Effective: August 2, 2018
Please also refer to our Terms and Conditions.
Brain Power, LLC and its affiliates, partners, research collaborators, and subcontractors (“Brain Power”) is a research-driven company with the core mission of applying the newest in neuroscience research and cutting-edge technology to alleviate the burden and improve the lives of differently-abled people with challenges related to their minds or brains. Brain Power’s products such as those called, from time to time, The Brain Power Autism System, Empower Me, Empowered Brain, PRISMS, REGAIN, Brain Buddy, Brain Guard, Learning Eye, and others (collectively, the “Platform”) are sets of software and accompanying hardware, often including apps for wearable devices, apps for mobile or portable devices, and accompanying websites or web data portals (“Site”). Our goal is to provide the Platform for families, caregivers, teachers, doctors, and behavioral therapists, and other professionals to interact and share their feedback and progress with each other and for Brain Power researchers to create collective knowledge about brain development, education, behavior, health, technology, and treatments. We fundamentally believe that our success in achieving this goal depends on a shared belief in working together to develop new strategies for improving the livelihood of all families. Here, we strive to outline some of the benefits and risks associated with being part of this Platform, including those related to privacy.
What kind of information we collect – Shared Data
Some of the information that Members provide about themselves through the use of the Platform and accompanying website may be shared with Brain Power, Partners, and others (“Shared Data”). Examples of Shared Data that Members may submit, including through their profile (“My profile”) and use of the Platform, may include:
• Biographical information, e.g. photograph, biography, gender, age, location (city, state and country), general notes;
• Condition/disease information, e.g. diagnosis date, first symptom, family history;
• Treatment information, e.g. treatment start dates, stop dates, dosages, side effects, treatment evaluations;
• Symptom information, e.g. severity, duration;
• Images and video, e.g. photographs, video recordings, audio recordings, likenesses, as recorded by the software or parts of the Platform;
• Primary and secondary outcome scores over time, e.g. ADOS, ABC, SRS-2, SCQ, other clinical behavioral reports, Quality of life, etc.;
• Progress in the games and applications, e.g. game scores, achievements, levels;
• Movement sensor information, e.g. macroscopic movements and gestures, microscopic movements, and repetitive or oscillatory movements as detected by accelerometers, gyroscopes, magnetometers, and other related sensors.
• Physiological measures, e.g. heart rate, heart rate variability, breathing dynamics, eye blink dynamics, etc;
• Location, as detected by use of device on networks;
• Genetic information, e.g. information on individual genes and/or entire genetic scans;
• Individual and aggregated survey responses;
• Information shared via free-text fields, e.g. the forum, treatment evaluations, surveys, annotations, journals, feeds, adverse event reports; and
• Connections to other people on the Platform, e.g. invited care team member, mentors, feeds, subscriptions.
In the course of using the Platform, Members may share information that could be used to reasonably identify them (“Personal Information”), including name, photograph, and email address. When a Member chooses to share Personal Information via a free text field (e.g. forum, treatment evaluations, annotations, journals, feeds and adverse event reports) and photos or images, the information shall be treated as Shared Data.
What kind of information we collect – Restricted Data
Some of the information that Members enter into certain fields when registering to use or using the Platform will not be shared as broadly (“Restricted Data”). The type of Restricted Data that Members may submit in the Platform may include:
• Name, as collected as part of registration or in a Member’s Account Information;
• Email address/disease information, as collected and verified as part of registration or in a Member’s Account Information;
• Password, as collected as part of registration or in a Member’s Account Information;
• Mailing address, as collected via email, forms, or private message to complete shipments or provide other support;
• Date of birth, and
• Private messages.
When a Member enters Personal Information, including name and email address, as part of registering to use Brain Power’s services, that Personal Information is treated as Restricted Data.
How and Why Shared Data are Used
In addition to serving the individual needs of our Members, Brain Power is interested in better understanding the end-user experience and improving our services and understanding of development for everyone. For example, we may look at questions such as, “Do certain applications work better for some groups of individuals versus others?” or “Which method of feedback or reward best reduces your signs of anxiety such as heart rate, shallow breathing, and words that relate to stress?” or “What are the data-driven subtypes of autism?” or “How stressful is eye contact for certain groups of people, and can engaging, predictable games help reduce the stress to a comfortable level?”, as illustrative examples of research questions. Brain Power may provide Shared Data, in individual and aggregate format, to Partners and other third parties for use in scientific research and market research. When providing this information, Brain Power removes Members’ Restricted Data prior to sharing information with Partners in order to reduce the likelihood of re-identification. However, it should be noted that we live in an era where many aspects of our data may ultimately be identifiable including even the way we walk, so Members should be aware that de-identification of data (by us or any other entity with which you share data including social media and public security systems) may not remove all possibility of being identified.
Brain Power may also periodically ask Members to complete short surveys about their experiences (including questions about products and services). Survey responses may be analyzed, combined with Members’ Shared Data, and shared with and/or provided to Partners. Member participation in these surveys is not required, and refusal to do so will not impact a Member’s experience on the Site or with the Platform.
How and Why Restricted Data are Used
Restricted Data is not automatically shared with, sold to, or displayed for other Members or Partners. Specific instances where Restricted Data may be used include, but are not limited to, the following:
• If we have a member’s permission, their email address will be used to send them a variety of notifications, including study invitations, newsletters and private message notifications. A member may change this setting by clicking the unsubscribe link at the bottom of any email they receive;
• If a Member explicitly opts in to have their Restricted Data shared with a Partner, Brain Power will share the information as instructed by the Member (e.g. co-registration with a non-profit);
• If a Member agrees to participate in a media interview (as arranged by Brain Power), Brain Power will share the contact information the Member provides (i.e. name, email, telephone) with the reporter for the purpose of conducting an interview.
Other Security issues
Brain Power cannot guarantee the identity of any other Members with whom a Member may interact in the course of using the Platform or who may have access to a Member’s Shared Data. Additionally, we cannot guarantee the authenticity of any data that Members may provide about themselves.
Brain Power will cooperate with police to the extent required by law. However, if the data we collect indicate or suggest the commission of a crime, we cannot guarantee that the crime will be investigated by us or by the police.
Members should know that Brain Power takes commercially reasonable technical precautions to help keep Member data secure.
Risks and benefits
While our goal is to help better understand how people’s brains and minds develop and flourish, there are no certain benefits to using this Site or Platform. However, keeping track of personal well-being, treatments, and symptoms has been shown to be helpful in improving overall health.
There are also no known significant risks to using the Platform, but there is a possibility that users may feel uncomfortable sharing information through our Platform. In using the Platform, Members are free to skip any non-required questions or data fields that make them feel uncomfortable. Members are also free to stop using this service at any time. If a Member chooses to deactivate his/her account, Brain Power will not display or sell the data in that account as of the date of deactivation. However, the Member’s data will remain in the system for auditing purposes, and research conducted prior to the deactivation of a Member’s account will still include the Member’s data.
You Have No Obligation to Be or Remain Being a Member
Brain Power, LLC
Attn: Privacy Issues
One Broadway, 14th Floor
Cambridge, MA 02142
Thank you, and as always, Stay Empowered!