PARTNER NOTIFICATION AS A PREVENTION STRATEGY: A SOCIAL
SYSTEM PERSPECTIVE
By Prem Misir, Ph.D.
Part 1
Ethical Issues
Issues Associated with Partner Notification
Provider referral versus patient
referral
The Swedish
Approach to Partner Notification
Swedish and American
Viewpoints
Suggestions to Improve Partner Notification
A Social System Perspective
This article was published in AIDS PATIENT CARE
AND STDs, Vol. 13, No. 6, June 1999 (U.S.A.) –
Please acknowledge.
"Despite the well-established role of publichealth
departments in identifying and notifying the sexual contacts
of those reported to have
venereal diseases, this strategy of intervention -designed
to break the chain of disease transmission-played no role
to the early response
to AIDS."
Identifying and notifying sexual contacts
of those stricken with the Human Immunodeficiency Virus
(HIV), has proven to be controversial, largely as a result
of its incurable status, and the stigma attached to it.
Notification of a disease is carried out through patient
referral where the patient informs his/her partner(s), by
provider referral, also called contact tracing in which
the public health department notifies the sexual partner(s),
and by contract referral where the client is encouraged
to notify his her partners, on condition that the health
care worker will trace any partner who do not contact the
clinic within a contracted time period.
Partner notification has been utilized as a standard health
practice for combating the transmission of treatable sexually
transmitted diseases (STDs) since 1937, and has worked well.
At that time, partner notification was used to halt the
spread of syphilis. Today, the scourge of HIV demands a
more comprehensive, effective, and rapid implementation
of partner notification as public health policy.
Partner refers to sex partners and injecting drug users
(IDUs) who engage in needle-sharing. Research data demonstrates
a growing interest in partner notification with many States
and constituencies acknowledging its efficacy in resisting
the spread of HIV. The Centers for Disease Control and Prevention
(CDC) recommendations suggest that public health department
staff should inform known partners in cases where an HIV-infected
patient refuses to comply.
New York State recently reinforced its partner notification
mechanisms through the passage of an Act to amend the public
health law, pertaining to HIV infection and reporting cases
of this infection to spouses and known sexual partners.
This law was enacted on July 7, 1998, and covers
the following provisions on duty to report and contact tracing:
? Every physician or other personnel authorized by law to
arrange for diagnostic tests, or provide a medical diagnosis,
or any laboratory administering this test, shall immediately
upon first diagnosis that the person is HIV-infected, or
upon first diagnosis that a person is assailed with Acquired
Immune Deficiency Syndrome (AIDS), or upon first diagnosis
that a person is beset with HIV-related illness, report
such case to the Health Commissioner.
? Every Health Commissioner, upon establishing that such
reported case, or other identified known case of HIV infection,
justifies contact tracing, shall personally inform the known
contacts of the protected person.
? The contact shall be notified of the characteristics of
HIV, the known viral transmission routes, risks of prenatal
and perinatal transmission, actions the person can effect
to further reduce viral transmission, and community-based
organizations (CBOs) accessible to the person that dispense
counseling, medical care and treatment, and additional information
of other appropriate services for HIV-infected persons.
? Physician or other public health personnel effecting this
notification must make the notification in person.
The New York State law provides mechanisms for the use of
provider referral, and no opportunity is given to the patient
to inform contacts about the infected status. Greater utilization
is made of public health personnel outside of clinic settings
to achieve provider referral. However, at the core of partner
notification are the issues of ethics and law.
Ethical
Issues
The transmission of AIDS constitutes a harm done to others,
and therefore needs to be addressed strategically to modify
high-risk behavior, paying particular attention to privacy
and confidentiality. Bayer and Toomey present two approaches
being used in partner notification programs: the duty of
physicians to warn where the physician has knowledge of
the identity of the person at risk, and contact tracing
where the physician may be unaware of the identity of the
person(s) at risk. They contend that partner notification
programs have been embroiled in controversy where processes
that are essentially voluntary are perceived as mandatory,
and those that observe confidentiality are seen as an invasion
of privacy.
Ethical issues predominate in any planning discussion of
partner notification, and quite rightly so. Some of these
issues are the duty to warn, the right to know, the duty
to protect the public health, the right of confidentiality
and privacy, protection against discrimination, and the
duty to protect the family and social relationships. Confidentiality
of the patient?s data must be protected, for "the patient
in analysis must learn to free associate and to break down
resistance to deal with unconscious threatening thoughts
and feelings. To revoke secrecy after encouraging such risk-taking
is to threaten all future interactions." Confidentiality,
if perceived by the patient to be secured, may enable the
patient to provide full disclosure of symptoms, causes,
and persons exposed. Confidentiality also is necessary to
safeguard the rights of privacy.
