Privacy Policy

  1. Home /
  2. Privacy Policy

Effective July 20, 2023

Responsum Health is a patient engagement company that creates and manages online health communities (“Platform”) designed to provide reliable information, resources, and support for patients, caregivers, and loved ones whose lives have been impacted by chronic diseases and other health challenges. 

In offering these services, Responsum Health will always respect its users’ privacy concerns. This Privacy Policy (the “Policy”) describes the type of information Responsum Health collects from people who visit our website or use any of our Platforms (collectively “Services”) and how that information may be used and shared. 

This Policy is designed to ensure that you understand our practices with respect to the information we collect from you throughout our Services. By using the Services, you agree to the terms of this Policy, which are also incorporated by reference into the Terms of Use of our website and the End User License Agreement of our Platforms.

Changes to Our Privacy Policy

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.

About Responsum Health

Responsum Health provides patient engagement and support platforms for patients who want to:

  • Receive curated, updated, and reliable information about their condition from trusted sources to understand their options and become active agents of their own health journey 
  • Be connected with resources and support tools like clinical trial opportunities, financial assistance resources, educational materials, etc., to 
  • Track their health data so they can be an active participant in their own healthcare and symptom management
  • Create collective knowledge about disease, health, and treatments by:
    • contributing their health data to research
    • sharing their health information with other members of their online community
    • connecting with other members and providing peer support and being able to share their own experiences with conditions that affect health and wellness
  • Provide increased awareness and access to healthcare services

Who Might View or Have Access to The Data We Collect

If you become a Member of any of our Platforms, 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 Platform. By sharing your data, others can learn from it. 
  • Responsum Health – We use the data you provide internally, both to improve our services and to conduct our own research.
  • Our Partners – Responsum Health frequently partners with other institutions to conduct research and manage patient communities. These Partners could include, but are not limited to: universities, pharmaceutical companies, hospital systems, value-based care providers, insurance companies, regulatory bodies (including the US Food and Drug Administration (the FDA)), and other entities. 
  • Vendors – We also contract with various service providers for business and technical services like email delivery, site hosting, marketing, advertising, help desk support, and others.

What Kind of Information We Collect

Identifying Data

Data that is identifying or potentially identifying is treated as “Identifying Data.” This data includes:

  • UserID assigned by the Platform 
  • Platform password (this is collected as part of the registration process. No one other than you knows what your password is)
  • Display Name (Member may provide as part of registration or in a Member’s Profile Page)
  • Email address 
  • IP Addresses 
  • Geolocation data 
  • Private Message content for Private Messages between Members

Responsum Health may de-identify Identifying Data. Once identifying information is removed, Responsum Health no longer treats the data as Identifying Data.

Responsum Health 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 Responsum Health.

We do not share or sell Identifying Data with unaffiliated third parties for their own marketing purposes. 

Non-Identifying Data

“Non-Identifying Data” is all information, except Identifying Data, that Members provide about themselves when using the Platform or in other communications with Responsum Health. Examples of Non-Identifying Data that Members may submit include:

  • Demographic or biographical information, such as age, gender, ethnicity, and location (city, state, country)
  • Condition/disease information, including diagnosis, symptoms (e.g., frequency, duration, severity), family history
  • Course of treatment (e.g., medicines, surgeries, therapies, etc.), including side effects
  • Non-identifying photographs or pictures
  • Laboratory or diagnostic test results
  • Health measures (e.g., weight, blood pressure, sleep, activity)
  • Laboratory results and biomarkers (e.g., CD4 count, viral load, creatinine, images)
  • Structured survey responses
  • Connections to other people on the Platform (e.g., Followers, Leaders, and Groups)
  • Free text entries, including community chat posts, comments, treatment evaluations, surveys, annotations, journals, and feeds (collectively, “Free Text Entries”), that you make anywhere on the Platform, all of which are by default available to view by the public, including unregistered users (Please Note: If you include information that would otherwise be considered “Identifying Data” within any Free Text Entries, for purposes of this Policy, such information will be treated as “Non-Identifying Data”)

Responsum Health 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 Responsum Health.

Other information we collect when you visit and use the website and Platform may include:

  • the operating system you are using
  • the Internet browser you are using
  • the web page you requested to visit
  • Your unique device identifier

Platform Use Data

We, our Partners, 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, whether you open email communications we send to you, and whether you interact with advertising or content displayed on the site and third-party sites. The analytics code also collects information about you such as geolocation, age, gender, affinity categories, and interests, which can be used by Responsum Health. 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 Responsum Health 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.

How Data is Used and Shared

You should expect that every piece of Non-Identifying Data you submit on Responsum Health and its platforms may be shared with Partners.

How Identifying Data is Used

There are only 3 ways Identifying Data is shared with the community.

