The healthcare binder: tips for being an organized patient or caregiver

October 6th, 2014 § 21 comments

IMG_0515One of the most common questions I get asked by email is, “Someone I know has been diagnosed with cancer. What can I do?” Today I offer one suggestion. I believe this would make a practical gift for someone who has just been diagnosed and it is a necessity if you are the patient or a caregiver.

Being organized is one of the best ways to help yourself once you’ve been diagnosed. When you first hear the words, “You have cancer” your head starts to swim. Everything gets foggy, you have to keep convincing yourself it’s true.

But almost immediately decisions need to be made — decisions about doctors, treatments, and surgeries. Often these choices must be made under time constraints. You may be seeing many different doctors for consultations. Medical oncologists, surgical oncologists, radiation oncologists, recontructive surgeons, internists— there are many different voices that you may hear, and they may be conflicting. It’s hard to keep it all straight in the midst of the emotional news. Not only are you likely to be scared, but also you are suddenly thrust into a world with a whole new vocabulary. By the time you are done with it, you will feel you have mastered a second language.

You can help your care and treatment by being organized. You can also have the psychological bonus of feeling that one part of your care is within your control. Especially if you are juggling different specialists and different medical facilities, you must remember that the common factor in all of this is you. It’s your health. It’s your life. I believe it’s important to travel with a binder of information about your medical history and treatment, as well as notes and questions.

This binder will mean that all of your information about your cancer will be in one place. This will be your resource guide. I cannot tell you how many times physicians have asked about my binder and when I was able to instantly produce test results, pathology reports, or other information they needed, they said, “I wish every patient had one of those.”

I suggest the following:

A heavy 3-ring binder

I think a 1.5″ binder is a good size to start. This size will allow you to easily access reports and pages and have room for the calendar. It will look big at first but you won’t believe how quickly you will fill it up.

Colored tab dividers

I like these to be erasable. I think 8 is the minimum number you will need. If you have a lot of specialists you will need more. The categories you think you will need at the outset may change. It’s easy to erase and reorganize them. Put the categories you will be accessing the most in the front so you aren’t always having to flip to the back. Once the binder is full it will make a difference.

Some starting categories:

  • schedules (dates of appointments you have had, when the next ones are due, and how often you need certain tests done)
  • test results/pathology (it’s very important to keep copies of MRI, CT, and pathology reports so that you correctly tell other doctors what your diagnosis is. For example, new patients often confuse “grade” with “stage” of cancer)
  • insurance (keep copies of all correspondence, denial of claims, appeal letters, explanations of benefits)
  • articles and research (handouts, post-surgical information. Ask if there are any websites your doctor does approve of. My own oncologist said, “Do not read anything about cancer on the internet unless it comes from a source I’ve told you is okay. There’s a lot of misinformation out there.”) Keep your post-surgical instructions, any info given to you about aftercare.
  • radiation/chemo (keep records of exactly what you had done, number of sessions, dates, drug names, etc. I also asked how my dose was calculated so I knew exactly how much of each drug I received in total)
  • medications (drug names, dates you took them, dosage, side effects). I also keep a list of all of my current medications as a “note” in my iPhone. That way I can just copy it down and won’t forget anything on the list. You should always include any vitamins or supplements you take.
  • medical history (write out your own medical history and keep it handy so that when you fill out forms asking for the information you won’t forget anything. As part of it, include any relatives that had cancer. Write out what type it was, how old they were at death, and their cause of death. Also in this section include genetic test results, if relevant)

Loose leaf paper

Perfect for note-taking at appointments, jotting down questions you have for each doctor. You can file them in the appropriate category so when you arrive at a doctor your questions are all in one place.

Business card pages

These are one of my best ideas. At every doctor’s office, ask for a business card.Keep a card from every doctor you visit even if you ultimately decide not to return to them. If you have had any consultation or bloodwork there, you should have a card. That way, you will always have contact information when filling out forms at each doctor’s office. For hospitals, get cards from the radiology department and medical records department so if you need to contact them you will have it. Also, you want contact information for all pathology departments that have seen slides from any biopsy you have had. You may need to contact them to have your slides sent out for a second opinion.

