permanently on a user’s computer. If a user deletes this opt-out cookie or it is deleted automatically via browser settings, the user will have to install this opt-out cookie again when visiting TREND’s Website in the future.
In order to exercise your rights over your data pursuant to GDPR (namely articles 15 and the following of the European Regulation 679/2016) or any similar law, please e-mail TREND at firstname.lastname@example.org. For details, see also “Can I Access, Correct or Delete My Data?” and “GDPR (European General Data Protection Regulation)” below.
TREND may provide links to other companies on the Website. These external website addresses contain information that was published by organizations that are independent from TREND. They are used to provide additional information as a service for visitors to the Website.
TREND may use the contact information it collects through the Website’s contact forms to periodically e-mail or call users about any requested information. For example, TREND may send newsletters to all users who provided their email address for the purposes of receiving the TREND newsletter.
In addition, some of the features on the Website allow users to communicate with TREND using an online form. If the communication requests a response, TREND may send a response via e-mail. The e-mail response or confirmation may include personal information, such as names, addresses, etc. TREND cannot guarantee that these e-mails will be secure from unauthorized interception.
TREND may also contact users in cases where it is required by regulators to inform users about crucial information about products updates.
To unsubscribe from TREND’s mailing list, please press the unsubscribe button on any of TREND’s emails or contact TREND at email@example.com.
TREND secures its Website and other systems through technical and organization measures against the loss, destruction, access, amendment, distribution, or unauthorized use of data by unauthorized persons. However, no Internet transmission is ever 100% secure or error-free.
The Website contains information that provides a means of e-mail contact to TREND, as well as other means of directly communicating with TREND. TREND automatically stores any personal data transmitted by contacting TREND by e-mail (or other electronic means). Such personal data will be stored for the purposes of responding to the inquiries, among other business purposes consistent with this policy. Use of the contact form on the Website for an inquiry is considered consent to the storage and usage of personal data. However, TREND will not use these personal data unless it has been de-identified, or TREND receives explicit consent. These personal data will not be passed on to third parties, unless TREND receives permission or as otherwise indicated in this policy (see Sharing Information with Third Parties).
Ensuring that data are adequately protected is something that TREND takes very seriously. TREND takes several technical and procedural measures to securely transfer and store all data. For data transfers, TREND uses secure network protocols that establish an encrypted link between its server and the data source. All data are stored on state-of-the-art, private cloud servers hosted on AWS which utilizes enhanced encryption features and employs strict access management policies.
If you use TREND Connect or TREND Research, we keep your personal data as long as you wish to remain on our system to receive the benefits of our services. Similarly, we keep any personal data you provide to us through the Website until you ask us to erase them. Information we collect from closed social media are anonymized and thus are not personal information, as detailed above. We keep these data for as long as we believe it continues to maintain potential medical relevance for our work. We also keep publicly available social media information (such as twitter posts, as detailed above) for as long as we believe it continues to maintain potential medical relevance for our work.
TREND cares about protecting the online privacy of children. TREND will not intentionally collect any personal information (such as a child’s name or e-mail address) from children under the age of 13. If you think that TREND has collected personal information from a child under the age of 13, please contact TREND at firstname.lastname@example.org.
With respect to personal data received or transferred pursuant to the Privacy Shield Frameworks, TREND is subject to the regulatory and enforcement powers of the U.S. Federal Trade Commission.
Pursuant to the Privacy Shield Frameworks, EU, UK, and Swiss individuals have the right to obtain our confirmation of whether we maintain personal information relating to you in the United States. Upon request, we will provide you with access to the personal information that we hold about you. You may also correct, amend, or delete the personal information we hold about you. An individual who seeks access, or who seeks to correct, amend, or delete inaccurate data transferred to the United States under Privacy Shield, should direct their query to email@example.com. If requested to remove data, we will respond within a reasonable timeframe.
