Access your records from anywhere. Share your full medical history—including pain management plan—instantly with your doctors.
By participating in PicnicHealth studies, we’ll collect your complete medical history at no charge (normally $700).
Only you decide how your information is used. We use 256-bit military grade encryption and are HIPAA compliant.
You’re not alone. By joining this study with hundreds of other warriors, you increase your impact.
Using your real-world information allows researchers to improve care faster, without extra visits from you.
Researchers get the information they need to do their work—nothing more.
“Dealing with sickle cell has been a lifelong rollercoaster. The thought of my voice being heard in the world of medicine is really what motivated me to join this study. Not only to advocate for myself but others and knowing the advocacy put forth will have both a powerful and positive impact.”
Making progress on finding new treatments for rare medical conditions can be challenging and frustrating. Research requires many patients to identify patterns and results. Patient medical histories are often incomplete. Clinical trials are impactful but take time.
PicnicHealth set out to change that. We partner with researchers to gather and anonymize medical information on patients with rare diseases. By leveraging historical records, known as “real-world evidence,” we can contribute to finding new treatments. Because we’re all stronger together.
We also believe patients should own their information. The current system is fragmented and broken. Which is why we provide all participants with complete, digital, private medical histories so that your doctors always have the full picture of your medical history.
Sign up, review the consents, and share the names of your doctors in 5 minutes.
PicnicHealth compiles and anonymizes your medical records.
Researchers use this real-world info from hundreds of patients to make discoveries.
As a patient-centered company, PicnicHealth values your privacy and security. We protect your information by using end-to-end encryption and abiding by HIPAA compliant practices.
PicnicHealth will ask for your consent before sharing any information with any partners. Any info will be anonymized before sharing.
We do not send partners redacted medical records. Instead we share datasets that are structured for research.
PicnicHealth uses an IRB (Institutional Review Board) to protect and act in the best interest of our volunteers.
Medical records document the medical journeys of patients over time. When combined with others, we can begin to understand what diagnosis, care, and progression look like for people living with sickle cell like never before. While we are still choosing partners for sickle cell research, these are a few researchers we’ve worked with in the past on other diseases and sickle cell community partners. We believe working with multiple researchers gives us all the best chance of making medical advances.
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.
You can join this study if you have been diagnosed with sickle cell disease, live in the U.S., and have received medical care in the U.S. in 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 researchers and organizations working in the sickle cell 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 sickle cell disease and to support research to improve quality of care. Information from medical records is particularly useful for rare diseases, such as sickle cell 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 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 sickle cell disease --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 sickle cell disease 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. At PicnicHealth, we specialize in building de-identified medical record data sets for researchers. Our goal is to get this data into the hands of researchers who can analyze the data to answer research questions about how sickle cell disease looks and is treated out in the real world (not in a very controlled clinical trial setting) with the hope that this can ultimately lead to better care. Third party organizations can apply for access to the de-identified 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.
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 has put together a sickle cell disease guide with all the basics you need to know about sickle cell 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.