This is also a good place to keep your appointment reminder cards.

CD holders

At CT, MRI or other imaging tests, ask them to burn a CD for your records. Hospitals are used to making copies for patients these days and often don’t charge for it. Keep one copy for yourself of each test that you do not give away. If you need a copy to bring to a physician, get an extra made, don’t give yours up. If you need to get it from medical records from the hospital, do that. You want to know you always have a copy of these images.

Keep a copy of most recent bloodwork (especially during chemo), operative notes from your surgeries (you usually have to ask for these), pathology reports, and radiology reports of interpretations of any test (MRI, CT, mammogram, etc.) you may have had. Pathology reports are vital.

Calendar

I suggest a 3-hole calendar to keep in your binder. This will serve not only to keep all of your appointments in one place but also allow you to put reminders of when you need to have follow-up visits. Sometimes doctor’s offices do not have their schedules set 3, 6, or 12 months in advance. You can put a reminder notice to yourself in the appropriate month to call ahead to check/schedule the appointment. Some people like me prefer to use their phones for this, including reminders.

Similarly you can document when you had certain tests (mammograms, bone density, bloodwork) so you will have the date available. I usually keep a piece of lined paper in the “scheduling” section of my binder that lists by month and year every test/appointment that is due and also every test I’ve had and when I had it.

Sticky note tabs

These can be used to easily identify important papers that you will refer to often, including diagnosis and pathology. These stick on the side of the page and can be removed easily. As your binder fills up, they can be very helpful to identify your most recent bloodwork, for example.

Plastic folder sleeves and sheet protectors

These are clear plastic sleeves that you access from the top. They can be useful for storing prescriptions or small notes that your doctor may give you. The sleeves make them easy to see/find and you won’t lose the small slips of paper. Also a good place to store any lab orders that might be given to you ahead of time.

 

The above suggestions are a good working start to being organized during your cancer treatment. If you want to do something for a friend who is newly diagnosed, go out and buy the supplies, organize the binder and give it to your friend. He or she will most likely appreciate being given a ready-made tool to use in the difficult days ahead.

I also believe a modified version is equally useful for diagnoses other than cancer. When our youngest son was born with defects in his spine and hands it took many specialists and lots of tests to get a correct diagnosis. Having all of his tests and papers in a binder like this was instrumental in keeping his care coordinated. In fact, at his first surgery at The Children’s Hospital of Pennsylvania they gave us a binder to assist in this process. I know some hospitals do this for newly diagnosed patients already.

Maybe my tips will help you or a friend know how to better use the one you already have. You may not need all of these elements depending on the complexity of your case, but I hope you will find some of these suggestions useful.

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§ 21 Responses to The healthcare binder: tips for being an organized patient or caregiver"

  • Helen says:

    Lisa! This is an exceptional idea. I sure wish I had something like that set up for me when I was first diagnosed. I will definitely keep this in mind and be ready to give it to anyone in my life who unfortunately finds themselves in need of it. Thank you so much for sharing this great idea!!! Helen

  • Varun says:

    Thanks.this note is very helpful…

  • Tracy says:

    Agreed! I bought a large expandable folder instead of a binder though. Just tons of big pockets that I can throw things in. I also separated tabs by month for quick filing of things that I wasn’t organized enough to have a place for.
    It at least adds a little bit of control.

  • meri says:

    This is GREAT. Thank you so much for your helpfulness…as is your custom. xoxo

  • Donna says:

    The binder is an excellent idea for both the patient and the caregiver. During the time I cared for my mother, I also kept emergency and medical contact numbers within the binder. I also kept notes of my mom’s mental, emotional.and physical status also. This was helpful in keeping my mom’s care team informed and up to date. These binders take some of the stress out of remembering appointments, treatments, and medications. Thanks for bringing this up!! 🙂

  • Amy says:

    Lisa,
    I am a nurse and I have been using this binder for the families that I work with. It helps keep all the info for children with special health care needs in one place. I have been told by doctors that see these kiddos how wonderful it is. We now do it within my department!
    In June, my father was diagnosed with Stage 3 Melanoma. I do not live close to my parents and was frustrated at not being able to do anything…and then I remembered the binder. I put one together for my dad and popped it in the mail. My mother LOVED it and so did all of the doctors they meet with. When I went out for his surgery, his surgeon thanked the binder and wished all his patients had one!

