THE TOP TEN ITEMS TO CONSIDER WHEN CREATING A PERSONAL HEALTH RECORD FOR A LOVED ONE
BY JACKIE SCHWABE
Electronic personal health records and workbooks often marketed to family caregivers boast that they contain everything you need know to take care of your loved one. However, we all know that our loved one is just a little different from everyone else. So, what do you do?
This article will provide you with the top 10 categories of items to consider when creating a paper based personal health record. Why paper? Consider trying to look up that one detail you wanted to ask the doctor when he pops in for less than three minutes and you can't find the test you want to show him, so he can explain the thing you just forgot to ask. Sound fun? No, I didn't think so. This article can help you shed feeling underprepared, overwhelmed, guilty, powerless, or scared by empowering you with the information you need to know to create a personal health record for someone you love. We will help you identify the key details to store in a personal health record. We hope to help you feel: • empowered in moments of high stress or unexpected emergencies • confident when attending doctor appointments • prepared in highly stressful medical emergencies • confident those you care for will not be harmed because you just didn't know • empowered to ask lifesaving questions. Are you ready?
COUNT TO TEN: Empower yourself with the information you need to know to create a personal health record for someone you love, and never again feel underprepared, overwhelmed, guilty, powerless, or scared.
1. BASIC PROFILE
The basic profile will be the first page in the personal health record (PHR). The profile page will most likely be the very first page you turn to; so, having the most important details available in a moment's notice is the intent of the page. Some items to consider adding are: name of loved one, date of birth, place of birth, nickname, gender, address, phone(s), email, and a recent photo. You can even add a little note that indicates if found, please return to (insert address), postage paid. You might ask why you would want to write down all of this detail. Well, what if you are not there? Keeping this information with the loved one and ensuring all other interested parties know where to locate the notebook or binder is a great way to make sure your loved one gets the care they deserve.
2. EMERGENCY CONTACTS
This is the second most important category to include in the PHR. Write the name, phone, and email of the top two or three emergency contacts. Consider adding the primary care physician's name, address, phone, and fax. If your loved one is an adult, you might have to consider indicating their DNR and organ donation wishes. In addition, you can indicate the location of important documents like a will or trust and the name and contact details of the medical power of attorney and the financial power of attorney. It is usually a good idea to put an "other category" at the bottom of any of these documents in case something comes up over the course of care.
3. MEDICATION LIST
Medications can change very frequently for some of our loved ones. While we do our best to keep on top of it - having a single list as the master list can be very helpful. It is nice to have the pharmacy name, address, and phone number on the top of the medication list. For each medication, consider having the RX#, the name, dosage, frequency, time of day, and the last refill date. It is often helpful to also include any special details, like "don't take this one with food," and "only take this one in an emergency." I have seen clever parents take photos of the medication bottles and the actual medication contained in the bottle for a quick and easy solution. You can also document the copayment amount, so you don't have to look it up when you are in a hurry. Some parents, especially those that have grandparents or other loved ones helping, will even add a pencil case that you can include in the binder. The pencil case will contain the HSA card or cash for the copayment. The receipts can be put here as well for reconciliation later. Lastly it can be helpful to indicate the types of supplements taken at the same level of detail as the medications. Often, parents with children that have rare conditions or conditions like autism will have a number of supplements to assist naturally with things like digestive health. Supplements are often treated like medications by physicians - so having it documented is a great help. Often remembering supplements names and doses is much more difficult than medications.
4. DOCTOR CONTACT INFORMATION
It is helpful to have all the various doctors your loved one is seeing so you can easily provide that detail to their primary care physician, case manager, or other care provider when asked. Keeping the doctor name, address, phone, and fax easily accessible is handy when you are trying to provide a lot of detail to a new doctor or a new specialist. It is also helpful to document the last time you visited the doctor (or attach the visit summary), the reason for the visit, any notes you found important about the visit, test or procedures performed or scheduled and any action steps decided upon during the appointment. Some parents keep a business card sheet in a binder and just put the doctors, nurses, and other specialists' business cards right in the binder to eliminate the time it takes to write the details down. You can also grab a card for other doctors that work at the same location. In the event that your loved one's doctor is unavailable, you will have someone else you can ask to be scheduled with that is most likely in the same network.
5. TESTS AND PROCEDURES
This is one of the categories that is often overlooked and the one that could cost you money if you don't keep track. Keeping a log of the test type, the date, the name of the ordering physician, the address, phone, and fax information can be helpful. If you are still trying to find a diagnosis for your loved ones, you want to make sure tests are not ordered and reordered if they do not need to be repeated. Often doctors don't have time or take time to review your loved one's entire file. They recognize symptoms and recommend the usual tests for the issue. However, if you already had the test, you waste both time and money getting it done again - unless of course it is a comparative test. Other helpful information is the name and address of the facility the test was performed at and the results of the test. If you think about it, consider getting copies of all test results. If you have a copy, you don't have to wait the sometimes 30-day waiting period when another doctor requests to see them. You will have them on file and can give them a copy. If they are stored somewhere electronically, you can indicate the electronic storage location. Some parents have even kept a CD sleeve in their binder and stored large radiology related images on CDs that they carry with them.
