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 CHOP 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 from other providers it reduces the chance that you will receive unnecessary or duplicate services or experience a delay in 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 notes and/or summaries.

How will my information be used in an HIE?

All participants of HIE’s agree to only use and share information from the exchange for specific purposes allowed by law.  Some exchanges only allow information sharing for the purpose of treatment while other exchanges allow for additional purposes such as payment and other activities allowed by law as explained in CHOP’s Notice of Privacy Practices.

Once CHOP shares your medical information in an HIE, the receiving entity (not CHOP) will manage its use and sharing in accordance with laws like HIPAA. Other laws including Part 2 may limit the use and sharing by the recipient.

See below for more details including how you can opt-out if you choose. Opting out does not retrieve previously shared information.

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 the Health Information Exchanges (HIEs) in which the Children’s Hospital of Philadelphia (CHOP) participates. It details the types of medical information shared through each HIE and describes the members authorized to access this information.

HealthShare Exchange (HSX)

HSX enables participating organizations to electronically access limited patient information that CHOP shares. Specifically, only data related to patient admissions, discharges, and transfers is available. Access is restricted to authorized users within organizations participating in HSX. A list of these participating organizations is available for reference. See a list of HSX participating organizations.

Care Everywhere

This HIE allows healthcare providers outside of CHOP to access most parts of a patient’s CHOP medical record electronically. The information available includes admissions, discharge, operative and progress notes, consult reports, labs, imaging reports, medications, problem lists/diagnoses, and more. The purpose of sharing this comprehensive data is to support patient care at the requesting organization. Authorized viewers include medical and administrative personnel at other healthcare organizations connected to health information networks, including the federal Trusted Exchange Framework (TEFCA) network. TEFCA facilitates electronic sharing of health records among trusted parties for treatment purposes. More information can be found here: TEFCA along with the List of Participants.

eHealth Exchange

CHOP is only using this HIE to exchange data with the Social Security Administration (SSA). The SSA can query and obtain a patient’s CHOP medical record to verify claims and efficiently deliver benefits after they obtain patient authorization.

Link2CHOP

This HIE mainly facilitates access for providers outside of CHOP caring for the patient, such as primary care and referring physicians, to view a patient’s CHOP medical record. The shared data includes most parts of the medical record: admissions, discharge, operative and progress notes, consult reports, labs, imaging reports, medications, problem lists/diagnoses, and more. This sharing supports continuity of treatment with other providers. Authorized users include community physicians and their support staff, 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?

Sharing of this type of information varies based on several factors designed to ensure patient privacy and compliance with laws.  
Progress notes from certain CHOP programs focusing exclusively on providing sensitive health care to adolescents, such as reproductive health, are blocked from HIE sharing. However, information such as diagnosis, medication, labs and medical history from these visits may be shared because electronic medical record systems are designed to share such information for patient safety.

Progress notes from CHOP substance use disorder programs are automatically shared in HIE’s as part of the patient’s agreement to participate in such treatment program at CHOP, but the patient may opt-out of HIE data sharing if they choose, which includes their entire CHOP record.

At times CHOP providers outside of these programs, such as in Primary Care, may document information about reproductive healthcare, drug and alcohol use, mental health and HIV/AIDS and such information in progress notes and elsewhere in the record will be automatically shared with HIEs unless the patient or their parent or legal guardian opts out of HIE sharing. 

If you have concerns about any of this type of information being shared in an HIE that CHOP participates in, you can opt-out of HIE data sharing of your entire CHOP medical record.

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

Medical information related to services that an adolescent patient has consented to 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 of your entire CHOP medical record.

How can I opt-in to HIE data sharing?

No action is required.  A patient’s CHOP medical record is automatically shared by CHOP in HIEs it participates in unless the patient has opted out of HIE data sharing at CHOP.

If you do not want to have your entire CHOP medical record shared in HIEs, you may opt-out of CHOP HIE data sharing as described below (see "How can I opt-out?").

How can I opt-out?

If you would like to opt-out of your CHOP medical information being shared with HIEs, complete the opt-out form at www.chop.edu/hieoptout and submit it to CHOP via email or mail. 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 through other means, such as fax, email or telephone, to facilitate high-quality care and other activities for purposes described in CHOP’s Notice of Privacy Practices.

Please be aware that if you opt-out of HIE data sharing at CHOP, once your request is processed your CHOP 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. You may be able to contact some of the HIEs directly to ask that you be opted out of further use and sharing of your data at their organizations.

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.

Who can opt-out of sharing a patient’s 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.

For patients treated in CHOP substance use disorder programs, the patient may opt-out of HIE data sharing at CHOP. Please note that if a patient in such a program chooses to opt-out of HIE data sharing at CHOP, if the patient continues to receive care at CHOP when they turn 18 years of age they will need to reconfirm their HIE opt-out decision.

What happens when a patient turns 18 years of age?

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.

If a patient has not previously opted out of HIE data sharing at CHOP, their information will continue to be shared by CHOP when they turn 18 years of age.

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.