August 2021

Crunching numbers to care for clients: User data is key for NSPs, if they can get it

Identifying an urgent need for secure dispensing units (vending machines) in a country town, charting the uptake of fentanyl strips, tracking the suburban spread of home deliveries during the pandemic, and learning which brand of syringes and needles clients shun – these are just some of the valuable insights that data collection by NSPs around the nation provides.

Day-to-day engagement with people who inject drugs gives NSPs a unique understanding of their needs and issues – and data collection can be a powerful tool in improving and expanding services. But the national picture of how NSPs gather data remains a complex tapestry of approaches, ranging across jurisdictions from a series of questions posed each time a client walks in for equipment to none asked at all, from paper forms to ageing software and touchscreen tablets.

Many NSPs draw on two annual snapshots: the National Minimum Data Collection (NMDC), which involves every state and territory, and the Australian NSP Survey, which tracks hepatitis C and HIV prevalence. Produced by the Kirby Institute since 2016, the NMDC charts annual trends across service provision, needle and syringe distribution, and occasion of service details, such as age, gender and drugs used. As Kirby Institute senior research fellow Dr Jenny Iversen notes, “needle syringe programs greatly enhance blood-borne virus prevention and harm reduction for people who inject drugs, and the NSP NMDC plays a key role in ensuring that these programs remain effective in the prevention of blood-borne viral infections and related harms”.

That comprehensive national picture is crucial in monitoring Australia’s progress towards national and global public health goals. But perfecting nationally aligned reporting on data is likely to remain a thorny issue for a state- and territory-based program like the NSP. Moreover, says Jenny, the main challenge for the NMDC “is that it is not useful to make comparisons within or between jurisdictions without having an in-depth knowledge of the local context”. Many NSP workers agree, saying that in a public health sector driven by local needs, sourcing targeted and current data is more important than ever in driving service delivery.

It’s really important that local services do local research so they can base their service development on their own client base.

Shasi Johnston

At North Coast Public Health, which covers an area of New South Wales from the Queensland border to just south of Port Macquarie, Harm Reduction Officer Shasi Johnston says the aim is to do just that. Their NSP began collecting demographic data on clients two years ago which directly informs service planning. “National research has an important role to play in policy development but frontline services in a rural/regional area need good knowledge of the needs of local community,” says Shasi. “I think it’s really important that local services do local research so they can base their service development on their own client base.” In the absence of strong local data, she says, service planners like her can feel they’re “flying blind”. She knows many of her NSP peers in NSW would love to have the same access to data on their own local needs and trends. “Every community is so different,” Shasi says. “If we want to understand barriers to access, we need to know more about who our cohort is.”

In Queensland, 25 primary services – which together account for 80 per cent of all needles and syringes distributed in the state each year – collect an anonymised, standard set of details from each client every time they access an NSP. “It’s that understanding of what’s going on at the broader level that will ultimately filter down to what improves client outcomes,” says Robert Kemp, Principal Public Health Officer in Queensland Health’s Prevention Division. This data collection has been NSP practice since 2007, building a rich resource for program and campaign development. While providing details is voluntary, Robert says the vast majority of clients don’t bat an eyelid. “We’re in the fortunate position that because we have always collected data of some sort here in Queensland, everyone is used to it,” he says. “I think there’s a problem when you try to introduce data collection as a new thing – there can be a lot of resistance at that point.”

In Western Australia, where data is not routinely sought on each occasion of service, the Department of Health’s Jude Bevan agrees that changing the rules of engagement now could backfire. “We have never had that setup where clients would be asked a series of questions every time they came in,” says Jude. “If services started to ask clients for that information now it may be off-putting for them.” She points to the two national snapshots as key resources giving insights into how WA is tracking against the rest of the nation on service provision, referrals given and per-capita needle and syringe distribution. At a state level, Jude is keen to see a review and upgrade of how NSP data is collected and shared. “Even our distribution database where we collect all our numbers of needle and syringes distributed could do with being modernised,” she says.

Working around outdated data collection systems is familiar to Andy Sinclair, who’s been an NSP worker for more than 20 years and is now in data management at Melbourne’s cohealth, a community health organisation which operates five primary NSP services, two outreach services and four secure dispensing units (SDUs). Entering occasion of service or distribution data into a departmental software system which was last updated in 2006 requires patience – “it struggles to run on modern computers”, as Andy puts it diplomatically. The lack of any regular data feedback to NSPs from the department also acts, Andy says, as an added disincentive for staff and clients.

