Is the system to be operated by national authorities, the local or provincial authorities, the academic sector, or some combination of them? Will it be based on legally mandated reporting, will it be voluntary, or will it be a hybrid? Which organizations will be the reporting entities? How will issues of patient confidentiality be addressed?
We would suggest that the surveillance system will be discussed, established, and operated by all stakeholders, i.e., a combination of national authorities, the local authorities, academic sector, and nongovernmental organizations (and perhaps the industries). We would also suggest that disease surveillance systems rely on mandatory reporting of cases by physicians and laboratories. Most diseases will be reported to the local health department from where they are reported to the national surveillance institute.
We believe that the protection of patient privacy (recognition of a person’s right not to share information about himself or herself ), data confidentiality (assurance of authorized data sharing), and system security (assurance of authorized system access) are essential to maintaining the credibility of the surveillance system in Iran. This protection must ensure that data in a surveillance system regarding a person’s health status are shared only with authorized persons. Physical, administrative, operational, and
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Appendix B
Dialogue of U.S. and Iranian Experts on
Food-borne Diseases (2006)
Example of genuine Collaboration
(Comments of u.S. expert indicated in italics)
• I
s the system to be operated by national authorities, the local or pro
incial authorities, the academic sector, or some combination of them?
Will it be based on legally mandated reporting, will it be oluntary, or
will it be a hybrid? Which organizations will be the reporting entities?
How will issues of patient confidentiality be addressed?
We would suggest that the surveillance system will be discussed, estab-
lished, and operated by all stakeholders, i.e., a combination of national
authorities, the local authorities, academic sector, and nongovernmental
organizations (and perhaps the industries). We would also suggest that disease
surveillance systems rely on mandatory reporting of cases by physicians and
laboratories. Most diseases will be reported to the local health department
from where they are reported to the national surveillance institute.
We believe that the protection of patient privacy (recognition of a
person’s right not to share information about himself or herself ), data
confidentiality (assurance of authorized data sharing), and system security
(assurance of authorized system access) are essential to maintaining the cred-
ibility of the surveillance system in Iran. This protection must ensure that
data in a surveillance system regarding a person’s health status are shared
only with authorized persons. Physical, administrative, operational, and
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APPENDIX B
computer safeguards for securing the system and protecting its data must
allow authorized access while denying access by unauthorized users.
• W
hich diseases will be monitored?
The epidemiological pattern in Iran is undergoing a transition from
infectious diseases to chronic diseases. Iran faces an increasing burden of
chronic diseases mainly due to changing lifestyle behaviors. Thus, chronic
diseases are now the greatest health problems in Iran. Indeed, there is a sense
of urgency in the need to enhance the capacity for surveillance of chronic
diseases (or non-communicable diseases) in Iran. However we think that
a surveillance system can and should monitor communicable and non-
communicable diseases, pollution, and road traffic accidents. Road accident
is emerging as one of the major killers.
• T
o what extent will sureillance for foodborne/enteric diseases be inte
grated with other, preexisting sureillance programs in Iran (e.g., those
for cholera, TB, malaria, HIV/AIDS)? Is it a matter of "adding a few
more diseases to the list" or creating a new, more ertically integrated
system?
We are more interested in an integrated system in order to avoid the
duplication of effort and lack of standardization that can arise from inde-
pendent systems.
• W
hat laboratory resources will be aailable, how will isolates be col
lected and transported, what techniques will be employed to character
ize them (e.g., salmonella serotyping, molecular subtyping, antibiotic
susceptibility, sequencing), and how quickly will these laboratory data
be aailable to epidemiologists?
Facilities for microbial culture, characterization, and genotyping by
direct automated sequencing or pyro-sequencing, or antibiotic susceptibility
testing (by either traditional disc-based methods or newer genotype-based
methods and molecular sub-typing) are available.
If the techniques could be used efficiently, results could be available to
epidemiologists within a few hours to days.
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APPENDIX B
• W
ill the system be sufficiently flexible to eentually encompass a broader
set of diseases, such as hepatitis A and B?
Since a flexible public health surveillance system can adapt to chang-
ing information needs or operating conditions with little additional time,
personnel, or allocated funds and it can also accommodate, for example,
new health-related events (or changes in case definitions or technology), we
prefer to have a system flexible to accommodate other health-related events,
such as cancer or hepatitis.
• W
ill the collection of data be sufficiently timely to permit effectie
public health action?
Yes, speed between steps in a public health surveillance system is very
important for us for control of health-related events, including immediate
control efforts, prevention of continued exposure, and program planning.
• H
ow will outbreaks be recognized?
Among all surveillance approaches to early detection, whether through
traditional disease reporting, specialized analytic routines for aberration
detection, or surveillance using early indicators of disease outbreaks (such as
syndromic surveillance), we prefer the last one (due to its ability for detecting
outbreaks of diseases earlier and more completely than might otherwise be
possible with traditional public health methods).
• H
ow will recognized outbreaks be inestigated?
There are essential steps in any epidemiological investigation regardless
of how the outbreak is detected. With the use of syndromic surveillance,
some steps might receive greater emphasis than others. Here are the six basic
steps recommended in the United States:
l) confirm existence of outbreak,
2) verify the diagnosis,
3) estimate the number of cases,
4) orient the data to person, place, and time,
5) develop and evaluate hypotheses, and
6) institute control measures and communicate findings.
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