Tools for patient-driven health aren’t enough, we need agents of change
Melanie Swan of MS Futures Group in Palo Alto recently published a paper on emerging patient-driven health care models in the International Journal of Environmental Research and Public Health.
She writes about the impact of a number of technological innovations on patient empowerment, specifically health-focused social networks, deeper individual health understanding through genetic profiling and self-knowledge through quantified measuring.
The paper provides a good overview of these technologies, including a useful pyramid categorisation of social networking behaviours in the health context: Emotional support and information sharing; Physician Q&A; Quantified self-tracking and Clinical trials access.
She celebrates these technologies as drivers of patient-empowerment. This is where the paper ends and it leaves many problems unanswered.
The principle of my argument is that the technologies she refers to are best thought of as the tools of already empowered ‘patients’, rather than agents of empowerment themselves.
There is promise in these and other technologies. It is important that people are able to take ownership of their health and their interactions with health services. However we can’t afford to assume that technology will automatically provide empowerment. There needs to be an appropriate level of service that actively engages people with lower levels of technical and organisational literacy.
The real key to empowered health is the quest for health literacy. This campaigning and democratic element was missing from this paper. These are early days for people-driven health and although there is plenty to celebrate in technology, we need agents of change as well as tools.
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