Organizing a study of over 10,000
people, undertaken over 10 years in 39 communities that span
six time-zones, that involved a combination of interviews,
cognitive testing, clinical examinations in two languages,
and that also included blood collection, laboratory testing
and access to public records, requires (at least) careful
The CSHA established three levels of management to organize
how decisions were to be made, by whom, and how responsibility
for possible errors would be shared. First, a routine operations
group oversaw implementation of the protocol and monitored
progress in data collection and the budget. Second, a steering
committee included the operations group plus a representative
from each region to ensure their input into the study design,
implementation and eventual reporting of results. Finally,
an external advisory committee offered a valuable perspective
from people not directly involved in the study.
Staff Selection and Training:
Personnel selection was left to each centre director, although
job descriptions were drafted by the coordinating centre.
The size of the study (over 100 interviewers) made it infeasible
to train the staff in one session. Hence we first trained
the 18 centre coordinators, and then trained them to train
their interviewers. This strategy reduced travel costs and
gave manageable numbers in each training session; it allowed
subsequent training to occur simultaneously in each study
Training was made as practical and
problem-oriented as possible. Training manuals and videos
suggested answers to commonly asked questions and illustrated
interviews properly carried out, followed by interviews containing
errors that trainees were to identify and correct.
Communication channels varied according to the number of centres
involved, the purpose of the communication and the phase of
the study. Early on, information flowed mainly from the coordinating
centre to field centres; this was typically followed by two-way
discussions that served to support the centres and to find
the best way to adapt the protocol to local circumstances.
Later, information on progress and data flowed back from the
field centres to the coordinating centre. Our choice of communication
channels evolved considerably over the course of the study,
as technology advanced.
A formal communication plan was
developed to introduce the study. Brochures were used to explain
the study to authorities in each sampling area, such as the
police, health and social services agencies, the local Alzheimer
societies, and the local medical associations. Letters of
endorsement were also sought from these groups, and used in
explaining the legitimacy of the study to potential participants.
We developed a computer monitoring system with a component
for the coordinating centre and modules for each field centre.
The field centre modules stored identifying data on the people
in the sample and kept track of each persons progress
through the study. From this the modules generated routine
reports on recruitment and follow-up rates which were sent
to the coordinating centre. The field centre modules also
produced interview lists, sorted geographically to assist
in allocating interviews to each interviewer, and form letters
for contacting the study participants.
The coordinating centre module merged
the routine reports from the field centre modules to generate
status reports on the progress of the study. The system also
linked these reports to the computer files as data were entered
to permit confirmation that the data were complete on each
The challenge of coordinating publications among over 70 study
investigators was addressed by agreeing to publish the core
results of the study (7 articles) jointly under the authorship
of The Canadian Study of Health and Aging Working Group.
In addition, the coordinating centre kept a master list of
proposed topics for publication by the study investigators.
The list was periodically updated, and progress with the publications
recorded on the list. The goal was to encourage publication
while ensuring that overlapping reports would not simultaneously
be prepared by different study investigators. Where apparently
similar topics were suggested independently, we put the proposed
authors in touch with each other to reach agreement over whether
to collaborate or to redefine the topics. This simple approach
proved successful and we have enjoyed considerable productivity
with minimal dissent over authorship.