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Can open data disrupt power relations in health and enhance consumer participation?

VALA Libraries, Technology and the Future invited my fabulous colleague from Melbourne University Fiona Tweedie and I to participate in a webinar discussion as part of Open Access Week. The webinar was hosted by VALA President, Katie Haden. VALA are an independent Australian based not-for-profit organisation that aim to promote the use and understanding of information technology within libraries and the broader information sector.

Is “Open” always “Equitable”?

The theme for Open Access Week for 2018 is ‘Designing equitable foundations for open knowledge.’ But open systems aren’t always set to a default of ‘inclusive’, and there are important questions that need to be raised around prioritisation of voices, addressing perpetual conscious and unconscious bias, and who is excluded from discussions and decisions surrounding information and data access. There are also issues of the sometimes-competing pressures to move toward both increased openness and greater privacy, the latter issue having much currency in the health domain (and more broadly) at present.

  • If we default to inclusive, what does that look like?
  • How do we address conscious and unconscious bias?
  • How do we prioritise voices, identify who is included and/or excluded from discussions?
  • How do we address the pressure to move toward both increased openness and greater privacy, particularly in the area of health data?

You can download the mp4 file of the webinar, or read a summary of what I had to say below.

Most of what I have learned about how to be a good nurse has come from the consumers I have worked with in my clinical practice. I think the people that live most closely to a phenomenon have a unique microscopic vantage point and that as a researcher and clinician, complementing this lived experience with a telescopic view allows us to see both the big picture and the lived experience. Similarly, my experience of innovations in health have been consumer driven: the initiation of text reminders in a health organisation I used to work for because newly arrived Sudanese women asked for it; health promotion activities that included fun and community building, because Pasifika people in South Auckland wanted something more communal. So I am interested in the emergence of data and technology as democratising enablers for groups that experience marginalisation. Consumers with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) who challenged the influential £5m publicly funded PACE trial which shaped research, treatment pathways and medical and public attitudes towards the illness are an example of how making data open and transparent can be transformative.

The PACE trial found that Cognitive Behavioural therapy (CBT) and Graded Exercise Therapy (GET) achieved 22 percent recovery rates (rather than just improvement rates) as opposed to only seven or eight percent in the control groups who did not engage in CBT and GET. The findings contradicted with the experiences of consumers, who suffered debilitating exhaustion after activities of daily living. A five year struggle by Australian Alem Matthees and supported by many scientists around the world who doubted the study’s conclusion resulted in Queen Mary University of London releasing the original data under the UK Freedom of information (FOI) Act at a cost of £250,000. When challenged about the distress that this had caused patients with ME/CFS the researchers claimed to be concerned about the ethics of sharing the data. However, Geraghty (2017) points out:

did PACE trial participants really ask for scientific data not to
be shared, or did participants simply ask that no personal identifiable information (PIIs) be disclosed?

Subsequent reanalysis showed recovery rates had been inflated  and that the recovery rates in the CBT and GET groups were not significantly higher than in the group that received specialist medical care alone. One of the strategies for addressing the lack of transparency in science is to make data open (particularly if another £5m is unavailable to reproduce the study), sharing data, protocols, and findings in repositories that can be accessed and evaluated by other researchers and the public in order to enhance the integrity of research. Funding bodies are now increasingly making data-sharing a requirement of any research grant funding.

https://forbetterscience.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/

By Leonid Schneider

This story captures the value proposition of making health data open, it can: hold healthcare organizations/ providers accountable for treatment outcomes; help patients make informed choices from options available to them (shared decision making); improve the efficiency and cost-effectiveness of healthcare delivery; improve treatment outcomes by using open data to make the results of different treatments, healthcare organizations, and providers’ work more transparent; be used to educate patients and their families and make healthcare institutions more responsive; fuel new healthcare companies and initiatives, and to spur innovation in the broader economy (Verhulst et al, 2014).

The growing philosophy of open data which is about democratising data and enabling the sharing of datasets has been accompanied by other data related trends in health including: big data-large linked data from electronic patient records; streams of real-time geo-located health data collected by personal wearable devices etc; and new data sources from non-traditional sources eg social and environmental data (Kostkova, 2016). All of which can be managed through computation and algorithmic analysis. Arguments for open data in health include that because tax payers pay for its collection it should be available to them and that the value of data comes from being used by interpreting, analysing and linking it (Verhulst et al., 2014).

According to the open data handbook, open data refers to:

A piece of data or content is open if anyone is free to use, reuse, and redistribute it — subject only, at most, to the requirement to attribute and/or share-alike.

Usually it has three main features:

Availability and Access: the data must be available as a whole and at no more than a reasonable reproduction cost, preferably by downloading over the internet. The data must be available in a convenient and modifiable form.

