Organizing your child’s health information not only helps you, but can help providers or other caregivers to better know and support your child. We spoke with parents to hear what they have learned about organizing all the paperwork, appointments, schedules and other information needed to care for their child.

Parens in our Care Organization video

Thank you to all the families who participated in our Organizing Your Child’s Health Information videos. The videos for our series Organizing Your Child’s Health Information were filmed at Seattle Children’s, and away, during the first two weeks of June 2018. The childrens’ health conditions include a wide range of diagnoses such as autism spectrum disorder, genetic conditions and transplant recovery.

Why - Benefits for Parent and Child

A lot of paperwork – You may both get and create a lot of paperwork about your child’s health. You may have reports from medical visits, instructions for care, medicine lists and directions, photos or images, laboratory results, contact information, insurance information and more.

One central place – Keeping a record in one place where you, your spouse, partner, or teen knows where to find all paperwork is a way to keep family “in the know.”

A historical record – Prompts your memory, allows you to check for errors, and can serve as a journal to track data over time that may lead to insights into or improvements in the health condition.

Sharing Information – Share health status and your child’s needs quickly and accurately among extended family; caregivers; doctors; therapists; child care or school staff; and at appointments, urgent care or during emergencies.

Applications – For state services, schools or camps, or for appealing decisions from government programs or insurance.

Proof – When you need to show why equipment, medicine or other care is necessary or that something happened.

Why is it important to organize your child’s health information?

When - Start Early, Important Events

Pregnancy and beyond – Whether you learned about your child’s health condition during pregnancy, the health condition started when your child was a teen, or your child has no diagnosis; keeping paperwork from the beginning will make things easier down the road. You may only have time at first to toss papers in a big box. If so, you can always sort later.

Transitions, appointments – Key times you may use information from your central record include at medical appointments; meetings or appointments with new providers or caregivers; preparing for an IEP meeting; hospital admission; attending a new child care, school or camp; emergency department visits.

Early and often – As with a car, maintenance is useful–sorting or filing papers as soon as you get or create them saves time in the long run.

When did you realize you would need to organize your child’s health information?

In what situations has it been helpful to have your child’s health information organized?

What - Records and Information to Track

Information you get – Medical summaries; prescriptions; therapy instructions; diagnosis information; laboratory or procedures reports; progress notes; insurance bills and notices; in-home aide schedules; appointment times; important contacts’ names, telephones, emails; IEPs/504 Care Plans; notices or eligibility statements from government programs or services; information on services or therapies child will need.

Information you create – You may also create your own records such as notes from medical visits; questions for providers; medication or diet tracking; resources you learn about; observations or logs of symptoms, events, or behavior; emails or letters you write; applications you submit; and a current summary of your child’s needs and health status such as a Portable Health Record or Shared Care Plan (need link).

What kinds of information do you keep track of?

Where - Apps, Online or Good Old Paper

Paper – Though some parents use smart phones, mobile electronic devices or computers to file records, most still use three-ring binders, file cabinets, accordion file folders, or big envelopes to keep track of all the paperwork. Learn how to create a Care Notebook and download the forms.

Electronic Health Records – Electronic Health Records allow patients to email doctors or access health records online. While more and more doctors and hospitals use electronic health records, many providers still do not. Check with your doctor, hospital, and health insurance company to find out if they offer an online health portal and request information on how to access your child’s electronic health records.

Mobile Apps and Websites: Parents we talked with mentioned the following:

  • Mobile Apps: Search your mobile App store for shared care plan, personal health record and caregiver organizing apps such as Caremap, Carezone, MyMedicalApp, and iBlueButton.
  • Online: Web-based personal health record services such as HealthVault. MyPHR, WebMDPHR, and others can be accessed from computers or mobile devices.

How do you organize your child’s health information?

Are there any tools that have helped you organize your child’s health information? Any apps?

What Parents are Saying

“File everything as soon as you get it!”

“Everything is in Excel! I use Excel [software] to keep track of what files I have, all the medications, weight, everything.”

“We scan our papers as soon as we get them, to put them in the computer then throw away the paper.”

“I email documents to myself, then file them on my phone or computer.”

“I take pictures of documents and keep on my phone so I can show the doctor the image at the appointment.”

“I used to keep hard copy paper but now we’ve gone completely electronic.”

“I make sure I have hard copies of important emails.”

“Before a meeting or appointment, I pull all the information I’ll need from my big file.”

“When possible, I email information before an appointment or meeting.”

“Keeping track of all the info is helping my child, too, not just my husband and me.”

“Like with everything else—give yourself a respite, take breaks—it’s OK.”

“My friends help by coming to appointments and taking notes.”

“I take videos at Physical Therapy so we can see what to do.”

“At some point, I’m going to hand all this over to my child.”

“As soon as we get new insurance cards, I write the year on them in Sharpie. That way, when I’m unraveling problems with medical suppliers or providers, I can quickly realize when they are using an out of date insurance number.”

