737 lines
38 KiB
Plaintext
737 lines
38 KiB
Plaintext
|
Date: 29 Oct 89 20:27:52 GMT
|
||
|
Subject: Secure Distributed Databases for Epidemiological Control
|
||
|
|
||
|
English update of:
|
||
|
Stodolsky, D. S. (1989, August).
|
||
|
Brugerforvaltet datakommunikationssystem til bekaempelse af seksuelt
|
||
|
overfoerbare infektionssygdomme
|
||
|
[Secure Distributed Databases for Epidemiological Control].
|
||
|
Research proposal submitted to the AIDS-Fund Secretariat, Danish Health
|
||
|
Department.
|
||
|
(Available from the author at the Psychology Department, University of
|
||
|
Copenhagen )
|
||
|
|
||
|
==============================================================
|
||
|
|
||
|
Secure Distributed Databases for Epidemiological Control
|
||
|
|
||
|
Abstract
|
||
|
|
||
|
The project's objective is to develop a personal computer-based
|
||
|
system for control of infectious agents. The overall goal is a
|
||
|
better understanding of affects of enhanced social facilitation
|
||
|
and health education on disease transmission. A theory of real-
|
||
|
time epidemiological control, based on contact tracing, specifies
|
||
|
a cryptographicly-secure distributed-database system
|
||
|
providing situationally specific risk assessments that are based
|
||
|
upon personal histories.
|
||
|
|
||
|
Personal computer systems negotiate exchanges of information that
|
||
|
permit preselection of conversation partners. The techniques used
|
||
|
yield unprecedented protection for user's identities and data.
|
||
|
Users communicate under the protection of pseudonyms. Data is
|
||
|
kept private, but is releasable through exchange negotiations.
|
||
|
The systems permit self-administration of questionnaires and
|
||
|
distribution of health information, as well as
|
||
|
communication with selected conversation partners.
|
||
|
|
||
|
Information on changing health status and risk related
|
||
|
behaviors are routinely gathered during system operation. In
|
||
|
addition to giving users situationally specific risk assessments,
|
||
|
these data permit new types of epidemiological analysis.
|
||
|
|
||
|
A pilot project devoted to design and development of a
|
||
|
prototype system is specified in detail. The plan includes
|
||
|
discussions with potential organizational participants in the
|
||
|
proposed experiment and other interested parties.
|
||
|
|
||
|
=====================================================
|
||
|
|
||
|
30 August, 1989
|
||
|
|
||
|
"I don't want to know your name,
|
||
|
I want your history."
|
||
|
(Painters and Dockers, 1988).
|
||
|
|
||
|
Secure Distributed Databases for Epidemiological Control
|
||
|
|
||
|
(Controlling Sexually Transmitted Diseases with Informational Barriers)
|
||
|
|
||
|
1..Objectives
|
||
|
|
||
|
Information technology offers new techniques for the control of
|
||
|
infectious agents that can complement medical and public health
|
||
|
measures. The techniques described here are most useful when medical
|
||
|
measures are of limited value and where privacy concerns
|
||
|
predominate. The discussion is focused on control of the Human
|
||
|
Immunodeficiency Virus (HIV), even though the approach is of general
|
||
|
applicability. For instance, HIV seropositive persons benefit even more
|
||
|
from this approach than others, since it helps protect them from
|
||
|
exposure to infectious agents that can activate the virus and cause
|
||
|
other infections. The specific project objective is the development of
|
||
|
information technology techniques for control of sexually transmitted
|
||
|
diseases. The overall project objective is to investigate the impact of
|
||
|
social facilitation and health education on disease transmission, that is
|
||
|
achieved by using such techniques.
|
||
|
|
||
|
Social facilitation has two roles. First, to enhance risk free contacts
|
||
|
through preemptive detection of risky transactions. Second, to reduce
|
||
|
the total number of transactions, and thereby risk, by stabilizing
|
||
|
relationships through increasing the probability that continuing
|
||
|
interactions results from mediated contacts. Both of these objectives
|
||
|
require negotiations using significant amounts of sensitive information
|
||
|
prior to actual contact. In the first case this information is of a medical
|
||
|
nature, in the second it is of an ideological or social nature. The
|
||
|
negotiation procedure can be highly restrictive, resulting in rejection of
|
||
|
most potential contacts. Thus, if social support is to be maintained, the
|
||
|
scope of potential contacts must be increased. This requirement is
|
||
|
satisfied by using telematic systems and computer support in the
|
||
|
negotiation process. Such automatic mediation also permits effective
|
||
|
protection of sensitive personal information, thereby enhancing the
|
||
|
likelihood that the data is complete and reliable.
|
||
|
|
||
|
1.1..Detection of risk
|
||
|
|
||
|
Preemptive risk detection is facilitated by individualized real-time
|
||
|
epidemiological modeling. Both the medical and behavioral history of
|
||
|
each person is available during the negotiation process. Certain risky
|
||
|
contacts are blocked by the mediating system. For instance, a
|
||
|
HIV seropositive person would never be matched with a HIV
|
||
|
seronegative person. In most cases, however, medical test results will
|
||
|
not be available, thus behavioral information provide estimates of risk.