Reuse and Redistribution: the data must be provided under terms that permit reuse and redistribution including the intermixing with other datasets.

Universal Participation: everyone must be able to use, reuse and redistribute – there should be no discrimination against fields of endeavour or against persons or groups.

Central to which is the idea of interoperability, whereby diverse systems and organizations can work together (inter-operate) or intermix different datasets.

Here are two useful examples of open data being used for the common good. The first concerns statins, which are widely prescribed and cost more than £400m out of a total drug budget of £12.7 billion pounds in England. Mastodon C (data scientists and engineers), The Open Data Institute (ODI) and Ben Goldacre analyzed how statins were prescribed across England and found widespread geographic variations. Some GPs were prescribing the patented statins which cost more than 20 times the cost of generic statins when generics worked just as well. The team suggested that changing prescription patterns could result in savings of more than 1 billion pounds per year. Another study showed how asthma hotspots could be tracked and used to help people with asthma problems to avoid places that would trigger their asthma. Participants were issued with a small cap that fit on a standard inhaler, when the inhaler was used, the cap recorded the time and location, using GPS circuitry. The data was captured over long periods of time and aggregated with anonymized data across multiple patients to times and places where breathing is difficult, that could help other patients improve their condition(Verhulst et al, 2014).

Linking and analysing data sets can occur across the spectrum of health care from clinical decision support, to clinical care, across the health system, to population health and health research. However, while the benefits are clear, there are significant issues at the individual and population level. In this tech utopia there’s an assumption of data literacy, that people who are given more information about their health will be able to act on this information in order to better their health. Secondly, data collected for seemingly beneficial purposes can impact on individuals and communities in unexpected ways, for example when data sets are combined and  adapted for highly invasive research (Zook et al, 2017). Biases against groups that experience poor health outcomes can also be reproduced depending on what type of data is collected and with what purpose (Faife, 2018).

The concern with how data might be deployed and who it might serve is echoed by Virginia Eubanks Associate Professor of Political Science at the University at Albany, SUNY. Her book gives examples of how data have been misused in contexts including criminal justice, welfare and child services, exacerbating inequalities and causing harm. Frank Pasquale in a critique of big data and automated judgement has identified how corporations have compiled data and created portraits using decisions that are neither neutral or technical. He and others call for transparency, accountability and the protection of citizen’s rights by ensuring algorithmic judgements are fair, nondiscriminatory, and open to criticism. However, it is difficult for people from marginalised groups to challenge or interrogate systems or seek redress if harmed for example through statistical aggregation, so fostering dissent and collaboration by public authorities is necessary. Groups with the worst health outcomes have limited access to interventions or the determinants of health to begin with. So, it’s important to ensure that policy and regulation drive structural changes rather than embedding existing discrimination that exposes minority groups to increased surveillance and marginalisation (Redden, 2018).

The advent of Australia’s A$18.5 million national facial recognition system, the National Facial Biometric Matching Capability will allow federal and state governments access to access passport, visa, citizenship, and driver licence images to rapidly match pictures of people captured on CCTV “to identify suspects or victims of terrorist or other criminal activity, and help to protect Australians from identity crime“. The Capability is made up of two parts, the first comprises a Face Verification Service (FVS) which is already operational and allows for a one-to-one image-based match of a person’s photo against a government record. The second part is expected to come online this year and is the Face Identification Service (FIS), a one-to-many, image match of an unknown person against multiple government records to help establish their identity. Critics are concerned at the false positives that similar technologies have found elsewhere like the US and their failure to prevent mass shootings.

Me checking out the biometric mirror at Uni Melb

Me checking out the biometric mirror an artificial intelligence (AI) system to detect and display people’s personality traits and physical attractiveness based solely on a photo of their face. Project led by Dr Niels Wouters from the Centre for Social Natural User Interfaces (SocialNUI) and Science Gallery Melbourne at University of Melbourne.

Context is also important when considering secondary use of data. Indigenous voices like Kukutai observe that openness is not only a cultural issue but a political one, which has the potential to reinforce discourses of deficit. Privacy also has nuance here, public sharing does not indicate acceptance of subsequent use. Group privacy is also important for those groups who are on the receiving end of discriminatory data-driven policies. Open data can be used to improve the health and well being of individuals and communities. The efficiencies and effectiveness of health services can also be improved. Open data can also be used to challenge exclusionary policies and practices, however consideration must be given to digital literacy, privacy and how conditions of inequity might be exacerbated. Importantly, ensuring that structural changes occur that increase the access for all people to the determinants of health.

