This is the final Croakey Conference News Service report from the Wearable Health Technologies and CALD Communities symposium which was held in Melbourne last month to shape a research agenda on wearable health technologies.
Marie McInerney reports:
How can community health services build new models of care that carry forward their “distinctive ethic of care” into 21st century health technologies?
Will their clinicians be active providers of in-home care via physical or virtual channels and can ‘app’ developers be enticed into co-designing new technologies – from fitness trackers to technology to manage chronic conditions – with more marginalised communities?
These are some of the research questions to emerge from a Melbourne symposium hosted by the Centre for Culture, Ethnicity and Health (CEH) that examined issues for culturally and linguistically diverse (CALD) communities with emerging wearable health technologies.
See below for a Q&A with a number of participants on the issues and interests that arose from the event, which sought to find out what wearable technologies can offer beyond benefits for “the white, worried and well”.
You can also watch and listen to interviews from the event - see the links at the bottom of the post.
Symposium organiser Dr Ruth de Souza said the event identified a number of themes requiring further research, including how to tap into the role and ethos of community health centres to enhance community resilience and collective wellbeing through new digital technologies, rather than individualising and further commercialising health care.
“We believe there is an urgent need for community health service providers to propose and build these new models of care that carry forward their distinctive ethic of care into new modes of digital engagement,” she said.
Q&A with participants
Ben O’Mara, Alcohol and Drug Foundation
- In what capacity did you attend and why were you interested to be there?
I attended the seminar as a Science Writer from the Alcohol and Drug Foundation (ADF).
I came because I think there is often a kind of magical thinking associated with new information technology and its benefits for health. While smartphone apps, fitness trackers and other devices offer real opportunities to better understand and apply health information in daily life, there are also significant challenges in doing this effectively – as individuals, and within and across Australia’s many different communities.
- What was a key takeaway point/issue/insight for you from the event?
There is a need to build on the evidence of what we know works and community preferences from previous health and information technology projects involving refugees and migrants from non-English speaking backgrounds.
For example, mobile phone-based peer support and interactive talks or presentations supported by written, audio visual and web-based content for employment, mental health and alcohol and drug and other information.
SBS and community radio stations working in partnership with health agencies may also be important in developing and sharing new technological approaches to health.
The thing about these kinds of projects is that they tend to practically address social conditions in which people live, such as using appropriate language and technology that is affordable and accessible and supporting their employment and education.
3.What’s one of the main questions you’d like to have answered by follow up research?
How do we best build on learning from previous work and address broader social conditions when exploring the potential of health information technology, including wearable technology?
Monique Hameed, National Training Officer, Multicultural Centre for Women’s Health
- In what capacity did you attend and why were you interested to be there?
I work for the Multicultural Centre for Women’s Health in Collingwood as the National Training Officer. We are a national women’s health organisation committed to improving the health and wellbeing of immigrant and refugee women. I was very interested to hear how wearable technologies might be used to prevent illness, improve health care and increase access and equity for immigrant and refugee women. I’m also interested in how these technologies might be used against marginalised groups by the state and private corporations. I liked Ruth De Souza’s point that these technologies are often marketed to the “white, well and worried” rather than other more marginalised groups.
- What was a key takeaway point/issue/insight for you from the event?
There was so much to think about! I loved Suneel Jethani’s point about quantified & qualified information, the idea that a lot of these technologies give us the ability to quantify things and to produce data, but that we now need to ask more questions about what that data will be used for. Who owns the data and how is it used and by whom? Janette Gogler made a point about data not becoming information until it has been interpreted, so who does that and for what purpose?
For me, it was interesting to hear the corporate speak that often is associated with discussions of technology. It’s an industry that encourages economy so for me I left thinking about how these new technologies could help us challenge existing power structures.
- What’s one of the main questions you’d like to have answered by follow up research?