|
||
|
Adequate data is maintained to permit contact tracing in real-time
|
||
|
when a positive test result occurs. Thus, a single positive test result
|
||
|
could propagate through a chain of contacts, changing the risk status of
|
||
|
a large number of persons rapidly. Persons at high risk would be
|
||
|
rejected as social contacts, in most cases, until a negative test result was
|
||
|
obtained. This would lead to voluntary compliance with a program of
|
||
|
selective testing for persons at greatest risk. Thus, preemptive risk
|
||
|
detection operates in two ways. First, risky contacts are rejected by
|
||
|
presumably uninfected persons, thereby blocking transmission of
|
||
|
infectious agents. Second, at-risk persons are motivating to seek
|
||
|
medical assistance for a change of risk status.
|
||
|
|
||
|
1.2..Stabilizing relationships
|
||
|
|
||
|
As long as infectious agents are prevalent, risk of infection is
|
||
|
proportional to the number of (risky) contacts. In the case that persons
|
||
|
are seeking a stable relationship, a prior knowledge of objective factors
|
||
|
including behaviors, and subjective factors such as interests, desires,
|
||
|
attitudes, and beliefs can play a role in predicting outcome of a contact
|
||
|
and thereby minimizing the number of contacts needed to find a stable
|
||
|
relationship. While guarantees of privacy can improve the reliability of
|
||
|
data contributed by persons, it is likely that feedback from prior
|
||
|
contacts can be used to improve data accuracy. It certainly can play a
|
||
|
role in confirming that self reports are complete and honest.
|
||
|
|
||
|
1.3..Security system development
|
||
|
|
||
|
The success of the strategy proposed requires the ability to use data
|
||
|
without disclosing it except when absolutely required. The highly
|
||
|
sensitive nature of the data needed for this study presumes
|
||
|
development of improved security models. Security that is dependent
|
||
|
on trusted third parties may be adequate for the initial phase of this
|
||
|
study, but elimination of such intermediaries is an objective. Thus, in
|
||
|
the limit, each person would exercise control over their sensitive data
|
||
|
directly. This would, of course, require a personal computer or "smart
|
||
|
card" for each user. Such systems have been proposed and will become
|
||
|
economically feasible in the near future. Specification and feasibility
|
||
|
analysis of various security enhancements will be examined as part of
|
||
|
the project.
|
||
|
|
||
|
A first security enhancement step would be to provide the user with a
|
||
|
card that in connection with a password or personal identification
|
||
|
number (PIN) could be used to activate remotely held sensitive data.
|
||
|
This level of security is currently available with electronic funds
|
||
|
transfer (EFT) terminals (automated teller machines). A next level of
|
||
|
security is to provide each user with a "key loader" that provides a
|
||
|
sequence of binary digits that is used to decode remotely held data files
|
||
|
that normally remain enciphered.
|
||
|
|
||
|
Optimal security is available when data is under the direct physical
|
||
|
control of the user as well as being secured by password and
|
||
|
cryptographic security mechanisms. Currently available personal
|
||
|
computers have adequate capacity to perform these functions. Central
|
||
|
data would list pseudonyms (public-keys) of persons using compatible
|
||
|
systems and provide mail boxes for messages. All exchanges of
|
||
|
information would be encrypted.
|
||
|
|
||
|
2..Significance
|
||
|
|
||
|
The AIDS epidemic has created a medical emergency of major
|
||
|
proportions. It also threatens to create a crisis of social control
|
||
|
unprecedented in modern times. The major reason for this is the lack
|
||
|
of medical countermeasures against the virus. A second reason is the
|
||
|
effect of the HIV on the brain, AIDS dementia complex (ADC), that can
|
||
|
result in irresponsible behavior (AIDS not, 1987; Smith, 1989). A third
|
||
|
reason is that some common institutions for social coordination may
|
||
|
actually accelerate the spread of the disease. This deficiency can be
|
||
|
overcome by a strategy that simultaneously enhances personal
|
||
|
integrity and social control.
|
||
|
|
||
|
Factors including changing population density, behavioral patterns, and
|
||
|
infection pathways alter niches for pathogenic organisms which evolve
|
||
|
under new conditions. AIDS is an example of a disease which has
|
||
|
dramatized the availability of a new niche. Seale and Medvedev (1987)
|
||
|
argue that the AIDS epidemic could not have started without the
|
||
|
availability of multi-use hypodermics. An important characteristic of
|
||
|
this disease is inapparent infection that inhibits its control. Effective
|
||
|
control presumes the ability to visualize the infectious agent and take
|
||
|
appropriate action to avoid further transmission. Cost effective medical
|
||
|
testing alone cannot reliable visualize HIV, due to delayed
|
||
|
seroconversion resulting from the virus remaining hidden inside cells,
|
||
|
failures in seroconversion, and even loss of antibody response.
