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Sign up in minutes to hold your spot in the study
Create a PicnicHealth account, sign the consents, and share the names of your doctors. It only takes about 5 minutes and then you’re in!
We’ll let you know when we start collecting your medical records
Once the study begins, we do the work to collect and compile your medical records. You’ll be able to see them in a friendly timeline view and we’ll also anonymize them for research.
Advance medicine and accelerate research
Researchers use anonymized info from hundreds of lupus patients like you to make discoveries. We’ll update you on Lupus discoveries that you helped power!
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) to protect and act in the best interest of our volunteers.
Medical records show what happens in the real world. They reveal safety and efficacy trends missing from most research.
PicnicHealth puts security first. We protect your information with end-to-end encryption and use HIPAA-compliant practices.
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PicnicHealth uses an IRB (Institutional Review Board) as an external check to make sure our practices are always ethical.
“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.
Participating in this study should only take about 5-10 minutes of your time! All you need to do is complete the sign up process and tell us who your doctors are.
PicnicHealth works directly with patients like you to collect medical records and anonymize them for research.
By signing up for this study, you're agreeing to share your medical records with researchers and organizations working in the lupus 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.
By joining this study, you will get access to any medical records that we collect on your behalf. Any records we collect will be transformed into an easy-to-use timeline that you can access from anywhere.
You can join this study if you have been diagnosed with lupus and live in the U.S.
Our goal is to advance the understanding of lupus and to support research to improve quality of care. Information from medical records is particularly useful for rare diseases, such as lupus, 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. You can view this sample 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.
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.
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.
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.
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 Lupus --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.
No problem. PicnicHealth can work with data in any format, whether your doctor takes notes with a pen or on an iPad.
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 Lupus are being treated and how to advance care for patients everywhere.
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.
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 Lupus 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.
PicnicHealth has put together a lupus guide with all the basics you need to know about lupus, 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.
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.
