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Your thought on developing another cancer web site?
Hello,
I am contemplating developing yet another web site for breast cancer patients. There is no cost for patients, care givers, and attending physicians to use it. I would really appreciate your thought on the following two questions:
A) How helpful would something like this is to you? none, moderate, really need it.
B) Your wish list to the functions of the site.
Minimal functionality (available on first launch):
1) A single place holding treatment history (including scan images) and automatically search for clinical trials periodically. I got tired of entering the same information about my wife to multiple search engines of multiple sites.
2) Per patient request, produces clear and concise summary of patient profile, treatment history: This is for 2nd opinion purpose. Enable "remote" physician to look at a patient complete record before hand. Perhaps we can find away to entice/force them to look at it before hand? A few times we flew thousand of miles to find out that they only look at the record 5 minutes before seeing us.
3) A single place containing the list of current treatments. This list of course is dynamically updated.
4) Not sure if physician would use this but: A single place where patient and physicians (particularly remote) can discuss keep track of conversation regarding the illness.
Much harder but not undoable functionality:
5) Based on current research, patient tumour profiles, treatment history: suggests what treatment(s) to use next. Obviously this would only be a starting discussion point for your next visit with the oncologist.
Hope and Dream but there's a hint of how to do it functionality:
6) By analyzing lots of tumour profiles, patient profiles, treatment history, respond duration, current research etc, "something new" will be discovered, sort of evidence based medicine on the fly. Tie this back to 3 above.
7) Construct a dynamic "hope curve": a chart showing the rate of drug discovery AND its life-extending effectiveness.
Addressing security concern:
8) A number can be given in place of your name. Your security number, credit card, full addresses, birth date, exact address, etc are not needed. The database would need your rough (20ish, 30 ish, 40 ish, etc) age, sex, race, state. Of course it needs detail info on your tumour profile, treatment history, progress.
9) The database holding these information are dynamically encrypted such that even if someone can steal the database, it is not readable without computing resource of the CIA, NSA, etc.
Thank you for your time.
Nguyen
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Linda's treatment history:
01/2005 - current: Herceptin and Femara
07/2004: It returned again via several small nodules in the lung
10/2002: NED (via CT and CA27.29)!
10/2001 - 01/2005: Femara, (Fosamax)
12/2000 - 10/2001: Herceptin and Navelbine
12/2000: lung metastatic was diagnosed (a few small nodules)
02/1998 - 12/2000: Daily Tamoxifen
05/1997 - 04/1998: Modified Radical Mastectomy, many many cycles of chemo regiments (CAF,Taxol, Carpoplatin, Thiotepa, Navelbine, Taxotere), including HDC, and radiation
05/1997: First diagnosed with BC stage 3A (7cm 9/13 nodes) , ER+, PR+, HER2 +, poorly differetiated, nuclear grade 3.<!-- / message -->
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