Questions from the Royal Commission: Digital mental health, information and human rights
“You will need to fax it through.”
I put down the phone, confused as a nurse in charge told me that if I were going to get some fact-sheets to a consumer in the inpatient unit, I would need to fax it to them. It was, of course, the nurse told me, the only way to send information securely.
I checked my android phone, and I wasn’t losing my mind (well...), it was just the clinical mental health system.
One of the few things that service providers, consumers, as well as their families, supporters, and carers agree on is that the mental health system’s digital infrastructure is outdated—big time. There has been an earnest hope from many involved to bring information recording and sharing into the 21st century. How that is done, with the maintenance of privacy and confidentiality, is a thornier topic.
Beyond information sharing, there is a lack of digital infrastructure to protect human rights. Clinical mental health services are still the gatekeepers for much of this information. The information available is often developed and disseminated without consumer oversight and is usually reliant on 20th century (paper-based) methods. It’s often not interactive, responsive to a person’s circumstances, or accessible.
There are limited service offerings such as Independent Mental Health Advocacy’s self-help tool and other resources or a reformed Mental Health Tribunal. But the former is a patchwork and not built into the system’s infrastructure. Simultaneously, the latter sees a website as an add-on or external object (a shop-front), with little influence on the design of internal Tribunal processes (e.g., the way that Tribunal hearings should be run) from the user/consumer perspective.
That’s why I was warmed – though wary – of the work in Chapters 34 (integrating digital technology) and 35 (new approaches to information management). Both areas – digital mental health and information management – have the opportunity to improve standards within the mental health system, including addressing power imbalances and breaches of human rights. They do, however, carry risks, such as through the commercialisation of digital mental health and the broader privacy implications of open information sharing and management.
Digital mental health includes digital mechanisms for human rights protection
The Commission’s report hopes that digital mental health will mean better “service offerings” (translation: services) that are either blended with online and offline dimensions.
My interest is in safeguarding and oversight of the mental health system as it relates to human rights.
The report acknowledges the importance of digital self-help tool such as IMHA’s (p. 20, Vol 5), as well as the need for services such as Victoria Legal Aid to be part of all information portals that help people navigate the mental health system (p. 12, Vol 5). Moreover, the Commission has signaled that as part of recommendation 60, that ‘consumers should be able to electronically submit a complaint and easily see its progress through the system.’
This responsibility to create electronic complaints portals should sit with the Mental Health Complaints Commissioner, which will now sit within the Mental Health and Wellbeing Commission. It should ensure, at minimum, a three-tiered system of escalation for complaints:
An option to complain directly to a publicly funded mental health service
An option to complain directly to the Mental Health Complaints Commissioner, and
An option to complain to the Victorian Ombudsman in instances where a breach of the Charter of Human Rights and Responsibility 2006 may have occurred, or where the person disagrees with the handling of a complaint by the Mental Health Complaints Commissioner.
Complaints portals should empower consumers to understand how their concerns fit within their service’s performance. Are they alone in their concerns, or has their service got a history, for example, of failing to seek someone’s informed consent or provide them with choices during their treatment? Given that systems-change is an overwhelming motivation of consumers (as well as families, supporters and carers), placing their story within broader themes is validating. It also redresses, somewhat, the information asymmetries between people who use services (consumers), and the people who provide services (clinical mental health services and the Mental Health Complaints Commissioner).
Behind the consumer-facing part of this complaints process, should be a service access point to resolve complaints internal to a service where a consumer requests – subject to all human rights and privacy constraints. Services should be provided with information about how common complaints fit within a human rights framework, and be provided with actions that may lead to a meaningful resolution for a consumer – actions that are healing and that improve the quality of services to prevent the same errors occurring again.
There should also be anonymous reporting mechanisms, with greater whistleblower protections, for mental health staff to report conduct that is contrary to mental health and human rights laws. This will likely require legislative and policy change under the new Mental Health and Wellbeing Act, but will be crucial to reduce the burden on consumers as complainants and agents for systems-change.
The idea of “chat-bots” interests me, though I’m skeptical of the ability of a bot to provide helpful information to someone in crisis. Perhaps that’s not the right service for the right time, and I’m happy to be wrong!
Navigating systems with human rights in mind
Many consumers can navigate, or perhaps be stuck, within the mental health system for decades without knowing their rights. An independent evaluation of IMHA (p. 18) found that consumers reported a persistent failure of mental health services to provide them with a statement of rights. Being given a statement of rights (with a verbal explanation) is one of the more basic mental health services requirements, which indicates some of the more onerous human rights obligations face significant resistance.
The Commission clearly has this in mind, mentioning the importance of digital mental health for systems accountability and consumer advocacy (p. 12, Vol 5).
