Keeping Information About Your Child

Information - Online

In addition to your Care Notebook, there are a number of online systems and networks that can help you and your child's health care providers to achieve the best possible healthcare outcome.

State Health Information Exhanges

What is a State Health Information Exchange (HIE)?
A State HIE is the electronic exchange of health-related information between organizations according to nationally recognized communication and privacy standards. Basically, if you participate in an HIE, your health care providers can record and share information about your healthcare with each other and with you. The network that the information is shared on is referred to as a health information network (HIN).
What types of information might be shared in an HIE?
An HIE may share clinical information such as test results, current medication, allergies, and other clinical information vital to your care. Certain demographic information used to identify the individual, such as name, birth date, and address, might also be shared. Participating in an HIE means that you consent to share your health information with your various healthcare providers. This standardized and unified system of record keeping and communication can benefit you and your family.
How does participating in an HIE benefit me and my family?
HIE benefits include:
  • Safer and more efficient emergency treatment. Medical staff will immediately know about your allergies, health problems, medications, and prior visits, helping them care for you without delay.
  • Better communication results in more complete and accurate information. HIE gives your care providers greater access to the information they need in order to diagnose your health problems earlier. They will know more about you and your health history before they recommend treatment. Electronic communication also eliminates potential problems caused by illegible handwriting or messy forms.
  • Improved Care. Access to information about care you received elsewhere gives a better, more complete picture of your health. Viewing your complete medical history—including lab history, medication, and immunization histories—helps your provider make better decisions about your care. That means your care providers can make sure the treatment they give doesn’t interact badly with other treatments you may be receiving. For example, when you can’t remember what medications you are taking, HIE makes information about your conditions and medications available to your doctors, so they will know the right thing to do, instead of doing something that might be harmful, contradictory, or redundant with your previous treatment.
  • Patients save time and money. Providers can access up-to-date patient health information, eliminating the need to create new files or fill out duplicate forms. You’ll be far less likely to undergo duplicated tests or procedures, which minimizes your out-of-pocket expenses, and prevents some hospital readmission. Even your prescriptions can be sent electronically, allowing your pharmacist to prepare your medication before you arrive.
  • Patient empowerment. HIE technology helps you to take a more active role in your health and in the health of your family. You’ll be better informed, so you can take personal responsibility for your healthcare. You can receive an electronic copy of your medical information and share it securely over the Internet with your providers. Finally, your providers can easily communicate follow up information with you, and you’ll always know where to find it.
How do I know my information is kept private and secure?
When you use an HIE to manage your healthcare information, information can be shared in a way that is actually more secure than paper-based files, faxes, or mail, which can be misplaced or disposed of carelessly. HIEs are regulated by rigorous federal and state medical privacy laws and procedures, so you can be sure that your information is protected. State-of-the-art systems are used to secure records to the greatest degree possible and prevent access by unauthorized persons. All systems must comply with the security rules of the federal Health Insurance Portability and Accountability Act (HIPAA). HIPAA is the minimum requirement, though state laws and regulations are often more strict. However, an HIE eliminates some of the frustration an inefficiency that results from needing your consent each time providers need to share your health information with each other. With an HIE, your consent is given to your providers, helping them treat you more quickly without compromising your privacy.
What questions should I ask of my doctor or patient representative?
  1. Is my health information automatically shared in the HIE?
  2. Who controls my information? Me, the HIE, or my doctor?
    • What if I don’t want some or all of my information shared?
    • Can I control which information my doctor sees?
    • Can I control which doctor sees what information?
  3. If I do not want to participate, do I have to take action?
  4. If your doctor uses terms like “opt in/opt out,” ask what they mean.
    • What happens when I opt in?
    • What happens when I opt out?
    • Can I opt out of sharing a particular visit or a lab test?
    • Can I opt out of sharing personal or sensitive data?

If you have additional questions or concerns, contact your doctor or hospital’s chief privacy officer.
To find information about your State's Health Information Exchange, go to: State Health Information Exchange Program.