References

  • Eubanks V. Automating Inequality: How High-Tech Tools Profile, Police, and Punish the Poor. St. Martin’s Press, 2018.
  • Faife C. The government wants your medical data. The Outline, https://theoutline.com/post/4754/the-government-wants-your-medical-data (2018, accessed 16 October 2018).
  • Ferryman K, Pitcan M. Fairness in Precision Medicine. Data and Society, https://datasociety.net/wp-content/uploads/2018/02/Data.Society.Fairness.In_.Precision.Medicine.Feb2018.FINAL-2.26.18.pdf (2018).
  • González-Bailón S. Social science in the era of big data. POI 2013; 5: 147–160.
  • Kostkova P, Brewer H, de Lusignan S, et al. Who Owns the Data? Open Data for Healthcare. Front Public Health 2016; 4: 7.
  • Kowal E, Meyers T, Raikhel E, et al. The open question: medical anthropology and open access. Issues 2015; 5: 2.
  • Krumholz HM, Waldstreicher J. The Yale Open Data Access (YODA) project—a mechanism for data sharing. N Engl J Med 2016; 375: 403–405.
  • Kukutai T, Taylor J. Data sovereignty for indigenous peoples:current practice and future needs. In: Kukutai T TaylorJ , ed. Indigenous Data Sovereignty: Toward an Agenda. Acton,Australia: ANU Press; 2016: 1–22
  • –Lubet S. How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma. The Conversation, 2017, http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890 (2017, accessed 22 October 2018).
  • –Pitcan M. Technology’s Impact on Infrastructure is a Health Concern. Data & Society: Points, https://points.datasociety.net/technologys-impact-on-infrastructure-is-a-health-concern-6f1ffdf46016 (2018, accessed 16 October 2018).
  • –Redden J. The Harm That Data Do. Scientific American, 2018, https://www.scientificamerican.com/article/the-harm-that-data-do/ (2018, accessed 22 October 2018).
  • –Tennant M, Dyson K, Kruger E. Calling for open access to Australia’s oral health data sets. Croakey, https://croakey.org/calling-for-open-access-to-australias-oral-health-data-sets/ (2014, accessed 15 October 2018).
  • –Verhulst S, Noveck BS, Caplan R, et al. The Open Data Era in Health and Social Care: A blueprint for the National Health Service (NHS England). http://www.thegovlab.org/static/files/publications/nhs-full-report.pdf (May 2014).
  • –Yurkiewicz I. Paper Trails: Living and Dying With Fragmented Medical Records. Undark, https://undark.org/article/medical-records-fragmentation-health-care/ (2018, accessed 23 October 2018).
  • –Zook M, Barocas S, Crawford K, et al. Ten simple rules for responsible big data research. PLoS Comput Biol 2017; 13: e1005399.
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Book review: This Bridge called my back

I have been a long-time fan of the New Zealand Mental Health Foundation. Starting in 1996 I did some workshops in Northland and around for the community about Depression, while I worked in perinatal mental health. Later, I co-produced a brochure about perinatal mental health for them. So, when the fabulous Kim Higginson asked me if I would feature in a new section on their website, I had to say yes! In My Kete features book reviews and stories from people in the mental health sector sharing what they have found most helpful in their own work and lives. The word/kupu “kete” symbolises the sharing of knowledge and prosperity.

Ceramic kete gifted to me with found sulphur crested cockatoo feathers

Long before social media, my family would eagerly watch the 6pm news. As new migrants to Aotearoa, we would watch with anticipation for even a tiny glimpse of the places we had left behind, that we were connected to. Goa, our turangawaewae, the home of our ancestors, or Tanzania or Kenya, where we had all been born and lived. But it was the seventies, and the closest we ever came was hearing about the famines in Ethiopia and civil war in Angola, until the Montreal Olympics of 1976. We couldn’t wait for the Kenyan and Tanzanian runners like Filbert Bayi to absolutely smash all the other athletes. We knew they were the best!

Our anticipation was thwarted by bigger events. The New Zealand All Blacks had been playing rugby in apartheid South Africa despite the United Nations’ calls for a sporting embargo. 28 African countries led by Tanzania decided to boycott the games after they had asked the International Olympic Committee (IOC) to exclude New Zealand from the Games and were refused. The United Nations secretary-general said he recognised the “deep and genuine concerns” felt by African countries but, “at the same time I wish to point out that the Olympic Games have become an occasion of special significance in mankind’s search for brotherhood and understanding.”

