Hand to Hold's Official Blog: Written by Parents for Parents

{Professional Insight} Creating a Preemie Personal Health Record


Sara Skillen
Twelve years ago, when our daughter mysteriously and unexpectedly burst into this world at 31 weeks, I was not yet a professional organizer. I was, however, working in the legal department of a real estate investment company, and I knew the value of keeping up with files and paperwork. Throughout my NICU-induced stupor and the stress of being at the hospital every day all day to be near her, I somehow had the presence of mind to hang onto virtually every slip of paper I was handed. It all went into a giant pile on the desk at home. Perhaps this pile sounds a bit familiar to you? I kept everything that came in the mail from our insurance company – same pile. All of the info from the medical equipment companies, occupational therapist, home nurse, etc.… you get the idea.

I’m generally not a fan of piles of paper, and I certainly don’t recommend that my clients hang on to all of their ancient receipts, bills and scribbled notes in my day-to-day organizing adventures. However, a medical crisis is one area of organization where I believe a little bit of hoarding on the front end can be warranted – keeping everything at first is better than losing some tiny scrap of crucial information. Although I didn’t have the energy to create any sort of a system for The Pile, I distinctly remember going through the 6-inch stack of insurance EOBs to find the number for the rejected claim on the breast pump. I was able to call the company and make the case for having it covered (and it ultimately was).   On rare occasions, it’s good to over-save.

But notice that I said, “at first.About a year after our NICU experience, we were facing a cross-country move. I was feeling more or less back to normal (or new normal, anyway), our daughter was developing well, and I needed to start getting things in order. I had to attack The Pile and make decisions about what was still relevant, and what I would need when we began the quest for a new pediatrician. Organization is all about decision-making, and asking important questions about the usefulness or love of an item when you haven’t touched it for a while. Will I use this again? Do I need to refer to it? Will anyone else need to?

young child at writing desk

For instance, once all of the final bills were settled and equipment returned, I pitched the EOBs, flyers and instructions for various baby products, as well as random business cards. I kept all of her hospital pediatric and immunization records, plus the notes from her visits with an occupational therapist. Ultimately most of those things were passed on to her new doctor, and I didn’t stop to think that it might be helpful to keep a copy for myself. Something else I hadn’t stopped to consider:  medical records retention rules are not consistent from state to state, provider to provider.  On top of that, hospitals, clinics and offices often change ownership and names, making it tough to trace back to where to even request records. It’s better to get the records in hand in the beginning.

Nowadays, with the advent and push for electronic medical records, it’s especially helpful to create a Personal Health Record (or “PHR”) for your baby for future reference. According to myPHR.com, a Personal Health Record is “tool that you can use to collect, track and share past and current information about your health or the health of someone in your care.” It’s particularly significant if your child will continue to undergo treatment or therapy, and if you need assistance from a friend or family member in dealing with paperwork and bills. PHRs are also especially useful (and possibly life-saving) in an emergency situation, so that those treating your child have access to current information.

There are all sorts of choices for medical record organization and PHRs, ranging from online services to hard copy options. Hard copy is simplest and cheapest, but also less portable and more at risk for loss or damage.

