Vulnerable people who distrust digital


e-privacy

People who are likely to experience discrimination are the most likely to distrust digital health services – and one pharmacist says they may be likely to “pull back” on electronic prescriptions

A new national study from the University of NSW shows that people affected by blood-borne viruses (BBVs) and sexually transmissible infections have lower trust in the move to digital health.

The  Understanding trust in digital health among communities affected by BBVs and STIs in Australia, included survey results from more than 2000 people from around Australia, including 600 people classified as members of one or more populations affected by BBVs and STIs.

People with HIV, trans and gender diverse people, sex workers, and gay and bisexual men reported the lowest levels of trust in digital health care services, such as My Health Record, and the most frequent experiences of stigma.

While these groups reported better knowledge of My Health Record than the general population, they were much more likely to report opting out.

“These communities are highly engaged, well informed and notably reluctant to put their trust in some aspects of digital health,” says Associate Professor Christy Newman, one of the lead investigators from CSRH.

“This suggests that an understanding of the potential benefits of digital systems like My Health Record did not overcome the doubts that these communities considered when opting out.

“More meaningful consultation with affected communities and the peer-based organisations that have their trust is required to ensure that communities affected by stigma and discrimination are not left behind when it comes to digital health.”

Those participants who expressed distrust in digital health also reported having fears relating to the criminalisation of some behaviours related to HIV, sex work and drug use.

These groups reported concerns that personal data and health information related to stigmatised identities or practices could be shared without their consent, placing them at risk.

“I don’t have faith in the federal government creating IT infrastructure with the necessary privacy constraints or kinks worked out just yet,” one survey respondent said.

“If there was some type of alert that I could set up that could allow me to consent or withdraw consent for my data being used for something I’d be fine with that but not people just using my data without my knowledge,” another respondent said.

James MacGibbon, a chief investigator of the project from CSRH, says: “These communities typically fear that their personal information is more easily shared through digital means without the consent of the affected person, with a range of potential social, legal and economic consequences.

“They do not opt out of digital health initiatives because they don’t understand the promise offered by more integrated and effective data management systems. Nor because they do not have need of these improvements.

“They opt out because they are not convinced the potential benefits outweigh the risk to their personal privacy and security, at least in the form in which they have been designed and promoted.”

However, members of stigmatised groups were more likely to access digital health care during the COVID-19 crisis.

Affected groups were also least likely to share personal information with health authorities during the pandemic, but more likely to have made use of digital services to access essential health care.

Affected populations reported higher recent use of online consultations and online pharmacies than the general population respondents.

They were also more likely to report stockpiling essential medications and organising online health consultations in the early weeks of the COVID-19 pandemic.

There were particular fears reported regarding the impacts of the COVID-safe app and contact tracing on communities at risk of criminalisation and discrimination.

“I understand the public health importance of this kind of tracing but I think for historically targeted communities it makes sense to opt out,” one survey respondent said. “As a migrant sex worker, I wouldn’t risk it, no matter how well they think they’re doing with digital security.”

“I simply don’t disclose that I am a sex worker, or trans, or queer/asexual unless it absolutely needed because I have had horrific experiences when doing so previously,” another survey respondent said.

“Queer health in many aspects is incredibly moralised and pathologised in contemporary Australia – I don’t want my data to be collected by any centralised database for whatever use.”

Melbourne addiction medicine pharmacist and former National Councillor of the Pharmacy Guild Angelo Pricolo told the AJP that in his experience, members of these vulnerable groups do express some concern about digital health.

“I remember the first time I confronted a patient with the result of a Real Time Prescription Monitoring (RTPM) check on my computer,” he said.

“As we know RTPM does not tell a clinician what to do, it merely provides information to guide decision making.

“Having said that, confronted with a history of hazardous use it is important the information is considered carefully before dispensing. Like the publican who serves an intoxicated patron, it is essential to consider what happens after handing over the drug. 

“So that very first RTPM conversation threw up many questions in the patient’s eyes: ‘How did you get this information, were you allowed access to it and why wasn’t I first asked for consent?’

“Well, turns out the information not only is legally accessible to pharmacists without seeking consent in the role of providing medication, but it is a legal requirement that we do peruse the file available to us,” he said.

“I think that as pharmacists we have become better at approaching patients and sharing information rather than confronting patients with it. Patients usually react favourably when we tell them that our main endeavour is to keep them safe.

“Nevertheless, there is an element of not wanting to share parts of a medical history to avoid judgement, and of course in the short term, jeopardise access to their drug of choice.

“Having said that, the cases are mounting where the circuit breaker hard discussion of current drug use although initially hard to confront by both parties is more often a weight off the shoulders of a struggling drug user. An opportunity to seek help rather than punishment. 

“Until the benefits of technology are not just explained but actually enjoyed then it is understandable that scepticism of the unknown can loom bigger than the potential upside and possible life saving interventions that follow.

“As we enter an era of Electronic Prescriptions again some patients may pull back from participating initially until the realisation that the technology doesn’t judge, it’s the user of that technology that can create the stigma.”

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