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Introduction:
This is an experimental project to
evaluate the utility of making anonymous single-person
medical databases available for analysis by clinical
researchers. Most clinical research consists of
studies in which a set of patients with a particular
diagnosis have a set of clinical measurements obtained at
specified intervals; these studies may be to identify
features of diagnostic utility, to determine improvement or
deterioration in the disease, to determine the value of a
pharmaceutical, surgical or other intervention, etc. Another
type of clinical research is when a patient (usually with an
unusual disease or an unusual presentation or response to
therapy) is published as a "case report" with substantial
clinical detail in the individual patient.
However, some people make a habit of
recording their symptoms, blood pressure, heart rate, lab
results, exercise workouts, etc. on a regular basis. These
data are often put into a spreadsheet for structured data
recording and statistical or graphical analysis.
This experimental project will assess the
willingness of people to provide their personal medical data
anonymously to a central research repository, allowing
clinical researchers to "mine" the data for clinical
insights that may help the diagnosis or medical care of
people with various medical conditions. A researcher, for
example, might assemble all the pain data posted by people
with chronic pain and use the data to test a particular
hypothesis (for example, women have more widespread pain
than men). Since the nature, timing, and duration of the
data recorded will vary from person to person, one aim of
the project will be to develop statistical methods that
allow valid pooling of data between different patients. The
primary initial aim of the project will be to develop new
clinical hypotheses for testing in more controlled clinical
settings. An initial one-person
database is provided below as a zipped Excel spreadsheet.
This was kindly provided by a 66-year old male physician who
has recorded his blood pressure, heart rate, heart rhythm,
body weight, lipid values, etc. over the years, beginning in
1960 and continuing through 2007. This physician suffers
from intermittent atrial fibrillation and analysis of the
heart rate data showed that the heart rhythm (normal or
atrial fibrillation) could be reliably identified merely by
recording the heart rate. This was repeatedly confirmed in
this physician by obtaining simultaneous heart auscultation
and ECG confirmation of the cardiac rhythm. However, it
would be valuable to obtain comparable heart rate data
anonymously posted on this website from other people who
suffer from atrial fibrillation to see if this is a
generally applicable finding.
People interested in posting their clinical data (of any
type and for any disease) on our website should send an
email to
clinicaltrials@masterdocs.com describing the data they
are willing to have posted on the website. We will vet the
responses for suitability followed by anonymous posting on
our website. |
