Personal health data has many unique issues, especially in the privacy area. Gordon Bell leads a research project at Microsoft Research, My Life Bits, which is aimed at capturing everything in a person’s life. According to the project website, Bell has collected “a lifetime’s worth of articles, books, cards, CDs, letters, memos, papers, photos, pictures, presentations, home movies, videotaped lectures, and voice recordings and stored them digitally. He has become virtually paperless and is now beginning to collect phone calls, IM transcripts, television, and radio. ” The entire collection comprises 200,000 items and 100 gigabytes of storage. An article in the March 2007 issue of Scientific American describes some of his work.
At the PDA Conference, he said that with the digitization, capture, and storage of all personal information, we are now realizing Vannevar Bush’s famous Memex vision, and he suggested that his work would find practical applications in collecting personal medical archives. He said that the SenseCam (see the earlier presentation by Cathal Gurrin) is a killer application for recording health information. One of the most important issues is privacy, and doing nothing about it is fine according to Bell. He also thinks that no single vendor will ever be able to solve all of the needs in health archiving. Bell has scanned his entire health history (even back to a letter recording a 1942 visit to the Mayo Clinic!). The archive has 400 files and 1 gB of images. He regrets that he ever threw anything away!
Bringing personal health archiving to the masses
MedHelp claims to be the largest online health community, with 12 million unique visitors a month and is growing at a rate of 40,000 new users a month. It has over 300 forums, partnerships with leading medical institutions, and over 200 experts who respond to users’ questions. Khaled Hassounah, MedHelp’s CTO, explained the difference between electronic medical records (EMRs) and personal health records (PHRs). An EMR is a digital record of your interactions with a healthcare provider. It is stored by the provider, and access to it is regulated by law. In contrast, a PHR is created and maintained by the patient, who controls access to it.
MedHelp provides tools for tracking and sharing one’s health data. About 500,000 people have been using the system to track themselves over the past 2 years. When MedHelp was first developed as a purely archival system, usage was low because people are interested in managing their health, not an archive, which was seen as a by-product. Sharing was not an issue; privacy was seen as selective–an option, not a restriction, and not as important as financial data. Once capabilities to track actual medical data were added and, importantly, play it back, usage increased dramatically. 85% of the trackers that have been created are public; on the average, each user has 2.3 trackers. Mobile tracker usage is exploding.
Many different variables can now be tracked on the system; for example here is one person’s water consumption tracked over the past 2 months.
Here are some of the lessons learned as a result of this experience.
Electronic Medical Records (EMRs)
Linda Branagan, Director, Telemedicing Products, Medweb, expanded on the discussion of EMRs and PHRs. She noted that there are 3 types of PHRs:
- Type 1 PHRs are patient owned and maintained. They are a digital record of all one’s interactions with a healthcare provider and may be provided to the patient by the provider or a third party. They are not covered by HIPAA privacy laws. Both Google and Microsoft have developed products for maintaining these types of PHRs.
- Type 2 PHRs are “tethered” to an EMR system. They provide data on appointments, lab results (especially if they are normal), prescriptions, etc. and are generally stored and maintained by healthcare providers.
- Type 3 PHRs are a self-created data store like MedHelp.
PHRs have not been universally embraced by healthcare providers because providers do not trust them and also because of a fear of liability issues (the data could be used by lawyers in litigation, for example). On a positive note, however, some providers are making use of PHRs because they can prevent duplicate tests, and they are useful in coordinating care in complex cases.
The amount of personal health information in digital form continues to increase. The decision whether to make it public is a personal one. Things to consider are the risk of disclosure vs. help from family and friends and the usefulness it would provide to healthcare providers.
Columnist, Information Today and Conference Circuit Blog Editor