Frequently Asked Questions: Health Information Exchange (HIE)

What is consent?
Consent means permission. In health care, this is permission that is given by an authorized person to use information about a patient. In most cases, the authorized person is also the person whose information is being shared. In some cases, the person authorized might be a representative, such as a parent, guardian, or person holding a health care proxy. State or federal law may decide:

• if consent must be a signed written document, whether it may be given orally, or is not needed at all;
• if a signed document is required, whether it must be on a form;
• if the consent may apply to multiple uses or if it applies only to only one use;
• if other information must be provided to the person before the consent may be obtained;
• who may ask for the consent; and,
• if certain uses may be made without consent or even if the person objects.

Consent may be required by law or required by the doctor’s office or hospital even when it is not specifically required by law.

What are patient preferences?
Patient preferences are requests made by the patient to the holder of the information (such as a doctor or hospital) regarding the use, sharing, sending, or storage of the information that the holder may agree to, but are not required by law. A holder, like your doctor, might have his/her own rules about your preferences even if not required by law. If your doctor creates polices or rules about consent, he/she may have to obey them. If a holder of information follows a privacy policy stating that the holder must follow the patient’s wishes, and that policy is described to the general public (for example, in a privacy policy on a website), the holder may have to follow that policy by law.

What is a repository?
A repository is the collection of information, also called a database. The purpose of a repository is to receive, store, and send health information. This repository can be used by a single person, organization, or group of organizations. It has a set of rules that everyone follows.

What does public health mean?
Public health activities are carried out by government agencies to prevent disease, prolong life, and promote health. Public health officials keep track of things like vaccinations and sanitation. Often, they watch out for threats to your health, like outbreaks of illnesses.

What is research?
Research is an organized way of gathering information and figuring out how to answer questions about disease.

What is de-identified data used in research?
Sometimes, researchers will collect patient health information from physicians, health plans, and other places that have your health information. De-identified data require that all information that is uniquely related to you be removed. This information includes, for example, the following:

• name
• address,
• date of birth,
• zip code,
• dates of receiving services, and
• medical record numbers.

Unless you consent to your information to be used for a specific study, researchers can only collect portions of your health information, leaving out any data that could identify you. Using de-identified data allows researchers to study patterns of disease and other health care issues without risking the privacy of anyone.

What is a personal health record (PHR)?
A personal health record (PHR) is an electronic, available, lifelong resource of health information to help individuals to make health care decisions. Individuals can own and manage the information in the PHR, which comes from health care providers and the patient. The PHR is maintained in a secure place and the individual determines who can see the information. The PHR is separate from and does not replace the legal medical record of any provider.

PHRs are collections of important information about a person. This information may include an individual’s health, family history, and important, known, and available health information that can be actively updated by the patient. The source of the information for a PHR may be a health care provider, the patient, or claims payment statements provided by the payer.

There are many good reasons to keep a PHR. The top three include the ability to provide doctors with useful information, the ability to look back and recall what care was received, and the ability to have access to the record in case of emergency. The goal of PHRs is to improve communication between patients and their health care team.

What is a personally controlled health record (PCHR)?
A personally controlled health record system enables patients to own complete, secure copies of their medical records. It is an actual medical record, not a portal. Portals, often provided by health care institutions, are windows through which patients can view, but not own or control, a portion of their health data stored at that institution (see question 13 below for more about portals).

What is a health information organization?
A health information organization is one that oversees and controls the exchange of health-related information among organizations according to nationally recognized standards. (http://healthit.hhs.gov/portal/server.pt)

What is a regional health information organization?
A regional health information organization that brings together health care providers and services within a defined geographic area and governs health information exchange among them for the purpose of improving health and care in that community (http://healthit.hhs.gov/portal/server.pt)

Is a patient portal the same as a PHR?
A patient portal is not the same as a PHR, although it may have similar features.
A patient portal is typically owned by the patient’s health care entity or organization. It allows patients to view parts of their health care record as entered by their health care team, such as test results or medications. Some patient portals can be used to communicate with physicians or schedule appointments. A PHR may be owned and managed by the individual. Information in the PHR is typically entered in by the patient, although some information may also come from the patient’s health care provider, payer claims, or payment statements. The health care information in a PHR is used by and for the individual as a resource to make informed health care decisions.

What is e-prescribing?
Electronic prescribing (ePrescribing) uses computers to allow a health care provider to enter, modify, review, and communicate your prescription information. ePrescribing provides secure, 2-way electronic data interchange between providers and pharmacies. SureScripts, founded by the National Association of Chain Drug Stores and the National Community Pharmacists Association, has started electronic prescribing programs in states across the United States (http://www.surescripts.com).

In addition to sending prescriptions, ePrescribing can help the provider make decisions. Information about medication history, allergy information, drug interaction alerts, and insurance benefits eligibility information may be available to the provider. ePrescribing is efficient and accurate because the system is entirely electronic. Prescription errors may result from miscommunication due to unreadable handwriting, unclear abbreviations, and dose designations, unclear telephone or verbal orders, or confusing orders and fax-related problems. E-prescribing helps to eliminate these errors. In addition, the pharmacist does not need to rekey the prescription information into his or her system. There are cost-savings for the providers and pharmacies from the reduction in calls to patients, better patient knowledge of medications that are allowed by the insurance company, and fewer data-entry errors (Tufts Health Plan, 2006).