I would like more research to be done on the different cultural understandings of concepts like ‘health’ and ‘empowerment’. I felt that they were interpreted in a very Western neoliberal way and wearable technologies were talked about as a highly individualised concept. More on how communities who are resource poor have or could use these new technologies to bridge the gap in health outcomes would be great!
Dr Paul Atkinson, Academic Writing Unit, School of Media, Film and Journalism, Monash University
- In what capacity did you attend and why were you interested to be there?
I was invited to intend by one of the organisers due to my interest in both digital media and health. I work in a Media, Film and Journalism department at Monash University and am particularly interested in how wearable technologies interact with the user’s experience and, more generally, shape, condition and organise how we see health and illness.
- What was a key takeaway point/issue/insight for you from the event?
The general focus of consumer wearable companies is increasing functionality (functionality sells), in particular variegating the number of sensors and the speed with which data is collated. However, I think the main question for clinical practice is not merely gathering more data but working out how best to communicate the data to both clinicians and patients. I think we should be thinking about what we want from the technology rather than looking to accommodate increased functionality.
There is a push towards translation devices and this could be very useful for CALD communities. With adaptive technologies such as Google Now, there is a capacity for real time assistance in communication and this would be beneficial. Based on what I saw at the symposium, one useful approach would be to bring a communication information provider (such as Better Health) into clinical practice. The devices (such as smartphones and tablets) could provide an interface to the information provider and this could be pointed to and referenced in the consultation. If the information is bookmarked by the device, the patient could refer back to it in their own time and this would assist with comprehension and follow up visits.
- What’s one of the main questions you’d like to have answered by followup research?
One area that I think should be researched is the when and where of data communication – what is revealed to the user and at what time? Should there be a delay in the communication of information to patients? What information should only be available to the clinician? Should the device only provide alerts rather than constant updates? These questions are crucial to clinical practice and would involve thinking about device limitation as much as functionality.
Hope Mathumbu: Community Engagement Officer, Centre for Culture, Ethnicity and Health
- In what capacity did you attend and why were you interested to be there?
I attended the seminar because I work at CEH as a Community Engagement Officer in the area of sexual and reproductive health promotion. There are very few people across the world who have not been touched or affected by modern technology. As a keen Sci-Fi fan, as well as health promotion worker, I was also interested to be in a space where great minds gathered to explore the possibilities and consequences of merging health with technology and science.
- What was a key takeaway point/issue/insight for you from the event?
Overall, because technology is such an evolving landscape and health open to various interpretations, I do not think there was a takeaway point/issue/insight from the event. I liked a question that asked for definitions of ‘wearable technology’ and ‘health.’ One of the panellists – Suneel Jethani – responded that he would include (as a wearable technology) a rubber band worn on a wrist and flicked when the feelings of bad cravings for smoking came along. By his definition, it was something that one could wear, but also use as a reminder to change behaviour/promote health, thus wearable technology. On the flip side of that, Suneel also argued and other panellists echoed, that we can then become so involved in achieving ‘good’ or ‘bad’ data that we try and ‘cheat’ these systems, because our inherent nature of wanting to be ‘good human beings’ gets in the way of objective collection and interpretation of data.
- What’s one of the main questions you’d like to have answered by followup research?
I really liked the question that addressed wearables and their significance for collective societies, with which most people from CALD and Indigenous backgrounds identify. Overall I do think there was a less emphasis on the part that addressed CALD communities and the reason for this is because most companies in wearables operate under a capitalist, white ideology, geopolitical and socio structures. It would have been great to have representation or examples from smaller companies who had portfolios or interests in the communities we spoke about, whether in Australia or overseas. But I also understand how difficult it is to find such examples in a market that is over-represented by an almost homogenous view of what wearable technologies can achieve. One speaker, Sean McClowry, touched on this diversity briefly when he spoke about HIV testing technology in Rwanda.
I also liked the questions around ‘who owns the data, where does it go etc’ as I think it touches on key bioethical concepts that my love of Sci-Fi makes me paranoid about! Overall a great symposium – we still have a lot to consider!
