Your story matters
The FlywheelMS Study
Get your records,
give to science.
About the Study
PicnicHealth and Genentech are teaming up to create FlywheelMS, a first-of-its-kind research study that combines the medical journeys of thousands of people with multiple sclerosis (MS) from across the US into a single research database.
 
But we can’t do it without you!  We’ll do the work to help collect your medical records (yours to keep), remove all your personal information, and contribute your data to help paint the bigger picture.

We invite you to join this study if you have been diagnosed with multiple sclerosis (MS), are 18 years of age or older, live in the U.S., and have received medical care in the U.S. for the past 7 years.
Your medical
records matter
Your medical records matter
Every patient has a story and every story is different. There’s still a lot we don’t know about individual differences and commonalities in the MS journey. This study will bring those stories together for researchers by combining medical records from thousands of people with MS into one research-ready dataset. By analyzing that data, we hope to paint a clearer picture of how and why MS impacts different people in different ways.
All your records at your fingertips,
without lifting a finger

As a benefit of participating in the study, you’ll have a free  subscription to PicnicHealth for 5 years. This includes PicnicHealth gathering all of your existing medical records — which you’ll be contributing to the study — organizing those records into a neat health timeline, and updating your timeline throughout the year with records from new appointments.
All Your Records at Your Fingertips,
Your private data
stays private
Your private data stays private
Information that could reveal your identity will be stripped from your records before they are shared with the Genentech scientists working on this study. You can always access your full records through your PicnicHealth account, and you can choose to give access to family members and doctors. PicnicHealth will never share your personal information with anyone without your explicit permission.
We do the work
1
Get Informed
Review the study Informed Consent Form. You’ll sign this after creating your account. Reach out with any questions to flywheelMS@picnichealth.com
2
Create a PicnicHealth account
You’ll be asked to verify your email and provide some basic personal information, list your doctors, and consent for us to collect your records.
3
We'll handle the rest
We’ll go out and get your medical records, turn them into data, and remove information that could identify you for the study.
How it works
You can get more information, sign up for the study, and get us started collecting your records through an account with PicnicHealth.  As a thank you for participating in the study, you’ll get a free subscription to PicnicHealth for 5 years where you can:   
View records
View
View doctor’s notes, medications, labs, and imaging
Share Records
Share
Share your records with family and doctors
Update Records
Update
Let us know when you’ve seen the doctor for faster updates
See a Sample Account
Privacy and Security
At PicnicHealth, we’re patients too, so we know how important it is that your private data stays private. Here’s our promise:
HIPAA security rule compliant

HIPAA security rule compliant

We follow the highest standards set by law.
End-to-end encryption

End-to-end encryption

We use the highest cryptographic standards available.
Your data, under your control

Your data, under your control

We’ll never share your personal information without your explicit permission.
We're here for you

We're here for you

If in doubt, ask. We're here to make sure you fully understand our practices.
FAQs
Study Basics
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What does PicnicHealth do?

PicnicHealth works directly with patients like you to help collect and manage your medical records. That means going out and collecting all of your medical records from your different doctors and keeping them up-to-date over time. PicnicHealth will then transform your records into a timeline that makes it easier to find what you’re looking for. When you see your doctor again, PicnicHealth will update your timeline with new records. You can access your PicnicHealth timeline from anywhere and even share it with your doctors with a few clicks.

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How long will it take to get my medical records?

It takes about 3 to 4 weeks to retrieve most of your historical medical records. After that, it can take another couple of months for us to track down the oldest and trickiest records to access.  The timing depends on how quickly your doctors respond to PicnicHealth's requests for your records.

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Who will be able to see my medical records?

By signing up for this study, you're agreeing to share your medical records with Genentech researchers. They will only receive records stripped of any information that could be used to identify you personally. Outside of that, no one will be able to see your medical records unless you choose to share them by clicking "Send Records" at the top of your PicnicHealth timeline.

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Who can join this study?

You can join this study if you have been diagnosed with multiple sclerosis, are 18 years of age or older, live in the U.S., and have received medical care in the U.S. for the past 7 years.

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Will I see the study results?

Yes! We definitely plan to publish our findings. We’ll share everything we publish back with you.

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Can I see what my records will look like in my PicnicHealth account?

Yes. You can view this sample timeline.

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How far back will you collect historical records?

For this research study, we will collect records going back as far as possible. In most states, doctors are required to keep records for at least 7 years, but many will keep them for much longer. So how far back we can go really depends on the record keeping practices of your doctors. 

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Can Genentech contact me directly?

