Create a PicnicHealth account, consent, and share the names of your doctors in 5 minutes.
PicnicHealth compiles your medical records for you, and anonymizes them for research.
Researchers use anonymized info from hundreds of hemophilia patients to make discoveries.
PicnicHealth puts security first. We protect your information with end-to-end encryption and use HIPAA compliant practices.
Medical records show what happens in the real world. They reveal safety and efficacy trends missing from most research.
We always get consent before sharing any information with research partners. Everything is anonymized before sharing.
We don’t share personal information. Researchers never see full medical records, only specific data needed for research.
PicnicHealth uses an IRB (Institutional Review Board) as an external check to make sure our practices are always ethical.
I helped start PicnicHealth because I believe there’s nothing more rewarding than shaping the future of research. I firmly believe technology can improve outcomes for bleeding disorder patients.
Progress in safely treating rare diseases can be frustratingly slow. PicnicHealth set out to change that. We are experts in giving patients the full picture of their medical care by collecting their fragmented medical records in one secure place. We then partner with researchers who can leverage the anonymized medical information from those records to find safer, better treatments. Because we’re all stronger together.
Medical records document the journeys of patients over time. In Hemophilia, medical records allow researchers to see trends in the care, safety, and efficacy of treatments in the real world, not just in controlled lab studies. Below you can see some of the partners from our past research. We'll share more as we get Hemophilia-focused researchers involved. The more patients sign up, the more we can attract great scientists!
It takes about 2-3 months to retrieve and process 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.
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.
You can join this study if you have been diagnosed with hemophilia, Von Willebrand disease, or another factor deficiency, live in the U.S., and have received medical care in the U.S. in the past 7 years.
You can join if you have been diagnosed with hemophilia, Von Willebrand disease, or another factor deficiency, live in the U.S., and have received medical care in the U.S. in the past 7 years.
By signing up for this study, you're agreeing to share your medical records with researchers and organizations working in the hemophilia or bleeding disorder space. 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.
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 [email protected]. Once records have been collected for the study, you can’t remove them from the study.
Yes. You can view this sample timeline.
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.
Our goal is to advance the understanding of bleeding disorders and to support research to improve quality of care. Information from medical records is particularly useful for rare diseases, such as hemophilia, because it gives us insight into disease progression and treatment options, all without needing to enroll patients in large, invasive clinical trials.
Yes! We believe it’s important for you to see the results of research produced using your data and we’ll make every effort to share published results back with you.
Medical records record what’s actually happening when doctors see patients, so they can be really helpful for understanding how care is delivered in the real world. They also contain a lot of information about how you experience hemophilia or your bleeding disorder -- your symptoms, your health status, and your treatments. Putting all of this information together for a diverse group of patients will allow the scientific community to see patterns that no one doctor can see on his or her own.
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.
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.
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.
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.
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 patients with hemophilia or other bleeding disorders are being treated and how to advance care for patients everywhere.
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.
The study is directly sponsored by PicnicHealth. We want to maximize the study’s impact on improving care outcomes by sharing the anonymized dataset with qualified researchers. Third party organizations may apply for access to the de-identified data. These might be government, academic, or commercial innovators. As with all PicnicHealth studies, the data set will be freely accessible to all academic researchers.
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.
You’ll receive PicnicHealth’s service free of charge for as long as you’re a participant in the study.
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, andPicnicHealth will retrieve your new records for you.
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.
Yes. Your participation in this study is completely voluntary and you can withdraw at any time. If you choose to stop participating, your medical records will remain available for you through yourPicnicHealth 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 shared with third party partners can’t be deleted.
You will be compensated $500 through a Visa e-gift card for your participation in this research. You will receive the gift card 5-7 business days once we verify your diagnosis. Because we have to get a hold of your medical records before we can issue payment, it may take a few months before you get your payment. The timeframe depends on how responsive your doctor’s office is when requesting records.
