How do I donate my data?
Donating your data is quick, easy, and safe. You will
1). Pick which study you want to join by visiting our landing page
2). Read and sign an informed consent document
Informed consent is a legal document designed to protect participants and ensures clear and transparent communication between you and the research team.
3) Complete a short survey
It asks questions about you like: age, gender, race-ethnicity, health & well-being.
4). Create an account on the Center for Digital Health portal
Health
What does your social and digital media activity say about your mental health and well-being? We are learning that what we post online, may it be a...
Health
What does your social and digital media activity say about your mental health and well-being? We are learning that what we post online, may it be a Facebook wall post or a Google search, offers insight into our exposures, mood, thoughts, and behaviors. Our research studies found that this new type of data can provide a new approach for early identification of sub-clinical or undiagnosed conditions, especially mood disorders such as, depression.
Our previous work found that Facebook wall posts shared by consenting research participants can predict a future occurrence of depression in electronic health records (EHR). We found language predictive of depression to include references to typical symptoms, including sadness, loneliness, hostility, rumination, and increased self-reference.
What's Next?
We are continuing to explore how Facebook wall posts and other types of digital data, like Google searches and YouTube searches may offers insight into mental health and well-being.
Press & Publications
Health
Digital data available from social media, online search histories, and sensor devices in smartphones offer a new window into individual and populat...
Health
Digital data available from social media, online search histories, and sensor devices in smartphones offer a new window into individual and population cardiovascular health.
We are bolstering personalized medicine, which recognizes that many diseases have environmental, social, and behavioral determinants, to explore how the interactions of these social determinants affect health and healthcare utilization
What's Next?
If you are interested in helping us, please view our active research studies
Press & Publications
Care
What concerns do patients have when they search for medical or health questions on Google? ‘Tingling in hand’, ‘how to relieve na...
Care
What concerns do patients have when they search for medical or health questions on Google? ‘Tingling in hand’, ‘how to relieve nausea’, ‘sleeping tips’ are just a few. We know patients communicate concerns in different ways across different digital platforms. We recruited cancer patients and their loved ones to share their Google search histories to better support them throughout their cancer journey and recovery. From their Google search histories, we’ve found unique needs and concerns not expressed in the clinic.
What’s Next?
For the parents of pediatric oncology patients, we’re working to understand the content of parents’ searches over time to identify knowledge gaps that could inform more comprehensive approaches to family education and support.
For radiation oncology patients, we’re piloting innovative ways to apply these questions and concerns to a chatbot program that helps patients find the right answers when they need it most.
Press & Publications
Information
We are interested in learning more about people’s values and attitudes towards emerging diseases and conditions through social media and onli...
Information
We are interested in learning more about people’s values and attitudes towards emerging diseases and conditions through social media and online platforms like Instagram and Flickr. Our team found that Instagram can be used to characterize public sentiment and highlight areas of focus for public health, such as correcting misleading or incomplete information or expanding messages to reach diverse audiences.
What's Next?
With the COVID-19 pandemic, we are turning to digital platforms, like Twitter, Reddit, and TikTok more than ever to better understand public priorities and concerns.
Press & Publications
How is my data protected?
When you share your digital data, we keep it safe, protected and private. Our platform is governed by strict up-to-date security standards to ensure that your data is safe and secure. Please visit Protecting Your Data and Privacy for more details.
Frequently Asked Questions
How is the data stored?
All data is encrypted, linked to survey data through a study ID number, and stored behind Penn Medicine’s firewall. We de-identify the data and analyze data in aggregate, meaning that we will combine your data with the data of other people.
Will you share my data?
We never share, rent, or sell social media or digital data to third party vendors. Depending on which study you join, we may share your anonymized, de-identified data with other academic researchers looking to advance health care and health equity.
How is my data safe?
All data is stored on Penn Medicine servers with multiple layers of security. We will not disclose or link your data to your identity when we report any research findings. No one will be able to discriminate against you with your digital data; not insurance companies, not health care institutions.
Can I change my mind about sharing my data?
Yes, you may remove your data by visiting this page. First you will sign into your account and then select the 'Opt Out' button under Actions in the Manage Donated Data.
Contact us if you have any questions or concerns about how your digital data are being used or stored.
We'd be happy to answer any questions you might have.
Penn Medicine Center for Digital Health Protecting Your Data and Privacy
Last Updated: April, 22, 2021
In this document, “you” refers to you. You are participating in a research project supported by the Penn Medicine Center for Digital Health Donate your Data for Health platform, which maintains the following privacy policies and data security measures.
What kind of information is being collected?
Depending on which study you join, information about your background, health, behaviors and other factors will be collected, as needed. Each study you choose to join will have a specific description of the types of data the study will collect and how your data will be used, including your location data (if needed for that study). You can choose whether to agree or decline to participate in each study based on the details of the informed consent document.
