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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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NEW MOTHERS AND APPS DURING COVID-19


Sukhmani Khorana, Bhavya Chitranshi and I recently completed research about the experiences of six cisgender South Asian-Australian women who gave birth during the COVID-19 pandemic.

Design by Georgia Hodgkinson.

A note about language in this report: The South Asian “women” in our study identified as cisgender. However, we have used a gender-additive approach to language to be respectful and inclusive of trans, genderqueer and intersex people by using gender-neutral language alongside the language of womanhood. For example, both ‘maternal’ and ‘parental’, ‘breast- feeding’ and ‘chest-feeding’, and so on (Green & Riddington, 2020).

Prior to the pandemic negatively racialised women experienced barriers to healthcare and a lack of social support, which were further exacerbated during the COVID-19 pandemic. International border closures in Australia combined with local mitigation strategies inhibited social and cultural support from families, impacting many migrant mothers who gave birth for the first time in Australia. Many hospitals in New South Wales and Victoria instituted restrictions to birthing services as a way of reducing exposure to the coronavirus during the pandemic. These restrictions varied, but included not allowing partner attendance for antenatal appointments, reducing support people to one person that could be present during the labor and birth, and sometimes not permitting partners on postnatal wards.

South Asian women were recruited via social media, and qualitative semi-structured interviews were conducted between May and October 2021 via video, following ethical approval from the RMIT University Ethics Committee. Findings from our in-depth interviews indicate that perinatal experiences were adversely impacted by:

a) limited face-to-face support from healthcare providers;
b) limited access to partner support during appointments and in childbirth;
c) isolation and mental health impacts of not having access to family networks, particularly to those who could provide culturally specific perinatal knowledge and postpartum support;
d) increased reliance on an ecosystem of online support including apps, social media groups and credible websites, which had mixed results in terms of being culturally appropriate.

Our research suggests that pre-existing limitations of healthcare providers, services and apps with regard to culturally and linguistically diverse (CALD) women in Australia have been amplified during the pandemic. Disruptions in the physical and social presence of family, friends and healthcare workers, caused by international travel restrictions and changing healthcare practices during the pandemic, add significantly to the everyday stress, anxiety and challenges faced by new parents. That responsibilization – the shifting back of responsibility from health services to mothers and their families – has led to mothers shouldering many of the burdens of a new transition by themselves, rather than in a system of collective care by wider family or partners as they might have expected.

These health system reconfigurations combined with the absence of support from family could have longitudinal adverse consequences for new parents and their children. Online Facebook groups from the mothers’ countries of origin or cultural backgrounds, or for mothers who had babies due in the same month, represented a significant source of information and support for the participants. This was particularly important at a time when women’s capacities to engage in traditional cultural practices, which provide practical, emotional and informational support, were compromised by the inability to garner familial support. In the context of a long-term pandemic, we suggest that health services: use flexible harm reduction approaches to facilitate parental support (rather than institute blanket bans), engage in active outreach, and that services are better integrated and smartphone enabled.

New-Mothers-and-Apps-during-COVID-19-1Download

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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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Six questions for culture in the age of consumer health technologies: Public lecture

I am visiting the University of Auckland as an international speaker for the Research Café on Migration & Inequality being organised by the Faculty of Science and School of Population Health. The Research Café is a project of the Engaged Social Science Research Initiative and funded by the Vice-Chancellor’s Strategic Development Fund. I’ll also be giving a public lecture on Wednesday 7th December in Room 730-268 at the School of Population Health: 11.30am -12.20pm:

“Wearables” are a growing segment within a broader class of health technologies that can support healthcare providers, patients and their families as a means of supporting clinical decision-making, promoting health promoting behaviours and producing better health literacies on both sides of the healthcare professional-consumer relationship. Mobile technologies have the potential to reduce health disparities given the growing ubiquity of smartphones as information visualisation devices, particularly when combined with real-time connections with personal sensor data. However despite the optimism with which wearable health technology has been met with, the implementation of these tools is uneven and their efficacy in terms of real-world outcomes remains unclear. Wearables have the potential to reduce the cultural cognitive load associated with health management, by allowing health data collection and visualisation to occur outside the dominant languages of representation and customised to a user experience. However, typically, “wearables” have been marketed toward and designed for consumers who are “wealthy, worried and well”. How can these technologies meet the needs of culturally diverse communities?