However, Walters argues that there are grounds for violating
the principle of confidentiality. Firstly, this principle
may ensue in conflict with the rights of the patient himself,
as when the patient may be a threat to himself. Secondly,
the principle may produce conflict with the right of an
innocent third party, as in the case of a bride-to-be who
may not know the bridegroom-to-be has a viral infection,
but her physician knows. Should the physician provide full
disclosure? In such a case, the physician can invoke a ?privilege
to disclose? and effect the warning. Although the HIV-infected
individual withholds consent. Thirdly, the principle may
generate a conflict between confidentiality and societal
interests, as when physicians report communicable diseases.
Violation of confidentiality has to be assessed on an individual
basis and carefully balanced against any adverse impact
on society. This violation cannot be applied as a general
rule in the physician-patient relationship, especially in
the case of AIDS as a viral infection.
Issues Associated with
Partner Notification
Partner notification has to be voluntary to satisfy the
needs, will, and perceptions of different constituencies,
and to eliminate objections presented against its usage.
Some criticisms of partner notification are as follows:
? Too expensive to effect partner notification programs
? No curative treatment for AIDS
? Personal stigmatization and discrimination against AIDS
Potterat and others argued against these objections. Voluntary
partner notification of HIV status is cost effective when
we consider that all of the 35,000 cases of syphilis (CDC,
MMWR, 1988), 40 percent of gonorrhea (CDC, STD, 1988), and
a number of chlamydia cases, are methodically checked for
sexual partner data. For 100,000 AIDS cases, the cost of
a partner notification program in the United States (U.S.)
is estimated at $20 million annually. In Sweden, the cost
factor is US$460 per newly identified HIV-positive patient
, quite comparable to the unit cost of $810 for a new HIV
patient in the U.S. The costs have to weighed against the
benefits of halting the spread of HIV. However, the issue
of cost for easily treatable STDs, in which transmission
is blocked by readily available treatment, is very different
from that of HIV, where there is no cure, or drug to block
transmission. The issue of curability is distinct from one
of treatment with the intention to eliminating the spread
of HIV, as is virtually possible for all other STDs. Nevertheless,
the partner notification approach could be a preventive
measure if it is effective in identifying new cases.
However, Brandt makes the point that negative social meanings
and inadequate public funding related to venereal disease
(VD), did impede medical efforts. Even with the discovery
of penicillin, VD researchers expressed indifference as
they believed a cure for syphilis would promote sexual promiscuity.
The cost factor in the treatment of AIDS is not only dependent
upon its potential results, but also upon the negative social
images associated with the disease.
Another argument against partner notification is its negligible
value, as currently, there is no cure for AIDS. Despite
this fact, there is treatment. Zidovudine (AZT) if administered
early extends the symptomless period of infection. And mortality
among patients with advanced HIV infection declined from
29.7 per 100 person-years in 1995 to 8.8 per 100 person-years
in the second quarter of 1997 , a change attributable to
the availability of highly active antiretroviral therapies.
Prophylaxis against Pneumocystis Carinii and other opportunistic
infections, reduces the frequency and severity of these
infections. The incurability of AIDS at this time requires
a new thrust which could develop a better quality of life
for the infected person. There, therefore, is greater priority,
and indeed, value to establish effective partner notification
programs, with the intent to eliminate the further spread
of HIV.
Stigmatization and discrimination continue to negatively
affect the victims of AIDS. Stigma is a mark of social disgrace
that places the infected person apart from those who see
themselves as "normal." Goffman perceives the
stigmatized individual as having a ?spoiled identity? due
to negative evaluations by others. Persons consumed by AIDS
are seen as having a spoiled identity by some sections of
the population considered to be normal. Legislation on its
own will not reduce the stigma experienced by people with
AIDS.
The AIDS stigmatized image is reinforced by incorrect information.
This misrepresentation and mythology need disclosure, and
not be incorporated as the basis for social policies. Stigma
also can be reduced by "normalizing" the illness.
Attempts should be made to show that not only "deviants"
contract HIV. Conrad points out that "we need to develop
policies that focus on changing the image of AIDS and confront
directly the stigma, resistance to information, and the
unnecessary fears of the disease. Given the social meaning
of AIDS, this won't be easy." But it can be done. Partner
notification programs will be much more successful if the
stigmatized images of AIDS are reduced or eliminated.