6. INSURANCE INFORMATION
The first thing the hospital or doctor office usually asks us when we arrive, is for our insurance card. Once in a while we forget the card and they are not exactly happy about it. You can make a copy of the front and back of all of your cards, health insurance, dental insurance, vision insurance, medication coverage, and/or Medicare and Medicaid details to make it quick and easy. If you decide to just write out the details, include the insurance company name, policy holder name, group number, Rx Bin, plan code, copayment amount(s), Rx services phone number, nurse line phone number, regular copayment, and specialist copayment number. All will be helpful bits of information.
7. MEDICAL HISTORY OF YOUR LOVED ONE
Having the quick and dirty details on your loved one's medical history can be a big help, especially if you are trying to wrangle them and someone else might need to help provide information. Important details to consider documenting are their name, date of birth, gender, and blood type. Other items to consider entering here are if they use tobacco or alcohol and, if so, when was the last time and how much. Has your loved one traveled out of the US in the last five years? Have they ever been pregnant? What are their allergies, medications, supplements, surgeries, major injuries, and any other major items to consider? If you already created a medication list, you can avoid duplicating that information. This is one of those sections where it really shows that not all of our loved ones will have the same details tracked. I am pretty sure my seven-year-old does not need to have the tobacco, alcohol, or pregnancy question answered.
8. FAMILY MEDICAL HISTORY
While knowing the details of your loved one is important, having details about their biological parents, siblings, and if possible, grandparents can be helpful when filling out the never-ending family medical history forms each time you visit the doctor. Include the condition and the date they were diagnosed if you know. Often you are asked to fill out a medical history form that includes a ton of checkboxes with various diagnoses on it. You can ask them for a copy of the form, fill it out, and keep it with you to make filling the forms out the next time quick and easy.
9. CALENDAR
While you will most likely have your appointments in your electronic calendar, it is nice to have a record of all the appointments that are related to the medical care of your loved one. If your loved one is a child, you might include information like their last IEP, speech screening, hearing follow up, and/or behavior evaluation. The calendar can also be used as an easy index of sorts to find a specific test that you knew was done but couldn't recall the date of the test. You can use the calendar to track other things as well. For example, if you want to ensure your loved one's vision is screened once a year, you can put an appointment in your calendar to schedule the next screening. Anything you might want others in your loved one's caregiving team to know you can enter and share in the calendar.
10. JOURNAL
Many caregivers and parents underestimate the impact longterm caregiving can have on their own health and well-being. Since you may be spending some time hanging out in waiting rooms, having a journal as part of your loved ones PHR can also help you keep track of how you are doing. You can track how you are feeling and/or what concerns you have that you want to discuss with the doctor for either your loved one or yourself. Other parents have used the journal to track behaviors they are trying to encourage or discourage with their loved one. For example, restroom activities might be tracked to help with potty training a child with development delays. While the PHR is really about keeping track of all the things you need to do for your loved one, consider that if you are not healthy, you cannot do your important work.
OTHER
While the top 10 listed are truly the most important items to address, there are some other supplemental materials some parents have found useful too. Keeping a copy of immunizations, for example, can be very useful for those caring for children. Other supplemental materials include keeping track of any second opinions, the physician, the reason for seeking it, questions, concerns, and what they recommended as actions.
WRAPPING IT UP
Hopefully you found value in learning the top 10 categories of items to consider when creating a personal health record. If you want to learn more, here is a course available free to EP Magazine readers: jackieschwabe.mykajabi.com/pl/18735
FREE TO BE : INDEPENDENT LIVING RESOURCES mindlightllc.com/resources - Tons of forms here jackieschwabe.mykajabi.com/pl/18735 - Free; Create a PHR Course ismp.org/resources - Medication Forms myphr.com - Sources for PHR's imindmap.com/how-to-mind-map - How to Mind Map thelazygeniuscollective.com/blog/how-to-bullet-journal - How to Dot Journal cdc.gov/ncbddd/actearly/pdf/checklists/all_checklists.pdf - Checklist for Kids cdc.gov/vaccines - Immunization Schedules comprehensiveprimarycare.com/how-often-should-adults-get-a-physical - For Adults
ABOUT THE AUTHOR: Jackie Schwabe is co-founder and CEO of Mindlight, LLC and Vice President of Leadership Research at North of Center. She is a certified Caregiving Presenter, Certified Caregiving Consultant, and Certified Caregiving Educator. She received her BA in Management Computer Systems from the University of Wisconsin – Whitewater and her MBA in Technology Project Management from the University of Phoenix. She has been active in the area of healthcare integration, healthcare IT, telemedicine, product development, and product management for over 20 years. She has been a cross-sector, cross-discipline leadership practitioner her entire career. Her mission, to provide the tools, opportunities, and connections people need to be their best self.