  • The Display Name you created during the registration process is used throughout the Platform to represent you.
  • Your avatar image, whether or not it is identifying, is also used to represent you and your profile on the Platform.
  • Any identifying information you choose to share in a Free Text Entry will be shared with everybody on the Platform who chooses to read it.

We will never sell your identifying information for non-Responsum Health advertising purposes.

Responsum Health 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.

Responsum Health will use a member’s e-mail address to send them a variety of notifications, including private message notifications, newsletters, invitations to participate in clinical trial opportunities, and promotional content from Responsum Health and some of our Partners. You may change this setting on your account page, or by clicking the unsubscribe link at the bottom of any email you receive from Responsum Health. However, all Members receive administrative emails (e.g., password reset), which you cannot opt out of while you remain registered with the Platform.

Responsum Health, in some instances, will allow Vendors to have access to Identifying Data for the purpose of operating or improving the Platform or other Responsum Health activities and offerings. Responsum Health investigates all engaged Vendors to ensure that their security and privacy practices are compliant with relevant regulations and up to Responsum Health standards. Specific examples where a Vendor may have access to Identifying Data include:

  • If you make a request, Responsum Health may provide a Vendor the minimum amount of Identifying Data needed to fulfill the request. Examples include requesting to receive the company newsletter via email, requesting an email response from the Responsum Health support team, or requesting a t-shirt be sent to your postal mail address.
  • We may use your identifying information to exclude you from certain Responsum Health advertisements or to present certain advertising, content, or participation opportunities to you.

Responsum will also use the Identifiable information you provide to us to 

  • Personalize your Newsfeed.
  • Customize the content that populates the Resources Page.
  • Notify you of any community guidelines or policy violations.
  • We may disclose your Personal Information if required to do so by process of law, or if necessary in order to investigate fraud, a violation of our Terms of Use, or in connection with any harm being caused to a third party or their rights.
  • Respond to your requests, such as to answer your questions about using our Services, content you may have posted, your experience using our Services, and to provide you with clarifications, explanations, or perhaps the benefits offered by features on the Platform.

How Non-Identifying Data is Used

The Non-Identifying Data you add to your profile and other sections of the Platform is displayed to the Community. 

Aggregated data (for example, counts of the number of Members with a certain condition or on a particular treatment) is not identifying and is displayed to the Community and shared with Partners.

In addition to serving the individual needs of our Members, Responsum Health and its Partners are interested in better understanding the patient experience and improving treatment options, information sharing, and health outcomes for everyone. Responsum Health provides Non-Identifying Data, in individual and aggregate format, to Partners for use in scientific research, product development, managed communities, and market research. When selling this information, Responsum Health removes Members’ Identifying Data (de-identification) to reduce the possibility of re-identification and contractually forbids Partners from trying to re-identify Members.

Responsum Health may periodically ask Members to complete surveys about their experiences (including questions about products and services). Responsum Health researchers analyze survey responses (possibly in combination with data from the Platform). 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 Responsum Health.

Responsum Health may report individual adverse events and drug safety information to regulatory Partners like the FDA, CDC, or other bodies (US and international) as well as directly to pharmaceutical and other Partners. When reporting such information, Responsum Health 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 Responsum Health reports may include Free Text Entries or images on the forums or evaluations.

Finally, Responsum Health 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 e-mail 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.

Responsum Health, 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 of Use and this Privacy Policy are prohibited.

How Platform Use Data is Used

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 Responsum Health 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 as a whole. 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 Partners, to do relevant analysis 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 a Responsum Health Platform, to promote certain advertiser content, participation opportunities, or to exclude you from notifications that are not relevant to you, including when you are visiting other sites or platforms. We may additionally use the information we have collected from you to enable us to display advertisements to our advertisers’ target audiences. Even though we do not disclose your personal information for these purposes without your consent, if you click on or otherwise interact with an advertisement, the advertiser may assume that you meet its target criteria.

Choices About How We Use and Disclose Your Information

We strive to provide you with choices regarding the personal information you provide to us. We have created mechanisms to provide you with the following control over your information:

Tracking Technologies and Advertising: A cookie is a small data file stored by your browser that can be retrieved by sites at a later time. 

  • Required Cookies. Cookies necessary for the core features of Responsum Health to operate properly. You may be able to use your browser cookie settings to refuse all cookies, but please note that some parts of this site may then be inaccessible or not function properly.
  • Optional Cookies. Cookies that allow Responsum Health and its Partners to evaluate site usage in order to improve its performance and to provide a more personalized user experience. 

