Q: Why should I enroll in Health Heritage?
A: We now have a much better understanding of how genetic or inherited conditions behave in different persons and within families. By using Health Heritage, you can learn what your level of risk is for common hereditary conditions, and your doctor can personalize screening procedures to detect these conditions earlier, when they can be easier to treat.

Q: How do I enroll and start to use Health Heritage?
A: You will want to follow these steps:

  1. Register (or Login) with NorthShoreConnect
  2. Connect to Health Heritage
  3. Agree to the Terms of Use
  4. Automatically transfer your personal medical information, add new information and share with relatives and physicians.

Q: How does Health Heritage work with my genetic profile?
A: Our genetic profile is incomplete without information on how our genes operate within our family. Health Heritage makes these connections by helping us create a full family medical history.

Q: Who sees my Health Heritage information?
A: You control who sees your data. You can choose to send a copy of your disease risk assessment to your doctors. You can also share information with family members and collect their medical histories to make your family medical history more complete.

Q: How will my confidential medical information be kept secure?
A: Health Heritage protects your privacy by storing your medical information in a separate, secure NorthShore server that can only be accessed by authorized NorthShore staff. No one but you can send your information to your doctors, relatives, or anyone else. You have the option to send a copy of your Health Heritage report to your medical record; if you do, only the clinicians treating you will be able to read it. Because genetic information is protected by state law, your risk assessment will not be included when general requests are made for copies of your medical record. You must grant separate permission to release your Health Heritage report outside NorthShore.

Q: What should my Health Heritage history include?
A: The more people you can add to your family medical history, the more refined and accurate your risk assessments will be. Ideally, your family health history should have three generations of family medical history.

Q: Who do I contact if I have a question about Health Heritage?
A: Please email us at healthheritage@northshore.org. Please do not include any detailed personal or family medical information in your email. If you would like to include your phone number in your email, someone will call you during business hours. We will aim to answer your question or contact you within 24-48 hours.

Q: What do I do if I believe the information from my medical record is incorrect?
A: Contact us at healthheritage@northshore.org. If we cannot resolve the issue we will forward your request to NorthShore’s medical records department that has a process for correcting and updating medical records.

Q: How can my family member who is not a NorthShore patient sign up for Health Heritage?
A: Because Health Heritage is currently only being used in conjunction with NorthShoreConnect, you will need to enter information directly for your family members who do not receive their care at NorthShore.

Soon, however, Health Heritage will be available both from NorthShoreConnect and also on the Internet where anyone can sign up and share information with family members.

Q: Can I get access to the medical records of my family members?
A: Usually you can only access medical records for other members of your family with their permission, and each state has different requirements which can be very complicated. Health Heritage’s unique family sharing method lets you share information with family members privately and directly. Currently, this is limited to only your family members who are patients at NorthShore. In the near future Health Heritage will be expanding its connections to the Internet and to other health systems and electronic medical records so more and more data can be available and shared directly from these sources.

The government is also working to help patients get easier access to their medical data. There is an application called “Blue Button” which allows you to electronically access your billing or “claims” data which may contain information about the date of diagnosis of important medical conditions and that may help you answer some of the Health Heritage questions for your family members. Either they can do this themselves or they can authorize you to help them.  The following Blue Button links are for:

A growing number of health insurance companies, such as Aetna and United Health Care, are also offering Blue Button services. Go to your insurer’s website and look for the Blue Button logo to download your information.

Q: How can knowing my family health history lower my risk of developing disease or insure that it is detected as soon as possible?
A: First, there may be preventive actions you can take in your daily habits or lifestyle that will reduce your risk, such as diet and/or exposures. Second, if Health Heritage determines that you are at high risk, it may recommend you consider genetic counseling. As a result there may be specific tests or screening procedures that you can start that can insure early detection.

Q: What if Health Heritage recommends genetic counseling and they suggest doing genetic testing, aren’t those tests expensive?
A: Genetic testing can be expensive but more and more health insurance companies are recognizing their value and paying for them. The information that Health Heritage helps you collect and the subsequent recommendation can be used to support a request for reimbursement of the testing cost.

Q: How long will it take to get an appointment at the High Risk or Medical Genetics Clinics?
A: Please note that when Health Heritage makes a recommendation for genetic counseling at the Medical Genetics Clinic, the wait for an appointment may be a few weeks. However, NorthShore has recently opened a new High Risk Breast Cancer Screening Clinic. If you are at high risk for Breast Cancer or its related syndromes you may be able to make an appointment there sooner. Because Health Heritage is assessing risks for possible future cancers it is extremely unlikely that a small delay in discussing your Health Heritage report will be harmful. We always recommend discussing your Health Heritage risk reports with your primary care provider.

For more information about Health Heritage, please email healthheritage@northshore.org.

× Alternate Text