Can social networks support minimally disruptive medicine through promoting connections and mobilising resources

outside of formal medical care?

Anne Rogers

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Minimally Disruptive Medicine

• MDM a service-driven approach to care, co-created with patients. Makes sense for patients meets their goals with evidence-based approaches, in a manner consistent with their needs and preferences.

• Self-care part of aspiration for co-creation with service providers promoted as part of models encouraging better chronic illness management.

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Support for self-management which achieves desirable outcomes should be seen less as an individualised set of actions and behaviour and more as a social network phenomenon. Interventions and strategies for chronic illness management require a greater focus on harnessing and sustaining the capacity of networks and the importance of social involvement with community groups and resources for producing a more desirable and cost-effective way of supporting long-term illness management

Static unconnected models predominate?

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Professional Presumptions The Patient

enablement instrument (Howie et al)

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Patients System of Support

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The Power of Networks- Collective Behaviour

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Behaviours as collective phenomena relevant to (un)healthy behaviours and in behavioural change Nicolas Christakis - weight gain in one person is associated with weight gain in others in networks (friends). Smoking behavior spreads through close and distant social ties, groups of interconnected people stop smoking in concert Applied to chronic illness management

Work, Workforce , Dynamics and Outcomes of Patient System of Implementation for SMS

Nature and Capacity of SMS workforce describing constellation of illness-relevant network and structural properties (network size, density, degree of fragmentation)

Defining the generative mechanisms (processes, activities) capabilities and dynamics involved in illness relevant social network support.

Relational work & attributions of meaning in network division of labour (weak versus strong ties)

Outcomes: determining the set of health related outcomes from social relationships, mechanisms and the work of personal communities

The workforce and division of labour

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Who is involved in the management of chronic illness?

Bonding, Weak ties, family members, professionals, groups

Who does what?

The amount and distribution of chronic illness work differ between networks e.g. where a partner/spouse is present (or not)

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Types of work Questions

Illness

work

This person helps me with the day-to-day management of my long-

term condition.

Contingency/

improvisation

This person helps me organise tasks related to my condition,

including arranging appointments with health care staff, getting

prescriptions etc.?

Translation,

mediation and

embodiment

This person helps me understand advice so I know what I have to do

to manage my condition.

Coordination

work

This person helps me when I need to re-arrange things due to health

problems.

Advocacy work This person stands in for me or stands up for me when I am unwell or

unable to stand up for myself.

Everyday

work

This person helps me with the day-to-day running of my household.

Emotional

work

This person comforts me when I am worried or anxious about my

health problems.

Biographic

al work

This person helps me value and enjoy life.

This person helps me achieve personal goals.

JD’s Network

John

Emma

Jane N1

Kate N2

Cat

Net Draw diagrams

The Work and Workforce SMS

• Partners and close family make the highest contributions

• evidence of inputs from a wide range of relationships.

• Network member characteristics (type of relationship, proximity, frequency of contact) impact on the amount of illness work undertaken.

• A degree of substitutability. Networks with ‘no partner’ other people contribute more illness related work .

• Type of input by different members change according to circumstance

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Relational work and the attribution of meaning

• Pets in networks have unique qualities and are not simply substitutes for human relationships in long-term condition management. Pets contribute mostly to managing emotions (emotional work),

• to enhancing a sense of self identity (biographical work)

• and to a lesser extent practical tasks (everyday work).

• Pets mediate relationships for people living with a long-term condition through weak ties with others in domestic and community settings.

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Diversity & Structural Resilience

Weaker ties appear more durable and less liable to loss over time than stronger ties. ‘. Weak ties act as an acceptable bridge between a sense of personal agency and control and the need for external support because it is possible to construct a sense of moral acceptability through reciprocal exchange. Access to weak tie resources needs to be taken into account when considering the ways in which systems of health implementation for chronic illness are designed and delivered.

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Patient Systems Outcomes

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Contributions of SNMs operationalized through three generative mechanisms (network navigation, negotiation, collective efficacy) Vassilev et al (forthcoming) .