Disclosure of Your Information for Third-Party Advertising: If you do not want us to share your personal information with unaffiliated or non-agent third parties for promotional purposes, you can opt-out by sending us an email with your request to privacy@responsumhealth.com

Targeted Advertising: If you do not want us to use information that we collect or that you provide to us to deliver advertisements according to our advertisers’ target-audience preferences, you can opt-out by sending us an email with your request to privacy@responsumhealth.com. For this opt-out to function, you must have your browser set to accept all browser cookies.

We do not control third parties’ collection or use of your information to serve interest-based advertising. However, these third parties may provide you with ways to choose not to have your information collected or used in this way. You can opt out of receiving targeted ads from members of the Network Advertising Initiative (“NAI”) on the NAI’s website.

Closing Your Account

You are free to stop using this service at any time. If you would like to delete your membership account and data, you have a few options. You could either,

  1. Contact us at usersupport@responsumhealth.com using the email address associated with your account. Please provide your username in that email so that we may complete your request accurately.
  2. From the mobile app: Sign in to your account using the mobile app. Once you have signed in, click on ‘Settings’ in the lower right corner of your screen (the icon is three stacked horizontal lines). Once in Settings, scroll down and click on ‘Delete account’. A window will pop up asking if you are sure that you want to delete your account. If you are sure, then click ‘Delete’. 
  3. From your desktop: Log in to your account from your desktop or laptop computer. Once you have logged in, look for your name in the lower-left corner of the screen. Click the ‘up arrow’ to see the menu. Click on ‘Delete account’. A window will pop up asking if you are sure that you want to delete your account. If you are sure, then click ‘Yes, delete’.

You should be aware that it may not be technologically possible to remove each and every record of the information you have provided to us from our servers. The need to back up our systems to protect information from inadvertent loss means that a copy of your Personal Information may exist in a non-erasable form that may be difficult or impossible for us to locate. In addition, we have the right to delete any account at any time if required to do so by process of law, or if necessary in order to investigate fraud, a violation of our Terms of Use, or in connection with any harm being caused to a third party or their rights.

Also, 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. Responsum Health keeps special archives of your data for this purpose in accordance with relevant US and EU/EEA/UK regulations.

Other Special Cases

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:

  • Responsum Health may use your data in the case of an emergency or other circumstance that we determine requires a member of the management team to directly contact the Member (for example, a data breach that put the Member’s data at risk).
  • Responsum Health may share or disclose your data where required to comply with lawful requests from public authorities, including for national security or law enforcement requests, to comply with legal process, to resolve disputes, to enforce our agreements (including this Privacy Policy and the Terms of Use Agreement), or if in our reasonable discretion, use is necessary to protect our legal rights or to protect third parties.
  • Responsum Health may transfer your data to any successor to its business as a result of any merger, acquisition, asset sale, bankruptcy proceeding, or similar transaction or event. Members will be made aware of any changes in the current Privacy Policy that results from such a transfer.

Other Security Issues

Responsum Health 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.

Responsum Health takes commercially reasonable technical precautions to help keep Member data secure and consistent with applicable EU, UK, and US laws. We take these precautions in an effort 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, Responsum Health 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.

Retention of Personal Data

We retain personal data we collect from you where we have an ongoing legitimate business need to do so, for example, to provide you with a service you have requested, to retain your information for future marketing purposes, or to comply with applicable legal requirements.

When we have no ongoing legitimate business need to process your personal data, we will either delete or anonymize it or, if this is not possible (for example, because your personal data has been stored in backup archives), then we will securely store your personal data and isolate it from any further processing until deletion is possible.

Responsum does not collect or retain a user’s personal financial information, such as credit card data.

Links to Other Websites or Apps

The Responsum Health Platforms aims to connect members to useful healthcare resources that may help them in managing their conditions. As a result, Responsum Health 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 party and is subject to the third party’s privacy policy. The Responsum Health 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.

Your State Privacy Rights

State consumer privacy laws may provide their residents with additional rights regarding the use of their personal information.

California, Colorado, Connecticut, Delaware, Florida, Indiana, Iowa, Montana, Oregon, Tennessee, Texas, Utah, and Virginia provide (now or in the future) their state residents with rights to:

  • Confirm whether we process their personal information.
  • Correct inaccuracies in their personal information, taking into account the information’s nature processing purpose (excluding Iowa and Utah).
  • Data portability.
  • Opt-out of personal data processing for:
    • targeted advertising (excluding Iowa);
    • sales; or
    • profiling in furtherance of decisions that produce legal or similarly significant effects (excluding Iowa and Utah).
  • Either limit (opt-out of) or require consent to process sensitive personal data.

The exact scope of these rights may vary by state. To exercise any of these rights please send us an email with your request to privacy@responsumhealth.com. To appeal a decision regarding a consumer rights request please send us an email with your notice of appeal to privacy@responsumhealth.com

Residents of certain states may have additional personal information rights and choices. Please see Your State Privacy Rights for more information.