|
||
|
Transmission can apparently not be reliably blocked by physical
|
||
|
barriers. Related organisms pose an even greater threat prior to
|
||
|
identification (Cancer virus, 1987). These limitations demand a new
|
||
|
control strategy suitable to new conditions of disease transmission.
|
||
|
|
||
|
The control strategy suggested here permits an approach to disease
|
||
|
management independent of medical capabilities. It has the potential of
|
||
|
being both effective and economical. Infection risk is visualized entirely
|
||
|
through information handling. Thus, the technique can be applied
|
||
|
without detailed knowledge of the infectious agent. Avoidance of
|
||
|
infection is an integrated function of the information handling strategy,
|
||
|
as is the motivational structure needed to promote cooperation. A most
|
||
|
important aspect of the strategy is that it is a preventative approach.
|
||
|
Brecher (1975) concluded that the three major strategies for control of
|
||
|
sexually transmitted diseases, treatment of symptomatic cases, contact
|
||
|
tracing, and routine screening are ineffective compared to simple
|
||
|
preventative measures. He argues for health education and effective
|
||
|
prophylaxis as likely to lead to reduced incidence. In the case of HIV,
|
||
|
prophylaxis is the only strategy currently available, and thus it is
|
||
|
crucial that informational as well as physical barriers be used to inhibit
|
||
|
the spread of the virus.
|
||
|
|
||
|
This is perhaps even more important when we consider the long term
|
||
|
dynamics of disease. Often diseases evolve in the direction of reduced
|
||
|
virulence, making them less apparent and often more prevalent (Seale
|
||
|
& Medvedev, 1987). In the case of HIV, it is likely that the first
|
||
|
successful medical countermeasures will consist of methods to extend
|
||
|
the latent period of the disease. Thus, while currently, a person can
|
||
|
remain symptom free for 5 to 7 years, a person receiving this first type
|
||
|
of treatment for HIV may remain symptom free for 20 years or more.
|
||
|
The key premise of this strategy asserts that HIV infection and AIDS
|
||
|
are chronic, manageable conditions (Smith, 1989). During this time
|
||
|
persons may pose a continuing infection risk. If these persons are to
|
||
|
remain contributing members of society the informational barriers
|
||
|
suggested here may be crucial.
|
||
|
|
||
|
A wide range of compulsory measures directed towards individuals
|
||
|
have been suggested and in some cases implemented, even though their
|
||
|
negative side effects have been recognized. However, voluntary ones
|
||
|
which could be equally effective have not been exploited. The potential
|
||
|
of voluntary measures has been recognized by the public. The news
|
||
|
report, "Blodgivarnaal blir 'friskhetsintyg'?", was occasioned by a sharp
|
||
|
increase in blood donors in Malmo and reports that blood donor pins
|
||
|
were being used at a dance hall as health certificates (Fredriksson,
|
||
|
1987). A corresponding increase was noted to not have occurred in
|
||
|
Goteborg. In Malmo the pins are given out after the first blood
|
||
|
donation, while in Goteborg they are given out after ten donations. So
|
||
|
the difference in public response is hardly surprising, it results from a
|
||
|
natural experiment on the control of sexually transmissible diseases.
|
||
|
|
||
|
3..Background
|
||
|
|
||
|
3.1..Informational precursors in social medicine
|
||
|
|
||
|
The epidemiological approach taken here is similar to the highly
|
||
|
effective public health measures taken in 18th and 19th century to
|
||
|
control infectious diseases. Up until that time cities (e.g., Copenhagen
|
||
|
and Stockholm) most often had no effective sewage or garbage disposal
|
||
|
services. This led to a situation in many cities where maximum
|
||
|
population levels were reached, with deaths due to infection balancing
|
||
|
population inputs. Having recognized that many diseases were
|
||
|
transmitted (by microorganisms) in wastes, public works programs
|
||
|
were undertaken in order to segregate fluids carrying wastes from
|
||
|
fluids used for consumption and for food preparation. These measures
|
||
|
were taken well before effective medical procedures for dealing with
|
||
|
many diseases were developed, and in most cases before the actual
|
||
|
causative agents were identified. A key point is that knowledge about
|
||
|
transmission of infectious agents preceeded their control. This control
|
||
|
was implemented by a physical restructuring of fluid management
|
||
|
through sanitary engineering.
|
||
|
|
||
|
The fluids dealt with here are distinguished by the source individual.
|
||
|
Due to higher population densities, changes in attitudes about sex,
|
||
|
increases in uses of invasive procedures (use of blood and other bodily
|
||
|
products in medicine, and use of injectable drugs) persons are now
|
||
|
much "closer" in a physiological sense then in earlier times (Seale &
|
||
|
Medvedev, 1987). It is not only recommended to avoid certain classes
|
||
|
of fluids that are in general known to contain infectious agents, but to
|
||
|
avoid contact with body fluids from classes of persons in risk groups
|
||
|
(Prostitutes asked, 1987). The approach discussed here goes one step
|
||
|
further in this line of development, it introduces measures permitting
|
||
|
one to routinely avoid contact with fluids from specific individuals who
|
||
|
are at risk or known to be carriers of an infectious agent. This requires
|
||
|
the routine use of prior knowledge about these agents. That is, the
|
||
|
availability of informational precursors associated with these agents.
