Frequently Asked Questions


 

Using the System

How do I get started?

Simply go to “Signup” at the top of any page and create an account. You will have the choice of doing this from an existing social media account (Facebook, Twitter, Google Plus) or using an email address and creating a password. In either case, you will need to agree to the Terms of Agreement and Privacy Policies before your account is created. We encourage you to read these documents ahead of time.

When you first create an account, your preferences are set to share all of your data for any purpose. If you are not comfortable with this, we encourage you to set your sharing preferences on the “SHARE” page during your first login.

I had a problem or got an error, what do I do?

The SHARE system is still new and while we strive to provide users with an error-free experience, sometimes unexpected errors may arise. If you have a problem or encounter an error, please use the grey “Feedback” box in the bottom right-hand corner to report it. You can even add a screen-shot of the problem you are having. We promise to work quickly to resolve any problems.

Can I create an account for my child or another person I care for?

Not yet. This is a feature that we hope to add in 2017. (To help make it happen faster, donate HERE). Right now, individuals can only create accounts for themselves. We understand that SHARE may have lots of useful pediatric applications and we hope to add functionality to enable account creation for a dependent soon.

I reside outside of the United States, may I create an account?

Not at this time. Due to differences in legal and privacy regulations in various countries, SHARE is currently only available in the United States.

Adding, removing, and viewing data

How do I combine my health and wellness data in the SHARE system?

Once you have a SHARE user account, you will click “Add Data” in the top menu. This allows you to either search for your medical providers (hospitals, doctors, labs) or common mobile health apps that you may use. When you choose a source, you will need to provide your username and password. This is the username and password either to the appropriate app or to the hospital/doctor/lab’s patient portal. If you don’t know or don’t have your username and password, please visit the patient portal (there’s usually a hyperlink) to request it.

I have a Continuity of Care Document (CCD). Can I include this in my SHARE account?

We are still building the user interface for CCD upload. Right now, you may click the “Feedback” tab in the lower right corner of the website when logged in, write a note for the support team to include your CCD in your account, and attach/upload the CCD file. Due to the volume of support requests, it may take several days before the data from your CCD is available in your account.

I connected one (or more) accounts. Why can’t I see the data yet?

Most data sources provide data to us as soon as they are connected. However, some can take up to 24-48 hours to begin sending us data. After that it is generally updated at least nightly. Please check back later. If the data still does not appear after 48 hours, please use the “Feedback” tab at the bottom right to report the problem.

How do I stop sharing data from a source?

This depends on whether you want to still have the data source in your account and not share the data with researchers or whether you want the data source completely disconnected from your account so that no new data is recieved from that source:

To keep the data in your account, but not share it for research:
Visit the “SHARE” page and in bottom section “I want to keep the following data private”, choose” Add to SHARE Settings” by “Source” and choose that source.
 
To disconnect the source from your account entirely:
Go to “Add Data” in the top and search for the source. Your connected source will show up highlighted in green. Choose the pencil in the top right corner, then the red “X”. Answer “Yes” when it asks “Disconnect from the Source?”

Who’s Human API? Why am I authorizing them?

Some of our connections are provided through a third party vendor called Human API. The Human API connections provide the “pipes” to transfer your data from your health sources (like your hospital patient portal) to us. They are a pass-through and do not retain your data.

My data has changed since I last logged in. Why has my data changed?

From time to time we run processes on the databases to clean up and re-organize the data. This is to ensure that all data in the system is properly organized and categorized. You may see slight changes in your data based on this re-organization. Any changes are for "data cleaning" purposes which allow us to adhere to certain data standards and this makes it easier for researchers to use your data.

Data Sharing

Why should I share my data?

We believe that ‘More Cases’ will lead to ‘More Cures’. This means that the more data that is analyzed by researchers, the better chance we have of finding new methods of prevention, detection, and treatment for a variety of diseases. We hope that everyone will help make a difference and share the data that they feel comfortable sharing to help find cures. Why do you want me to connect a lot of sources? You are the only person who has a complete view of your own health. Researchers often get a slice of information (just data from one hospital or one clinical trial or about one condition that you have) and don’t have the complete picture. We want to give them access to complete health data so they can find more cures more quickly.

Who will see my data?

SHARE For Cures is committed to honoring your sharing preferences. While we hope that most people will share all or the majority of their data for research, we only want you to share the data that you feel comfortable sharing. We understand privacy concerns and that some people may not want certain data shared about their health or may not want their data shared with certain types of organizations.

We will share only the data that you choose to share only with the types of organizations that you choose under “purpose”. This may be all research in one disease area, it may be only nonprofit organizations, or it may be anyone. We will respect YOUR preferences.