Patient Portals

What is a patient portal?
Patient Portals are healthcare-related online applications that allow patients to interact and communicate with their healthcare providers, such as physicians and hospitals. Portals are usually within a health care provider's network, but some are standalone websites that can be integrated with your healthcare providers site . Portals are secure and HIPAA-compliant sites that allow the patient (or his parents), as well as the provider to view and add information to the file. A portal is convenient, available online anytime, and includes self-service options that allow you to handle health care interactions with your child’s providers at your convenience. Staff can also view and respond to patient concerns more efficiently. A patient portal creates a single, customizable point of access to applications and information, providing great value to patients.
While the features of portals may vary, options typically allow patient use regarding:
  • Registration
  • Medical history
  • Appointment scheduling requests and confirmations
  • Appointments for preventive and other recommended care
  • Referrals
  • Test results
  • Patient‐ provider communication (questions, concerns, follow up information)
  • Online bill payment, overview of charges
  • Prescription information and renewal
To find out if your provider has a patient portal available for you, contact your provider's administrator.

Online Accounts for State Social Service Assistance Programs

Many states are now offering fast and easy online applications for many social services assistance programs such as Medicaid, Supplemental Nutrition Assistance Program (SNAP), Temporary Assistance for Needy Families (TANF), Energy Assistance, and Child Care (programs available will vary from state to state). Through a single online site, you can find out which programs you may be eligible for and submit a single application for all of them, saving you time and effort. In addition to applying, you can also create an online account that provides information regarding your application and your case. Your personal account will allow you to:

  • access basic personal case information
  • check your application or case status
  • view benefit approvals, denials, and notices
  • check balances for SNAP or TANF
  • renew your benefits
  • view important notices for actions needed on your case
  • report changes to your case
  • update your account
The goal of these online accounts is to provide clients with 24/7 access to their case information and create a more streamlined process for clients to communicate with the Department overseeing these benefits. This new process allows the Department to increase the speed and accuracy of decisions and improve their efficiency.
To locate assistance programs in your area, and find out how to apply and create an online account, go to: Benefits.Gov.

"my Social Security"

The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources. SSI is administered through the Social Security Administration. The Social Security Administration has provided a service to recipients, the "my Social Security" account, which is a personalized online account that you can establish during your working years and continuing using throughout the time you receive Social Security benefits.
This new online service allows people to conduct business with Social Security without having to visit an office or make a phone call, and very often wait for a letter to arrive in the mail. Social Security beneficiaries and Supplemental Security Income (SSI) recipients can access their benefit verification letter, payment history, and earnings record instantly using their online account. Beneficiaries can also change their address and start or change direct deposit information online.
One of the greatest benefits of a "my Social Security" account, is that you can go online to instantly get a copy of your official benefit verification letter. The benefit verification letter serves as proof of income to secure loans, mortgages and other housing, and state or local benefits. Additionally, the letter will prove your current Medicare health insurance coverage, retirement or disability status, and age. From your account, you can print or save a customized letter.
If you are at least 18, and you are an SSI beneficiary, you can sign up for an account at My Social Security. Once there, you will be asked to provide information about yourself, and to answer questions that only you are likely to know. After completing the secure verification process, you can create a "my Social Security" account with a unique user name and password to access your information online at your own convenience, 24/7.
If you are at least 18 but are not receiving SSI benefits, you can still sign up for a "my Social Security" account to get a personalized online Social Security statement. The online statement provides eligible workers with secure and convenient access to their Social Security earnings and benefit information, and estimates of future benefits they can use to plan for their retirement. In addition, the portal also includes links to information about other online services, such as applications for retirement, disability and Medicare. For more information, see My Social Security.

Authors & Reviewers

Initial publication: June 2013; last update/revision: June 2015
Current Authors and Reviewers:
Author: Tina Persels
Reviewers: Shena McAuliffe, MFA
Gina Pola-Money