The story about the Olympics shows how keen I was to see anything of my world reflected to me through the collective sphere or mass media. But this was rare, and when I did see something, it was often a globalised reflection of famine, disease or deficit. So I turned to literature. I was a frequent visitor to Titirangi Library in West Auckland, where I discovered Ms Magazine and read every issue I could get my hands on. Through authors like Germaine Greer and Andre Dworkin, I read that white feminism was good and brown women were oppressed by their cultures. I struggled to reconcile this idea of brown men as bad. The men I knew in my community (who were very few in NZ in those days), were also struggling with racism, economic disadvantage and white supremacy. My Dad worked two jobs (as a teacher and then as a cleaner) so that my mother could study to become a teacher. He then came home and did the cooking, while my three sisters and I administered the household so that my mother could study, and our collective free time could be spent on family outings.

Reading This Bridge Called My Back was life changing. For the first time, I saw women of colour foregrounded. They were powerful, knowing, wise, and full-bodied; not deficient, in need of rescuing or pathological. I saw them navigating complicated worlds that were not built for them. I saw collective struggles and collective joy. These stories resonated with me so much I developed a desire for collective solidarities, which led to conference organising (for refugees and Indian social service professionals) and connecting and bringing diverse voices together (the Aotearoa Ethnic Network). I moved beyond exploring gender and incorporated other axes of difference including race, class and sexuality into my academic life. I still carry this work with me as I think about race and health as a researcher. I remain indebted to the solidarities that were brought together in this anthology, for giving me hope and pride in my differences, while also reminding me to always think about who and what is missing from the room, whose voices are not heard and how this can be remedied.

Book Details
Moraga, Cherríe., & Anzaldúa, G. E. (eds.). (1981). First edition. This bridge called my back: Writings by radical women of color. Persephone Press. ISBN 978-0930436100
Moraga, Cherríe., & Anzaldúa, G. E. (eds.). (2021). This bridge called my back: Writings by radical women of color. Fortieth Anniversary Edition. Suny Press. ISBN: 9781438488288

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Review: Nurses’ views on the impact of mass media on the public perception of nursing and nurse–service user interactions

This is a review of paper published in the Journal of Research in Nursing about Nurses’ views on the impact of mass media on the public perception of nursing and nurse–service user interactions by Louise P Hoyle, Richard G Kyle and Catherine Mahoney. Cite as: De Souza, R. (2017). Review: Nurses’ views on the impact of mass media on the public perception of nursing and nurse–service user interactions . Journal of Research in Nursing, 0(0) 1–2. https://dx.doi.org/10.1177/1744987117736600

Mass media comprises the storytellers and portrayers of our social worlds (Nairn et al., 2014), and has a central role in reproducing the contradictory views held about nurses by the public. As the reviewed paper shows, media representations are far from harmless: they influence public understanding and confidence in the profession and impact on recruitment, policy and nurses’ self-image (Kalisch et al., 2007). Nurses are considered
highly trustworthy by the public due to their virtues of care and compassion. However, the dominant representations of nurses in the media are often inaccurate, erasing male nurses from the profession and downplaying the autonomous judgement of the nursing
professional. Nurses as feminised handmaidens play a subordinate support role to medical decision makers. The media nurse engages in bedside routines and repetitive tasks, and is sometimes a sex object, an angel of mercy or a battleaxe, sometimes all three. These stereotypical representations have changed over time, and sometimes nurses are depicted as strong and confident professionals (Kalisch et al., 1981; Stanley, 2008). Yet the significant professional, theoretical and scholarly innovations that have reshaped the role of nurses are largely invisible to the public (Ten Hoeve et al., 2014). In tandem with nursing’s processes of
professionalisation, austerity measures in the neoliberal health system have demanded efficiency and cost containment, while also reorienting services so they can be more clientcentred. This twin move to the proletarianisation of nursing care (through the growth of
various classes of healthcare assistants doing tasks previously performed by nurses) and democratisation of health within a technocratic, market-led and more participatory health system has profound implications for the future of nursing.

The reviewed paper is timely, given the growing focus on shared decision making and participation as an outcome of client-centredness in Western health systems. It raises questions about the customary role of nurses as gap fillers and problem solvers, who maintain the status quo on doctors’ orders. New media channels such as the Internet allow access to on-demand health information outside of authoritative channels, and new
technologies such as fitness trackers and wearables produce a wide range of personal health information. These technologies do some of the work of nursing in the sense that they put recipients at the centre of the health experience and allow health information to enhance the consumer’s knowledge of, control of and impact on their own healthcare. The role of the
nurse as a facilitator in these new flows of health information is yet to be effectively represented within the profession’s view of itself, let alone in the mass media, as this paper suggests.

The reviewed study’s findings on the aversion felt by nurse participants to informed consumers is an issue with significant ramifications. The question that remains is whether there is an opportunity for nurses to enter the public sphere in a meaningful alignment with consumer aspirations for healthcare? If healthcare is to become more participatory, equitable and consumer-driven, what transformative changes will we as nurses need to
make in our own self-identity and practice?

