Strategic information is everyone’s business: perspectives from an international stakeholder meeting to enhance strategic information data along the HIV Cascade for people who inject drugs

Introduction

Injecting drug use is the most efficient mode of transmitting HIV and viral hepatitis,
and people who inject drugs (PWID) are disproportionately affected by HIV because
of behaviors influenced by individual, network, and structural factors 1]–3]. However, stigma and criminalization of drug use and the attendant difficulty measuring
these factors confound efforts to compile much-needed HIV epidemiologic data among
PWID, including prevalence, testing frequency, and, for PWID diagnosed with HIV, transition
into care and treatment retention 4]–6]. This lack of strategic information (SI)—defined as the systematic collection, analysis,
and dissemination of information to optimize programming—hinders our ability to design
effective programming interventions for, and address the needs of, PWID. Deficiencies
in SI and attendant weaker programming will likely impede progress toward the UNAIDS
“90-90-90” targets by 2020, which are that 90 % of all people living with HIV (PLHIV)
will know their HIV status, 90 % of all PLHIV will receive sustained antiretroviral
therapy (ART), and 90 % of those receiving ART will have achieved viral suppression
7].

To identify gaps in this process and recommend approaches to optimize SI collection
and use for PWID programming, the meeting “People Who Inject Drugs: Strategic Information
to Reach the 90-90-90: A Global Conversation to Review the Evidence And Recommend
Improved SI Practices to Inform The Cascade” was convened. This commentary conveys
key meeting points and recommendations from a variety of perspectives, with the goal
of rectifying SI deficiencies, identifying innovative data-driven programming approaches,
and integrating respectful practices into PWID SI and programmatic activities to optimize
achievement of 90-90-90 goals for PWID.

Setting

Fifty-one subject matter experts in PWID advocacy, harm reduction, and HIV surveillance
and monitoring met in Bangkok, Thailand, on May 15, 2015. The meeting was hosted by
LINKAGES, a global project funded by the United States Agency for International Development
(USAID) and the President’s Emergency Plan For AIDS Relief (PEPFAR) and dedicated
to key populations (KPs)—PWID, sex workers, men who have sex with men, and transgender
people 8]. This meeting was a satellite meeting to the UNAIDS and WHO-convened Third Global
HIV Surveillance Consultation (May 12–14) and all attendees were invited, as were
harm reduction implementers and PWID advocacy group representatives identified by
meeting organizers and LINKAGES technical staff. Attendees represented a wide variety
of groups, including donor organizations (e.g., Global Fund to Fight AIDS, Tuberculosis
and Malaria, USAID), United Nations agencies (UNAIDS, UNODC), non-government organizations,
harm reduction-implementing organizations, academia, and national, regional, and global
PWID advocacy groups; most of the latter two groups were from Asia.

The interactive meeting comprised a review of gaps in epidemiologic data among PWID
and a formal presentation on SI limitations and population size estimate approaches,
followed by panel discussions addressing (1) PWID community involvement in SI collection
and use and (2) challenges/solutions to indicator choices and use of programmatic
data to inform indicators from an implementers’ perspective. Meeting participants
then divided into four groups to discuss gaps and potential solutions to SI content
relevant to PWID (Table 1). The proceedings were transcribed, and main points are summarized in this article;
no other documents were produced.

Table 1. Key strategic information gaps and proposed solutions for people who inject drugs
identified within small group discussion

Controversies and gaps in HIV epidemiology among PWID

Current global HIV prevalence data among PWID belie substantial variance in sub-epidemics
and in national reporting approaches. Many countries do not submit single national
HIV prevalence figures for some or all KPs, and some countries do not have updated
data for international analysis 9]. National prevalence data are typically gathered from integrated bio-behavioral surveys
(IBBS), which are conducted in areas, usually large cities, with known high rates
of drug use. Other methods of obtaining prevalence data include sentinel surveillance
and case reporting. As a result, these estimates may not reflect the entire country
or account for emerging epidemics. For example, the Kenyan IBBS in Nairobi and Mombasa,
cities with documented large drug user populations, reported HIV prevalence of 30 %
among PWID. However, in Kisumu, Kenya, which was not included in national data collection,
ethnographic research detected a new, hidden population of PWID among whom HIV prevalence
was 19 % 10]. Therefore, it may not be wholly accurate to rely solely on national-level data for
HIV prevalence among PWID or to make programming and funding decisions without considering
local and regional trends in HIV prevalence and risk behaviors.