James Brooks-Dowsett, Policy & Advocacy, Education & Practice Development, Australasian Sonographers Association
- In what capacity did you attend and why were you interested to be there?
With the miniaturisation and commercialisation of technologies traditionally reserved to a medical environment, I attended as a representative of the sonography profession in Australia and New Zealand to contribute to the discussion on the use and application of these technologies now and into the future.
- What was a key takeaway point/issue/insight for you from the event?
Although wearable devices have an important role in health promotion and encouraging people from all backgrounds to increase interest in and awareness of their health, there is real risk in overinflating the relevance of these technologies to medical diagnosis, monitoring and care. Most of the technologies in question are rudimentary measurement devices (for example, heart rate monitoring), so have a very narrow focus of application. Additionally, they are released to the public through a commercial model that does not provide the rigour and testing usually applied to approved medical equipment.
There is also the question around how these technologies are being used and the results interpreted. For example, ultrasound provided in a medical facility is provided and interpreted by a doctor or sonographer with over five years of higher education and training. This assures the technology is used appropriately and not in a way that could cause harm to the patient. Conversely, the growing commercial availability of these technologies could lead to people unintentionally harming themselves.
Finally promoting these devices as ‘health technologies’ builds a false confidence with users as to the status of their health; a risk that is exaggerated in people with poor health literacy and CALD groups. This false confidence could reasonably result in members of the public not seeking advice from medical specialists when it is appropriate due to poor understanding or over inflated confidence in interpreting the data from these devices.
- What’s one of the main questions you’d like to have answered by follow-up research?
Does owning a device such as a Fitbit encourage people to holistically improved their health or just exercise? For example, do they engage in other less healthy behaviours thinking this is balanced out by their exercise?
Does wearing these devices enhance people engagement with and understanding of Australian health services? And does cultural background have an influence on this?
Dr. Elise Sullivan, Director, Australian Academy of Clinical Leadership
- In what capacity did you attend and why were you interested to be there?
I was representing the Australian College of Nursing – I was particularly interested in how wearables could impact on nursing roles, and how nurses could use these to provide better nursing care and support to people from CALD communities.
- What was a key takeaway point/issue/insight for you from the event?
As these technologies advance and people do have access to good quality information about their bodies, they will become less passive recipients of their care and more active participants – they know more, they want more control. This provides an opportunity for nurses to reshape their role from being the ‘do-er’ to being the ‘sense maker’, the mentor and coach, the teacher, the enabler. I think this paradigm shift will also help nurses take a more collaborative and sensitive approach to engaging with people from different backgrounds so these people are empowered and not disempowered when they enter healthcare. And I imagine some nurses will find this an easier transition than others who see this as eroding their role!
3. What’s one of the main questions you’d like to have answered by followup research?
How do these advances change the role of nursing – and what can nurses do to make the shift so they are part of progress?
Watch or listen to these interviews of speakers and participants at the conference:
Deloitte Digital partner Sean McClowry on the market potential and risks of wearable health technologies, and why countries like Kenya, and its ‘Silicon Savannah’, may be pointing the way in terms of benefits and applications for CALD communities.
Suneel Jethani is a PhD candidate and lecturer in the school of culture and communication at Melbourne University. He talked to Croakey about how we should ‘curb our enthusiasm’ when it comes to wearable health technologies, particularly for CALD communities.
James Horton, CEO of Datanomics, talks about questions of ethics, governance and privacy around the health data collected by new technologies, but particularly, in the context of CALD communities, on the cultural overlays involved. He raises interesting questions about how different cultures perceive both privacy and different types of data in different ways.
You can also listen to this recorded interview with Janette Gogler from Eastern Health, about her presentation on a randomised control trial that looked at emerging technologies for remote patients with chronic heart failure and chronic obstructive pulmonary disease (COPD).
• See other Croakey Conference News Service reports from #WearablesCEH.
• Read the Twitter transcript here.
And thanks to all who participated by tweeting the news.
