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.

Refs

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.

Smells and bodies out of place: Microaggressions on public transport

A winter evening, wet and cold. Squashed into a tram. When a seat became available, I swooped down into it, finding myself next to a woman who proceeded to cover her nose. As she fanned her face with her other hand, I asked her with gentle concern if she was ok. She responded vehemently and with a force I didn’t expect: “It stinks in here, full of people smelling of onions and curry and shit”. Hmm. We were surrounded by Indians including me.

The new super sized E tram leaves the South Melbourne Depot. Pic. Nicole Garmston
The new super sized E tram leaves the South Melbourne Depot. Pic. Nicole Garmston

It’s not the first time I’ve had funny looks and comments about food and smells but the last time was when it was referring to my lunchbox, quite a few decades ago. The incident on the tram made me think about how smells are political (Manasalan). I’m writing about smells in hospitals in a book chapter coming out later this year and I am interested in what makes some public smells acceptable (for example disinfectant) and other more organic smells not so acceptable or even disgusting.

The food that is a salve for the dislocated, lonely, isolated migrant also sets her apart, making her stand out as visibly, gustatorily or olfactorily different. The soul sustaining resource also marks her as different, a risk. If her food is seen as smelly, distasteful, foreign, violent or abnormal, these characteristics can be transposed to her body and to those bodies that resemble her.

Laksa by Ruth De Souza
Laksa by Ruth De Souza

Food smells categorise groups of people who are different, and those viewed as negative are seen as a marker of non-western primitiveness. The emotion of disgust is emblematic of the too-near proximity of others and the fear that we might be invaded through our mouths. Probyn writes:

disgust reveals the object in all of its repellent detail, it causes us to step back, and, in that very action, we are also brought within the range of shame

However, nutritional assimilation or sanitisation to become odourless and modern does not guarantee belonging, like citizenship it remains thin when compared to the affective power of ethnic identity. (DeSouza, in press).

Grinding my own spice mix, by Ruth De Souza
Grinding my own spice mix, by Ruth De Souza

I am a committed foodie (defined by Johnston and Baumann, 2010: 61), as ‘somebody with a strong interest in learning about and eating good food who is not directly employed in the food industry’ who is also interested in the politics of food. My partner and I commute to Melbourne, a foodie paradise. Melbourne’s food culture has been made vibrant by the waves of migrants who have put pressure on public institutions, to expand and diversify their gastronomic offerings for a wider range of people. However, our consumption can naturalise and make invisible colonial and racialised relations. Thus the violent histories of invasion and starvation by the first white settlers, the convicts whose theft of food had them sent to Australia and absorbed into the cruel colonial project of poisoning, starving and rationing indigenous people remain hidden from view. So although we might love the food we might not care about the cooks at all as Rhoda Roberts points out:

In Australia, food and culinary delights are always accepted before the differences and backgrounds of the origin of the aroma are.

Sometimes though the acceptance is also class based or related to gentrification take Nick Earles’ point:

But it wasn’t as bad as being the kid from the Italian family who had his “wog” lunch thrown in the bin most days, only to watch the perpetrators spend $10 in cafes 20 years later for the exact same food – focaccia and prosciutto – with no recollection of what they’d done.

It’s been a long time since I’ve experienced someone else’s visible disgust. How to negotiate the smell that is out of place and the identity that does not belong? An ongoing process, but I’ve had plenty of practice.

Jellyfish and cabbage salad, by Ruth De Souza
Jellyfish and cabbage salad, by Ruth De Souza

Using forum theatre to facilitate reflection and culturally safe practice in nursing

Unpublished manuscript for those who might be interested. Cite as: DeSouza, R. (2016, July 16). Using forum theatre to facilitate reflection and culturally safe practice in nursing [Web log post]. Retrieved from: http://www.ruthdesouza.com/2016/07/16/using-forum-theatre-for-reflective-practice/

High quality communication is central to nursing practice and to nurse education. The quality of interaction between service users/patients and inter-professional teams has a profound impact on perception of quality of care and positive outcomes. Creating spaces where reflective practice is encouraged allows students to be curious, experiment safely, make mistakes and try new ways of doing things. Donald Schon (1987) likens the world of professional practice to terrain made up of high hard ground overlooking a swamp. Applying this metaphor in Nursing, Street (1991) contends that some clinical problems can be resolved through theory and technique (on hard ground), while messy, confusing problems in swampy ground don’t have simple solutions but their resolution is critical to practice.