|
||
|
|
||
|
3.1.1..Biological agents
|
||
|
|
||
|
A clear understanding of the approach requires distinction between
|
||
|
biological agents, informational agents making demands upon attention,
|
||
|
and informational agents that require only processing by machines. If
|
||
|
each person was to inform a potential contact of all infectious agents
|
||
|
carried by that person, then we could say that an informational
|
||
|
precursor existed for each infectious agent. This would give persons the
|
||
|
option of avoiding contact with fluids containing infectious agents.
|
||
|
|
||
|
3.1.2..Informational demands upon attention
|
||
|
|
||
|
Aside from the privacy problems and diagnostic uncertainties which
|
||
|
would reduce the effectiveness of such a procedure, there are major
|
||
|
informational demands upon attention associated with it. Particularly in
|
||
|
the case where there is a reasonable prevalence of an infectious agent
|
||
|
in a population, the simple communication of diagnostic information
|
||
|
would be inadequate. With sexually transmitted diseases, in most cases,
|
||
|
at least one new person has been infected by the time a given
|
||
|
individual has been diagnosed as carrying the infectious agent. Thus, a
|
||
|
person would have to communicate not only their own diagnostic
|
||
|
information, but also the diagnostic information from previous contacts.
|
||
|
Some of information concerning a given contact would only become
|
||
|
available much after that contact had take place, thus inducing
|
||
|
unrealistic informational demands upon communicators.
|
||
|
|
||
|
3.1.3..Information processible by machine
|
||
|
|
||
|
A solution to this problem is to structure diagnostic data in
|
||
|
standardized machine readable forms, thus permitting precursor
|
||
|
information (both from direct diagnosis and from diagnostic
|
||
|
information transmitted by contact tracing) to be exchanged by
|
||
|
computers prior to an anticipated contact. This strategy also permits the
|
||
|
introduction of an effective solution to the privacy problem. The idea is
|
||
|
to make use of the information without revealing that information
|
||
|
except when it is no longer sensitive (Stodolsky, in prep.). It also
|
||
|
compensates to some degree for diagnostic uncertainties, since what is
|
||
|
transmitted by automated contact tracing is information about risk, as
|
||
|
opposed to direct diagnostic information. The automated contact tracing
|
||
|
mechanism can also be implemented in a manner protecting personal
|
||
|
integrity (Stodolsky, 1979a; 1979b; 1979c; 1983; 1986)
|
||
|
|
||
|
3.2..Theory of operation
|
||
|
|
||
|
The system outlined here is most simply explained if we assume that
|
||
|
each person has a personal computer capable of directly exchanging
|
||
|
information with those of other persons. These computers can, in the
|
||
|
simplest case, generate random numbers that are used to label
|
||
|
transactions. A transaction is defined as an interaction capable of
|
||
|
transmitting the infectious agent. After each transaction, therefore, a
|
||
|
person has a unique label or code for that transaction.
|
||
|
|
||
|
In the event that a person becomes ill or is identified as carrying an
|
||
|
infectious agent, the transaction codes which represent transactions
|
||
|
during which that agent could have been transmitted are then
|
||
|
broadcast to all other computers. If a receiver's computer has a
|
||
|
matching code, then that person is alerted to the possibility of the
|
||
|
agent's presence, and can report to a medical center for testing and
|
||
|
treatment. This iterates the process, thus identifying all carriers
|
||
|
eventually. The effect is to model the epidemiological process, thereby
|
||
|
identifying all (potential) carriers through forward and backward
|
||
|
contact tracing.
|
||
|
|
||
|
In order to clarify the procedure, consider a scenario in which there are
|
||
|
two types of actors, persons (Pi) and doctors (Di) (Figure 1). Doctors
|
||
|
operate only within a health center (HC). There are also two types of
|
||
|
agents, biological and informational, that can be transmitted during a
|
||
|
transaction. Informational agents are always transmitted with physical
|
||
|
agents. Each actor has a computer that can exchange information with
|
||
|
another actor's computer. A doctor's computer can also broadcast
|
||
|
messages to all actors at once by sending them through a more
|
||
|
powerful computer at the health center. Contact tracing is illustrated
|
||
|
by the sequence in Figure 2. At time T1 person A (Pa) and person B
|
||
|
(Pb) engage in a transaction. Their computers label this transaction with
|
||
|
a number N1 and store the number. Pb then physically moves into
|
||
|
contact with person C (Pc), this transaction is labeled N2 and recorded
|
||
|
at time T2. At time T3, Pb becomes ill and reports to a doctor (Da). The
|
||
|
doctor verifies the infectious nature of the illness and then reads the
|
||
|
transaction codes, N1 and N2, out of Pb's computer. These are broadcast
|
||
|
to all other computers at time T4. When Pa's computer receives the
|
||
|
broadcast, the transaction code N1 matches the number stored in
|
||
|
memory. This alerts Pa to the fact that s/he is in the chain of
|
||
|
transmission of the infection ( in this case Pa was the initial carrier of
|
||
|
the infectious agent). When Pc's computer receives the broadcast, the
|
||
|
transaction code N2 matches the number stored in memory. This alerts
|
||
|
Pc to the fact that s/he may have been infected (at T2). The alerting of
|
||
|
Pa is an example of backward tracing from Pb. The alerting of Pc is an
|
||
|
example of forward tracing. We assume in this simplest case, that when
|
||
|
an alert is received, the affected person voluntarily reports to a doctor.