Similar issues are present for estimating PWID population sizes, as regional and global
estimates are impacted by outdated or insufficient data. Forty countries included
in a 2014 global harm reduction assessment did not provide national PWID population
size estimates within the last 8 years. By region, Eurasia was found to have some
of the strongest reporting and service delivery programs, while, in Asia, 60 % of
25 reporting countries submitted outdated figures, in some cases from 2001 11]. This lack of recent data raises two concerns: that neither meaningful HIV data collection
on PWID nor HIV prevention among PWID are political priorities within these countries.

Choosing the best SI approach

Data collection methods to inform HIV programming for PWID must be scientifically
robust and context- and population-appropriate. For example, locations with small
PWID populations, but potentially explosive epidemics, are not well represented within
IBBS. Further, specific sub-populations of PWID, such as adolescent and young PWID
and females who inject drugs are poorly represented within IBBS, even when using chain-referral
sampling methods. At the meeting, presenters suggested conducting targeted surveys
for these vulnerable groups as well as including youth in future adult studies by
broadening age eligibility. Though parental consent is necessary in many settings,
many countries are reducing the age requiring parental consent for HIV testing and
counseling, which could open an effective avenue for countries to allow surveys among
adolescent KPs.

Female PWID also are often under-represented in some SI approaches, such as surveys
using respondent-driven sampling (RDS). Women who inject drugs tend not to have robust
social networks, compared to men, and are often excluded from analysis. As a result,
little or no data are collected about the magnitude of their HIV burden. In Vietnam,
females were excluded in both sentinel surveys and the 2012 IBBS due to sampling barriers,
and in Myanmar, RDS referral chains often terminated at female participants. New strategies,
or perhaps more qualitative data, are thus needed to collect actionable SI from women
who inject drugs.

Case reporting or collection of harm reduction programmatic data may be more feasible
as it allows for the collection of local level data that are eventually reported to
national-level health officials 12]. Methodologic questions to consider when selecting an SI approach are: “What is the
definition of PWID and how does this change by context?” “Will it be regional or ‘hot-spot-based’
within countries?” and “What are the data sources and are data quality and focus appropriate?”
However, responses to these diverse HIV epidemics require denominators to measure
the number of people living with HIV for a given KP, a pillar in the HIV Cascade.
One way to estimate these denominators, as well as inform other Cascade components,
is to ask participants about their HIV status in IBBS or similar surveys 13]. Consistent concerns collecting SI data include sensitivity in asking people about
their drug use and HIV status and assuring confidentiality in reporting them, especially
given the potential to further criminalize and stigmatize this population.

To reach 90-90-90 goals, SI systems for PWID need to move to a “treatment-oriented”
approach, increasing the value of case-based reporting and following cases through
the HIV Cascade. Case-based reporting raises confidentiality concerns as reporting
requires following individuals “through the system” and necessitates the use of unique
identifiers. Another option for obtaining data for monitoring the HIV Cascade is to
use programmatic harm reduction data. However, program data does not perfectly overlap
with HIV Cascade indicators; for example, HIV testing may occur within harm reduction
programs, but care and treatment services are provided at separate sites with no formal
data linkage to allow follow-up through the Cascade. Double counting is also an issue,
which could be overcome by using unique identifiers and recall of last testing site
and date, with attendant confidentiality concerns.

Collaborative approaches to integrating PWID in SI data selection and collection

Within the “90-90-90” initiative, respect for human rights is prominent—including
involvement of KP groups in collecting SI. PWID are the best resource for learning
how to provide services to peers, and their involvement in data collection is critical
for ensuring a rights-based approach. Based on their personal experience with criminalization
and stigma associated with drug use and further HIV-associated stigma, PWID advocacy
group representatives at the meeting recommended that they be treated as partners
in, rather than just subjects of, research and SI data collection.

One way to ensure collaboration is to improve the capacity of community-based, constituency-led
organizations to: engage in survey data collection, analysis, and dissemination; documentation;
and monitoring and evaluation. A successful example of this principle in practice
is the Persaudaraan Korban Napza Indonesia (PKNI)/Indonesian Drug User Network. Beginning in 2007, PKNI, in collaboration with
Oxford University, initiated Perempuan Bersuara/“Women Speak Out,” a cross-sectional study among approximately 700 females who inject
drugs to investigate factors associated with HIV risk among this subgroup. PKNI established
a community advisory group comprising females who inject drugs to inform questionnaire
design and guide ethical and operational study aspects. The community-led team received
ongoing capacity building in research methods and data interpretation from researchers,
allowing them to develop marketable skills and knowledge while playing a significant
role in the study’s implementation. This collaborative approach resulted in a strong
sense of community ownership of the research and active participation from female
respondents in the project.

