Participatory health — what’s in a name?
Participatory health is a relatively new stream of thought in the literature of patient engagement. Participatory health is usually described in terms of a transformation in the patient-provider relationship and is premised upon individuals taking active responsibility for their health. To do this, they draw upon digital technologies; look to peer and social networks for support; and act as an equal partner in shared clinical decision making.
Technological empowerment is key to individuals (and their circle of support) becoming more health literate and actively engaging in and managing health. The Society for Participatory Medicine has been instrumental in articulating and popularising patient empowerment and engagement through participation. In particular, in recognising that the future of health care rests with “e-patients” as active and autonomous contributors.
The way that we view and interact with the world is altering and participatory health is an echo of complex changes underway in the broader community. Mobility and near universal smart device ownership underpin a new social contract as culture, identity and relationships shift toward sharing and participation. Participatory health is more than just better patient inclusion and a transformed patient and provider relationship, which many argue should clearly underpin the nature of any therapeutic relationship.
Participatory health is reflective of a deep and profound shift in perspective around health toward well-being and wellness, greater convenience, flexibility, self-direction and personalised experiences. But most importantly, the tools of participation open consumers to a world of alternatives that the emerging digisphere, social media and affinity networks will enable. New entrants, new funding routes, ultimate choice and highly deregulated social constructs open new pathways toward health and wellness.
Three key enablers of participation
1. Social 2.0
Social 2.0, a rich, interactive and dynamically changing virtual environment, is a core platform underpinning participatory health. Social networking tools and dynamic web capabilities combine to create channels or platforms through which consumers can obtain information, find or establish affinity with others, share experiences and encouragement.
Increasingly universal, Social 2.0 is growing into its capabilities, building the routes between the consumer and the personalised knowledge and expertise that is necessary to their well-being.
Slow to adopt the capabilities of new technologies, the health industry is now awash with wearables, devices, sensors and apps with functionalities that range from supporting health and fitness through to the management of clinical conditions. Personal technologies are foundational to participatory health as care shifts to the home or community and as self-quantification becomes part of daily life. Application is broad, ranging from personal data collection and self-monitoring through to chronic condition management and participatory epidemiology.
3. Maturing consumerism
Health care consumerism is on the rise, driven by individuals bringing a very different perspective to health. In part, due to consumers seeking value and better outcomes as they increasingly participate in self-management of health and wellness, and, as many bear more of the financial burden of their care. This shift is emerging as people expect health care to deliver what they have in other areas of their lives — connectivity, mobility, agility, immediacy and the tools for self-direction.
In the long-run, doing nothing is not an option, and some parts of the world are shifting quickly toward the vision of participatory, connected, technologically-enabled health care. A generational shift is underway and the world is moving away from legacy models that struggle to keep pace with the rapidly changing environment.
As the shifts to digitally-enabled systems evident in developing economies show, the building blocks of participatory health and the digisphere are already here. And so, it is time to reimagine health care with fresh eyes and begin the conversation about a radically different future.