-
Who is xCures?
xCures was started in 2018 to help Cancer Commons, a patient advocacy organization, retrieve and aggregate medical records from any US care site for their patients. The result was the creation of an AI-assisted platform that automatically gathers, extracts and structures data from medical records within 15 minutes. This offers patients and their physicians a comprehensive view of a patient’s health journey, including test results, scan images, treatments, and doctor visits. The xINFORM portal for patients and xDECIDE for providers help improve care and treatment decisions.
-
What is xINFORM?
xINFORM is a free service that provides cancer patients with fast access to the information generated by the doctors, hospitals, and diagnostic companies they visited throughout their cancer journey. The information is immediately made available in a well-structured and easy-to-understand way that can be crucial for making sound and timely treatment decisions.
-
How does xINFORM work?
After registering, xINFORM automatically retrieves your medical records from Health Information Exchange (HIE) networks, and from the institutions where you received care. The platform’s AI-tools process the information, structure it, and give you instant access to a powerful Care Summary.
Upon request from your doctor, and with the help of our AI tools, scientists will cross-reference your Care Summary against our vast library of potential therapies, including learnings from other cancer patients on the platform, to create a personalized Treatment Options Report.
This Treatment Options Report can include access to novel or off-label treatments that go beyond standard of care and guidelines-based management, and even beyond clinical trial matching. Each treatment option includes a scientific and medical rationale.
-
What is a Care Summary?
A Care Summary consists of two parts:
- All the files and documents of your medical records.
- An overview of all the aspects of your care journey that are most relevant to future treatment considerations: info about your disease, what you’ve done to combat it, and how that’s gone to date.
You can find an example of a Care Summary here.
-
Does xINFORM cost me money?
No. You participate with your (de-identified) data. Sharing your experiences with similar patients in the platform allows for collective learning from each other in real-time. Your information helps others, just as their information helps you. We will never charge you.
-
How much time/effort does xINFORM require of me?
The initial online form should take you less than 7 minutes. After that, you should have almost immediate access to your Care Summary. If the Health Information Exchange networks do not have all your records, automated data requests are sent to the institutions you visited, which means you have to log in on another day.
-
How do I enroll in xINFORM?
- Go to https://patient.xcures.com/signup
- Provide your basic information:
- Identifying information (e.g., name, email, date of birth, phone number, zip code)
- Condition information (e.g., type of cancer, date of diagnosis, care team information)
- Sign the online participation agreement to provide “eConsent” to our terms of service.
Your eConsent includes:- Authorization to request medical records on your behalf
- Permission to use your (de-identified) data
- Sharing your experiences with similar patients on the platform allows for collective learning from each other. When you agree to participate in our observational research protocol, you’re gaining access to information about the experiences of other patients and doctors, as well as agreeing to share information about your experiences for their benefit.
- Help us access your medical records. To generate your personalized Care Summary, we need to review and understand your medical history and records. To do so, we ask that you:
- Provide any easily-available information that facilitates our ability to gather your complete health records (e.g., your address, EMR credentials, sites of care)
- Upload any record files on hand (e.g., clinic notes or reports from pathology, imaging, molecular profiling, and/or genomic testing)
- The following video offers a walkthrough of xINFORM registration. Any questions you have about registration are likely to be addressed here:
-
Why do I need to provide the name of my physician?
xCures needs to know where and from whom you are receiving care in order to:
- Ensure that we have gathered up-to-date and comprehensive information about your care history upon which to base our services
- Provide access to our reports to your care team so that they can turn our insights into actionable steps in combating your disease.
If you do not know your physician’s exact contact information, we will find it.
-
Will you contact my doctor/care team?
If you identify your doctor’s or care team’s contact information during registration, we will reach out once you have completed registration in order to let them know that you are participating in our research protocol. We may also contact your physician or treating institution when needed to obtain medical records to provide our services to you and/or when we have done so and are prepared to share a Care Summary or Treatment Options Report for you each to review. To note, in order for you to receive a Treatment Options Report, xCures must have documented approval from your physician.