Criminalization of drug use is a major barrier to collaboration with PWID. In Indonesia,
for example, the inclusion of PWID in SI collection is affected by a new “War on Drugs.”
Between 2014 and 2015 in Jakarta, Bogor, and Bandung, community interviewers reported
harassment by National Narcotics Board officers and the police, including raids, random
urine testing, and arrest threats during interviews. Such incidents led to lower recruitment
rates because of increased distrust and fear by participants of providing information
to researchers, potentially resulting in reporting bias and less reliable outcomes.

Novel models for improved SI collection and utilization

Capturing data to inform all Cascade indicators is challenging and involves aggregation
of clinical data up to the national level. This requires a mechanism for centralization
of data and consistency between data collection methods across multiple programs.
Two supply-side intervention models to improve HIV testing uptake, diagnosis, and
enrollment in care, specifically through increasing numbers of PWID reached and tested,
were presented from Vietnam. In urban areas, the “Fansipan Challenge” model recruited
opiate substitution therapy clients, most of whom inject, to bring friends or sexual
partners for HIV testing, and those testing positive to be enrolled in care and treatment.
This model rewards clients for each referral completing testing and subsequent referrals
with points and phone credit, structured as a contest to climb Fansipan, Vietnam’s
highest mountain 14]. For rural areas, a direct referral model was tested in mountainous provinces near
the Lao border, where drug trafficking and injecting use are common and care and treatment
commensurately low. This model offers hamlet health worker incentives for successful
referral for mobile and facility-based HIV counseling and testing, identification
of HIV-positive individuals, and re-engaging known HIV patients who were lost to care.
In both models, unique identifiers were used to track individuals across the HIV Cascade,
and questionnaires included more questions (picture-based) on high-risk behaviors
to provide meaningful SI contributions.

Scaling up successful program models and the accompanying SI concerns were also discussed.
One panelist described the transition of harm reduction programming from small programs
operated by civil society organizations to implementation of the same model by state
and national government. While this transition is in process, SI and operations research
has identified gaps in quality of care, through lack of or insufficient number of
syringes received from needle and syringe distribution and collection programs and
low ART uptake among clients living with HIV. This example of using SI to improve
service quality is directed toward creating public-private partnerships and improving
political will to provide quality services and enhance 90-90-90 outcomes.

Small group discussions

This meeting also included four small group discussions on gaps related to and recommendations
for SI collection for four content areas. Table 1 summarizes key gaps and recommendations. Topics assigned to each group did not allow
for frequent overlap in recommendations, but several key themes were present from
all groups. These themes included the following: (1) the need for integration of Cascade
indicators into PWID programming, potentially with merged harm reduction and HIV management
services; (2) expanding the role of peers within the PWID community to improve testing
coverage; (3) linkages to and retention in care; and (4) respectful SI collection
and interpretation.

Conclusions

Reaching PWID populations for HIV prevention, diagnosis, and treatment and tracking
them through the HIV Cascade of services is challenging due to persistent barriers
from governments, society, and health systems. PWID are highly stigmatized, criminalized,
and hidden, posing significant challenges to estimating their population sizes and
HIV prevalence and assessing their prevention, care, and treatment needs. This meeting
delineated these challenges and sought consensus on ways to derive more accurate data,
identify data gaps related to service uptake along the HIV Cascade, and outline SI
methods to better monitor and improve the prevention and treatment needs of PWID to
support 90-90-90 goals. One key output was consensus around the need to use programmatic
data, with the caveat that PWID-centered programs must be held accountable for reporting
accuracy, potentially through assessments by a third party. There was clear consensus
on the need to involve the PWID community in SI data collection.

Finally, participants agreed that harm reduction program client confidentiality must
be maintained and respected. Linking data between harm reduction programs and HIV
care and treatment services is critical, and models utilizing unique codes or other
approaches that respect client anonymity need to be piloted and expanded if successful.
The meeting concluded with final comments that SI must have direct application to
program utilization and improvement, as the data are meant to serve the clients and
community. The closing message from the meeting was that “SI is everyone’s business,”
reflected by the importance of identifying the best surveillance methods and HIV prevention,
care, and treatment program monitoring for PWID for filling the gaps in the HIV Cascade
and realizing the 90-90-90 goal.