This presentation reports on the findings from a seminar and stakeholder consultation organised by The Centre for Culture, Ethnicity and Health, in partnership with the University of Melbourne’s Research Unit in Public Cultures and the Better Health Channel. The consultation brought together clinicians, academics, developers, community organisations, and policymakers to discuss both the broader issues that wearable technologies present for culturally and linguistically diverse (CALD) communities, as well as the more specific problems health-tracking might pose for people from diverse backgrounds. This presentation summarises the key issues raised in this consultation and proposes future areas of research on wearable health technologies and culturally and linguistically diverse (CALD) communities.

Dr. Ruth De Souza is the Stream Leader, Research Policy & Evaluation at the Centre for Culture, Ethnicity & Health in Melbourne. Ruth has worked as a nurse, therapist, educator and researcher. Ruth’s participatory research with communities is shaped by critical, feminist, and postcolonial approaches. She has combined her academic career with governance and community involvement, talking and writing in popular and scholarly venues about mental health, maternal mental health, race, ethnicity, biculturalism, multiculturalism, settlement, refugee resettlement, and cultural safety.

Contact for Information: Dr Rachel Simon Kumar r.simon-kumar@auckland.ac.nz

 

 

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Wearable devices and the potential for community health improvement

Written for and first published in in the August 2016 edition of Nurse Click  (the Australian College of Nursing’s monthly electronic, interactive PDF publication available to ACN members, and to stakeholders, the wider nursing and non-nursing community who subscribe to it.). Cite as: DeSouza, R. (2016). Wearable devices and the potential for community health improvement. Nurse Click, August, 14-15 (download pdf 643KB nurseclick_august_2016_final)

TV Glasses (1964)

TV Glasses (1964)

“Wearable technology“, “wearable devices“, and “wearables” all refer to electronic technologies or computers that are incorporated into items of clothing and accessories which can comfortably be worn on the body. These wearable devices can perform many of the same computing tasks as mobile phones and laptop computers; however, in some cases, wearable technology can outperform these hand-held devices through their integration into bodily movements and functions through inbuilt sensory and scanning features, for example. Wearables include: smart watches, fitness trackers, head mounted displays, smart clothing and jewellery. There are also more invasive varieties including implanted devices such as micro-chips or even smart tattoos, insulin pumps, or for contraception. The purpose of wearable technology is to create constant, seamless and hands-free access to electronics and computers.

Wearables are all about data. Thanks to recent advancements in sensors, we’re able to collect more information about ourselves than ever and use that data to make healthcare personal and tailored to our needs. Traditionally, qualitative health research and much clinical interaction relies on self-reporting by consumers, which is then interpreted by researchers and published for incorporation into practice by health practitioners. Along the way, much important information is “lost in translation”. New consumer healthcare technologies are brokering a shared informational interface between caregivers, clinicians, communities and researchers, allowing practitioners to access richer and more detailed empirical data on health consumer activity and their participation in health-seeking activities.

Consumer health technologies offer potential for care to be more equitable and patient-centred. The technological promise also brings concerns, including the impact on the patient-provider relationship and the appropriate use and validation of technologies. Technologies are also developed with particular service-users in mind, and rarely designed with the participation of people from structurally and culturally marginalised communities. In turn, the impacts of these technologies on health service education, planning and policy are far reaching. It is important that technology is not demographically blind, from a public health and community health perspective it must not reinforce the structural inequalities that exist between those who have access to health and those who haven’t.

