Managing Health Information: Yours/Theirs

                                                Updated March 2015

In the last month and a half, I have been in the position of advocate for a person with several chronic conditions, who developed a serious acute illness. As an advocate, I always provide the person written comments after we've been to medical appointments, visits to the hospital etc. In this situation, these notes became crucial in navigating a complex maze of hospitals, providers, specialists, visiting nurses and family. Two very important take home points from this experience are:

-use an advocate for medical appointments and hospitalizations
- keep a personal health notebook updated.

Keeping a personal health notebook is important for a variety of reasons:
• You are in charge of making health care decisions for yourself and those in your charge. This can be an overwhelming task as multiple health providers are involved and the variety of paper and information being generated from tests, treatments, to say nothing of health insurance, is mind-boggling. The more organized you can be, keeping information centralized, the easier some decisions will be to make.

• By keeping a health notebook, you can monitor trends, and share information with members of your health care team.

• For whatever reason, your chart may not be available during an office visit with your provider. Having your information in front of you helps reduce errors.

• While your chart may be available, the medical provider may not have had the time to read it, or know where to go for the information he or she is looking for at that moment. They may also have forgotten to write something down, which has a bearing on the immediate situation-e.g. why you discontinued a medication.

• If something happens, what medications and other necessary information, will be available for your family and health team. This is particularly important if several people are involved in someone’s care, such as adult children caring for an elderly parent. Having centralized health information, that all have access to, helps to simplify a complex situation.

In 2005 we developed a Personal Health Notebook at Chronic Conditions Information Network (CCIN). We found that caregiver’s tend to keep the notebooks for their charge, but rarely do it for themselves. It seems that Google Health, which had an excellent free on-line service, found the same thing and discontinued it.

On-line options include:

eCare Diary provides comprehensive information, tools and resources to help those seeking and providing long term care. A unique feature is our Care Diary, a set of online tools designed to make coordination of care and sharing of information easy amongst family members and other caregivers. eCare Diary also has a comprehensive database of nursing home and home care services, guides on long term care financing and information on important health care documents everyone should have. This website was developed by John Mills, who was the caregiver for his father, a person living with Parkinson’s Disease. Mills has spent more than 20 years working in health care.

Many hospitals, medical systems, insurance companies, specialty practices (such as an oncology center), condition specific organizations and even some community groups, are making health notebooks available on-line and/or in print. Check with your provider about what is available locally. If you prefer a print version, download a free copy from Johns Hopkins. Just be sure to keep the Notebook in a safe place and update it on a regular basis.

One area that I’ve found to be important, but isn’t always included in health notebooks, is day-to- day activities. In the most recent situation I’ve been dealing with, since so much of the care was based from the home, it was important to have daily notes about what was happening. Things that were coming up between office visits, which can be so easily overlooked at a medical appointment, were written down as they were occurring, so it was a lot easier to remember to talk about them.