What do Australian women think of My Health Record?

The Australian government has met with difficulties in persuading Australians to register with its national electronic health record system, My Health Record. Just one in five Australians have a My Health Record. I have just submitted an article for peer review that reports on the findings from the Australian Women and Digital Health Project in which the participants talked about their attitudes to and experiences with My Health Record in interviews and focus groups. As the Australian Digital Health Agency moves towards an opt-out process to register as many Australians as possible, the findings from this study offer important insights into what Australian women think of My Health Record.

The full preprint version of the article can be accessed here: Article – My Health Record preprint.

Here are the major findings:

• Despite their generally highly engaged use of online health and medical sources, awareness and use of My Health Record was quite low among the participants. When asked if they had signed up to My Health Record, only a third (24 out of the 66 participants) answered that they definitely had enrolled themselves. Nine women said they weren’t sure or couldn’t remember if they had registered, while the remaining 33 women responded either that they had not heard of My Health Record or they had decided not to sign up.
• The women who had registered for My Health Record said that they had done so because of the benefits they could see of being able to have a digital health record that could be shared across providers. None of the women who had registered for My Health Record made any reference to the opportunity to be able to view their health records themselves or add to them. As this suggests, there was little awareness among the participants that My Health Record had been initially designed as a patient engagement tool as well as a platform for storing their medical information and sharing it with their healthcare professionals.
• Technical difficulties were major barriers to enrolling and using the system successfully. The problem was not just My Health Record itself, but the MyGov platform on which it was hosted. Several women made reference to other services on MyGov being difficult to access and use.
• No participants had yet found any benefit or use for My Health Record. It was viewed more as a repository for the use of healthcare professionals than for women’s own active use as contributors and users of their data.
• Several participants said that they regularly had to remind their doctors that they had a My Health Record, only to find that the doctors were not using the system or uploading information, and even discouraging patients from using it.
• Recent publicity in relation to the Australian government’s misuse or lack of protection of citizens’ personal data have led to the participants demonstrating low levels of faith in the government’s capability to adequately manage My Health Record. Many participants also referred to their distrust in the Australian government to protect their medical information adequately. Government agencies were represented as incompetent rather than malicious, lacking the knowledge and skills to establish and maintain a national EHR system that was secure and effective enough to give them enough confidence or motivation to register and use it.
• In summary, these findings suggest that the Australian government needs to provide adequate and appropriate information to the Australian public about My Health Record, and particularly the opt-out process and negotiating consent to data sharing. It so doing, it will have to address wider problems of the Australian public’s lack of trust in the ways in which government agencies collect, share, protect or exploit their personal data.

 

 

Using a feminist materialism approach in empirical analysis

New feminist materialism theories potentially offer a foundation for exciting, innovative and creative ways to research health-related experiences from a more-than-human perspective. Donna Haraway, Karen Barad, Rosi Braidotti and Jane Bennett are among the most influential scholars in feminist new materialisms. These scholars’ writings are perhaps most inspiring for their insistence on emphasising the vitalities, perversities and vibrancies of human-nonhuman assemblages. Theirs is an affirmative ethics and politics, which celebrates the renewal and liveliness of the capacities that these assemblages generate. (See an earlier post on key approaches in new materialisms.)

A major difficulty with current feminist materialism empirical work is that a methodology for how to go about conducting it is often described in very vague terms: if indeed it is described at all. In the attempt to develop a clearer understanding of how researchers can take up and think with feminist materialism theory in qualitative health research, in this post I outline some approaches I have developed when conducting analyses of the social impact and lived experiences of digital health technologies (for example, health-related mobile phone apps, wearable monitoring devices, social media platforms and online discussion forums).  This is presented as a series of propositions and key questions that I have found inspiring to creatively think with rather than as a definitive ‘cook-book’ of methods. My approach incorporates both reflective and diffractive methods, depending on the research questions and materials I am working with. While post-qualitative and diffraction researchers sometimes overtly eschew what they view to be the overly-prescriptive approach of attempting to find themes or discourses in research materials, I would argue that this approach can be valuable, particularly if the research materials are voluminous.