As the Commission indicates, it will be crucial that advocacy and legal services, including mental health legal, discrimination, family violence, and housing services are built into digital navigation pathways.
Doing this will be crucial, but it will bring more challenges. Demonstrating the links between mental health and other services will test the ability of those services to co-exist. While user-experience digital technologists will be able to create clear digital pathways, the offline linkages of those services will not be clear in many cases.
Who will handle complaints about this? They are not necessarily complaints about individual services, but instead the linkages between them. There is a clear role here for the Victorian Government to get their hands dirty. Digital navigation technologies will make clear that the “hands-off” devolved system of mental health system governance will not work.
Mental health and wellbeing notes: access and production rights
As people with lived experience, we can live our lives inside a diagnosis. This can be by choice, or it can be imposed on us. For people in the clinical mental health system, particularly those subject to compulsory treatment, this is far more likely to be the latter circumstance.
“Only write what you want to be read later”.
This is often advice given to all people working in helping roles. This can mean that notes are written with a consumer audience in mind, making it more humane, but it may also lead to selective recording.
There are few incentives to write down one’s errors as a mental health professional. A Coroner’s court matter highlighted this recently. Unknown CCTV footage made available to the court revealed that nursing staff’s observation notes did not match their actual behavior or meet their obligations.[1] It was a rare glimpse into the consequences of an asymmetric system of information production.
That is, truth cannot be found when only one side of a story can be told.
This criticism matches what consumers have said in the past. In the Your story, your say report, consumers reported that it was difficult to protect their rights within the current information management system:
‘It’s not easy to exercise your rights when you don’t have any of the information you need. In there I tried to access my own clinical notes, to understand what they were saying about me. Instead they said that I would have to go through this rigorous freedom of information process, to access the notes that they were writing about me! I just gave up. For someone doing worse than me, this would be impossible.
Another person spoke about the impacts this had for them at the Mental Health Tribunal:
‘I have no meaningful way to be involved in how these are written, to see them or to correct them when they are wrong. This then goes to places like the MHT [Mental Health Tribunal] where it defames me.’
Often consumers will need to go through lengthy Freedom of Information processes just to access their own notes, with some consumers reporting that there inconsistent practice around the release of information by various hospitals (p. 79, Vol 5). The Commission highlighted that this often reflected a lack of openness by services (pp. 78-80, Vol 5). This lack of openness is most concerning, considering consumers are locked out of their information, while being locked within closed wards.
I was, therefore, glad to read that recommendation 61.2 will create expectations on services for consumers to easily access and contribute to information held about them. This is part of a broader objective for a new “culture of openness and system learning” (p. 69, Vol 5).
Consumers being able to write their own notes may be crucial for personal recovery, improved therapeutic relationships, reducing the risk of harm arising from care, and ensuring accountability where errors or human rights breaches may have occurred. There is evidence of this emerging across the mental health system. [2] With so many complaints and investigations relying upon clinical notes – a contemporaneous consumer record is crucial for safeguarding and oversight too.
There are many reforms included in this Chapter on information management. Therefore, the government must build this consumer-facing component of clinical notes any new ICT system architecture. The figure on 35.4 doesn’t account for consumer contributions to notes, so advocacy may be required to keep this in policy makers' and designers' minds.
It will also require significant regulatory oversight. With a culture that lacks openness, there will likely be resistance to these changes, therefore complaints bodies and clinical leads will need to give effect policy decisions, and rights to access and contribute to information may need to be more clearly articulated under the new Mental Health and Wellbeing Act.
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[1] See paragraphs 38 to 51 of the Coroner’s into a person’s death at Ballarat Hospital. There were many issues relating to their death, but one was “inconsistencies” between the clinical notes on observations. These inconsistencies were not found or recorded in an internal review of their death which Ballarat Hospital was satisfied dealt with the matter. It was only found later on CCTV, sought by the Coroner, that the clinical notes did not match the time-periods on the vision: http://www.austlii.edu.au/au/cases/vic/VicCorC/2017/119.pdf
[2] Grünloh, C., Myreteg, G., Cajander, Å., & Rexhepi, H. (2018). “Why do they need to check me?” Patient participation through eHealth and the doctor-patient relationship: qualitative study. Journal of medical Internet research, 20(1), e11; Scott, A., & Doughty, C. (2012). “Confronted with paperwork”: Information and documentation in peer support. Journal of Mental Health, 21(2), 154–164. https://doi.org/10.3109/09638237.2011.638002; Sheehan, L., & Lewicki, T. (2016). Collaborative Documentation in Mental Health: Applications to Rehabilitation Counseling. Rehabilitation Research, Policy, and Education, 30(3), 305–320.
