PicnicHealth is conducting a first-of-its-kind research study powered by volunteers with IBD, including Crohn's disease and ulcerative colitis, to help improve the management of IBD and develop new and better therapies. By combining the medical journey of thousands of people living with IBD into a single anonymized research database, we can help power the next wave of new treatments.
But we can’t do it without you!
We collect all your records so you can access them anywhere and share them with your family or doctors.
By combining your medical journey with thousands of other IBD volunteers, you can help improve the journey for others.
Your private data stays that way. We are HIPAA compliant and use 256-bit military grade encryption.
Researchers only get de-identified data points, not any of your personal information.
By participating in this study, we’ll build your complete medical history at no charge (a $700 value for the first year).
Using your real-world information allows researchers to improve care faster without any travel or procedures needed.
We'll collect and organize all your medical records into your PicnicHealth timeline.
We'll update you on IBD discoveries you helped power!
We follow the highest standards set by law.
We use the highest cryptographic standards available.
We’ll never share your personal information without your explicit permission.
If in doubt, ask. We’re here to make sure you fully understand our practices: [email protected].
An Institutional Review Board (IRB) reviews our studies to ensure participants are well informed and are opting in willingly.
Anonymized medical data sets are free for qualified academic, non-commercial use.
You make the choice to proactively opt in. We’ll never share your information.
Before researchers receive your data, we remove all personally identifiable information.
If you decide you'd rather not participate in research anymore, no problem.
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.
PicnicHealth works directly with people 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 inflammatory bowel disease, including either Crohn’s disease or ulcerative colitis, 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 inflammatory bowel disease 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 inflammatory bowel disease, including Crohn’s disease and ulcerative colitis, and to support research to improve quality of care.Information from medical records is particularly useful for diseases, such as inflammatory bowel disease, because it gives us insight into what living with the disease is really like and how treatment options work in the real world, all without needing to enroll people in large, invasive clinical trials.
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.
Yes! We believe it’s important for you to see the results of research produced using your data and we make every effort to share published results back with you.
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.
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. At PicnicHealth, we specialize in building anonymized medical record data sets for researchers. Our goal is to get this data to researchers who can analyze the data to answer the research questions about how inflammatory bowel disease looks and is treated out in the real world (not in a highly controlled clinical trial setting) with the hope this can ultimately lead to better care. Third party organizations can apply for access to the anonymized data. These might be government, academic, or commercial innovators. As with all PicnicHealth studies, access to the data will be free to all academic researchers.
Medical records tell a story of what’s actually happening when doctors see patients and 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 inflammatory bowel disease - your symptoms, your health status, and your treatments. Putting all of this information together for a diverse group of people will allow the scientific community to see patterns that no one doctor can see on his or her own.
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.
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 people with inflammatory bowel disease are being treated and how to advance care for people living with inflammatory bowel disease everywhere.
Yes! You will be able to view your imaging files right in your PicnicHealth timeline.
PicnicHealth has put together a Crohn's disease guide and an ulcerative colitis guide with all the basics you need to know about these two common forms of inflammatory bowel disease, including symptoms, how it's diagnosed, how to manage your care, what kind of treatment is available, and research into new treatments.
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, and PicnicHealth 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 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 shared with third party partners can’t be deleted.
