Professor Deborah Lupton from the University of Canberra has been researching social and cultural dimensions of health and medicine throughout her career, with a more recent focus on the patient use of digital technologies.

Presenting at the Australian Telehealth Conference (ATC) hosted by the Health Informatics Society of Australia (HISA), Prof. Lupton discussed the range of digital tools Australian women used as information sources for their pregnancies and early stages of motherhood as revealed by her research into the area.

With users starting from period and fertility trackers, pregnancy apps were highly popular tools – used by approximately 75% of women in the study – and 50% used infant caring apps such as growth, development, sleeping and feeding monitors.

Women loved these apps because of the reassurance they provided during a period when they were told they were at their most fragile, and for the instant answers they provided. One participant commented that she ‘didn’t have to pester anyone, like her Mum’ over concerns that may or may not need a midwife’s attention.

However, Prof. Lupton noted that the rise in popularity of fetal doppler smartphone attachments had raised concerns among the midwives she had presented to. Designed to provide reassurance to patients in monitoring their babies, the midwives were concerned that the devices could raise anxiety if negative results were detected in an environment without medical expertise to provide guidance. A quick search on the pregnancy forums reveals many panicked posts relating to doppler use, some simply because the user didn’t know how to properly operate the equipment.

Another thing to keep in mind is the contextual nature of the data that is collected and presented to the user. For some, these apps are just entertainment whereas, others use the data for action and decision-making. The type and amount of data submitted to such media platforms needs to be assessed in terms of privacy and the value of the information in terms of output.

“Healthcare professionals tend to have certain expectations of what health and medical data can offer them for their professional practice. In comparison, lay people value these data in other ways, based on their meaning and usefulness for their everyday lives.” (Lupton, 2016)

On the other hand, the community that forms around pregnancy and parenting websites allow for the social and cultural needs of this group to be met through bonding and even anonymity. Women whose families were overseas or estranged could talk with others who had been through similar situations as them.

The communities allowed women to discuss embarrassing or perhaps frowned-upon topics which they felt could not be discussed with their own mother or clinician.

YouTube was a popular tool for learning practical how-to’s such as assembling a cot, folding and unfolding a pram, nappy changing, and the all-important swaddling technique. Being able to review the videos multiple times allowed the women to learn at their own rate, as opposed to being taught in a state of overwhelm by an experienced person who moves too fast.

Facebook, while good for sharing information on baby’s development with family and friends, has shown to be an excellent place for making new contacts with local mothers. Facebook groups are a way for hospital mothers’ groups to keep in touch, and also for local groups to facilitate face to face meet-ups, discuss the best playgrounds and childcare options, and recommend healthcare facilities.

Prof. Lupton also presented on other research she has conducted with people who use self-tracking tools for other reasons, noting that app usability design is lacking when considering users’ social and physical demands. The example given was an app that required all information be entered by midnight otherwise the day is entered as a no-data day, which can be difficult for someone who has a busy life and might prefer to enter the information the next day.

Other constraints included calorie trackers that did not account for users on various medications (which affects the users’ nutrition or metabolism needs); fitness or weight loss apps not accounting for chronic illness or a user’s variance in day-to-day state of health; and ability to use the hardware or software such as apps that don’t have adjustments for touch, vision or speech inputs.

Interestingly, many of these health apps have the disclaimer ‘this app is for entertainment purposes only’ to remove any medical responsibility. The NHS has developed an accreditation system for healthcare apps in England, however research into mental health apps with such accreditation shows that the apps supported by clinicians in their development are twice as effective than those that are not.

Regulating health apps would be an enormous job for any health organisation, as thousands are released to the market every day. Instead, patients need to be encouraged to seek out quality, and to be better educated about data privacy. Prof. Lupton’s research found that overall, Australian women were either unaware or uninterested in the My Health Record, which is due to be extended to all Australians by the end of the year. Security and privacy concerns have been repeatedly raised over the program by privacy spokespeople, yet the public remain mostly unaware of its existence, let alone the issues at stake.