References
Kalisch BJ, Begeny S and Neumann S (2007) The image of the nurse on the internet. Nursing Outlook 55(4): 182–188.
Kalisch BJ, Kalisch PA and Scobey M (1981) Reflections on a television image: The nurses 1962–1965. Nursing & Health Care: Official Publication of the National League for Nursing 2(5): 248–255.
Nairn R, De Souza R, Barnes AM, et al. (2014) Nursing in media-saturated societies: Implications for cultural safety in nursing practice in Aotearoa New Zealand. Journal of Research in Nursing 19(6): 477–487.
Stanley DJ (2008) Celluloid angels: A research study of nurses in feature films 1900–2007. Journal of Advanced Nursing Available at: http://onlinelibrary.wiley.com/doi/10.1111/j. 1365-2648.2008.04793.x/full (accessed 30 September 2017).
Ten Hoeve Y, Jansen G and Roodbol P (2014) The nursing profession: Public image, self-concept and professional identity. A discussion paper. Journal of Advanced Nursing 70(2): 295–309.

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Ruth De Souza on Wearable Technology

I am speaking at the WT | Wearable Technologies conference in Sydney next month. I spoke to Wearable Technologies Australia (WTA) about the future of the wearable tech industry and some of the challenges the industry is facing. Check out the  full program here.

Here’s a link to the interview we did and I’ve also reproduced it in full below.

WTA: Tell us a little bit about yourself and your journey within the wearable technology space

RDS: I am a nurse, educator and researcher by background and currently work in a unit called the Centre for Culture, Ethnicity and Health at North Richmond Community Health Centre in Melbourne. I came from Monash University to this role with an interest in translating research into practice. I was really interested in doing research in the community and being based there, so that there wasn’t such a big lag between research and knowledge implementation. Wearable tech seemed a good area to explore in a community setting where there is a high percentage of overseas-born residents (38%). Many speak a language other than English at home which has an impact on health literacy. I have been working with colleagues at the University of Melbourne and Paper Giant using “design probes” to engage women from culturally and linguistically diverse (CALD) backgrounds in discussions about health tracking and wearable health technologies in the context of pregnancy and parenting. We started with a stakeholder forum where we explored the research issues around wearable tech and cultural diversity to develop an agenda. More recently with the the University of Melbourne we have conducted a health self-tracking week where we provided daily community education sessions on a range of topics including diabetes and nutrition and self-tracking. Before the end of the year we will be following up with interviews with trackers and asking them about the barriers and enablers to self-tracking.

WTA: Wearable Tech is the next big thing now. Where do you see the industry heading in the next 5 years?

RDS:I am interested in what changes need to be made in health care systems to really maximise the benefits of Wearable Tech. What kinds of educational preparation will the future health workforce need? How will health workers need to modify their roles from being traditional gate-keepers of information in light of the democratisation of information access? What skills will they need to support patients who are activated, motivated and informed? How will health care systems need to change so they can really make the most of patient generated health data? How will workflows and practices change in order to accommodate the new models of care that are emerging with wearable tech?

WTA: According to your expertise in the wearables space which industry do you think will be impacted most by wearable technologies in the next few years

RDS: Technology is moving faster than the health care and education industries. In order to realise the benefits of advances in wearable tech, it’s going to be crucial for the health care workforce to be well prepared educationally and to develop digital literacies both at the undergraduate level and then in terms of continuing education and training. There’s going to have to be a huge shift not just in terms of knowledge and skills, but also in terms of understanding how to be more collaborative in health care.

WTA: Do you think personal IoT has a sustainable future? Will people need more than one platform to handle all their wearable devices?

RDS: I think interoperability is a big issue. Merely generating personal health data without the capacity to have it integrated into your health care means that the potential benefits may not be realised. For this our current models of care and institutional systems need to become more agile and nimble. Many health workers are sceptical about the benefits of wearable technology and concerned about who gets to benefit from the aggregation of health data. They need reassurance about the ethical treatment of data.

WTA: What do you think is the biggest challenge within the wearable technology industry?

RDS: I think the biggest challenge is how wearable technologies can work for people who are marginalised. Working in community health as a researcher I am interested in what wearable self tracking devices mean for people who don’t fit the wealthy, worried, well and white demographic, that typically wearables are marketed to. There is an urgent need to bring people and communities into processes of information handling that are more transparent and accountable. Health workers adhere to codes of conduct and have a duty of care, I’d like to see the developers of technologies engage in more careful scrutiny and have more transparency about the uses of data. I think also that if wearable tech is to be democratised and benefit everyone then communities who are wary of surveillance must have greater control of their data and personal health information.

