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.
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.
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.
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.
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.
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.
Yes! We definitely plan to publish our findings. We’ll share everything we publish back with you.
Yes. You can view this sample timeline.
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.
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.
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.
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 firstname.lastname@example.org. Once records have been collected for the study, you can’t remove them from the study.
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.
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.
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.
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.
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.
No problem. PicnicHealth can work with data in any format, whether your doctor takes notes with a pen or on an iPad.
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.
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.
Yes! You will be able to view your imaging files right in your PicnicHealth timeline.
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.
You’ll receive PicnicHealth’s service free of charge for 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.
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.
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.