Snapshot surveys serve as an important data gathering and awareness raising campaign at the same time.

Myf Briggs

Occasional short snapshot surveys are an important tool used in Tasmanian NSPs, says Myf Briggs, Needle and Syringe Program Coordinator in the Tasmanian Department of Health. “These are generally only conducted via the primary NSPs, tend to have only two or three short questions and run for three weeks or until the majority of regular clients have been surveyed,” says Myf. “Snapshot surveys serve as an important data gathering and awareness raising campaign at the same time.” Data is also collected via touchscreen tablets for daily occasions of service in primary outlets, including gender, age, drug intended to inject, how many people a client is collecting for, sharps returns and any brief interventions or referrals that occur. Myf says it was this locally collected data that “directly informed” the decision by the Tasmanian Government to allow naloxone to be distributed by NSPs to clients. “Data collection is extremely important for us,” she says.

While tablets succeed in Tasmania, a trial of iPads for data collection in the ACT yielded unexpected results, says Bronwyn Hendry, CEO of Directions Health Services, which operates the ACT’s two primary NSPs and supplies all secondary outlets, pharmacies and SDUs. While the assumption was that clients would prefer to answer personal questions (including the last drug they’d injected) on an iPad rather than by telling a staff member, feedback showed otherwise. “A lot of clients provided feedback that they felt it was less engaging to use the iPads – they preferred answering those questions face to face,” says Bronwyn. It’s a good reminder, she says, that questions, asked by a skilled worker in an unobtrusive way, can often spark productive conversations.

With a wealth of data collected by Directions Health beyond the NMDS – such as language spoken at home, information on specific regions and local areas, and an extended range or equipment supplied as well as other harm reduction services – Bronwyn sees an essential role for data in achieving the best possible public health outcomes. Directions Health’s NSP Advisory Group uses both data and feedback from clients and workers to shape new initiatives and to target resources such as outreach services, and Bronwyn says she’s keen to see information sharing between NSPs across Australia to replace the “limited interaction” which occurs now. “Just to hear people’s experiences of how they’ve successfully implemented new programs or services or about challenges they’ve faced would be really helpful.”

Andy Sinclair, Jenny Iversen, Bronwyn Hendry

We’re all running our own game at the moment – sharing information would mean we could have better co-ordination of service delivery and outcomes.

Andy Sinclair

Cohealth’s Andy Sinclair agrees: “We’re all running our own game at the moment – sharing information would mean we could have better co-ordination of service delivery and outcomes.”

In Queensland, Robert Kemp says he hopes the move under way there from a paper-based system to an electronic database will open up access and collaborative research opportunities. “I’ve always been a bit disappointed that our data hasn’t been utilised by researchers more than it has,” says Robert. “There’s certainly potential for more dissemination of that information.”

David Decolongon, Principal Policy Officer in the Northern Territory’s Public Health Directorate, points out that up-to-date data can flag emerging trends, such as enabling NSP outlets to provide naloxone. “It means we can have a system in place which is scalable rather than trying to build one after strong opioids like fentanyl have already been found to adulterate the illicit drug market in the Territory,” In the NT, with its vast geographical spread, large cohort of travellers and low population density, data is collected through its three primary NSPs and 10 secondary NSPs. Assessing trends in regional areas is more challenging. Information from client questionnaires at secondary services (which might sometimes be only a trolley or a cupboard in a busy hospital emergency department) can be inconsistent due to the voluntary nature of the data collection. But David says insights from data have led to service upgrades, including the imminent installation of SDUs in three regional population centres.

In Sydney, Kirketon Road Centre NSP and Outreach Manager Nick Rich says the scope of information collected at many NSPs has barely changed in the past 30 years. “Tweaking how we collect data is about having the resources and the time to do that,” he says. “But I’m keen to extend the continuum of services we offer – and as we do that we have to accept that we have to change some of our ideas around information gathering.” Nick says keeping services responsive and equitable requires smarter, more detailed data collection. “It’s about getting the right syringe to the right person at the right time.”

That drive to improve the lives of individuals through harm reduction is at the core of NSP work. Data collection’s role in that effort is fundamental and there’s enormous potential to do more of it, says cohealth’s Andy Sinclair, but only if it’s done without deterring the communities these programs exist to help. “The quantitative data is really useful,” Andy says, “but at the end of the day there’s no substitute for skilled workers paying attention to who’s walking in the door and engaging with them to find out what their needs are.”

– Lisa Clausen