|
||
|
In a more secure system, a person's computer would not be capable of
|
||
|
generating new transaction codes if a matching code had been received.
|
||
|
This would indicate to potential new contacts that contact with this
|
||
|
person was risky. (Actually, the more secure procedure would require
|
||
|
the exchange of updated health certificates.)
|
||
|
|
||
|
3.3..Operational alternatives
|
||
|
|
||
|
An ideal system would ensure that all contacts were mediated by
|
||
|
computer. Since the most appropriate technology, powerful wristwatch
|
||
|
like computers with communication capabilities, is not available for the
|
||
|
moment (though key components have become available [Ivey, Cox, ,
|
||
|
Harbridge, & Oldfield (1989)]), development will proceed on standard
|
||
|
personal computers. While these machines are available in a hand held
|
||
|
format, people can not be expected to carry them at all times. In many
|
||
|
cases, people can organize their contacts using a personal computer
|
||
|
from an office, public computer center, or their home, but clearly other
|
||
|
options must be available. A voice-message system that duplicates all
|
||
|
function of the personal computer, but with voice output and telephone
|
||
|
key-pad input is an attractive option. It permits planned organization
|
||
|
of contact opportunities with limited, but, for most persons, more than
|
||
|
adequate security.
|
||
|
|
||
|
In the case of chance meetings, persons would be required to make an
|
||
|
inquiry prior to proceeding with a contact. The common magnetic strip
|
||
|
credit card offers an adequate level of security, but requires a readily
|
||
|
accessible teller machine. Such a verification system assumes
|
||
|
cooperation of appropriate financial institutions. A telephone-based
|
||
|
verification system used in a manner similar to credit card verification
|
||
|
is another option. The various options will be considered during the
|
||
|
first year of the project.
|
||
|
|
||
|
4..Research plan
|
||
|
|
||
|
The overall research plan is based on a 2 factor design with repeated
|
||
|
measures. One factor is risk group and the second is availability of an
|
||
|
experimental health conferencing system. Dependent measures include
|
||
|
health status and health related behaviors. The plan is designed to
|
||
|
permit rigorous evaluation of results without interfering with effective
|
||
|
service to the subject populations, and to permit rapid scaling up to a
|
||
|
larger population if justified by the initial results. If the security needs
|
||
|
are met, it is expected that demand for service will exceed supply. The
|
||
|
waiting list management strategy will generate the control groups.
|
||
|
|
||
|
The effect of the health conferencing system on infection and risk
|
||
|
behaviors is of major interest, thus this effect is measured as a within
|
||
|
subject factor. Each group will be compared to itself at a later time.
|
||
|
Comparison to cross sectionally matched individuals controls for time
|
||
|
effects. The differential effectiveness the experimental intervention on
|
||
|
different risk groups is studied as a between subject factor in order to
|
||
|
enhance the generalizability of the results. A nested multi-variate
|
||
|
analysis of co-variance with repeated measures using matched controls
|
||
|
is used for overall data evaluation.
|
||
|
|
||
|
4.1..Method
|
||
|
|
||
|
A secure conferencing system permitting automated interviewing and
|
||
|
selection of conversation partners, as well as mail delivery functions
|
||
|
will be developed. The software will be installed on two identical
|
||
|
systems. One system will be made available to the Organization of Gays and
|
||
|
Lesbians in Denmark, the other to the (HIV) Positive Group in Denmark.
|
||
|
|
||
|
Each person expressing interest in participating receives information
|
||
|
describing the study and a preliminary self-administered interview.
|
||
|
Person applying to the Positive Group must present evidence of
|
||
|
seropositivity to be considered further. Persons applying to the
|
||
|
Organization of Gays and Lesbians in Denmark must present results of a
|
||
|
Polymerase Chain Reaction (PCR) investigation to be considered further.
|
||
|
Upon presentation of appropriate medical evidence, the registrar
|
||
|
assigns them a pseudonym and password. A comprehensive interview
|
||
|
covering health history and health behaviors is then self-administered.
|
||
|
Each person receives health education materials and is placed on the
|
||
|
waiting list.