  • Rebecca says:

    This shouldn’t even be an issue for people. I am sad that it is.- “insurance (keep copies of all correspondence, denial of claims, appeal letters, explanations of benefits)”

    If someone has been diagnosed with cancer or another serious illness there should be no denials or appeals. The insurance company should be doing what they can to make things on their end as seamless as possible.

  • Sally says:

    Having a notebook has really saved me! However, I did not use a CD holder and will be quickly adding it so mine will stop sliding all over the place.
    I travel back and forth to Johns Hopkins and often have to bring results from home and vice versa. It has been the best way to make me feel in control of my information.

  • Elizabeth says:

    What a great idea. Wish I had all my info in one place these last years.

  • Michele says:

    What a great person you are. I know you’re going through a lot, but still you make the time to think about others. You are one class act, Lisa!

  • Elen Frketic says:

    Been reading your blog for a while, Lisa. You are one tough cookie! I had a simpler version of this to keep track of all my test results, etc. When I was first diagnosed in 1990, I carried around a legal pad all the time and wrote questions whenever I thought of anything. It was a lifesaver. Thanks to chemo, I STILL have to write everything down or else I forget it…..

  • Mara Smith says:

    Dear Lisa,
    Your generosity is spirit is immeasurable. I had been reading your blog for several months when my best friends husband was diagnosed with Glioblastoma Multiforme. So many of your words stayed with me as I tried to navigate through the unknown and tried to be helpful. This binder was an incredible first step – for all of us. It was very helpful for her – necessary, useful and she said she though of us each time she opened it. It is a gift of logistics and love. Thank you so much for this and all of your insights. With Gratitude.

  • darcy thiel says:

    I absolutely love this blog; i have bookmarks i distribute for my book and one of the points listed is about having a notebook; i advocate for everyone to have one to take to every medical appointment, not just for terminal illness situations… excellent, excellent advice!!

  • Kate Baliotti says:

    Lisa, this is such an incredibly smart, concrete suggestion to help a friend/family member. Thank you for sharing this idea in detail.

  • Alyce schnelker says:

    Great idea! I survived stage 3 Colon cancer 18 years ago (I was 47). I worked through my year of chemo therapy and I really wasn’t very organized. I had no time or energy. If I had done a binder, I would have used it. Now 18 years later I have been diagnosed with breast cancer, early stage 1 which is good. However, I was asked questions about dates, doctors names, type of treatments in conjunction with my colon cancer, which I could not answer. It would have been so easy if I had done a binder 18 years ago. So I will start one today because who knows? I may need it in the future. Keep up the good fight. Every day’s a gift.

  • Debra says:

    Thank you Lisa. I am going to use this for a family member. I saw the article in the Wall Street Journal — Mortality as Muse. I agree that you are brave. Anyway, to your critics, no one is forcing them to follow you on twitter or read your blog posts. Thinking of you!

  • Lisa Lurie says:

    Lisa,
    Great suggestions. Staying organized was challenging for me during my treatment for breast cancer. I just posted your blog on my Cancer Be Glammed Facebook page to share. I appreciate your advise and insights on life. You are inspiring.

  • What a great idea/tool!

    My mother-in-law was diagnosed with cancer and I have been helping her. I believe she finds it overwhelming and difficult to understand what the doctors say, and it can be so confusing all the different appointments and tests. I think this will help us so much, help her feel more in control.

    Thanks for sharing.

  • Bev Nemeth says:

    Hi Lisa, I did this during my illness and found it quite a good thing. When I was helping Marylee, it was one of the first things I had her do… I hope your post encourages more people to get organized….there is just too much info coming at you .

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