At Koneksa Health, protecting your privacy is part of our commitment to improving health


About this site

Welcome to the Koneksa Health platform.

Our online platform is designed to help people and clinical research organizations work together to develop, and evaluate medications and practices to improve health. We may work with, but are not limited to, both commercial and academic institutions.

We do this by integrating data from wearable devices; apps and other health devices used by Koneksa Health program subjects as well as subject questionnaire responses, to contribute to the data gathered in other clinical contexts in the assessment of medication efficacy.

Your privacy is very important to us. By accessing our website you agree to the terms of this policy. We may make changes to this policy from time to time that we will post here. Your continued use of the Koneksa platform is deemed to be acceptance of these changes so please check back periodically for changes.

Koneksa Health complies with the EU-U.S. Privacy Shield Framework as set forth by the U.S. Department of Commerce regarding the collection, use, and retention of personal information transferred from the European Union to the United States. Koneksa Health has certified to the Department of Commerce that it adheres to the Privacy Shield Principles.  For the purposes of enforcing compliance with the Privacy Shield, Koneksa Health is subject to the investigatory and enforcement authority of the US Federal Trade Commission.  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/.

Koneksa Health has further committed to refer unresolved Privacy Shield complaints to Truste, an alternative dispute resolution provider located in the United States. If you do not receive timely acknowledgment of your complaint from us, or if we have not addressed your complaint to your satisfaction, please visit Truste for more information or to file a complaint. The services of Truste are provided at no cost to you.

You may have the option to select binding arbitration for the resolution of your complaint under certain circumstances, provided you have taken the following steps: (1) raised your compliant directly with Koneksa Health and provided us the opportunity to resolve the issue; (2) made use of the independent dispute resolution mechanism identified above; and (3) raised the issue through the relevant data protection authority and allowed the US Department of Commerce an opportunity to resolve the complaint at no cost to you. For more information on binding arbitration, see US Department of Commerce's Privacy Shield Framework: Annex I (Binding Arbitration).

Based on the data we gather from study subjects, we may modify the platform, the types of devices, apps and services with which we provide and integrate, the types of data we collect from participants, and the reference data sets that we use. Additionally, we may conduct other analyses that support our mission to connect and analyze different sources of health data in our goal to improve the assessment of patient outcomes and quality of life. We may do this at the direction of our clients or at our own choosing. We may collect health and demographic data from both adults and children as part of clinical research studies. International guidelines designed to protect both adults and children participating in research specify that the sponsors of research obtain informed consent from adults an assent from children. The informed consent or assent process includes a description of how your data will be used, the safeguards designed to protect your personal information and any applicable risks. The materials used to obtain consent or assent are different in each study, but are approved by institutional review boards (IRBs) or ethics committees who have responsibility for supervising such research.


What we collect

We collect data about you from four sources:

  • you
  • the devices or mobile applications used in a study we support
  • the health organization through which you participate in the Koneksa Health program

What we collect depends upon the method of implementation of our platform that is chosen by our clients. The three cases below are indicative, but not exclusive, of the methods of implementation we may make:

  • Collect email and phone number in order to send you notifications of tasks due or questionnaires that our clients issue to you in the execution of their research
  • Collect additional health data from devices that may be connected to our software, for example: data about your activity level, heart rate, respiratory function or weight
  • Collection of additional health data through questionnaires that is not available or not collected through devices or apps you may use, for example a questionnaire question may ask you if you felt more or less pain today than yesterday

You may be required to create an account on our platform that requires an email address or phone number in order to fully participate in the study in which you are enrolled. Only the name and contact information we collect to enable you to register and participate in the Koneksa Health program data directly identify you.

Your contact information will be used by Koneksa Health to validate your Koneksa Health account or calibrate measurements recorded by you. Our clients are responsible for setting up your account with you. Our responsibility is to protect and de-identify the information you provide when your account is created and you use our platform.

You may have the right to access the personal data that we hold about you and to request that we correct, amend, or delete it if it is inaccurate or processed in violation of the EU-US Privacy Shield Policy. These access rights may not apply in some cases, including where providing access is unreasonably burdensome or expensive under the circumstance, where it would violate the rights of someone other than the individual requesting access, of if deleting the data would be inconsistent with regulatory guidelines that apply to the research study.

If you would like to request access to, correction, amendment, or deletion of your personal data, you can submit a written request to the contact information provided below. We may request specific information from you to confirm your identity. In some circumstances we may charge a reasonable fee for access to your information.

The data collected about you on this platform will be connected to you by a randomly-generated User ID. Your User ID will be used to connect important information about you on the platform, including:

  • Records of your consent to participate in the Koneksa Health program, your acceptance of this privacy policy
  • The devices or applications you authorize the Koneksa Health platform to connect to, including the name of the device and the date you connected it and activities recorded by your device during your participation in our program, such as your sleep, activity level (i.e., number of steps you took), heart rate, blood sugar, blood glucose, your weight
  • Your responses to health related questionnaires
  • How often you visit this site and how you use this site

Our platform uses session cookies to establish a connection with the web browser on your smart phone or other computer. These temporary cookies are erased from your computer’s memory when you close your web browser.

The data we collect from the apps and devices you connect vary based on the specific devices and apps you choose to connect. Where we get your device and app data from

We work with multiple device providers and integrate the devices into our platform typically via secure Internet connections.

In most implementations our clients (study sponsors or their partners) will setup a device for you and may then disconnect the device, ask you to return the device, and cease collection of information from you.

Your connection and account in our platform is discontinued when either you a) complete the research study conducted with one of our clients or b) request to be removed from the study. When your participation in a study discontinues all connections between devices you may have used to collect information are disconnected, questionnaires you may still be scheduled to answer are cancelled and your account closed – removing email address and phone from our database if it was collected as part of our account configuration.

When a device or app is disconnected, we no longer will collect data from that device or app. But, we will continue to use the data you previously provide.


How we plan to use the data

We plan to use the data we collect on this site to assess the effectiveness of device or application data integration into our site, to evaluate the quality of the data, to analyze possible associations among the data aggregated from the devices, applications and the responses to health related questionnaires, to evaluate the effectiveness of interventions that have been offered and used with you.

We may use a de-identified version of the data we collect in future analysis and research, to inform other study designs or for demonstration or research publication purposes.

Before we use your personal data for a purpose that is materially different than the purpose we collected it for or that you later authorized, we will provide you the opportunity to opt. How we plan to share the data

Other third parties who support us in managing this site, the study and the data may have access to the data. We require all third parties who have access to the data to agree to protect it appropriately. Where required by the Privacy Shield, we enter into written agreements with those third-party agents and service providers requiring them to provide the same level of protection the Privacy Shield requires and limiting their use of the data to the specified services provided on our behalfUnder certain circumstances, we may remain liable for the acts of our third-party agents or service providers who perform services on our behalf for their handling of EU personal data that we transfer to them.

While we do not plan to use or share your data in other ways, we may be required by law, regulation or a court or government authority to use or share your information. If this happens, we will comply with those requirements and we will also seek to preserve your privacy as we comply.

 


How to ask a question or raise a concern

Send us an email at privacy[at]koneksahealth.com with your question or concern. We will investigate and attempt to resolve any complaints or disputes regarding the use or disclosure of your personal data within 45 days of receiving your complaint. We have agreed to resolve any unresolved complaints through an independent dispute resolution process.


When was this privacy policy last updated?

May 17, 2017

We reserve the right to amend this policy from time to time.