Beginning in January 2002 through the present I have been working on a home-based system for improving communication between individuals and their health-care providers. Several life-shattering incidents with loved-ones and health emergencies motivates my interest. I've seen 1st hand how dated, incomplete, missing, and downright wrong medical information can be deadly.
How can families reduce medical misjudgements and potentially lethal mistakes? This question led me to a second one: How can individuals and their family caregivers create, maintain, and control a permanent archive of personal health information?
In my view, such a system of health information should allow use of the internet for secure communication and research, but that's it! Family health information is the most sensitive and personal information there is. It belongs to you -- this is guaranteed by law (HIPAA) and common-sense practise. It doesn't belong on a "website"; vendor assurances and promises of "free" services notwithstanding. To emphasize the personal and time-critical data in such a system, and the fact that the vast majority of the raw data in such a system is neither "electronic" nor stictly speaking "medical", I use the term Personal Health Monitor .
Essentially a Personal Health Monitor (PHM) is a visual-oriented computer database and related software that with secure archival storage of raw data. The Figure is from From An Introduction to Personal Health Records, by Endsley, Kibbe, Linares, and Colorafi. The basic idea is to secure, organize, and display of all types of medical, health, and fitness information: including treatment histories, laboratory reports, physicians’ orders, medications, and images.
A complete PHM would contain information from multiple organizations, including hospitals, and physicians’ offices, and clinics, but would also include many standardized and automated mechanisms for indexing, visualizing, and summarize all this voluminous data. In addition, the PHM should contain information generated by the patient herself, including reports and checklists of symptoms, personal lifestyle changes, risk assessments, medication compliance charts, legal documents, notes regarding patient-clinician conferences, and health-related educational information.
A challenge? Yes! But can it can be done with the help of information technology. If you doubt that it can, just consider the commercial success of the iPod and iPhone with users easily managing "personal information" that is, from a strictly technical point of view, astonishingly complex and varied.
The next month's blog will explore the reasons we all need a PHM and how it can be implemented on both home PC's and personal cell phones.
References:
An Introduction to Personal Health Records, by Endsley, Kibbe, Linares, and Colorafi. Available at: http://www.aafp.org/fpm/20060500/57anin.html.
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