|
||
|
|
||
|
When 500 persons are available from each organization they will be
|
||
|
formed into matched groups and randomly assigned to either treatment
|
||
|
or control conditions. The treatment groups receive a questionnaire for
|
||
|
guiding the selection of conversation partners. Controls remain on the
|
||
|
waiting list for six months at which time they are integrated into the
|
||
|
treatment condition. Depending upon results of a risk assessment
|
||
|
interview, serological testing may again be required. Participants are
|
||
|
required to give feedback interviews after meeting conversation
|
||
|
partners. This serves as a check on self-reported data and as a source of
|
||
|
information on opportunities for transmission of infectious agents. Data
|
||
|
on interactions with other persons and degree of risk associated with
|
||
|
them is also collected routinely. Sexual transmitted infections and other
|
||
|
conditions requiring medical intervention are reported routinely. Health
|
||
|
behavior interviews are readministered on six month intervals just
|
||
|
prior to integration of a new persons into the treatment groups.
|
||
|
|
||
|
4.2..Time frame
|
||
|
|
||
|
The first year is devoted to preparations including software
|
||
|
development, finalizing arrangements with participating organizations,
|
||
|
and pilot testing (See "Specific tasks for preparation phase (First year)"
|
||
|
below). The first six month period of the second year is reserved for
|
||
|
training of registrars , and accumulating and interviewing of
|
||
|
participants. The second six month period is for comprehensive testing
|
||
|
of operational procedures as the first set of participants begins using
|
||
|
the experimental system. Cross sectional data analysis techniques will
|
||
|
be applied during this period.
|
||
|
|
||
|
The third half-year of the operational phase of the project will be
|
||
|
devoted to the integration of the first set of control groups into the
|
||
|
treatment condition. After this, all procedures and software will have
|
||
|
been finalized. Longitudinal data analysis procedures will be integrated
|
||
|
with those already in use. At two additional six month intervals, half of
|
||
|
those on the waiting list will be added to the experimental groups using
|
||
|
the health conferencing system.
|
||
|
|
||
|
4.3. Specific tasks for preparation phase (First year)
|
||
|
|
||
|
4.3.1..Contact and discussions with organizations.
|
||
|
|
||
|
The wide range of sensitive and important questions raised by the
|
||
|
proposed study make it imperative that affected and concerned
|
||
|
organizations and persons (Dansk Epidemiologisk Institut, Statens
|
||
|
Serum Institut, Registertilsynet, Sundhedsstyrelsen, Landsforeningen
|
||
|
for Boesser og Lesbiske, Positivgruppen, Frivillige Bloddonorer, selected
|
||
|
journalists and politicians, etc.) have the opportunity to review and
|
||
|
comment upon the proposal. This will include, but not be limited to
|
||
|
those collaborating in the experiment proper. Invitations to a workshop
|
||
|
series will be issued to those selected. The workshops will include
|
||
|
lectures, demonstrations (both manual and computer), and discussions.
|
||
|
Feedback from participants will be used as input to the experiment
|
||
|
design.
|
||
|
|
||
|
4.3.2..Design of experimental trials
|
||
|
|
||
|
The specifics of the design including control procedures will be
|
||
|
structured to insure both scientific validity of collected data and
|
||
|
acceptability of procedures to participants and their organizations. It is
|
||
|
expected there will be conflicts between these two demands and the
|
||
|
workshops will be used to anticipate and facilitate their resolution. A
|
||
|
specific question to be addressed will be the potential conflict between
|
||
|
demands for participation and capacity of organizations to respond to
|
||
|
them without sacrificing rigor of the trials. While previously developed
|
||
|
questionnaires will serve a base for data collection, specific concerns
|
||
|
and interests of different organizations and interests groups will
|
||
|
influence the actual data requested from participants.
|
||
|
|
||
|
4.3.3..Design of secure registration procedures
|
||
|
|
||
|
Protection of the participants identity will be in part dependent upon
|
||
|
the security of the registration and pseudonym assignment procedures.
|
||
|
Abuse of the system that could result from persons obtaining multiple
|
||
|
names will also be controlled by the registration system. Both
|
||
|
administrative and cryptographic mechanisms will require careful
|
||
|
specification. After a description of the cryptographic mechanisms for
|
||
|
registration, organizational placement for administrative procedures
|
||
|
will be determined.
|
||
|
|
||
|
4.3.4..Software development
|
||
|
|
||
|
The most important factor in protection of the participants is the
|
||
|
security of their own computer systems. Both privacy and protection of
|
||
|
identity depends upon the integrity of the cryptographic software. The
|
||
|
software is also plays an essential role of demonstrating the system so
|
||
|
better understanding can be achieved by both users and
|
||
|
representatives of organizations considering the adoption of the system.
|
||
|
Certain components of the proposed system perform functions that
|
||
|
have never been implemented on computer systems or that have not
|
||
|
been implemented to perform the functions needed in this application.
|
||
|
Preliminary software development will permit a better estimate of the
|
||
|
overall effort required to satisfy the security and efficiency
|
||
|
requirements in the proposed application. Preliminary development
|
||
|
will also permit testing of the user interface to ensure easy operation
|
||
|
under strict security requirements.