• network navigation (identifying and connecting with relevant resources in a network-),involves making decisions when and who to contact, previously un-used resource, concealing the selection of some ties over others

• negotiation within networks (re-shaping relationships, roles, expectations, means of engagement and communication between network members),

• collective efficacy developing a shared perception and capacity to successfully perform behaviour through shared effort, beliefs, influence, perseverance, and objectives.

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Figure. Self-efficacy and collective efficacy connections for effective CISM

BRIGHT RCT Effect of Information and Telephone-Guided Access to Community Support for People with Chronic Kidney Disease: Randomised Controlled Trial

Bringing Information & Guided Help Together

436 patients with early stage CKD recruited from 24 practices, randomised to intervention or usual care

Findings at 6 months

• Significant difference in blood pressure control - maintained in intervention group but not in control group

• Significant improvement in health related quality of life

• Reduction in costs for intervention group

0 10 20 30 40 50 60 70 80

Baseline 6 months % p

ati

en

ts w

ith

b

loo

d p

re

ss

ur

e …

Intervention group

Control group

0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8 0.9

1

Baseline 6 months

He

alt

h-r

ela

ted

q

ua

lity

of

life

Intervention group

Control group

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Summary of Network Support Approach in Chronic Illness

• Growing evidence and understanding about effectiveness of network support in improving health

How to use this knowledge?

• Intervene to change structure and dynamics

– Increase network diversity and collective efficacy

• Build awareness of networks for individuals, HCPs and communities

– Local knowledge, increase social capital

– Feed back information to aid planning

• Address the integration, implementation, and sustainability gaps

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Rogers A, Vassilev I, Sanders C, Kirk S, Chew-Graham C, Kennedy A, Protheroe J, Bower P, Blickem C, Reeves D, Kapadia D, Brooks H, Fullwood C, Richardson G. (2011) Social Networks, work and Network-Based Resources for the Management of Long Terms Conditions: a framework and study protocol for developing self care support. Implementation Science. 6,56 DOI:10.1186/1748-4908-6-56. Vassilev, I., Rogers, Anne, Blickem, Christian, Brooks, Helen, Kapadia, Dharmi, Kennedy, Anne, Sanders, Caroline, Kirk, Sue and Reeves, David (2013). Social networks, the ‘Work’ and work force of chronic illness self-management: a survey analysis of personal communities. PLoS ONE, 8, (4), e59723. Rogers A, H Brooks, I Vassilev, K Anne, B Christian, R David. Why less may be more: a mixed methods study of the work and relatedness of'weak ties' in supporting long-term condition self-management.(2014) Implementation Science 9 (1), 19 doi:10.1186/1748-5908-9-19 http://www.implementationscience.com/content/9/1/19 Brooks HL, Rogers A, Kapadia D, Pilgrim J, Reeves D, Vassilev I. (2013) Creature comforts: personal communities, pets and the work of managing a long-term condition. Chronic illness 9 (2), 87-102, doi: 10.1177/1742395312452620 Koetsenruijter, J, van Lieshout, J, Vassilev, I., Portillo, M C, Serrano, M, Knutsen, I, Roukova, Pi, L, Christos, T, , Foss, C, Rogers, A, Wensing, M (2014) Social support systems as determinants of self-management and quality of life of people with diabetes across Europe: study protocol for an observational study. Health and Quality of Life Outcomes, 12, (1), 29. (doi:10.1186/1477-7525-12-29). (PMID:24593668). Vassilev I, Rogers Kennedy Koetsenruijter (submitted) The influence of social networks on self-management support: a metasynthesis

Acknowledgements:

Anne Kennedy, Ivaylo Vassilev, (Southampton)

Christian Blickem Helen Brooks and David Reeves

(Manchester).

FP7 Partners: Wensing M (UmC Radboud) Todorovo

E (Sofia ) Lionis C (Crete) Foss C (Oslo); Carmen

MC (UNAV)