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Improving collaboration between nursing professionals and support workers in the New Zealand mental health system– A position paper

In 1998 I began teaching the first mental health support work cohorts in New Zealand at Unitec Institute of Technology. I had the privilege of working with Maori and Pacific mental health workers, peer support workers and consumer providers until 2005. I wrote this position paper for the Australian and New Zealand College of Mental Health Nurses way back in 2003. I have taken it out of the vault in case it is of use. I have listed more up to date references at the end of the document for those who might want to do some further reading.

EXECUTIVE SUMMARY

The Mental Health Commission (1997) states that mental health is the concern of all. Support workers are a reality of today’s mental health system in New Zealand and this paper looks at their relationship with community mental health nurses. This paper is a response to the major changes in mental health care in New Zealand over the last decade, which have dramatically altered the landscape of the mental health workforce. It seems timely to look at a way forward and to develop guidelines for nurses working with support workers in the community. In this paper “support workers” include community support workers and consumers as providers and the term “nurses” refers to community mental health nurses.

No one group can meet the needs of consumers. Together these two groups can provide complimentary services to improve client care but a model of cooperation is necessary and further clarification of roles and overlap is required. Effective teamwork between nurses and support workers in the mental health community in New Zealand must occur so that the care delivered is flexible and responsive to the needs of consumers and their families. The changes in the socio-political context of mental health care in New Zealand are challenging nurses to re-define their scope of practice. These developments and their implications are summarised and options for the nursing profession are discussed and recommendations given.

ISSUES

Competition for funding

The creation of the Regional Health Authorities (RHA) in 1991 was part of a new system of purchasing health services which replaced Area Health Boards (Yegdich & Quinn, 1996). This new funder /purchaser /provider system encouraged competition between providers and led to many new services entering the health sector. These included non-governmental services who were now able to compete directly with Crown Health Enterprises (CHE), previously there was an obligation for boards to concentrate funding on their own services (Yegdich & Quinn, 1996). In 1996 the new coalition government initiated another review of the health system leading to funding being centralised under the Transitional Health Authority (THA). Competition for central funding begs the question of whether competing services with different philosophies and types of workers can cooperate with each other. When community support services were established in Auckland there was antagonism from nurses as these new services were seen as better resourced, with lower caseloads and were seen to be eroding the role of the professional nurse.

Culturally appropriate parallel services

The changes in funding have also lead to the development of specialised Maori and Pacific Island support work services. In Auckland, the Maori community support work (CSW) service has dramatically reduced the rate of admission and re-admission for Maori . Previous statistics had shown that Maori were entering the mental health system at the same rates as non-Maori but required longer stays and more frequent re-admissions (Te Puni Kokiri, 1993). Increased numbers of immigrants and refugees from Africa, Asia and Eastern Europe have led to the formation of specialised mental health services, for example the Refugees As Survivors (RAS) centre. However, a disadvantage of parallel services is that nurses in main stream services lose the opportunity to develop specialised skills for working with cultures other than their own.

Case management

Case management originated in the United States in the 1980’s in the context of deinstitutionalisation, normalisation and the development of community mental health centres (Sledge, Astrachan, Thompson, Rakfeldt & Leaf, 1995; Willis & Morrow, 1995). It was seen as a way of improving the connections between services and linking both clinical and rehabilitation services together to ensure that “severely mental ill” clients received adequate services (Sledge, et al. 1995). Versions of case management are used in New Zealand although little has been written about the experience locally. Universal agreement has not been achieved regarding the scope of practice of case managers and the level of education required. The assumption that nurses are the most suitable group to provide case management services is being challenged by the emergence of support work services and parallel ethnic mental health teams.

Role change

Yegdich and Quinn (1996) have observed that the role of nurses has extended with the move from institution to community. Needs of clients now include housing, income, employment and social networks. However, an audit of community services in Auckland found that the dominant activity of nurses was crisis intervention (Yegdich & Quinn, 1996). Support work services have evolved in recognition of the gaps in community care provision. This movement to the community has also resulted in an increased emphasis on tertiary prevention, rehabilitation and recovery. New postgraduate training courses in mental health nursing have been developed as a result of a growing dissatisfaction with comprehensive nurse training and what is seen as inadequate preparation for working in this area (Ministry of Health, 1996). This is also important from a case management perspective particularly as broader skills are necessary for this role, for example knowledge of community resources.