|
||
|
|
||
|
4.3.5..Simulation modeling
|
||
|
|
||
|
Simulation modeling for predicting effects of the completed system can
|
||
|
play both analytic and educational roles. Graphics can effectively
|
||
|
illustrate the relative impact of preventative as opposed to treatment-
|
||
|
based methods in epidemiology. Such simulations can influence
|
||
|
organizational decision makers as well as potential users. Analytic
|
||
|
questions concerning the relative impact of limited adoption of the
|
||
|
technology on overall population morbidity and mortality can also be
|
||
|
answered with simulation methods. This could answer cost
|
||
|
effectiveness questions and be used to guide the rate of adoption of the
|
||
|
new technology. Considering the very large expenses associated with
|
||
|
clinical treatment of AIDS, the simulation models may be useful in
|
||
|
estimating appropriate funding for operational stages of the project.
|
||
|
|
||
|
4.3.6..Publication of "Hormones" epidemiological model.
|
||
|
|
||
|
While the general concept of real-time epidemiological modeling has
|
||
|
been presented at a conference (Stodolsky, 1983), publication has been
|
||
|
limited to an application involving control of electronic infections on
|
||
|
computer networks (Stodolsky, 1989). Conference presentation and
|
||
|
publication as a human population oriented application will strengthen
|
||
|
theoretical review, and directly address specific questions concerning
|
||
|
human and legal rights. The secure model was included in a recent
|
||
|
conference presentation (Stodolsky, 1986). It would best be
|
||
|
mathematized and then subject to a proof of correctness to insure that
|
||
|
any flaws are identified before substantial software development
|
||
|
efforts are made.
|
||
|
|
||
|
4.3.7..Publication of "Conditional privacy:..."
|
||
|
|
||
|
The paper "Conditional privacy: Protecting expression by one-bit
|
||
|
matchmaking" received public exposure in a conference presentation
|
||
|
(Stodolsky, 1986). While the method is relatively straight forward
|
||
|
cryptographicly, conference presentation and publication would
|
||
|
increase the probability that any protocol errors are uncovered and
|
||
|
perhaps suggest enhancements that integrate certification with
|
||
|
information exchange.
|
||
|
|
||
|
4.3.8..Test data collection
|
||
|
|
||
|
Once data requirements are identified, data collection procedures will
|
||
|
be tested in a software environment approximating the final system.
|
||
|
This will permit identification of user interface and security problems
|
||
|
that could cause problems.
|
||
|
|
||
|
4.3.9..Pilot tests
|
||
|
|
||
|
Test of the completed system, not including cryptographic security, can
|
||
|
be conducted with non-sensitive data to insure operational procedures
|
||
|
are functional. Participants could include students and interested
|
||
|
person attending demonstrations.
|
||
|
|
||
|
5..References
|
||
|
|
||
|
AIDS not gentle on the mind. (1987, March 26). New Scientist, (1153),
|
||
|
38-39.
|
||
|
|
||
|
Brecher, E. M. (1975). Prevention of sexually transmitted diseases. The
|
||
|
Journal of Sex Research, 11(4), 318-328.
|
||
|
|
||
|
Cancer virus linked to drug users. (1987, May 21). International Herald
|
||
|
Tribune, 8.
|
||
|
|
||
|
Chaum, D. (1985). Security without identification: Transaction systems
|
||
|
to make big brother obsolete. Communications of the ACM, 28(10),
|
||
|
1030-1044.
|
||
|
|
||
|
Fredriksson, A. (1987, July, 15). Blodgivarnaal blir "friskhetsintyg"?
|
||
|
Goteborgs-Posten, No. 88, 18.
|
||
|
|
||
|
Hellerstedt, L. (1987, June 19). Homosexutredning: Aidstest "frikort"
|
||
|
foer loesslaeppt sex. Dagens Nyheter.
|
||
|
|
||
|
Ivey, P. A., Cox, A. L., Harbridge, J. r., & Oldfield, J. K. (1989, August).
|
||
|
A single-chip public key encryption subsystem. IEEE Journal of Solid-
|
||
|
State Circuits.
|
||
|
|
||
|
Painters and Dockers (Rock musicians). (1988). "Safe Sex", Crocodile
|
||
|
(Compact Disk EMA CD1). Export Music Australia.
|
||
|
|
||
|
Prostitutes asked not to give blood. (1987, April 9). New Scientist,
|
||
|
(1555), 29.
|
||
|
|
||
|
Seale, J. R. & Medvedev, Z. A. (1987). Origin and transmission of AIDS.
|
||
|
Multi-use hypodermics and the threat to the Soviet Union: discussion
|
||
|
paper. Journal of the Royal Society of Medicine, 80, 301-304.
|
||
|
|
||
|
Smith, D. (1989, July 14). AZT, Acyclovir, and the case for early
|
||
|
treatment. AIDS Treatment News, Issue No. 83.
|
||
|
|
||
|
Stodolsky, D. (1979a, April 9). Personal computers for supporting health
|
||
|
behaviors. Stanford, CA: Department of Psychology, Stanford University.
