Posted 11/15/2015 5:23 PM (GMT 0)
It's legit. It's a project from lymedisease.org but it is run and controled by patients. Doctors have to submit rquests for data with specifics on how they are going to use it. If the request is approved, the doctor is only given that data. The data does not have any identifying information.
Having said that, when i started entering my data I ran into problems. Either the questionnaire was not designed properly or whoever created the website didn't implement it properly (and didnt test it.
I was an engineer for 20 years before I stopped working, but my job for more than 16 years was testing software/hardware systems. Allof those years included lots of user interface. I was the top person and spent some of my time teaching. So I am very sensitive to flaws in anything that uses software.
So here was the problem. I have been diagnosed but have not started treatment. Entering my data led me to a page that asked me how well I was "since starting antibiotics" even though i had stated on the previous page that i was not taking antibiotics. I could not answer the required questions since they were all related to antibiotics. So I logged out then back in to see what would happen. It brought me to the page asking me why i was not on antibotics and when i tried to go to the next page it did not recognize that i had checked one of the boxes (other) even though it had recogized the checked box before i logged out.
For me that made me question the validity of the data being entered and led to questioning how they would ensure the data linked with my name got corrected.
So I reported it to them and got an email back. The person told me the people who could look into it were not iin the office that day, but she would escalate it. She seemed to take my email seriously and said that they value my feedback (and mt expertise in testing products).
I dont know if the website is working properly for all data (abx, no abx, combo, improvement on abx, no improvement etc). It may be that if you answered yes to taking abx, then the page sequence is correct and therefore the data stored is correct.
My judgement tells me that the questionnaire process is not yet ready for prime time. My judgement also tells me that if there is one error like this then there will be more. It may just be the non standard answers like diagnosed but not yet treating were not given as much attention as the standard answers.
I'll post back on this thread after I find out how they are going to handle this.