Keeping and Sharing Information

There are a number of online systems, networks, and apps that can help you and your child's health care providers to keep and share important information about your child to reach the best possible health care 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, and can be of help to many patients. Basically, if you take part in in an HIE, your health care providers (with your consent) can share information about your health care with each other and with you, such as: test results, current medication, allergies, visit notes, and other clinical information vital to your care. Certain information used to identify the patient, such as name, birth date, and address, might also be shared.

How does participating in an HIE help me and my family?

  • Safer emergency treatment - Medical staff will know right away about your allergies, health problems, medications, and prior visits, helping them care for you without delay.
  • Better communication and information - HIE gives your care providers more access to the information they need to diagnose your health problems earlier and recommend treatment.
  • 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.
  • 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. 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 and they can follow up with you on the HIE.

How do I know my information is kept private and secure?

HIEs are regulated by strict federal and state medical privacy laws and procedures, so you can be sure that your information is protected. All systems must comply with the security rules of the federal Health Insurance Portability and Accountability Act (HIPAA). See the Portal's page on HIPAA/FERPA for more information.

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?
  3. What if I don’t want some or all of my information shared?
  4. What happens when I opt in? What happens when I opt out?
If you have more 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 online apps that allow patients to keep track of their health care and communicate with their providers, such as doctors and hospitals. Portals are secure, HIPAA-compliant sites that allow the patient (or his parents), as well as the provider to conveniently view and add information to the file anytime.
While the features of portals may vary, options can allow patients to view and manage:
  • 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 their administrator.

Online Accounts for State Social Service Assistance Programs

Many states are now offering fast and easy online applications for assistance programs such as Medicaid, Supplemental Nutrition Assistance Program (SNAP), Temporary Assistance for Needy Families (TANF), Energy Assistance, and Child Care (available programs will vary from state to state). Through the website, you can find out which programs you may be eligible for and submit a single application for all of them, saving 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 give clients 24/7 access to their case information and create an easier way for clients to communicate with the Department overseeing their case and makes the process much faster. 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 (through the Social Security Administration) pays benefits to disabled adults and children who have limited income and resources. The Social Security Administration provides a service to recipients, the "my Social Security" account, which is an online account that you can start when you begin working and use throughout your life. This service allows people to do business with Social Security without having to visit an office or make a call, and wait for a letter to arrive in the mail. Social Security and Supplemental Security Income (SSI) beneficiaries can access their benefit verification letter, payment history, and earnings record instantly using their “my Social Security” account, as well as change or update information.
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, which serves as proof of income and disability status. If you are at least 18, and you are an SSI beneficiary, you can sign up for an account at My Social Security.
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 that gives you access to earnings and benefit information. In addition, it includes links to information about retirement, disability and Medicare. For more information, see My Social Security.

Organizing and Keeping Records

When caring for a child with special health care needs, families collect information, forms, and paperwork from doctors, therapists, school, and many other sources. Organizing and record keeping can be a hard to do, but having a system will make your life much easier, and can help your child to receive the best and most efficient care and services.
One mom said, "I did not keep my child's records organized. Some of it was in a file, some in a folder, and the rest was lost in a stack of papers and bills somewhere in my house. When his clinician asked for dates of procedures and diagnosis, I had to make phone calls and request copies of the information I had misplaced. Now, I no longer have that problem, because I keep all of the important information about my child and his needs in a binder. I take that binder with me to all appointments and can add new information and paperwork into it as I get it."
Another mom said, “I look at the Care Notebook as my son’s instruction manual! It gives me great peace of mind knowing that the vital information to keep him safe, happy and healthy is available in the event I am not there to communicate it to others. It is all about him, yes it has medical information, medications and contact numbers but it also has information about how to communicate with him and what he likes and dislikes, which is just as important.”
Although electronic health records have helped many organizations and individuals to store records in one location “in the cloud,” electronic records sometimes add to organizational challenges: some of the information is digital and some is printed. It’s difficult to keep track of everything. Whether you choose to print it all, or scan all of your child’s paperwork, organize the information in one place. This will allow easy access when this information is needed for appointments, applications, caregiver instruction, and emergencies. Find a system that works for you, and stick to it.
There are many ways to organize information to have on hand when you need it:
  • Some parents use a binder or “Care Notebook” for the most recent and important information, and as time goes on, they file older information away in a separate file folder, box, or expandable file.
  • Many families have chosen to download and keep important information on a USB Flash Drive, which can be easily accessed on any computer with a USB port.
  • Most of the time, paperwork and medical bills older than 3 years can be discarded and shredded unless it is information about a specific diagnosis or health care need and would be helpful for future appointments, procedures, or decision making.
  • Cloud-based storage provides a ready-made virtual data storage solution, and is becoming more popular. When using a cloud storage service, make sure the service providers are following federal standards and regulations, such as the Health Insurance Portability and Accountability Act (HIPAA) and the Health Information Technology for Economic and Clinical Health (HITECH) Act.

Care Notebook

Some families find a Care Notebook to be a useful tool to keep their child’s records together. The Care Notebook can be put together for your child's individual needs by choosing and downloading only the pages you want. Single notebook pages are available for download on the Care Notebook page.
Click the links below to download a full Care Notebook in English or in Spanish:
  • From Utah Family Voices, this care notebook incorporates pages and ideas from various states. Use selected pages or the entire notebook:
    • Collaborative Care Notebook (Word Document 9.8 MB) - Word version – easy to edit
    • Collaborative Care Notebook (PDF Document 467 KB) - PDF version – print and fill out
    • Completo Care Notebook (PDF Document 1.3 MB) - Al cuidar la salud de su niño con necesidades especiales, usted puede recibir copias e información de muchas fuentes. Un Cuaderno de registro le facilitara a organizarse mejor con la información más importante. Con un cuaderno de registros le será mucho más fácil para usted encontrar y compartir una porción de información con otros quienes son parte del equipo del cuidado de su niño.
  • Portable Medical Summary (PDF Document 70 KB) - A 2-page form to keep track of medical information including diagnoses, medications, equipment, hospitalizations, and insurance. This could be carried in a wallet or pocket at all times or for short medical visits when the complete Care Notebook may not be needed.

More Information on Building Care Notebooks

Building Your Care Notebook (AAP) - The American Academy of Pediatrics provides a central place with links to several forms from many states. For families that are new to making care notebooks, we suggest you pick one form and try filling it out before downloading other forms.

Authors & Reviewers

Initial publication: June 2013; last update/revision: September 2020
Current Authors and Reviewers:
Authors: Gina Pola-Money
Tina Persels
Reviewer: Tina Persels
Authoring history
2016: update: Tina PerselsA
2013: first version: Shena McAuliffe, MFAR; Gina Pola-MoneyR
AAuthor; CAContributing Author; SASenior Author; RReviewer