SHARE For Cures requires researchers who receive datasets to sign data use agreements to protect your privacy and prevent re-identification. However, please note that we no longer have access to or control over the dataset once it is shared with the researcher.

How do the SHARE settings work?

You can choose what data to share AND for what purpose(s). On the SHARE page, you may select data to share by either a date range or by the source account that the data comes from (for example, data from 2016 or data from just a certain hospital). Then, you may choose to share that data for any research or for more specific purposes (for example, just the Cancer Moonshot Immunotherapy Project or just Cancer Research in general).

There are also exclusions ("keep private"). Exclusions override sharing. So, if you want to share all data for any type of research except you want to block out a certain date range or certain source, you are able to do that. Just include that information under the "Keep more private by" section on the SHARE page. You may keep data private by source or time range, just like sharing. Anything under "Keep more private" will NOT be shared.

What data do you receive from my social media accounts?

You may use your Facebook or Twitter account to sign up for SHARE. Currently, as part of account signup, Facebook asks for authorization for SHARE For Cures to access your public profile and your email address and Twitter also asks for authorization to read your tweets and see who you follow. Right now, no social media posts (Facebook statuses or tweets) are being pulled into your SHARE account.

In the future, we may also ask for your posts and additional information in your account. This information can be used (when combined with information from many other users) to provide trends in disease detection and health. For example, it is common that disease outbreaks can be detected through Twitter using tweets from affected users. As always, you will have the option to not connect these accounts or to not share data from these sources.

Can I donate my data if I am a healthy individual?

Yes! All data helps further the cause. Healthy contributors can be used as "control" cases for comparison purposes. It is also likely that at some point in your life you will have some type of illness, and the data you allow us to collect now and through that point may be especially useful. As such, we encourage everyone to join and help contribute to a cure.

How does sharing data about my doctor's appointment or sharing the data from my Fitbit® help find cures?

The type of research called Epidemiology is the study of disease in populations. Different factors can play a role in determining who in the population develops diseases or responds to certain treatments. These factors could be related to genetics, your family history, or even how much exercise you are getting. The more data that is collected for research, the better the chance that scientists can identify different factors that could help others, or even you. All types of data can help! I just changed my sharing preferences to be more restrictive, what does that do? From this point on, we will no longer share any of the data that you asked to remain private. Because we share de-identified information, it is impossible for us to go back to previous datasets and remove your data that has been previously shared.

Privacy and Security

Is sharing my data safe?

SHARE for Cures is committed to putting the patient first in everything we do and we take patient privacy and data security very seriously. SHARE adheres to the highest security standards. We will provide users with clear information about what data is being used, by whom, and for what purposes. You, the owners of the data, will have the ultimate visibility and control over what data you share and with whom.

Please read the Privacy and Security page for more information and contact us if you have questions or concerns.

I don’t want to share my data with organizations that are for-profit, is that ok? OR I don’t want to share my social media data, is that ok?

We want to promote data sharing and speed up research while giving YOU the power to make these choices. You may share as little or as much data as you feel comfortable with. Any personal choices are ok.

Miscellaneous

How does SHARE For Cures make money?

SHARE For Cures is a 501(c)3 nonprofit organization so its primary source of revenue is from charitable donations. (You can donate to support us HERE). The initial funding to build the system was entirely through charitable contributions (see Our Supporters). As we move forward, some funding will result from paid research and grant opportunities with hospitals and/or companies (such as pharmaceutical companies). Be assured that we will only share data that you have agreed to share for your selected purposes and you may change your sharing preferences at any time.

What’s the Cancer Moonshot?

SHARE For Cures was pleased to be featured as one of the innovative projects that is part of the White House Cancer Moonshot initiative to accelerate cancer research. During his State of the Union address on January 12, 2016, President Barack Obama announced the establishment of a Cancer Moonshot to accelerate cancer research. The initiative—led by Vice President Joe Biden—aims to make more therapies available to more patients, while also improving our ability to prevent cancer and detect it at an early stage.

I want to close my account, what do I do? What happens to my data?

You may deactivate your account at any time by going to “Settings” and choosing “Deactivate My Account” under the “Account Preferences” heading. This will deactivate your account and your data will no longer be shared with anyone.

Please note: We cannot "unshare" data that was previously shared by you. To put it another way, if you previously authorized us to share your data with a 3rd party and the data was sent to the 3rd party before you changed your SHARE settings or deactivated your account, we cannot then take that data away from the 3rd party. Similarly, if your data was included in a de-identified dataset prior to account deactivation, we have no way of removing your specific data because the data has been stripped of any means to identify you.

How do I suggest a new feature that I would like to see in SHARE?

We have a long list of upgrades and new features that we want to add to SHARE. It’s important to us that our priorities reflect that of our users. Feel free to use the grey “Feedback” box to provide us suggestions for future features.