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Appendix D - A Personal Portable Health Record
J. Ben Davoren, MD, PhD
The idea of a personal, portable health record has been a goal for years.
However, the sheer volume of information in today's detailed medical records, especially one of a cancer survivor, has made the idea of a simple health card obsolete. Enter the World Wide Web. Web technology has created the best place to store personal information: on the internet. The ability to safely and securely access the internet from almost anywhere in the world ensures that the information cannot be lost or stolen along with your wallet. Further, new information can theoretically be posted at any time from anywhere so that one's health record can be as current as one's bank or credit card balance. The only thing that needs to be portable is the username and password information to access the account safely.
Unfortunately, in 2007, more than three-quarters of physician groups in the US still use paper-based records to document and coordinate care. The good news is that there are multiple national and regional projects aiming to get medical care online instead. Such seemingly irrelevant web phenomena such as myspace.com or facebook.com have created examples where trust relationships can be explicitly created with minimal effort.
While waiting for the web to mature, even if your health plan does not yet have an online personal health record website, there are a number of free or low-cost websites that facilitate the creation of a personal health record online, and these can be used to create the basics of your own cancer survivorship plan. For now, the work of posting that information is all by the patient - you are, after all, the real hub of the plan. Encourage your providers of healthcare to give you copies of your information (you are always entitled to it, but sometimes there are hoops to jump through), including CT scans and MRIs on a DVD or a USB flash/memory stick so that you can facilitate shared decision-making.
Other strategies can keep your information organized and accessible while medicine catches up on the Internet. Paper backup copies of critical information should be kept and can be inexpensively scanned into a personal computer and also stored on USB Flash Drives, DVDs (CDs are not stable) or other portable media in a separate location away from home. One of the lessons of the Hurricane Katrina experience was that paper medical records were extremely vulnerable in a catastrophe. Create a simple spreadsheet or word processing document that you can update on a home computer, and then create a free internet mail account, such as at google.com, yahoo.com, or another large, secure site. You can store your spreadsheet or document by starting an e-mail message to yourself, but instead of sending it, keep it as a draft message. That way, the content doesn't actually traverse the Internet where prying eyes might find it, and it's in a spot you can always access from anywhere there is an internet connection.
The future of personal health information storage on the Internet is approaching, but starting your own collection now can help you and your future healthcare providers plan the best care for you and other cancer survivors.
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