The Centre for Culture, Ethnicity and Health, in partnership with the University of Melbourne’s Research Unit in Public Cultures and the Better Health Channel, recently organised a seminar and stakeholder consultation in Melbourne on July 28th with the aim of shaping a research agenda on wearable health technologies and culturally and linguistically diverse (CALD) communities. Typically wearables have been marketed toward the ‘wealthy worried and well’ demographic and the purpose of the seminar was to discuss both the generic issues that emerging wearable technologies present, as well as the unique issues for people from diverse backgrounds. The three hour event brought together clinicians, academics, developers, community organisations, and policymakers to consider the future issues with these technologies.

Seminar. Photo credit Jared Kuvent

Seminar. Photo credit Jared Kuvent

The first speaker was University of Melbourne researcher and lecturer Suneel Jethani who expressed scepticism about what wearable health technologies really may deliver for health, particularly for CALD communities. Suneel explored the growth of wearable health technologies through the notion of the pharmakon, the notion that every medicine is also poison, with the devices having capacity to be both beneficial and harmful. Janette Gogler, a Nurse Informatician from Melbourne’s Eastern Health described a randomised control trial of emerging technologies for remote patients with chronic heart failure and chronic obstructive pulmonary disease (COPD). In this trial patients took a number of their own physiological measurements including electrocardiography (ECG) monitoring, blood pressure, and spirometry. While the trial led many patients to feel more in control of their health through a better understanding of their physiology, there were also challenges, including having to manage their expectations of the technology, where patients who became suddenly unwell were upset that the system had not given them forewarning, even though the issues were outside the scope of the devices. Janette also raised the issue of research excluding speakers of additional languages. The final speaker was Deloitte Digital partner Sean McClowry, who noted that the uptake of wearable health technologies has been slower to reach ‘digital disruption’ compared to the smart phones, but saw the likelihood of exponential growth through a new model of care. Sean raised questions about the unprecedented nature of data: how to make it high quality and its analysis meaningful. The session by the three panellists was followed by two youth respondents and a question and answer session and then break out groups which developed further questions and issues for an emerging research program.

In the stakeholder consultation a number of critical themes emerged from many participants: the need to carefully manage privacy; the lack of accuracy of much consumer information; certification of apps; Western models of individual health hard-wired into the platform; the potential of peer support from new technologies; challenges for existing workforces and roles; and the potential of research to stigmatise as well as assist CALD communities. What was agreed was that consumer health technologies were only going to continue to grow and that no part of the health system would be undisrupted by the changes ahead, both intimidating and exciting!

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Sensing horizontality: I bought a wearable device to monitor my sleep

Are you a  night owl or an early bird? Or do you fall in between? I succumbed and bought a wearable device because I thought it could be useful to track my sleep. I spend a few nights in the city every week and I notice that I feel less rested than when I am ‘home’. It seems the right time to buy a wearable device, I am co-organising a Wearables seminar on July 28th 2016 at the Centre for Culture, Ethnicity and Health. I’ve also been invited by Croakey to guest tweet on @WePublicHealth and I want to explore how the concepts of consumer participation, health literacy and cultural competence are changing with technologisation in health care. Check out this interview with Marie McInerney editor at Croakey on Youtube if you are interested in the seminar). I’ve also just started a course at QUT on Social media and data analytics as an entry point into beginning to understand what kinds of data are being generated and what can be done with that.

Jawbone from the Harvey Norman catalogue

Jawbone from the Harvey Norman catalogue

 

Wearable health technologies are growing in social acceptance and use, especially for people interested in fitness and health monitoring as a form of preventative medicine. As sensors become cheaper and smaller, many kinds of health-related data that previously relied upon clinical equipment are becoming available for continuous self-monitoring by patients and consumers. In effect, these technologies are turning the body into media, so that a health consumer can become their own twenty four hour news channel focused entirely on the realtime representation of wellbeing.

Wearable technology platforms have been dominated by the English-speaking middle-classes, (“the wealthy, worried and well” as Michael Paasche-Orlow suggests), limiting the community benefits of enhanced participation and health. Barbara Feder Ostrov notes:

But Fitbits aren’t particularly useful if you’re homeless, and the nutrition app won’t mean much to someone who struggles to pay for groceries. Same for emailing your doctor if you don’t have a doctor or reliable Internet access.