Changing relationship with consumers

The consumer movement is influencing the movement of mental health service delivery from a medical to psychosocial rehabilitation model (Worley, 1997). New opportunities have arisen for consumers to interact with policy makers, professionals and others from a position of strength. Consumer operated programmes and initiatives have been developed due to the dissatisfaction with clinical mental health services. Consumers have found consumer-staffed organisations more empathetic, tolerant and understanding because of their own struggles with psychiatric disability (Worley, 1997). Consequently, guidelines have been developed as a result of increased consumer participation in professionally run mental health agencies (Ministry of Health, 1995). This has also led to changes in relationships between consumers and professionals. There is growing recognition on the part of professionals of the value of experiential knowledge and what consumers have to offer other consumers.

Safety and extended roles

  • Assessment by a nurse is required to detect changes in the mental state of a client. Where a support worker is the predominant contact, changes may be missed particularly if they have no clinical experience or assessment skills. In an article about extended roles, Rieu (1994) stated that discussion about accountability (“professional” and “legal”) and competency is needed. Other questions that need to be addressed include:
  • What preparation and training are support workers given?
  • What supervision do they get and how are they regulated?
  • How well are they resourced and supported?
  • Is their scope of practice clearly defined?

ADDRESSING THE ISSUES

Recognising the strengths of support workers

Support workers are seen as filling the gaps in community care, particularly in terms of work with clients with complex needs not met within the reductionist medical model (Davies, Harris, Roberts, Mannion, McCosker & Anderson, 1996). Other advantages include breaking the barrier of client-worker distance, providing a bridge between clients and mainstream staff and providing a role model for clients of similar background (Davies et al., 1996). Studies have shown that support workers are considered more effective than health professionals for several groups with varying mental health needs (Davies et al., 1996; Grant, Ernst, Streissgut, Phipps & Gendler, 1996). These include abused women, who have viewed the health system as sexist, fragmented and professionals as judgemental and insensitive (Davies et al., 1996). Other studies have shown that chronically drug-dependent women have become distrustful of “helping” agencies and in turn many professionals see these women as a hopeless population (Grant et al., 1996). They describe an advocacy model of case management using support workers, who worked intensively with women, who used drugs or alcohol heavily during their pregnancies and were alienated from community services. This alienation increased the risk of delivering children with serious medical, developmental and behavioural problems. It also prevented them from seeking assistance from agencies that were designed to help them. These ‘advocates’ were support workers experienced in social services with high-risk populations, had a variety of life experiences and came from a similar cultural background to their clients. They were seen as positive role models, providing hope and motivation. It was found after one year that clients now engaged with treatment agencies, decreased drug use, increased use of birth control and increased their involvement with supportive and skill building groups, such as parenting classes (Grant, et al., 1996).

Training and education of nurses

Nursing training must incorporate concepts such as recovery and consumer perspectives. Nurses need to be supported to work as case managers and build on their roles as more than adjuncts to the medical model. Mental health nurses working in the community must clarify their current roles and define what pathways they will follow.

Diversity in the workforce to provide culturally appropriate services

Reviews have shown that there are a paucity of culturally safe services for Maori and Pacific people (Ministry of Health, 1997). Furthermore, the provision of resources and devolution of resources have not supported other views of mental illness (Mental Health Commission, 1996). “Moving Forward” (Ministry of Health, 1997) national objectives states more trained mental health workers are needed before culturally appropriate services can be provided by mainstream and kaupapa Maori mental health services. A better partnership is needed between education and health sectors so that training can be specifically targeted to Maori. The Pacific Island objective also recommends that work be done so that mental health services become more responsive to the diverse needs of Pacific peoples. The national objectives recommend educating consumers as providers, community support workers and Maori and Pacific Island workers.

Better cooperation with ethnic support workers

In an Australian article, Fuller (1995) argued that health care practices by professionals continue to be predominantly monocultural despite recognition of the need to be responsive to the culturally diverse population. Fuller added that different ethnic groups practice illness prevention and health promotion differently. Some prefer direct, practical and immediate assistance from the Western care system rather than long term strategies. Fuller argued that nurses could not attain all the necessary cultural knowledge to provide total care to clients without a partnership with cultural intermediaries. According to Fuller, this expectation would result in lists of stereotypical traits being produced rather than an improved understanding of clients individual needs. Fuller added that the values and assumptions of primary nursing with contradictory notions of empowerment and autonomy have resulted in rigid professional boundaries which restrict multi-disciplinary team work, thereby increasing the need for an ethnic support worker.

Alternative structures and models

The Ministry of Health (1997) recommends that mental health promotion and prevention for Maori and Pacific Islanders be strengthened. They suggest using traditional (Pacific and New Zealand) structures to promote mental health including circulating Pacific language descriptions of key western mental illnesses. In addition, the Report of the National Working Party on Mental Health Workforce Development (Ministry of Health, 1996) suggested that Maori consumers become integrated into the provider culture of mental health services, so services reflect the wealth of Maori consumer experience. This is in line with the request by Maori consumers to have more Maori community support workers, patient advocates and crisis teams. This leads on to the next area for discussion about who can best provide services for those with mental health needs. Takeuchi, Mokuau & Chun (1992) found that the establishment of parallel services improved mental health for minorities and led to an increase in their use.