How is my data stored?
All data is stored on Penn Medicine servers with multiple layers of security. All data is encrypted, linked to survey data through a study ID number, and stored behind Penn Medicine’s firewall. We de-identify the data and analyze data in aggregate, meaning that we will combine your data with the data of other people. We will not disclose or link your data to your identity when we report any research findings. No one will be able to discriminate against you with your digital data; not insurance companies, not health care institutions.
Will my data be de-identified?
Yes, your data will be de-identified. De-identified means that all identifiers have been removed.
How long will data be stored, and how will it be used in the future?
Your data will be stored, maintained, and used for research purposes up to five years after enrolling. The information could be stored and shared for future research in a de-identified fashion. It would not be possible for future researchers to identify you as we would not share any identifiable information about you with future researchers. This can be done without again seeking your consent in the future, as permitted by law. The future use of your information only applies to the information collected on this study.
Are there certain use limitations due to privacy concerns?
Yes, we will do our best to make sure that the personal information obtained during the course of this research study will be kept private. However, we cannot guarantee total privacy. In accordance with the law, we may be required to take actions to prevent serious harm to yourself or others. Your personal information may be given out if required by law.
How can I remove my data?
When you created an account on Donate your Data, you provided an email and a password. You can use this to sign into our system and to see what studies you are enrolled in and remove your data. You may remove your data by visiting this page. First you will sign into your account and then select the 'Opt Out' button under Actions in the Manage Donated Data.
If you are worried that someone else may be using your login information, please let us know immediately, or change your password yourself through the website login page or your app settings page.
Will the information be shared with any parties?
We never share, rent, or sell social media or digital data to third party vendors. Depending on which study you join, we may share your anonymized, de-identified data with other academic researchers looking to advance health care and health equity. This information will be only used in research analyses, and results of these analyses will be presented in scientific conferences and published. These presentations and publications will not show information that identifies you or any other individual in the study without your explicit permission.
Who will have access to the information?
The following individuals may use or share your information for this research study:
- The Principal Investigator and the Investigator’s study team
- Penn researchers with approval from the study team and approval from the Institutional Review Board (IRB)
- Authorized members of the workforce of the UPHS and the School of Medicine and the University of Pennsylvania support offices who may need to access your information in the performance of their duties (for example for research oversight and monitoring)
What steps/policies are in place to secure information and protect participant privacy/confidentiality?
All data is stored behind Penn Medicine’s firewall. Only credentialed data scientists have access to the data. A limited number of exports including identifiers exist to assist research staff with recruitment tracking and study management efforts. All patient data is encrypted and linked to survey data through a study ID number, with linkage and de-encryption keys activated only by a user password for which a member of the research team has been given permission to access these sensitive data (Principal Investigator (PI) Dr. Merchant and project staff who are under the direct supervision of the PI).
How to Create a Login
Video Instructions: https://vimeo.com/407293664
Written instructions:
- Step 1: You will be directed to Sign In
- Step 2: Please “Sign up” to create an username and password
- Step 3: Please enter your email address, first name, last name, and a password, then click the “Register” button
- Step 4: You will see a page to “Verify Your Account.” Please check the email account you listed to retrieve the verification code. You will receive an email from digitalhealth@uphs.upenn.edu with the subject line of “Center for Digital Health: Account Verification”
- Step 5: Please copy and paste the verification code found in the body of the email. Once you receive the code, please copy and paste it in the box below and then click the “Verify Account” button
- If you do not receive this email within 5 minutes, please click the “re-send code” button on the bottom left.
If you have any questions, please email digitalhealth@uphs.upenn.edu
What You Donate
The types of digital and social media data donated depends on each research study. If you decide to donate your data for health, you will receive an informed consent document that outlines what is being collected. If you have any questions or concerns, please email: digitalhealth@uphs.upenn.edu
How you can Uninstall or Remove your Digital Data
You have the right to drop out of the research study at any time during your participation. There is no penalty or loss of benefits to which you are otherwise entitled if you decide to do so. Withdrawal will not interfere with your future care.
You may uninstall the Penn Image Station application from your Facebook profile and at any time; however, any information gathered before you uninstall the application may still be used for analysis.
To un-install the Penn Image Station application at any time, go to “Settings”, and then click “Apps and Websites” on the left side of the page, click on the Penn Image Station icon, and select “remove”. To un-install the Penn Social Mediome application from your Instagram profile at any time, log on to your Instagram account from a computer, select “Profile”, select “Settings”, select “Authorized Applications” on the far left of the screen, find “Penn Social Mediome” and select “yes” next to “Revoke Access”.
To remove files you uploaded, please contact digitalhealth@uphs.upenn.edu to permanently delete your file.
If you no longer wish to share your social media or health record information with the research study team, please contact digitalhealth@uphs.upenn.edu to ensure you are removed from the study.