The diffusion of mobile phones (that can also be used as health monitoring devices) indicates that these technologies will only expand to a wider range of users. 

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What are wearables?

Wearable devices or “wearable technology” and “wearables”  refer to electronic technologies or computers that are incorporated into clothing and accessories and worn on the body. They can include smart watches
fitness trackers, head mounted displays, smart clothing and jewellery. They do many things that mobile phones and laptop computers do, but some also have features not seen in mobile and laptop devices. Sensory and scanning features can provide biofeedback and track physiological function. There are also more invasive devices which can implanted such as micro-chips, smart tattoos, pumps.

Why is everyone talking about wearables now?

The world of health information is undergoing significant transformation in the digital era. 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. Several trends have increased attention on technologies in health including the democratising role of the internet, leading to the emergence of more intensively informed health consumers who expect more precise and individualised care; the ubiquity and mobility of network communications, allowing the immediate bidirectional transfer of information between individuals and systems; the role of social media in providing networks for sharing both personal data and health experiences; and the increasing cost of health care and the potential for technology to make health management more efficient.

What are the benefits?

Traditionally, much clinical interaction relies on self-reporting by consumers, which is then interpreted by researchers and published for incorporation into practice by health practitioners. Along the way, much important information is “lost in translation”. New consumer healthcare technologies are brokering a shared informational interface between caregivers, clinicians, communities and researchers, allowing practitioners to access richer and more detailed empirical data on health consumer activity and their participation in health-seeking activities. Consumer health technologies offer potential for care to be more equitable and patient-centred. In turn, the impacts of these technologies on health service education, planning and policy are far reaching. More about benefits.

Could wearables enhance independence and participation?

Advances in health mean that residents of industrialized countries live longer, but with multiple, often complex, health conditions. Health technologies can expand the capabilities of the health care system by extending its range into the community, improving diagnostics and monitoring, and maximizing the independence and participation of individuals (Patel, Park, Bonato, Chan and Rodgers, 2012). The United Kingdom’s National Health Service (NHS) is giving millions of patients free health apps & connected health devices in a bid to promote self-management of chronic diseases. Wearable sensors also have diagnostic and monitoring applications, which can sense physiological, biochemical and motion changes. Monitoring could help with the diagnosis and ongoing treatment of people with neurological, cardiovascular and pulmonary diseases including seizures, hypertension, dysrhythmias, and asthma. Home-based motion sensing might assist in falls prevention and help maximize an individual’s independence and community participation.

What are the concerns about wearables?

The technological promise also brings concerns, including the impact on the patient-provider relationship; and the appropriate use and validation of technologies. Technologies are also developed with particular service-users in mind, and rarely designed with the participation of people from structurally and culturally marginalised communities. Despite the ubiquity and access to apps, wearables and websites, the lack of science might preclude behaviour change (e.g. no set of standards) and the “average person” could struggle to choose an app that is effective at changing health behaviour. People are anxious about whether their health data can be used against them. Workplace surveillance and tracking employees has become a health and safety issue. There’s concern about whether we can trust the scientific rigor of the apps we are using, for example the accuracy of the heart rate tracker of the Fitbit and concerns about security.

What impact will technologies have on health professional roles?

Health professionals will have to consider how they work with clients in the context of these technologies. The capacity to review and share healthcare experiences is already available. Technologies will require changes in rules, business models, workflow and roles. The advent of authoritative websites like the Better Health Channel, means that health professionals may no longer be the ultimate gate-keepers of knowledge, their role might shift to being health coaches who empower clients to monitor and improve their health by using their own data. They might have a larger role in care coordination and managing care transitions through the use of mobile health apps. They could play a greater role in research at the point of care through data gathering in research projects. They could play a greater role in evaluating the quality and appropriateness of particular apps. Technology could also free up time to care. Nurses often spend more time collecting information rather than looking after patients. One study showed 60 % of the nurse’s/midwife’s time was spent collecting information and only 15% caring for their patients. ePrescription systems in Sweden, the US and Denmark increased health provider productivity per prescription by over 50%.5. eReferrals in Europe reduced the average time spent on referrals by 97%.6. So, there is potential for the enhancement of health system design: workflow and the coordination of care. There will also need to be better support for innovation as this post from The Medical Startup notes:

How can you innovate where your environment is slow to respond to change, and, despite best intentions, has trouble understanding the few (or many) employees who want to do more, but can’t articulate their feelings? How can you innovate when you risk being penalised or even kicked out of a specialty college that you’ve worked so hard to enter?

Health professionals will also need data management or data analytic skills in order to best use the data wearable health technologies generate. The data will range from public health intelligence (for example tracking outbreaks); using data as a diagnostic tool; to follow up treatment plans; to provide access to the personas, problems, goals and preferences which can then improve the care plan through tailored information and also improve engagement and activation. Health professionals will also need to find ways to prepare patients better for their appointments so that the time they spend is better used.

What kinds of workforce preparation will be necessary for using technologies effectively?

The Digital Skills for Health Professionals Committee of the European Health Parliament surveyed over 200 health professionals about their experience with digital health solutions, and a large majority reported to have received no training, or insufficient training, in digital health technology. The committee recommended continuous education of health professionals in the knowledge, use and application of digital health technology. Curricula will need to be updated to prepare health professionals for using mobile apps/diagnostic and data monitoring tools to the nurses’ repertoire of skills and competencies and larger focus on patient-centered care and consumer engagement in health promotion and maintenance activities. Will there be new roles for ‘informaticians’ whose job is to help download apps, set it up, teach patients how to use it to make health messages more understandable? Educators will need to consider how they teach students to use technology and integrate the use of mobile technology into learning experiences and clinical practice. They’ll need to consider how to use technology such as texts, mobile telephones, or video for health promotion and disease prevention. They will also need an understanding of informatics and how health data are stored, transmitted, and used, as well as the use of the electronic health record in patient-centered care planning (Kennedy, Androwich, Mannone, & Mercier, 2014).

Could benefits be realised for people from CALD backgrounds?

As one of the most culturally diverse communities in the world which accounts for around one-third of migrant settlement in Australia, Victorians born overseas as a percentage of the population have grown by 29 per cent from 2001 to 2011—from just below 1.1 million people to 1.4 million (VARG, 2014). The Auditor General notes in the VARG report (2014) that:

Migrants, particularly those with low English proficiency or poor literacy in their own language, and refugees and asylum seekers are among our most vulnerable members of the community. This is because they often have complex needs, particularly in relation to health, welfare and language services. A whole-of-government approach to the broader area of multicultural affairs should improve integration, reduce duplication and better identify gaps in services.

Evidence is growing that the the greater the health literacy of an individual, the greater the likelihood of health maintenance and promotion. Low health literacy is associated with more adverse health outcomes (people with low levels of individual health literacy are between 1.5 and 3 times more likely to experience an adverse health outcome (DeWalt et al. 2004 cited in ACSQHC 2013c). People from refugee and migrant backgrounds may be disadvantaged in the health system because they are in the process of developing their health literacy and capital. Access to and through health care is a significant aspect of feeling a sense of belonging and worth, so improvements in health participation will also have a significant impact on broader social inclusion.  We need to explore how low health literacy/data literacy affect the use of health information, merely having access to information in apps is no guarantee that you can use the information.

Last night's sleep

Last night’s sleep

It’s going to be interesting seeing what data comes out of the Jawbone app. Having had it for two days I can see that it provides useful data about the type of sleep I’ve had. What I do with the information will be one of the questions I grapple with next.

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Health Literacy and Consumer-Facing Technology: Workshop Summary
By Roundtable on Health Literacy, Board on Population Health and Public Health Practice, Institute of Medicine, National Academies of Sciences, Engineering, and Medicine.

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