Multiskilled, multidisciplinary and comprehensive

According to Øvretveit (1993), it is rare that one profession alone is able to meet the needs of a person with a social or health need. Usually the skills and knowledge of a range of specialists are beneficial and coordination is crucial to prevent costs of duplication and staff frustration. This is echoed by the Report of the National Working Party on Mental Health Workforce Development (Ministry of Health, 1996). It suggests that the best way to deliver mental health services to consumers is by having a team of multi-skilled and multi disciplinary workers. This team would be able to address the many facets of care required by sufferers of mental illness and would include community support workers as well as Maori and Pacific Island workers. “Moving Forward’s” National objectives are to increase the Maori and Pacific Island mental health workforce. In addition, a flexible system is required where a case manager might need to spend more time with someone as the nature of mental illness changes rapidly.

A proposed model of cooperation

The mental health of consumers will be maximised if professionals and support workers are able to work in partnership and combine their skills, knowledge, life experience and expertise in a coordinated way. This would ensure that services are respectful, relevant, flexible, responsive and effective and that they are available to consumers to reduce the barriers that prevent them from achieving their full health potential. The framework for community service delivery for people with mental health problems needs to be comprehensive, health promoting and collaborative; a partnership that is committed to client empowerment and the elimination of barriers to access (Association of Ontario Health Centres, 1994).

RECOMMENDATIONS

Several recommendations are proposed:

Liaison

  • Adopt protocols for networking within all services so that inter-agency cooperation is maximised and clients receive a seamless service.
  • Improve the interface between clinical, cultural and psychosocial models to increase understanding and collaboration from both perspectives.

Training 

  • Educate support workers to understand the role of the nurse but not to the extent that traditional healing structures are negated in favour of psychotherapeutic methods.
  • Formalise traditional roles into the mental health system, for example the role of Kaumatua (Street & Walsh, 1996).
  • Train nurses in cultural and psychosocial models.

Role and Scope of practice

  • Develop job descriptions for support workers in cooperation with nurses to prevent role ambiguity, promote job satisfaction and decrease discontent.
  •  Support and safeguard support workers to ensure that their role does not compromise the safety of clients and staff or the role of the nurse.
  • Use nurses appropriately and ensure that they are not substituted by support workers for fiscal or political reasons.
  • Define core competencies for support workers at a national level and ensure on-going monitoring of standards.

Alternatives to the medical model

  • Recognise that the clinical model has limitations and cannot meet the needs of all clients.
  • Increase familiarity with alternative models of mental health amongst nurses, for example recovery and cultural models.
  • Review and clarify the role of nurses working in mental health.

Cultural safety 

  • Acknowledge the importance of spiritual issues, land rights, whanau reconstruction and physical health (Street & Walsh, 1996).
  • Resource nurses appropriately for the cultural component of their work.
  • Involve nurses in developing appropriate policy and healthcare services to Maori and ethnic minorities in New Zealand (Street & Walsh, 1996).
  • Familiarise nurses with the work of ethnic mental health workers and Maori support work services.

Consumer participation/consumer focused

  • Recognise the experiential and personal knowledge of consumers.
  • Ensure that consumers are key players in planning and accountability structures which are linked to outcome measures.

CONCLUSION

This paper has shown how support workers can reach clients who are lost to or fearful of the mental health system, whether this is because of social, ethnic or cultural reasons. In an evolving mental health system moving from institutionalisation to community-based care, these new roles provide a bridge between the clinician and the consumer. No one group can meet all the needs of consumers. Support workers can widen the focus of the mental health system in a way that better meets the needs of clients in the community at large, whatever their background. Friction has existed between nurses and support workers, the former often viewing the latter as eroding their role and of being unskilled. Alternatively support workers have sometimes viewed nurses as part of a system that they see as having failed them. Support workers are seen by some as being a political solution to eroded health care funding. Although there are several issues requiring on-going discussion, not least the legal and ethical requirements for support workers and their regulation, a synergy exists between nurses and support workers and together they can provide complimentary services to improve client care. For this to be successful a model of cooperation is necessary and further clarification of roles and overlap is required. Effective teamwork between nurses and support workers in the mental health community in New Zealand must occur so that the care delivered is flexible and responsive to the needs of consumers and their families. A guiding framework of principles for working in harmony should be developed.

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