Provider
referral versus patient referral
Partner notification programs, rooted in voluntaristic choice,
have become integral to HIV prevention strategy in most
States. These programs are manifested in terms of either
provider referral (third party referral) and/or patient
(client) referral. Provider referral refers to a situation
in which the patient requests assistance from the public
health department to help locate his/her sexual/needle-sharing
contacts/partners. Patient referral has to do with a situation
in which the patient notifies his/her own sexual/needle-sharing
contacts/partners.
Partner notification facilitates primary and secondary prevention
of HIV infection, as shown by the following data in New
York City. In 1996, 572 HIV-positive patients were interviewed
in the partner notification program. The interview yielded
485 contacts with a contact index of 0.9. Of these 485 contacts,
82 previously tested positive; about 218 contacts were given
pre-test counseling and tested for the HIV infection; 185
partners were not tested; 12.2% of the partners tested positive.
The contact index in 1995 was 0.8 and 12.5 of the partners
contacted were tested and found to be HIV-positive. These
data are elicited from third party referrals which seem
to have a fair measure of success.
The
Swedish Approach to Partner Notification
Strategies for implementing partner notification were applied
at a Gothenberg Clinic in Sweden. Some general characteristics
of the Swedish approach are as follows :
? Partner notification effected shortly after diagnosis.
? Sexual history traced to 3-4 years or more.
? Concern for civil rights manifested by truly enabling
patients to participate.
? Patient encouraged to reveal information on contacts,
any medical examination done, sex techniques utilized, and
condom usage.
? Method of referral made via letter to the partner, without
disclosing reason for the meeting.
This partner notification scheme was successful, and was
based on a system of third party referral.
In a follow-up evaluative study of this Gothenberg Clinic,
it became clear that a partner notification program is supportable
if the following criteria are met:
? Guarantee of good medical care
? Guarantee of good psychosocial care
? Support for diagnosed patients
These criteria will not be met in the foreseeable future
in the United States. Indeed, President Bill Clinton recently
admitted that because of a misjudgement relating to probable
need, antiretrovirals will not be covered for the HIV-infected
Medicaid patients until the onset of AIDS.
The follow-up evaluative study in Sweden recommends less
involvement by the public health department in contact tracing.
It supports the position that a system in which the client
is dealt with by clinically active health care providers,
where names of patients and partners never get out of the
clinic, is better for the HIV infection than a system using
the public health department resources. Partner notification
tasks in this process are better effected by a specially
trained counselor than by the physician.
The New York State law to amend the public health relating
to HIV infection, Chapter 163, makes no clear provisions
for guaranteeing good medical care, guaranteeing good psychosocial
care, and guaranteeing support for HIV-infected patients.
These criteria have been associated with supportable partner
notification programs. The legal situation in New York relies
heavily on public health personnel to make provider referral
happen outside of the clinic backdrop. Applying this strategy
could not only make confidentiality of information violable,
but which could result in failure of partner notification
programs. The major objection to partner notification is
HIV name reporting. The lack of anonymity may prevent many
people from being tested. This is a very important issue
to the HIV-infected community, and should be addressed.
Various coding systems have been suggested to retain anonymity
in the face of names reporting, which should also be mentioned,
but they are apparently very costly and imprecise.
Further, index patients and partners were linked by internal
code numbers at each clinic. The index patient?s name and
partner?s test results are not disclosed in medical communications.
The HIV test results of notified partners are never revealed
to the index patient. Between 1985 and 1991, there was an
18.4 percent increase in reported cases.
Swedish
and American Viewpoints
However, while these principles may work well in Sweden,
they may present serious problems within the US health care
scenario. Value differences exist between the two countries.
Americans are more likely to view poverty as an individual
problem, whereas in Sweden, poverty is seen as the product
of the economic system. In effect, in the US, emphasis is
on ?equality of opportunity,? while in Sweden, focus is
on ?equality of result.? In Sweden, considerable authority
is vested in government while ?less government? in the US
seems to be in vogue.
Klass indicated that American individualism and social and
ethnic heterogeneity have produced ?fractionalized understandings
of citizenship.? In Sweden, citizenship is rooted in solidarity
and universal entitlement. This approach is evidenced by
two-thirds of Sweden?s $190 billion budget being allocated
for health care where everyone is covered through the state.
This is not so in the US. Rodwin argues that the US has
a small public hospital, and with no national health insurance,
a multipayer system exists. Those with more resources afford
the best health care.
Therefore, for the aforementioned reasons, the principles
for an effective partner notification program as enunciated
in the Swedish research, may not have direct applicability
in the US. This point becomes clear when you keep in mind
that many AIDS patients are either uninsured or underserved
in the US.