We will provide an individual opt-out choice, or opt-in for sensitive data, before we share your 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 to limit the use and disclosure of your personal information, please submit a written request to firstname.lastname@example.org
In certain situations, we may be required to disclose personal data in response to lawful requests by public authorities, including to meet national security or law enforcement requirements.
TREND’s accountability for personal data that it receives in the United States under the Privacy Shield and subsequently transfers to a third party is described in the Privacy Shield Principles. In particular, TREND remains responsible and liable under the Privacy Shield Principles if third-party agents that it engages to process personal data on its behalf do so in a manner inconsistent with the Principles, unless TREND proves that it is not responsible for the event giving rise to the damage.
TREND commits to resolve complaints about its collection or use of personal information. Individuals (including those from the EU, UK, or Switzerland) with inquiries or complaints regarding this policy, TREND’s use of personal information, or Privacy Shield, including those that wish to opt out of TREND’s use of their information, should first contact TREND at email@example.com or at the following address:1635 Market Street
TREND has further committed to refer unresolved privacy complaints under the Privacy Shield Principles to an independent dispute resolution mechanism, the BBB EU PRIVACY SHIELD. If you are an individual in the EU, UK, or Switzerland and do not receive timely acknowledgment of your complaint, or if your complaint is not satisfactorily addressed, please visit https://.bbbprograms.org/privacy-shield-complaintsfor more information and to file a complaint. This service is provided free of charge to you.
An individual has the possibility, under certain conditions, to invoke binding arbitration for complaints regarding Privacy Shield compliance not resolved by any of the other Privacy Shield mechanisms. For more information, visit: https://www.privacyshield.gov/article?id=ANNEX-I-introduction
If you are a European Union resident or are otherwise a data subject covered by the European Union’s General Data Protection Regulation (GDPR) or similar laws in other countries, you may have certain rights in relation to your personal information.
TREND seeks to avoid collecting personal data, and generally collects only de-identified data, which cannot be reconnected to the data subject.
In those instances, in which TREND does collect personal data, TREND processes that personal data only pursuant to the following legal basis:
In cases where TREND relies on legitimate interests for the processing of personal data, those interests are described in this policy under the relevant heading.
All data gathered by TREND, including European data, are entered into a cloud-based platform run by a U.S.-based company.
You will not have to pay a fee to exercise any of these rights. However, TREND may charge a reasonable fee or may refuse to comply with your request if your request is repetitive or excessive. Further, TREND may not accommodate a request to access, change, or delete information if, for example:
Please note that much of the data TREND collects are de-identified, making it non-personal information. Therefore, TREND may not have a way of linking those data back to you. As a consequence, TREND may not be able to provide access to, correct, or delete your data, as TREND may not be able to know whether they are actually your data.
You may also access or correct your privacy preferences by sending TREND an email with your name, address, and email address (if different from the one you use to contact us) at firstname.lastname@example.org.
TREND tries to respond to all legitimate requests in a timely manner. Occasionally, it may take TREND longer if your request is particularly complex or you have made a number of requests. In this case, TREND will notify you and keep you updated. TREND may also need to contact you about your request to verify your identity, confirm certain information, or clarify the request before TREND can fulfill the request.
If you are a European Union resident or are otherwise a data subject covered by GDPR or a similar law, and would like to exercise these rights, or if you have questions about your rights please contact TREND at email@example.com or use TREND’s contact details listed above.
California residents may have certain rights regarding the data about them held by TREND. If you wish to inquire about these rights or wish to exercise them, please email us at firstname.lastname@example.org.
TREND has engaged The Western Institutional Review Board (www.wirb.com), which determined that TREND’s studies are exempt under 45 CFR § 46.104(d)(4) because the aim of the research is to collect de-identified information from social media posts to better understand disease burden, disease management strategies, quality of life, and unmet needs of patient communities living with rare and chronic diseases. The research is not FDA-regulated nor classified, does not involve prisoners, and is consistent with the ethical principles of the Belmont Report. This means that consent from individual group members is not required, only permission from a group administrator.