Saturday, March 14, 2009

Your Medical Record

Image found here

My fellow Pacific Northwesterner, Maria, over at My Life Works Today, threw out an incredibly useful challenge to those dealing with a complex medical condition. She asked - How do people with chronic illnesses organize their personal life-saving information? Tell me how you have done it. You can read her thoughtful post here.

Maria, Maria, Maria. You thought I had anything organized? Silly girl.

However, as someone who has worked for many years inside the health care system dealing with chronically ill clients, I can make a reasonable guess about what sorts of information I
should have available to my family and health care providers. (Julia slaps on her ancient nursing cap and attempts to look serious). To begin, I have to say, Maria has already compiled an impressive list:
       "An Emergency Health Information card to carry with me

A Health Team Roster (Contact List) to share with family and friends including roles

A Medical/Health Reference binder for medications, dosages, allergies, and specific illness-related topics (such as sun and fluorescent lighting info for flare management, minimizing dampness or cold temperatures to minimize raynaud’s, tracking symptoms and diet) to bring to my appointments

A Self-care wish list (things that help me feel better, laugh or generally make me happy if I can’t communicate - either because of health or if I’m just not up to relying on others’ help )"

Other items that may deserve inclusion in the above list might include faith based restrictions on medical care, such as blood transfusions, and preferred hospitals and locations for emergency medical care.

A Family health history
may also be important. The US department of health and human services has an online tool which may be helpful in creating this important health history.

Maria provides excellent links to legal forms, such as DNR (do not resuscitate) orders, organ donation, and Advance Directives. Her links are specific to the state of Oregon, so be mindful that these types of issues are administered specifically by each country and state's laws. Check into your own state's regulations. 

It seems to me that how this important information is organized is less important than if it is organized. A simple notebook and folder labeled clearly and placed where family members can easily find it may be all one would need. 

Personally, I really like the ease of fill - in - the - blank type record keeping. The US Food and Drug Administration provides this easy to use medication information tool, found here, which can be printed from your computer. Free personal health record forms from the American Health Information Management Association can be found here

For those seeking a more techno-savvy method of record keeping, there are other options, some of which store your personal medical record online. A word of caution here - this very private information when located online may be made public without your consent. Proceed carefully when sharing your data on unsecured sites. You can read more about laws governing the dissemination of private medical records information, or HIPAA laws, here

Knowledge of your medical conditions is essential. The simple act of collecting and documenting this information could be a beneficial learning experience, which also may help patients develop a stronger sense of responsibility for one's own health care. Read more about empowered patients in health care on But I digress, that is a much longer discussion for another day. 

I think that this task deserves to be moved to the top of my Julia Do list. Thanks for the idea, Maria.

No comments: