People-Powered Medicine

Frequently Asked Questions

Contents

Questions about NEER (Network of Enigmatic Exceptional Responders)

Q I think I may be an exceptional responder, but I’m not sure. Should I register for the NEER study?

A Not everyone who registers for NEER will end up being considered an exceptional responder, even if they have had a good health outcome. For particular cancers and treatments, good outcomes are fortunately more common. Nonetheless, we encourage you to register and provide a detailed description of your experience so that we can determine if you are a good fit for this study.

Q I am not an exceptional responder but I want to contribute to scientific and medical progress. Should I join NEER?

A There are several great studies that enable patients to contribute to scientific progress, even if they are not exceptional responders to cancer treatments. Listed below is just a small sampling of well-regarded studies that you might want to consider.

Questions about RANT (Rheumatoid Arthritis Non-responders to Treatments)

Q I have rheumatoid arthritis. Should I register for the RANT study?

A Not everyone who registers for RANT will end up being accepted into the study. Nonetheless, we encourage you to register and provide a detailed description of your experience so that we can determine if you are a good fit for RANT.

General Questions

Q Where will my data be stored?

A Besides online retail shopping, Amazon.com also offers a huge variety of technical services for business. We here at the Harvard Medical School Department of Biomedical Informatics (DBMI) have worked extensively with Amazon on a number of projects and have contracts signed with them that allow us to put sensitive information on their extremely secure servers. There is a shared responsibility between us and Amazon to protect your information that is stored on their servers, one we take very seriously.

More information about data storage can be found on the consent forms that participants sign. Here are blank copies of these consent forms for your review:

Q I just registered. Why was the email confirmation sent from Amazon?

A One of the technical business services that Amazon.com offers is an e-mail service. We use this as one way to communicate with participants in our People-Powered Medicine (PPM) project.

Q Who will be looking at my data?

A A limited group of staff and researchers will have access to your data. An Institutional Review Board (IRB), whose sole purpose is to protect and safeguard participants, was required to review and approve each individual with access to data.

Q How is my data protected?

A Your privacy and security is our primary concern. The IRB's purpose is to review and monitor all procedures in a study to ensure safety and security remain the top priority. The IRB requires the appropriate steps are followed and the necessary safeguards are put in place to protect participant data at all costs. In addition, all data is stored using Amazon Web Services (AWS), an industry leader in data storage and security. AWS currently stores sensitive data for thousands of other healthcare, financial and government agencies and ensures your data will not be viewed or accessed by anyone but you and the PPM team.

Q How long is my data stored?

A Data will be stored in the secure HIPAA-compliant AWS Cloud maintained by Harvard University; no transmission beyond original receipt of data and placement in the cloud will occur. Because these data are obtained from fully-consented participants and may be extremely valuable over the duration of this and related studies, data will be stored indefinitely. Furthermore, because these data will be available to the participants, it would be in their best interest to have ongoing access to their consolidated record. Data will remain available to participants for download throughout the lifespan of the study.

Q How will my data be used?

A Through this study, we hope to better understand the effort needed to (i) recruit participants; (ii) obtain and organize data from different sources (like questionnaires and medical records); and (iii) make that data available to the participant. We hope that the knowledge we gain during this pilot study will help us to develop long-term studies in the future, through which data collected could be used by researchers to study particular medical conditions.

Also, your data will be organized into a single electronic package, making it available to you. This will make it easier to use your data however you wish.

Q Will I be able to see how my data is used?

A At any time, you can log in to your People-Powered Medicine dashboard and download a copy of all data we are storing for you. The data will be presented in JSON format and may be difficult to read, but it will represent an exact copy of all your data that we are storing.

Q Will any of my data be changed?

A No! Once granted access, we will only read a copy of your data and store it for research. Your health records and other data that we collect will not be changed or altered in any way.

Q Can I unenroll? If so, what happens to my data?

A Yes, please contact us for further help. You can leave the research at any time, and it will not be held against you. If you choose to leave the study, we will ask if you want to:

  • Allow the information that we’ve already collected about you to continue to be used in the research, or
  • Destroy all of the information and samples provided by you since you began the study so that it cannot be used in any research after that date.

Q Why does PPM need me to use my email/social account to sign in? Is PPM viewing the data in that account?

A For ease of use PPM offers the option of using an existing account, like a Facebook or Gmail account, to log in. Internet technology companies like Google and Facebook work to make it harder for someone to steal your account information, and the PPM project benefits from this if you use those accounts to log in.

Q What if I need to change any of my accounts?

A If you need to create a new Facebook or Gmail account, please contact us to assist you in connecting your People-Powered Medicine profile to your new account.

Q What should I do if I lose access to the account I signed up with?

A If you signed up for PPM with an email or social media account (e.g., Facebook) and then lost access to that account, please contact us to assist you in connecting to PPM with a new account or email.

Q Can I close any of the accounts I've shared with PPM if I need to?

A PPM securely stores a copy of your data, so you can close accounts or delete your data without affecting the study. If you do close an account and sign up for a new one, please contact us to let us know so we can help connect the new one to your PPM account.

Q Is PPM just viewing the data in my accounts or is it storing that data somewhere else?

A We will create a copy of your data and securely store it using Amazon Web Services (AWS). AWS is trusted by thousands of other healthcare, financial and government organizations for the storage of sensitive data. AWS guarantees all protocols and safeguards have been implemented to ensure the safety and security of your data. We share a responsibility within AWS to protect your data and on our end we utilize modern and secure technologies for storing and transferring your data. Access to the data is restricted to individuals approved by the Institutional Review Board and the PPM team.

Q Who can I contact if I'm having issues with the web site?

A If you need assistance with the site or have any questions about the People-Powered Medicine project, feel free to email or call us.

Q What if I move or need to update my registration information?

A Please email us with any updates or changes to the data you provided during the registration process and we will update your profile as needed.

Q Is my contact info or data shared with any third-parties?

A The only use of your contact info will be for the following purposes:

  • To mail study participation materials to your home, such as a collection kit for DNA sequencing
  • To identify you when contacting a health provider on your behalf in order to obtain copies of your medical records, provided you have granted us permission to do so.

Some of your genetic data will be seen by the third-party company who sequences your DNA. However, your name will not be connected with this data. When you send your sample to the company, it will be labeled with an ID number that only the PPM team can trace to your name, and shipped in a prepaid box with Harvard Medical School as the return address.