California Online Privacy Protection Act Notice

On September 27, 2013, California enacted A.B. 370, amending the California Online Privacy Protection Act to require website operators like us to disclose how we respond to “Do Not Track Signals” and whether third parties collect personally identifiable information about users when they visit us.

  • We do not track user activity that does not occur on our site and, therefore, do not use “do not track” signals.
  • We do not authorize the collection of personally identifiable information from our users for non-Responsum Health advertising purposes through advertising technologies without separate member consent.

California Civil Code Section 1798.83 also permits our members who are California residents to request certain information regarding our disclosure of Personal Data to third parties for their direct marketing purposes. To make such a request, please send an email to privacy@responsumhealth.com. Please note that we are only required to respond to one request per Member each year.

Children Under the Age of 18

Our services are not intended for children. If you are under 18, do not use or provide any information on this Website, our Platforms, or on or through any of its features. If we learn we have collected or received personal information from someone under 18 without verification of parental or other legal consent, we will delete that information. If you believe we might have any information from or about a child, please contact us at privacy@responsumhealth.com

Data Controller

Responsum Health controls the personal data collected by your use of our Services. 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 privacy protection equivalent to those in your country of residence. 

If you have any questions or concerns about our use of your personal data, please contact us at privacy@responsumhealth.com or by mail to:

Responsum Health, Inc.

100 M Street, SE, Suite 750

Washington, DC 20003

European User Rights

If you are a resident of the European Economic Area, the UK, or in certain other situations, you have the following data protection rights, which you can exercise by contacting us using the details below:

  • The right to access. You have the right to request copies of your personal data.
  • The right to rectification. You have the right to request that we correct any information you believe is inaccurate. You also have the right to request that we complete the information you believe is incomplete.
  • The right to erasure. You have the right to request that we erase your personal data, with exceptions provided by the GDPR.
  • The right to restrict processing. You have the right to request that we restrict the processing of your personal data, with exceptions provided by the GDPR.
  • The right to object to processing. You have the right to object to our processing of your personal data, with exceptions provided by the GDPR.
  • The right to data portability. You have the right to request that we transfer the data that we have collected to another organization, or directly to you, with exceptions provided by the GDPR.
  • The right to make a complaint to a data protection regulator. If you are a resident of the EEA, you can find your local regulator’s contact details here. If you are a member of the UK, you can make a complaint to the Information Commissioner’s Office (“ICO”).

You can withdraw your consent to our collection or processing of your personal data at any time. Withdrawing your consent will not affect the lawfulness of any processing we conducted prior to such withdrawal, nor will it affect the processing of your personal data or your personal information conducted in reliance on lawful processing grounds other than consent. 

Legal Bases for Our Collection and Use of Your Data

GDPR sets out a number of possible bases, three of which apply to Responsum Health and the Platform:

  • We need to use some identifying information just to operate the service. This includes your email address, username, password, and IP address, among other items.
  • We use your data for research with your consent, as described in this Privacy Policy. We will always ask for your additional, explicit consent before sharing identifying information with our Partners. This is described further, below.
  • In rare cases, we may need to share your data to comply with a legal obligation. See “Other Special Cases” above.

Exercising Your Rights

To exercise any of the above rights, you must submit a request to us by email to privacy@responsumhealth.com or by mail to:

Responsum Health, Inc.

100 M Street, SE, Suite 750

Washington, DC 20003

Only you, or a person that you authorize to act on your behalf, may make a verifiable consumer request related to your personal information. We cannot respond to your request if we are unable to verify your identity or authority. Your verifiable request must include the reference “Request for GDPR Privacy Information” in the subject line and the body of the message must:

  • provide sufficient information that allows us to reasonably verify that you are the person whose personal information we have collected;
  • describe your request with sufficient detail; and
  • include an e-mail address or mailing address, as applicable, for us to send our response.

Our website and App generally provide you with a reasonable means to view and change your profile information and you can opt out of marketing communications at any time by clicking on the “unsubscribe” or “opt-out” link in the marketing emails we send you.

Questions About the Privacy Policy

If you have questions or comments about our Privacy Policy, please let us know, or contact us at:

Responsum Health, Inc.

Privacy and Compliance Dept.

100 M Street, SE, Suite 750

Washington, DC 20003

Privacy@ResponsumHealth.com

Date of last revision: July 20, 2023

History of Updates/Changes to this Privacy Policy:

  • On July 20, 2023, clarifying language was added to the section “How Your Data is Used”  in this Privacy Policy. 
  • On June 3, 2023, this Privacy Policy was substantially revised to clarify language and provide specific examples to help illustrate the meaning of portions of the policy.
  • On May 17, 2022, this Privacy Policy was substantially revised.