From: Anne Rogers, Ivo Vassilev, and Anne Kenney; University of Southhampton
The aspiration of minimally disruptive medicine advocates is to progress the proliferation of care and management that fit with patients’ goals and contexts that people can make a ‘normal’ part of their life. The power and capacity of personal networks in this equation potentially takes this aspiration beyond the confines of traditional medical and health care settings. A trial and a recently published systematic review of likely mechanisms and capacities of networks provides some support for continuing this line of thinking.
The BRIGHT trial just published http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0109135 was predicated on the development of a programme of work incorporating the notion that social networks are implicated in providing support outside formal health services through the mobilization of resources and interaction with aspects of everyday life (for example, home, family, work, leisure and friends). The intervention centred on providing patient information incorporating lay-experiential knowledge alongside clinical information and broadening support addressing social and and personal needs through linking patients’ needs and preferences to local community resources. This trial produced positive effects in so far as the intervention was associated with modest but significant improvements in health related quality of life and better maintenance of blood pressure control for those individuals in the intervention group. However as with many trials, this takes us only so far.
Key questions remain about identifying the mechanisms of networks which are relevant here. We have considered this in a systematic meta-synthesis exploring network mechanisms as located within a broader social context shaping practices, behaviours, and the multiplicity of functions and roles that network members fulfil. http://www.biomedcentral.com/1471-2458/14/719. It seems that 1) sharing knowledge and experiences in a personal community; 2) accessing and mediation of resources; 3) self-management support requires awareness of and ability to deal with network relationships. These elements translate into line of argument synthesis in which three network mechanisms were identified. network navigation (identifying and connecting with relevant existing resources in a network), negotiation within networks (re-shaping relationships, roles, expectations, means of engagement and communication between network members), and collective efficacy (developing a shared perception and capacity to successfully perform behaviour through shared effort, beliefs, influence, perseverance, and objectives). These network mechanisms bring to the fore the close interdependence between social and psychological processes in chronic illness management (CIM), and the intertwining of practical and moral dilemmas in identifying, offering, accepting, and rejecting support. In future then minimally disruptive medicine might turn its attention to focus a bit more on: raising awareness about the structure and organisation of personal communities; building individual and network capacity for navigating and negotiating relationships in CIM environments and maximising the possibilities for social engagement as a way of increasing the effectiveness of individual and network efforts for CIM.
See our continuing work on networks in the NIHR CLAHRC Wessex, EU-GENIE (European Generating Engagement in Networks Involvement), and EU-WISE