“I keep photos of our insurance ID cards on my phone for handy reference.”

One tip you would give to other parents about organizing their child’s health information?

Additional Information

Building Your Care Notebook – For Families and Caregivers, National Center for Medical Home Implementation, American Academy of Pediatrics

How to Organize Your Child’s Medical Information – Parent Companion

What kinds of information do you keep track of?

  • A lot of paperwork — You may both get and create a lot of paperwork about your child’s health. You may have reports from medical visits, instructions for care, medicine lists and directions, photos or images, laboratory results, contact information, insurance information and more.
  • One central place — Keeping a record in one place where you, your spouse, partner, or teen knows where to find all paperwork is a way to keep family “in the know.”
  • A historical record — Prompts your memory, allows you to check for errors, and can serve as a journal to track data over time that may lead to insights into or improvements in the health condition.
  • Sharing Information — Share health status and your child’s needs quickly and accurately among extended family; caregivers; doctors; therapists; child care or school staff; and at appointments, urgent care or during emergencies.
  • Applications— For state services, schools or camps, or for appealing decisions from government programs or insurance.
  • Proof — When you need to show why equipment, medicine or other care is necessary or that something happened.

Why is it important to organize your child’s health information?

  • Pregnancy and beyond — Whether you learned about your child’s health condition during pregnancy, the health condition started when your child was a teen, or your child has no diagnosis; keeping paperwork from the beginning will make things easier down the road. You may only have time at first to toss papers in a big box. If so, you can always sort later.
  • Transitions, appointments — Key times you may use information from your central record include at medical appointments; meetings or appointments with new providers or caregivers; preparing for an IEP meeting; hospital admission; attending a new child care, school or camp; emergency department visits.
  • Early and often — As with a car, maintenance is useful–sorting or filing papers as soon as you get or create them saves time in the long run.

When did you realize you would need to organize your child’s health information?

In what situations has it been helpful to have your child’s health information organized?

  • Information you get—Medical summaries; prescriptions; therapy instructions; diagnosis information; laboratory or procedures reports; progress notes; insurance bills and notices; in-home aide schedules; appointment times; important contacts’ names, telephones, emails; IEPs/504 Care Plans; notices or eligibility statements from government programs or services; information on services or therapies child will need.
  • Information you create—You may also create your own records such as notes from medical visits; questions for providers; medication or diet tracking; resources you learn about; observations or logs of symptoms, events, or behavior; emails or letters you write; applications you submit; and a current summary of your child’s needs and health status such as a Portable Health Record or Shared Care Plan (need link).

What kinds of information do you keep track of?

  • Paper—Though some parents use smart phones, mobile electronic devices or computers to file records, most still use three-ring binders, file cabinets, accordion file folders, or big envelopes to keep track of all the paperwork.
  • Electronic Health Records—Electronic Health Records allow patients to email doctors or access health records online. While more and more doctors and hospitals use electronic health records, many providers still do not. Check with your doctor, hospital, and health insurance company to find out if they offer an online health portal and request information on how to access your child’s electronic health records.
  • Mobile Apps and Websites: Parents we talked with mentioned the following:
    • Mobile Apps: Search your mobile App store for shared care plan, personal health record and caregiver organizing apps such as Caremap, Carezone, MyMedicalApp, and iBlueButton.
    • Online: Web-based personal health record services such as HealthVault. MyPHR, WebMDPHR, and others can be accessed from computers or mobile devices.

How do you organize your child’s health information?

Are there any tools that have helped you organize your child’s health information? Any apps?

What Parents are Saying

“File everything as soon as you get it!”

“Everything is in Excel! I use Excel [software] to keep track of what files I have, all the medications, weight, everything.”

“We scan our papers as soon as we get them, to put them in the computer then throw away the paper.”

“I email documents to myself, then file them on my phone or computer.”

“I take pictures of documents and keep on my phone so I can show the doctor the image at the appointment.”

“I used to keep hard copy paper but now we’ve gone completely electronic.”

“I make sure I have hard copies of important emails.”

“Before a meeting or appointment, I pull all the information I’ll need from my big file.”

“When possible, I email information before an appointment or meeting.”

“Keeping track of all the info is helping my child, too, not just my husband and me.”

“Like with everything else—give yourself a respite, take breaks—it’s OK.”

“My friends help by coming to appointments and taking notes.”

“I take videos at Physical Therapy so we can see what to do.”

“At some point, I’m going to hand all this over to my child.”

“As soon as we get new insurance cards, I write the year on them in Sharpie. That way, when I’m unraveling problems with medical suppliers or providers, I can quickly realize when they are using an out of date insurance number.”

“I keep photos of our insurance ID cards on my phone for handy reference.”

One tip you would give to other parents about organizing their child’s health information?

Building Your Care Notebook – For Families and Caregivers, National Center for Medical Home Implementation, American Academy of Pediatrics

How to Organize Your Child’s Medical Information – Parent Companion

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