However, on a more specific note, the New York City Planning
Prevention Group (PPG) has had discussions about partner
notification. But so far the PPG has not accorded a precise
priority status to partner notification. The research literature
is quite clear about the significance of partner notification
in secondary prevention. The Bureau of STD Control provides
partner notification services via its Contact Notification
Assistance Program (CNAP), and as aforementioned, has had
a fair measure of success. However, CNAP may find it useful
to assess the results at the Gothenberg Clinic. This Swedish
Clinic was effective in partner notification processes where
the counselors were clinically active providers, and not
Department of Health pseudo counselors. In this way, the
names of clients and partners do not leave the clinic.
The current literature on partner notification shows the
efficacy of clinic-based partner notification programs.
Partner notification in slum-based antenatal clinics in
a poor Haitian community was a considerable success. Partner
notification has widespread acceptance in clinical practice,
specifically in genitourinary medicine clinics. In Colorado
and North Carolina, a high success rate was found at confidential
test sites compared to anonymous sites. Their recommendation
is that the local health department should have responsibility
for evaluating and improving partner notification services.
The confidential clinic test sites seem to have greater
efficacy than anonymous test sites (these are run by local
health departments, and less clinic-based) for partner notification
programs
Suggestions
to Improve Partner Notification
The following suggestions are extracted from the literature
on partner notification:
? Use a social system perspective
? Legislative protection of the ethical issues
? targeting people who exchange sex for drugs or money
? Hiring staff from minority ethnic groups and those with
inner city experiences
? Using outreach clinics for difficult-to-reach risk groups
? Flexible usage of patient referral and third party referral
? Tracing of contacts not to exceed a period of more than
two years
? CDC guidelines on partner notification for programs in
receipt of federal funding need to be appraised periodically
? Evaluating partner notification by these criteria: numbers
educated, counseled, and tested per staff person
? Risk-reduction education as a component in partner notification
programs should incorporate a culture of restraint and responsibility,
embracing the norms of each cultural group
? Some persons with AIDS to be recruited, and placed in
appropriate partner notification programs
? Conditional contracting where health professionals present
the patient with an option to have special sexual partners
referred by health workers, or effect self-referral over
a specific period.
A
Social System Perspective
There is consensus that contact tracing is an integral public
health measure used to retard the spread of HIV. Unlike
tracing programs for syphilis, the notification procedures
associated with HIV may be more effective if developed as
systems. Counseling protocols could be enhanced in this
way. In this case, partner notification/contact tracing
programs could incorporate a social system perspective by
utilizing four functions: adaptation, goal attainment, integration,
and latency (pattern maintenance).
Partner notification programs, in effecting the adaptation
function, will include the client?s external situational
exigencies that present themselves to both the client and
partner. These measures may have to be responsive to the
infected individual?s environment, including the person?s
needs. The client/partner is expected to adapt to the environment
as well. But this adaptation may be ineffective when resources
are deficient.
Partner notification procedures will have as their foci
the client/partner-determined short, medium, and long-term
goals, geared toward facilitating the virally-infected individual
to have a socially supportive interface with a humane public
health system. The person?s drives, derived from the social
context, help to shape his/her goals. Partner notification
protocols could be built from three kinds of client/partner
drives: seeking social approval, complying with cultural
standards, and having role expectations. Providers would
require an understanding of the client/partner social context,
in order to utilize these three drives. The implication
is that counselors attached to partner notification programs
must have practical knowledge of the client/partner social
context.
Knowing this social context would yield data on the client/partner
status and role in their social system. Social system is
used to mean the patterns of social relationships between
the client and his partner(s), and also to institutions
of society. The client/partner status and role may assist
them in integrating their personal drives and the societal
value patterns. In effect, we need to understand whether
the individual stricken with the HIV infection is able to
relate to society. A key factor here could be whether this
person needs to make adjustment to the existing socialization
process, or whether there is a need to engage in resocialization.
The patterns of his relationship in his social context would
determine whether socialization or resocialization is needed
to achieve integration with society. Counselors would be
drawn into developing a sense as to how the client/partner?s
social system relates to other pertinent systems; whether
the client/partner?s system receives support from other
systems; whether their system meets the needs of the client/partner;
whether their system allows meaningful participation for
the client/partner; whether their system can cope with an
incurable disease as AIDS; and whether their system has
symbols that provide meaning to client/partner interaction,
in order to persist. Counselors should understand the client/partner?s
beliefs, values, and norms, in a word the individual?s culture.
The person?s culture is incorporated in the adaptation,
goal attainment, integration, and latency functions within
the partner notification protocol. Failure to acknowledge
the individual?s culture would eventually affect the functioning
of the protocol.
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