|
||
|
(Preliminary proposal)
|
||
|
|
||
|
Stodolsky, D. (1979b, May 21). Social facilitation supporting health
|
||
|
behaviors. Stanford, CA: Department of Psychology, Stanford University.
|
||
|
(Preliminary proposal)
|
||
|
|
||
|
Stodolsky, D. (1979c, October). Systems approach to the epidemiology
|
||
|
and control of sexually transmitted diseases. Louisville, KY: System
|
||
|
Science Institute, University of Louisville. (Preliminary project
|
||
|
proposal)
|
||
|
|
||
|
Stodolsky, D. (1983, June 15). Health promotion with an advanced
|
||
|
information system. Presented at the Lake Tahoe Life Extension
|
||
|
Conference. (Summary)
|
||
|
|
||
|
Stodolsky, D. (1986, June). Data security and the control of infectious
|
||
|
agents. (Abstracts of the cross disciplinary symposium at the University
|
||
|
of Linkoeping, Sweden: Department of Communication Studies).
|
||
|
|
||
|
Stodolsky, D. (1989). Net hormones: Part 1 - Infection control assuming
|
||
|
cooperation among computers [Machine-readable file]. Van Wyk, K. R.
|
||
|
(1989, March 30). Several reports available via anonymous FTP. Virus-
|
||
|
L Digest, 2(77). Abstract republished in van Wyk, K. R. (1989, April 24).
|
||
|
Virus papers (finally) available on Lehigh LISTSERV. Virus-L Digest,
|
||
|
2(98). (Available via anonymous file transfer protocol from LLL-
|
||
|
WINKEN.LLNL.GOV: File name "~ftp/virus-l/docs/net.hormones" at
|
||
|
Livermore, CA: Lawrence Livermore National Laboratory, Nuclear
|
||
|
Chemistry Division and IBM1.CC.LEHIGH.EDU: File name "HORMONES
|
||
|
NET" at Bethlehem, PA: Lehigh University. And by electronic mail from
|
||
|
LISTSERV@LEHIIBM1.BITNET: File name "HORMONES NET" at Lehigh
|
||
|
University).
|
||
|
|
||
|
Stodolsky, D. (in prep.). Conditional privacy: Protecting expression by
|
||
|
one-bit matchmaking.
|
||
|
|
||
|
=========================================================
|
||
|
|
||
|
/---[] []
|
||
|
| Pa | ---------------[]--------------
|
||
|
\---/ | [] |
|
||
|
| |
|
||
|
/---[] | /---[] /---[] |
|
||
|
| Pb | | | Da | | Db | |
|
||
|
\---/ | \---/ \---/ |
|
||
|
| |
|
||
|
| Health Center |
|
||
|
/---[] -------------------------------
|
||
|
| Pc |
|
||
|
\---/
|
||
|
|
||
|
----------------------------------------------------------
|
||
|
|
||
|
Explanation of Symbols:
|
||
|
|
||
|
/---\
|
||
|
Persons | Pi |
|
||
|
\---/
|
||
|
|
||
|
|
||
|
|
||
|
/---\
|
||
|
Doctors | Di |
|
||
|
\---/
|
||
|
|
||
|
|
||
|
|
||
|
Computers []
|
||
|
|
||
|
Figure 1
|
||
|
|
||
|
============================================================
|
||
|
|
||
|
P
|
||
|
h ----------- -----[]-----
|
||
|
y | N1,N2 | | N1,N2 |
|
||
|
s | Pb Da | | Da |
|
||
|
i | | | |
|
||
|
c ----------- ------------
|
||
|
a Pa Pa
|
||
|
l N1 N1=N1
|
||
|
Pb Pa Pa
|
||
|
P Pb
|
||
|
l N2 N2=N2
|
||
|
a Pc Pc Pc Pc
|
||
|
c
|
||
|
e Pb
|
||
|
|
||
|
Time ----------------------------------------------->
|
||
|
T1 T2 T3 T4
|
||
|
|
||
|
----------------------------------------------------------
|
||
|
|
||
|
Explanation of symbols:
|
||
|
|
||
|
Person i Pi Doctor A Da
|
||
|
|
||
|
Physical and Pi
|
||
|
informational Ni Transaction codes Ni
|
||
|
exchange Pj
|
||
|
----
|
||
|
Information Ni,Nj Health Center | |
|
||
|
transmission Pi ----
|
||
|
|
||
|
Information Ni=Ni Health Center -[]-
|
||
|
reception Pi Computer | |
|
||
|
and matching Transmitting ----
|
||
|
|
||
|
Time of operation Ti
|
||
|
|
||
|
Figure 2
|
||
|
|
||
|
===========================================================
|
||
|
David S. Stodolsky, PhD Routing: <@uunet.uu.net:stodol@diku.dk>
|
||
|
Department of Psychology Internet: <stodol@diku.dk>
|
||
|
Copenhagen Univ., Njalsg. 88 Voice + 45 31 58 48 86
|
||
|
DK-2300 Copenhagen S, Denmark Fax. + 45 31 54 32 11
|