Rocks Philip Island
Rocks Philip Island

Australian society has an Indigenous foundation and is becoming increasingly multicultural.In Victoria 26.2 percent of Victorians and 24.6 per cent of Australians were born overseas, compared with New Zealand (22.4 per cent), Canada (21.3 per cent), United States (13.5 per cent) and The United Kingdom (10.4 per cent). Australia’s multicultural policy allows those who call Australia home the right to practice and share in their cultural traditions and languages within the law and free from discrimination (Australia Government, 2011, p. 5). Yet, research highlights disparities in the provision of health care to Culturally and Linguistically Diverse (CALD) groups and health services are not always able to ensure the delivery of culturally safe practice within their organisations (Johnstone & Kanitsaki, 2008).

An important aspect of cultural safety is the recognition that the health care system has its own culture. In Australia, this culture is premised on a western scientific worldview. Registered nurses (RNs) have a responsibility to provide culturally responsive health care that is high quality, safe, equitable and meets the standards expected of the profession such as taking on a leadership role, being advocates and engaging in lifelong learning. RNs who practice with cultural responsiveness are able to ‘respond to the healthcare issues of diverse communities’ (Victorian Department of Health [DoH], 2009, p. 4), and are respectful of the health beliefs and practices, values, culture and linguistic needs of the individual, populations and communities (DoH, 2009, p. 12).

Culturally competent nursing requires practitioners to provide individualised care and consider their own values and beliefs impact on care provision. Critical reflection can assist nurses to work in the swampy ground of linguistic and cultural diversity. Reflection involves learning from experience: not simply thinking back over an event, but developing a conscious and systematic practice of thinking about experience in order to learn and change future behaviour. Critical reflection involves challenging the nurse’s understanding of themselves, their attitudes and behaviours in order to bring their views of practice and the world closer to the complex reality of care. This kind of process facilitates clinical reasoning, which is the thinking and decision-making toward undertaking the best-judged action, enhancing client care and improve practitioner capability and resilience.

Didactic approaches impart knowledge and provide students with declarative knowledge but don’t always provide the opportunity to practice communication techniques or to explore in depth the attitudes and behaviours that influence their own knowledge. Drama and theatre are increasingly being used to create dynamic simulated learning environments where students can try out different communication techniques in a safe setting where there are multiple ways of communicating. A problem based learning focus allows students to reflect on their own experiences and to arrive at their own solutions, promoting deep learning as students use their own experiences and knowledge to problem solve.

In 2015 I developed and trialed a unit for students at all three Monash School of Nursing and Midwifery campuses in their third year. The aim of the unit was to provide students with resources to understand their own culture, the culture of healthcare and the historical and social issues that contribute to differential health outcomes for particular groups in order to discern how to contribute to providing culturally safe care for all Australians. The unit examined how social determinants of health such as class, gender, race, sexual orientation, gender identity; education, economic status and culture affect health and illness. Students were invited to consider how politics, economics, the social-cultural environment and other contextual factors impacted on Aboriginal and Torres Strait Islander and Culturally and Linguistically Diverse (CALD) communities. Students were asked to consider how policy, the planning, organisation and delivery of health and healthcare shaped health care delivery.

The unit was primarily delivered online but a special workshop was offered using Forum theatre developed by Augusto Boal in partnership with two experienced practitioners Azja Kulpińska and Tania Cañas. Forum theatre is focused on promoting dialogue between actors and audience members, it promotes transformation for social justice in the broader world and differs from traditional theatre which involves monologue. Simulated practices like Forum theatre allow students to address topics from practice within an educational setting, where they can safely develop self-awareness and knowledge to make sense of the difficult personal and professional issues encountered in complex health care environments. This is particularly important when it comes to inter-cultural issues and power relations. Such experiential techniques can help students to gain emotional competence, which in turn assists them to communicate effectively in a range of situations.

Students were invited to identify a professional situation relating to culture and health that was challenging and asked to critically reflect on the event/incident focusing on the concerns they encountered in relation to the care of the person. Through the forum theatre process they were asked to consider alternative understandings of the incident, and critically evaluate the implications of these understandings for how more effective nursing care could have been provided. Through the workshop it was hoped that students could then review the experience in depth and undertake a process of critical reflection in a written assessment by reconstructing the experience beyond the personal. They were encouraged to examine the historical and social factors that structure a situation and to start to theorise the causes and consequences of their actions. They were encouraged to use references such as research, policy documents or theory to support their analysis and identify an overarching issue, or key aspect of the experience that affected it profoundly. Concluding with the key learnings through the reflective process, the main factors affecting the situation, and how the incident/event could have been more culturally safe/competent. Students were asked to develop an action plan to map alternative approaches should this or a similar situation arise in the future.