Ideas to Consider For Organizing a Preemie Health Record

  1. A box.  That’s right, a simple cardboard box, like a Banker’s box. It should be one that can hold file folders with simple divisions of paperwork.  Label everything as clearly as you can, and put items in reverse chronological order so you can see the most recent first. A box may be your best first option, because it is simple and doesn’t require too much of your already-overtaxed brainpower.
  2. A large three-ring binder, with labeled dividers. This option is good to think about a few months after your baby is born, when hopefully things are a bit more settled. If you don’t have complete records from the hospital or doctors, now is the time to request them. Categories could include HISTORY, INSURANCE, DOCTOR/SPECIALISTS’, MEDICATIONS, TESTS, SURGERIES, HOSPITAL INFO, APPOINTMENTS, NOTES AND QUESTIONS, and FOLLOW-UP. As the binder grows, it may be necessary to separate a large category like INSURANCE into a separate expandable folder.
  3. If the thought of creating a binder from scratch overwhelms you, consider a ready-made binder like the Lifebook (www.lifepointspublishing.com). The Lifebook was originally conceived for adults, but the categories are applicable to children as well and even include sections for Correspondence, Directions, and Thoughts/Reflections. If you have a loved one who is far away and wants to help, a ready-made medical binder makes a wonderful gift. I really wish I had had something like it 12 years ago.
  4. If you reach a point with your child that you don’t feel the need to keep every single scrap of paper, consider scanning or uploading the most critical information into one of the following online services:
  • myMediconnect – free account for all the PHR basics. If you want the company to pull all medical records for you, costs start at $29.95 for retrieval services.
  • Microsoft Health Vault – connects with apps and devices for everything from tracking children’s immunizations to complex healthcare issues.
  • SafelyFiled – not a PHR, and not just for medical records, SafelyFiled is a secure online organization system where you can store important documents and provide access to key individuals if needed. The program includes an app that allows you to simply take pictures of key documents and automatically upload them to your account. Pricing starts at $48/year.
  • Some doctors and healthcare companies offer PHRs now – some are free, some with monthly subscription fees. It’s important to choose something secure, and easy for you to use and understand.

It’s good to not only get some sort of system set up for yourself, but also maintain it for the future. Get into a habit of spending 15-30 minutes a week reviewing and filing the information.  Whether you stick with the box system, or opt to go high-tech, you will rest easier knowing that as your preemie grows you have an excellent resource for healthcare providers as well as for yourself. And, taking that proactive step to organize the paper clutter creates peace of mind, allowing you to focus on the most important thing – your child.

Guest Blogger

Skillen, Sara2

Sara Skillen is a professional organizer based in Nashville, TN, specializing in home, home office and small business organizing. She and her husband Jeff are parents to 12-year-old daughter Cameron, born at 31 weeks weighing 3 lbs., 3 oz., and 9-year-old son Wyatt, born full term. Sara loves to “assess mess”, and create functional, personalized solutions for her clients’ organizing dilemmas. She writes a regular organizing column for The Plum online magazine, as well as her own blog Sorting Through the Haystack: Thoughts on the Organized Life. She is a member of the National Association of Professional Organizers, and currently serves on the board of the Nashville chapter. You can learn more about Sara and her company, SkillSet Organizing and connect with her on Twitter and Facebook.

 

Comments

  1. Anne Hafkesbring says:

    I am a mother of 4- I am 54 years old and my last child was born at 24 weeks and weighed in at 1lb 8oz- today she is a healthy 17 year old and a senior in high school. It has been an amazing journey and a scary one. When we first took her home until now there is always that little voice that is in your head- “is she going to be okay?”- but she is smart, creative, beautiful, and secure in who she is. We know her road ahead will be a good one.

    • Sara Skillen says:

      I know what you mean – I hear that little voice too, especially whenever our daughter tries something brand new. I’m glad to hear that your daughter is doing so well.

  2. I did a great job of keeping the paperwork organized while my 23 weeker was in the NICU and for the first few months after he came home. Now, for some reason, I’ve completely stopped organizing! (I think the main reason is because I hate paperwork!!) My son is 16 months old now and keeps me on my toes! It’s even more important that I carve out some dedicated time to manage all the paperwork. I like the idea of the bankers box – simple, easy, and manageable. I’ll give it a shot!

    • Sara Skillen says:

      I think that’s normal for many parents, Andrea. Sometimes when we are experiencing the overwhelming stress of having a child in the hospital we may work on things diligently so that we can feel like we are doing something that helps. Later, when the situation settles, there’s sort of a letdown (relief?) and regular tasks start to slide. I believe simple is always good, particularly when you are super busy – good luck with the box!

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