-
What does eConsent mean and how do I grant it?
eConsent means that by electronically signing our online participation agreement, you accept the terms of our service. This includes authorization to request medical records on your behalf. When you agree to participate, you’re gaining access to information about the experiences of other patients and doctors as well as agreeing to share information about your experiences for their benefit.
-
Why do I need to share my medical records?
To generate your personalized Care Summary and give you access to treatment options, we need to understand your medical history and records.
-
How do I share my medical records with you?
To share your medical records, you will need to do one of the following:
- The preferred method to share your records is to provide your home address via the xINFORM portal. This enables us to request your records via electronic health information networks. If your treating institutions participate in those networks, as the vast majority of care sites in the country do, we will be able to access the vast majority of your record set in minutes and with no further required action on your part
- Either as an alternative to the above or as an additional step that ensures we gain comprehensive and timely access to your records, you may:
- Provide your medical portal credentials (e.g., your MyChart or other provider site login information)
- Identify all sites at which you have received care (to which we will send written requests for record access that may take several weeks for the institution to fulfill)
- Upload record files you have on hand to the xINFORM portal directly
-
Are you HIPAA Compliant?
We meet or exceed the physical, technical, and administrative security requirements of HIPAA and we continue to improve our ability to safeguard data and measure our state of compliance. For details, please read our Privacy Policy: https://xcures.com/privacy-policy/.
-
How quickly will I receive my Care Summary?
Most patients will receive their Care Summary within a few minutes. If the institutions where you received care are not connected to a Health Information Exchange network, we will put in an urgent request to get your records for you. In that case, it could take a few days.
The Treatment Options Report needs to be requested by your doctor. Once we have received their request, the report is generally available within a few days.
-
What do I do with my Care Summary?
Your Care Summary is perfect to bring to your next appointment with your oncologist and is especially helpful when you’re meeting a new doctor who is unfamiliar with your case. The summary will ensure they don’t miss something that might be crucial for your next treatment. It also educates you and your caregivers about your history in a straightforward way. Remember, you are a member of your care team!
-
What should I do if my condition changes and I need help again?
Once you register for xINFORM, we are here to support you long-term. If your condition changes and you need our assistance, just reach out to us at help@xcures.com. We will work with you to obtain your most recent records as quickly as possible. Any additional information you can provide is also beneficial, such as when your next doctor’s appointment is or by when you need to make a decision regarding your treatment. We will then work diligently to generate an updated Care Summary and Treatment Options Report for you.
-
What does xCures do to protect security?
The security of your data is of paramount importance to xCures. It begins when you sign an Authorization for the Release of Medical Information in accordance with the HIPAA patient right of access, allowing xCures to request information from your treating institutions(compliant with 45 CFR 164.524). Data is sent securely from the treating institutions to xCures, where, per XCELSIOR Study Informed Consent you have also completed, it is able to be stored in an Electronic Data Capture (EDC) system, compliant with 21 CFR Part 11. EDCs that are Part 11 compliant meet the FDA’s criteria for security and accuracy for tasks, such as clinical trials and regulatory submissions.
Access to personally-identifiable health information (PHI) is restricted to you, the health care providers you have identified or who are providing treatment to you, and only those xCures employees who need access for their jobs (all such employees take training in handling PHI). Some xCures employees, such as software developers, who need access to the format of the data to but not the content, can access a version of data in which all PHI has been removed and replaced with tokens, so as to protect your privacy.
All data at rest within the system (e.g., in files, in databases is encrypted. All data in motion (e.g., being viewed in a web browser, or sent via email) is likewise encrypted in transit. This is done to protect privacy at all times. We use various technologies to hinder and prevent e attacks on our web portals and data infrastructure by malicious actors. In addition, we provide security training to all xCures employees regarding best security practices and the handling of PHI, and we monitor our infrastructure for signs of intrusion or hacking attempts.
-
→ Ok. I see how you can help me. What do I do now?
Simply go to patient.xcures.com/signup and follow the instructions.