If in doubt, ask. We’re here to make sure you fully understand our practices.
Email: Neat-HER@picnichealth.com
Puma and PicnicHealth are separate companies that are partnering for this study. Puma 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.
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. PicnicHealth will then transform your records into a timeline that makes it easy for you to read and understand your records. 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.
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. For new visits, you can get your records faster by clicking the "Request Records" button at the top of your account.
By signing up for this study, you're agreeing to share your medical records with Puma researchers, but they will only receive records without any personally identifying information. 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 account.
You can join the study if you are a U.S. resident receiving NERLYNX® (neratinib) on or after February 1, 2019, for the treatment of HER2+ early or adjuvant breast cancer. You must be 18 years or older. You cannot join if you are currently participating in a clinical trial.
Medical records track what’s actually happening when doctors see patients, so they can be very helpful for understanding how care is delivered. They also contain information about your symptoms, your health status, and your treatments. Putting all of this information together for a group of people will allow researchers to see patterns that no one doctor can see on his or her own.
Yes. You can view this sample account.
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.
Puma will never receive your name or any of your contact information.
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 that come from your routine healthcare. The goal is to better understand the health of people across the U.S. who are currently taking NERLYNX® (neratinib) at the time that they enroll.
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 records, it's possible that some of your 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 account will be updated regularly with information from your new doctor visits.
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 Neat-HER@picnichealth.com. Once records have been collected for the study, you can’t remove them from the study.
Yes. We are planning to publish our findings and we’ll share everything we publish 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 is okay to share your medical records with PicnicHealth.
In the first month, your 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 account.
PicnicHealth takes privacy very seriously. Your personal data never gets shared without your 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.
No problem. PicnicHealth can work with data in any format, whether your doctor takes notes with a pen or 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 account 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 medical records 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 account.
You’ll receive PicnicHealth’s service free of charge for the study duration.
PicnicHealth will update your medical records regularly. To keep your records most up-to-date, you can always tell PicnicHealth when you have an appointment. Just clicking the “Request Records” button at the top of your account, and PicnicHealth will retrieve the records for you.
After the study ends, you can still use your PicnicHealth account to view medical records that were added to your account during the study. 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 account, click on "Doctors" to add new doctors or facilities. PicnicHealth will then collect your records from your new doctors.
After the study ends, we will stop collecting your new medical records, but the records we already collected will still be available to you as long as you would like though the PicnicHealth system. You can download copies at any time. You can always tell PicnicHealth to delete your medical records, although the information that has already been collected for the study can’t be deleted.