Genentech will never receive your name or any of your contact information. PicnicHealth may contact you about other Genentech MS studies, but information that identifies you personally is kept with PicnicHealth and not shared with Genentech. 

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How are PicnicHealth and Genentech connected?

Genentech and PicnicHealth are separate companies that are partnering for this study.  Genentech is a biotech company that does scientific research to develop new treatments for a range of medical conditions and PicnicHealth is a digital health company that helps patients collect and manage their medical records.

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What if I can’t remember the names of all my doctors?

You can just enter as many doctors as you remember. The hospital or clinic name is usually enough and the PicnicHealth team will follow up with you if there’s any confusion. If PicnicHealth finds doctors mentioned in your records who you did not include on your doctor list, you will get an email asking for your permission to request records from that new doctor.

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When I first see my PicnicHealth timeline, will it be complete?

When you first see your timeline, it's possible that some of your medical records are not yet available. That's because PicnicHealth is still working hard to collect them for you. You should be able to see your medical records within a month of signing up. After the first month, your timeline will be updated regularly with information from your new doctor visits.

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Can I delete my medical records from PicnicHealth?

You may choose to delete your medical records and data from the PicnicHealth service at any time and for any reason. Just email PicnicHealth at flywheelms@picnichealth.com.  Once records have been collected for the study, you can’t remove them from the study.

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Can medical records really help with research?

Medical records record what’s actually happening when doctors see patients, so they can be really helpful for understanding how MS care is delivered in the real world. They also contain a lot of information about how you experience MS -- your symptoms, your health status, and your treatments. Putting all of this information together for a diverse group of MS patients will allow researchers to see patterns that no one doctor can see on his or her own. 

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How will my doctor know it’s okay to share my records?

When you sign up, you’ll read and sign a form that authorizes PicnicHealth to request your medical records on your behalf. You can e-sign this form online -- no printing or mailing involved. Your doctor will then know that it's okay to share your medical records with PicnicHealth.

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What should I do if I notice there are medical records missing from my PicnicHealth timeline?

In the first months, some records might be missing because PicnicHealth is still collecting them for you. After the first month, if you suspect that records are still missing, you can let us know about those records by clicking "Request Records" at the top of your timeline.

privacy
Will my medical records be secure?

PicnicHealth takes privacy very seriously. Your personal data is never shared without your explicit permission. Your medical records are kept safe using the highest encryption standard available: 256-bit SSL. This is the same technology that banks use to keep account information safe.

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Is this a clinical trial?

This is not a clinical trial. A traditional clinical trial involves testing a specific treatment, like a drug or medical device. In this study, we are only looking at data from medical records produced during your normal visits to the doctor. The goal is to better understand how MS patients across the US are being treated and why MS looks different in different people.

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What if my doctor doesn’t have electronic records?

No problem. PicnicHealth can work with data in any format, whether your doctor takes notes with a pen or on an iPad.

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What kinds of medical records will you collect?

PicnicHealth will collect medical records from all the doctors, hospitals, and clinics that you tell us about. PicnicHealth does not collect dental or optometry records.

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How can I use my PicnicHealth timeline?

Your PicnicHealth timeline provides a single source of information for you and your doctors. It is a tool to help you coordinate care and understand your own health. You can share your timeline with any of your doctors with a few clicks. The doctor will receive a secure link and get access to your medical history.

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Will I get records from my scans and imaging?

Yes! You will be able to view your imaging files right in your PicnicHealth timeline.

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Will PicnicHealth cost me anything?

You’ll receive PicnicHealth’s service free of charge for 5 years.

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Will PicnicHealth update my medical records every time I see the doctor?

PicnicHealth will update your medical records regularly. To keep your records most up-to-date, you can always tell PicnicHealth when you have seen the doctor. Just click the “Request Records” button at the top of your timeline, and PicnicHealth will retrieve your new records for you.

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What happens after 5 years?

When your subscription ends after 5 years, you can still use your PicnicHealth account to view your medical records. No new records will be added unless you choose to purchase a subscription on your own. We will contact you if this study is extended or new research opportunities arise.

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What should I do if I see a new doctor?

At the top of your timeline, click on "Doctors" to add new doctors or medical facilities. PicnicHealth will then collect your records from your new doctors.

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What will happen to my medical records after 5 years?

After 5 years, your medical records will remain available for you through your PicnicHealth account. At that time we will stop collecting any new medical records. You can download copies of your records at any time. You can always tell PicnicHealth to delete your medical records, although the information that has already been collected for the FlywheelMS study can’t be deleted. 

Have questions?