Emma can track her diabetes with a simple app. Emma enters her food, exercise, weight, blood sugar levels and sets up medication reminders. Suzanne uses the latest wearable device to track her running route and distances walked. She also keeps track of her sleeping patterns since she hasn’t slept well over the last month.
Richard uses his tablet to treat schizophrenia. The tablet has a sensor that communicates to central health databases and tells health professionals if Richard has taken his medication.
Participatory Health Revolution Track
This is the participatory revolution in health, where people use wearable and mobile devices and swallow sensors to track their health, and take control of their lives.
Latest figures indicate two in three Australians have a social media account and most spend almost the equivalent of one day a week online. 90% of Australians will be online in 2017, and most Australian households will have 24 connected devices to their homes (such as alarms, phones and computers).
According to researchers, there are more than 160,000 apps for medical and wellness. An estimate 485 million wearable devices will be release each year by 2018, according to experts. This self-tracking and connectivity can have implications on health care delivery. This connectivity is changing the way researchers collect and analyze data.
The public has now become the study subjects , and the collection tool. This data can be share in new ways. Emma’s data from her app can be use to guide her diabetes treatment, and to fill her medical records. Emma is now an active participant in the management of her health care.
Emma could also sign up for an online community that allows her to publicly share personal health information. She can use new platforms to donate data for the public good.
It is possible that Emma or other diabetes researchers will have access to this data and make use of it for their own benefit. The implications of data sharing are not well-known.
Emerging Risks Track
Emma decides to upload her personal information to one these data sharing sites; she is in charge and empowered. She believes there is little risk, as the website promises anonymity. There are, however, risks. Some unintended.
Researchers suggest that publicly available data could be combine to find negative behaviours associated with certain conditions. These negative behaviours could then be associate with certain social or cultural groups, increasing the possibility of stigmatization.
Consent and privacy also being question more frequently due to the constant movement and flow of data. Many unaware of where their data being use and where it goes. A recent draft report indicates 13% of Australians own a wearable device like the one Suzanne uses to track her running, walking and sleep.
What percentage of people aware that the location and well-being data collect by wearable devices sent back to the companies selling them, and use in ways we don’t know?
This Is How Participatory
A recent report paints a picture of Australians poised to embark on this revolution. It was found that 87% of people would book appointments online, 74% would use home cholesterol diagnostic kits, 70% would order prescriptions via a mobile app, 61% would video-consult with their doctor on their computer, and 70% would communicate by email, text, or social media with a doctor, or any other health professional.
Is this a good idea for everyone? Researchers argue many health and medical apps are mental health specific but few people use them. A recommendation from a doctor is more convincing than downloading the app yourself. Until now, most discussion has been on people’s capacity to use apps and wearable devices to promote their autonomy as truly empowered citizens.
However, there are also concerns that digital technologies could reduce autonomy. Data movement to businesses without consent or individual knowledge is one example. Richard’s monitoring of his schizophrenia medication use could be another example. This case is digital paternalism.
Ethical Guidance Track
To mitigate the emerging risks of participatory healthcare, ethical guidance is essential. We must ensure that participation in data sharing and tracking is not just data generation but also empowers and partners.
Researchers institutions will need guidelines for determining the legitimacy and trustworthiness of publicly shared data. Researchers and their ethics committees will have to agree on the boundaries between data collector and data subject.
It important to consider who controls data and what rights will be grant to that data. It is also important to better understand the effects of new technology and mental health apps on people with mental illness.