What is a Health Information Exchange?

A Health Information Exchange (HIE) is a way to share your or your child’s medical information electronically between healthcare providers and others participating in the exchange.

In today’s world where patients may receive medical care from many different healthcare providers – not all of whom are part of the same health system – HIEs just make sense. Allowing your different healthcare providers access to your electronic medical information can reduce the need for you to get and send your medical information to your different healthcare providers.

Also, when a healthcare provider can use an HIE to quickly and electronically obtain your medical information it reduces the chance that you will receive unnecessary or duplicate services or experience a delay in your treatment. These benefits improve the overall quality of your care and make the healthcare system work more effectively.

What information is available in an HIE?

Generally, most information in your CHOP electronic medical record is available in an HIE, including diagnoses, medications, allergies, lab test results, medical histories and visit summaries.

How will my information be used in an HIE?

All participants of an HIE agree to only use and share information from the exchange for purposes of treatment, payment and other activities allowed by law.

The CHOP Notice of Privacy Practices explains in detail the purposes for which CHOP can use and share your medical information and it will give you an understanding of the types of activities for which an HIE may use and share your information too.

Once CHOP shares your medical information, the HIE organization (and not CHOP) will determine, control and administer how your information will be viewed, shared, accessed, exchanged or used.

Who can see my information in an HIE?

Medical information in an HIE can only be viewed by authorized users of organizations that participate with the HIE. In addition to healthcare providers, an HIE may have participants that include insurers or other entities such as a local Department of Health. See the chart below for more details about the participants in each of the HIEs in which CHOP is a participant.

Which HIEs does CHOP participate in?

Below is an overview of each of the HIE’s that CHOP currently participates in, including a description of the types of medical information shared and the types of participating members.

HealthShare Exchange (HSX)

This HIE allows participating organizations to electronically access limited information about you that CHOP shares with HSX.

• What information is currently available? Only data about patient admissions, discharges and transfers.
• Who can see data in this HIE? Only authorized users in organizations that participate in HSX can see your information. See a list of HSX participating organizations.

Care Everywhere

This HIE allows healthcare providers outside of CHOP to electronically access your CHOP medical record.

• What information is currently available? Access to most parts of your CHOP chart including: patient admissions, discharge, operative and progress notes, consult reports, labs, imaging reports, medications, problem lists/diagnoses, and more.
• Who can see data in this HIE? Medical personnel at other healthcare organizations that use Care Everywhere. See a list of Care Everywhere participating organizations.

Link2CHOP

This HIE mainly allows referring providers who are outside of CHOP and who are caring for you, such as your primary care physicians, to see your CHOP medical record.

• What information is currently available? Access to most parts of your CHOP chart including: patient admissions, discharge, operative and progress notes, consult reports, labs, imaging reports, medications, problem lists/diagnoses, and more.
• Who can see data in this HIE? Community physicians and their support staff and some insurers, research monitoring organizations, and other organizations approved by CHOP for uses allowed by law.

What about mental health, drug and alcohol, HIV/AIDs information and certain reproductive health care?

While sensitive information from CHOP clinics that provide services such as mental health, drug and alcohol, HIV-AIDS and certain reproductive health treatment is blocked from the HIEs, information about these conditions and services may be included in other medical information CHOP shares with HIEs.

Information about these services and conditions which may be shared in HIEs includes diagnoses, lab results, medications and provider notes. If you have concerns about this type of information being shared in an HIE, you can opt-out of HIE data sharing.

What about medical information of adolescents who have consented to their own care?

Medical information related to services where an adolescent patient has consented for their own care may be shared through HIEs as described elsewhere in this document.

Such information about these services and conditions may include diagnoses, lab results, medications and some provider notes related to pregnancy prevention/contraception, pregnancy testing, pregnancy care and testing/treatment for sexually transmitted infections. If you are a patient who has consented to your own care and you have concerns about this type of information being shared in an HIE, you can opt-out of HIE data sharing.

How can I opt-in to HIE data sharing?

Patients who have not previously opted out of HIE data sharing will begin to have their medical information shared by CHOP in HIEs as of June 21,2021.

If you would like to prevent this from happening, please opt-out of HIE data sharing as described below (see "How can I opt-out?").

CHOP is transitioning to this approach because of the benefits that sharing your medical information with HIEs provides for you, for your other healthcare providers, and for CHOP. Allowing your different healthcare providers access to your electronic medical information can reduce the need for you to get and send your medical information to your different healthcare providers. Also, when a healthcare provider can use an HIE to quickly and electronically obtain your medical information, it reduces the chance that you will receive unnecessary or duplicate services, or experience a delay in your treatment. These benefits improve the overall quality of your care and make the healthcare system work more effectively.

If you previously opted-out, and have changed your mind, you can opt back in to HIE data sharing. CHOP may ask you to confirm your request.

How can I opt-out?

If you would like to opt-out of CHOP sharing your medical information with HIEs, please complete the opt-out form at chop.edu/hieoptout and submit it online. A patient may also opt-out while at CHOP for a visit. Even if you opt-out, CHOP will continue to share your medical information for purposes described in our Notice of Privacy Practices through other means, such as fax, email or telephone, to facilitate high-quality care and other activities.

Please be aware that if you opt-out of HIE data sharing at CHOP, once your request is processed your medical information will no longer be shared electronically by CHOP in HIEs. Information CHOP has already shared with an HIE cannot be retrieved and the HIE will continue to use and share the information they have for purposes of treatment, payment, and other activities allowed by law.

What if I have already opted-out?

Patients who previously opted out of HIE data sharing do not need to do anything to stay opted out until the patient’s 18th birthday.

If I opt-out can I opt back in?

Yes, you can change your mind and opt back into HIE data sharing. CHOP may ask you to confirm your request.

What happens when my child turns 18 years of age?

For patients whose information was shared in HIEs prior to turning 18 years of age, their information will continue to be shared in HIEs.

For patients who previously opted-out of HIE data sharing, their opt-out decision will expire on their 18th birthday. Starting at that point and going forward, the patient’s information will be automatically shared in HIEs in which CHOP participates.

Patients 18 years of age or older who do not want to participate, may opt-out of HIE data sharing.

Who can opt-out of sharing my medical information in an HIE?

Generally, for patients younger than age 18, a parent or legal guardian makes healthcare decisions for the patient and controls release of medical information, including deciding to opt-out of HIE data sharing.

When the patient is aged 13 to 17, either the patient or parent can opt-out of HIE data sharing.

When patients turn 18 years of age, they are generally considered competent adults who can make their own healthcare decisions, including opting out of HIE data sharing.

How secure are HIEs?

Healthcare providers and insurers are required by law to protect the privacy of medical information. Special security features seek to keep patients’ information secure and prevent medical information from being seen by anyone who should not have access. For example, data transfers between healthcare providers are encrypted so that patients’ medical information cannot be accessed by anyone without the de-encryption key. If improper access does occur through an HIE, the law requires that the patient (and parent, if applicable) be notified.

Who do I contact for more information?

If you have additional questions about CHOP’s HIE activities please contact us online and someone will be in be in touch to answer your questions.