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

People who inject drugs (PWID) are at increased HIV transmission risk because of unsafe injecting practices and a host of other individual, network, and structural factors. Thus, PWID have a great need for services within the Cascade of HIV prevention, diagnosis, care, and treatment (HIV Cascade). Yet the systems that monitor their progress through the Cascade are often lacking. Subsequently, fewer reliable data are available to guide programs targeting this key population (KP). 

Programmatic data, which are helpful in tracking PWID through the Cascade, also are limited because not all countries have harm reduction programming from which to estimate Cascade indicators. Also, due to stigma and the illegal nature of drug use, PWID may not disclose their drug use behavior or HIV status when accessing services. Consequently, PWID appear to have low HIV testing rates and, for those living with HIV, lower access to health services and lower viral suppression rates than do other KP groups. 

This commentary, based on outcomes from an international stakeholder meeting, identifies data gaps and proposes solutions to strengthen strategic information (SI), the systematic collection, analysis, and dissemination of information, to optimize HIV prevention, care, and treatment programming for PWID.

Table 1
Key strategic information gaps and proposed solutions for people who inject drugs identified within small group discussion
Group number	Discussion topic	Identified gaps	Recommendations
1	Identifying, reaching, and testing people who inject drugs (PWID)	● Populations of females who inject drugs are underrepresented	● Programs should also be able to identify emerging risk behaviors; they could gather information in both formal and informal ways
		● Population size estimates are not accurate	● Separate Cascades would allow data collectors to capture subgroups within the larger PWID groups
		● Delays in estimating population size within surveys are slowing testing and uptake because services are not provided where PWID are located	● Use programs more strategically for data collection along the Cascade
		● Reach of programs depends on political and legal environments. There is limited information from closed settings, such as prisons	● Use peer educators and PWID drop-in centers for care and support
			● Link with hospitals and other treatment sites for referrals
2	Testing PWID and enrolling them in care and treatment	● Limited data on how many PWID living with HIV are actually in care and treatment	● Community-based testing should be scaled up
		● Lack of linkages between PWID-focused programming and HIV care and treatment programming	● Scale up the use of HIV rapid tests using oral fluid samples, which are more convenient and preferable to most people
		● Stigma and discrimination prevent members of key populations from seeking testing services	● Periodically test MMT clients for HIV when they receive their methadone
		● Challenges in ensuring anonymity when tracking people along the Cascade	● Use a mix of different approaches, different entry points into the Cascade in SI collection
		● The testing service delivery model could be more targeted	● Mix program and surveillance, community support, and case management
3	Gaps in strategic information; challenges and solutions for retention of PWIDs in care and treatment	● Uneven coverage of drug dependence treatment and OST	● Integrated MMT and ART services
		● Uneven coverage of peer/family/social support	● Establish models of peer-administered ART delivery or limited peer-peer interventions to improve adherence
		● Difficult to disaggregate data by risk behavior or key population group	● Ask clinicians to collect risk group/behavior status
		● Information by risk group is not used to inform the Cascade	● In IBBS/surveys, include biomarkers for ART use in testing and data collection to inform ART uptake and viral suppression pillars within the Cascade
		● Lack of data on reasons for loss to follow-up and on mortality
4	Respectful approaches to data collection	● “Respectful” can mean different things to different people	● Protect PWID identities through encryption and unique identifier codes
		● There are different clearance requirements for different countries	● Adopt the human rights framework for SI activities
		● The meaning of community can vary, and this can challenge how PWID communities are integrated in data collection	● Consider the community-based participatory research framework
		● It can be difficult to guarantee anonymity	● Ensure that services are available for the kinds of problems that are being investigated. For example, needle distribution and MMT programming should be identified before initiating a study that intends to refer participants to these services upon request
		● How to get people to disclose behaviors/practices that are criminalized	● Require funders of research to accept responsibility for guaranteeing anonymity

Pierce et al.

Pierce et al. Harm Reduction Journal 2015 12:41   doi:10.1186/s12954-015-0073-y

Full article at:  http://goo.gl/ftqQeR

By: Richard D. Pierce¹, Jennifer Hegle², Keith Sabin³, Edo Agustian⁴, Lisa G. Johnston⁵,Stephen Mills⁶ and Catherine S. Todd^6*

¹85 Sukhumvit Soi 13, #5B, Bangkok, Thailand

²FHI 360, 359 Blackwell Street, Suite 200, Durham 27701, NC, USA

³Joint United Nations Programme on HIV/AIDS (UNAIDS), 20, Avenue Appia, Geneva 27, Switzerland

⁴Persaudaraan Korban Napza Indonesia (PKNI)/Indonesian Drug User Network, Jalan Tebet Timur Dalam XI No. 94 Tebet, Jakarta Selatan 12820, Indonesia

⁵64 Nieuwezijds Voorburgwal, Amsterdam SC1012, Netherlands

⁶FHI 360 Asia-Pacific Regional Office, 19th floor, Sindhorn Building, 130-132 Wittayu Road, Bangkok 10330, Thailand

  

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