These propositions and questions have been drawn from my reading of feminist materialism and other new materialisms theory, in conjunction with my review of and engagement with how other social researchers have taken up materialist approaches as I have discussed above. They can be used in relation to many kinds of social research material, including survey responses, media artefacts, art works and performances, interviews, ethnographic observations, policy documents, autoethnographies and many more. They can work to inspire and provoke ideas when formulating research approaches and analysing research materials.

Propositions

• Research focuses on understanding and mapping ontologies of the ‘human’ (understood as a category that is difficult to define and may include ‘more-than-human’, ‘posthuman’, ‘transhuman’ and other varieties)
• Human subjects are unstable and emergent knowing, sensing, embodied, affective assemblages of matter, thought and language
• Humans are part of and inseparable from more-than-human worlds
• Humans come together/gather with nonhumans to configure constantly changing assemblages
• These assemblages generate relational connections and affective forces and agential capacities
• Together, these connections, forces and capacities constitute thing-power
• Because of the constantly changing nature of these assemblages, there are possibilities for change, resistances or improvisations, or for thinking otherwise
• Power is transitory as it is enacted within and between assemblages
• Power is both constraining and enabling
• All matter has an agential capacity to affect and be affected
• Researchers are part of the research assemblages they are addressing
• Analyses are only ever partial, the results of specific agential cuts or interpretations of the research materials.

These propositions can be taken up in many different ways in more-than-human research. They can be developed into a series of key research questions that can be used to guide the ways in which empirical research is conceptualised and carried out, including the choice of how to approach the collection of research materials and their analysis. The following key research questions are some that I have developed for my studies on digital health.

 Key research questions for inquiries into digital health

• What are the key humans and nonhumans, practices, imaginaries, assumptions and discourses operating across different spaces and sites relating to digital health?
• What conditions of action and possibility do digital health technologies and their developers, promoters and users establish?
• What can bodies do when coming together with digital technologies?
• How are health, illness and healthcare configured and enacted?
• How do humans incorporate and improvise with digital health technologies?
• What relational connections, affective forces and agential capacities are generated?
• What is the thing-power of these assemblages?
• How is this thing-power constraining or enabling?
• What are the potentials for thinking or doing otherwise?

Research materials

In a more-than-human approach to critical social analysis, many kinds of research materials can come under investigation: not only human bodies, but those of other living things, as well as non-living objects, spaces, places and atmospheres. In the context of studies of digital health technologies, these are some possibilities (among many): human bodies (or parts of them – organs, blood, sweat, tears, bones, limbs, skin, gametes, foetuses), nonhuman animals, policy documents, news articles, journals, online patient support networks, websites, search engines, telemedicine technologies, social media content (status updates, tweets, likes, shares, hashtags), photographs, television programs, films, videos, audio recordings, digital memes, GIFs, robots, hospitals, clinics, waiting rooms, homes, furniture, clothing, wearable devices, apps, mobile devices, video games, sounds, smells, tastes, haptic sensations, digital datasets, art works, design artefacts, heart pacemakers, continuous glucose monitors, cities, rural landscapes, air, earth, water, sunshine … the list is infinitely expandable.

Examples

I have published some articles recently that apply these approaches to empirical research materials. These can be found open access at the links below:

• ‘”I just want it to be done, done, done!” Food tracking apps, affects and agential capacities’ (here)
• ‘Vitalities and visceralities: alternative food/body politics in new digital media’ (here)
• ‘”A much better person”: the agential capacities of self-tracking practices’ (here)
• ‘Wearable devices: sociotechnical imaginaries and agential capacities’ (here)
• ‘The more-than–human sensorium: sensory engagements with digital self-tracking technologies’ (here)
• ‘Vital materialism and the thing-power of lively data’ (here)