Forum theatre has been used in nursing and health education to facilitate deeper and more critical reflective thinking, stimulate discussion and exploratory debate among student groups. It is used to facilitate high quality communication skills, critical reflective practice, emotional intelligence and empathy and appeals to a range of learning styles. Being able to engage in interactive workshops allows students to engage in complex issues increasing self-awareness using techniques include physical exercises and improvisations.

My grateful thanks to two Forum Theatre practitioners who led this work with me:

Azja Kulpińska is a community cultural development worker, educator and Theatre of the Oppressed practitioner and has delivered workshops both in Australia and internationally. She has been a supporter of RISE: Refugees, Survivors and Ex-Detainees and for the last 3 years has been co-facilitating a Forum Theatre project – a collaboration between RISE and Melbourne Polytechnic that explores challenging narratives around migration, settlement and systems of oppression. She is also a youth worker facilitating a support group for young queer people in rural areas.

Tania Cañas is a Melbourne-based arts professional with experience in performance, facilitation, cultural development and research. Tania is a PhD candidate at the Centre for Cultural Partnerships, VCA. She also sits on the International PTO Academic Journal.
She has presented at conferences both nationally and internationally, as well as facilitated Theatre of the Oppressed workshops at universities, within prisons and youth groups-in in Australian, Northern Ireland, The Solomon Islands, The United States and most recently South Africa. For the last 2.5 years has been working with RISE and Melbourne Polytechnic to develop a Forum Theatre program with students who are recent migrants, refugees and asylum seekers.

References

  • Australian Government. (2011). The People of Australia: Australia’s Multicultural Policy, Retrieved from https://www.dss.gov.au/sites/default/files/documents/12_2013/people-of-australia-multicultural-policy-booklet.pdf
  • Boud, D., Keogh, R. and Walker, D. 1985. Reflection: Turning experience into learning. London: Kogan Page.
  • Gibbs, G. 1988. Learning by doing: A guide to teaching and learning methods. Oxford: Oxford Further Education Unit.
  • Johns, C. 1998b. Illuminating the transformative potential of guided reflection. In Transforming Nursing Through Reflective Practice (eds). C. Johns and D. Freshwater. Oxford: Blackwell Science. 78-90.
  • Johnstone, MJ. & Kanitsaki, O. (2008). The politics of resistance to workplace cultural diversity education for health service providers: an Australian study. Race Ethnicity and Education 11(2) 133-134
  • McClimens, A., & Scott, R. (2007). Lights, camera, education! The potentials of forum theatre in a learning disability nursing program. Nurse Education Today, 27(3), 203-9. doi:10.1016/j.nedt.2006.04.009
  • Middlewick, Y., Kettle, T. J., & Wilson, J. J. (2012). Curtains up! Using forum theatre to rehearse the art of communication in healthcare education. Nurse Education in Practice, 12(3), 139-42. doi:10.1016/j.nepr.2011.10.010
  • Nursing and Midwifery Board of Australia (2006). National competency standards for the registered nurse, viewed 16 February 2014: www.nursingmidwiferyboard.gov.au.
  • Nursing and Midwifery Board of Australia (2008). Code of professional conduct for nurses in Australia, Nursing and Midwifery Board of Australia, Canberra.
  • Schön, D.A. 1987. Educating the Reflective Practitioner. San Francisco: Jossey Bass.
  • Street, A. 1990. Nursing Practice: High Hard Ground, Messy Swamps, and the Pathways in Between. Geelong: Deakin University Press.
  • Turner, L. (2005). From the local to the global: bioethics and the concept of culture. Journal of Medicine and Philosopy. 30:305-320 DOI: 10.1080/03605310590960193
  • Victorian Department of Health. (2009). Cultural responsiveness framework Guidelines for Victorian health services, Retrieved from http://www.health.vic.gov.au/__data/assets/pdf_file/0008/381068/cultural_responsiveness.pdf
  • Wasylko, Y., & Stickley, T. (2003). Theatre and pedagogy: Using drama in mental health nurse education. Nurse Education Today, 23(6), 443-448. doi:10.1016/s0260-6917(03)00046-7
  • Also see DeSouza, R (2015). Communication central to Nursing Practice. Transforming the Nations Healthcare 2015, Australia’s Healthcare News.