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What makes online patients' communities effective:

An interdisciplinary study informed by network analysis.

Full title: What makes online patients' communities effective: an interdisciplinary study informed by network analysis.

Acronym: TBC

Research Funder: QMUL Life Science Initiative Small Grant, supported by the Wellcome Trust Institutional Strategic Support Fund (ISSF)  

Research status: To Start

Online peer support has the potential to boost person-centred healthcare and improve health-related outcomes in a growing population of people suffering from long-term conditions.
We will be applying network analysis to online patients’ communities, to gather initial data on the topography and developments over time of social networks created by patients, and identify factors underlying their effectiveness. This analysis will inform multidisciplinary discussions including network analysis, primary care, psychology, social sciences and health economic expertises. The ultimate aim is to develop online patients’ communities into potential primary care healthcare interventions and formally evaluate them in terms of effectiveness and cost-effectiveness.. 

Investigators

Chief investigator:

Dr Anna De Simoni, NIHR Clinical lecturer in Primary Care, Blizard Institute, Centre for Primary Care and Public Health, QMUL

Email: a.desimoni@qmul.ac.uk

Co-investigator:

Dr Pietro Panzarasa (School of Business and Management, QMUL)

Prof Stephanie Taylor (Blizard Institute, Centre for Primary Care and Public Health, QMUL)

Prof Anita Patel (Centre for Primary Care and Public Health, QMUL)

Dr Robbie Duschinsky (Primary Care Unit, University of Cambridge)

Prof Neil Coulson (School of Medicine, University of Nottingham)

Ms Amrutha Anand/ or a HealthUnlocked representative (HealthUnlocked, London)

Scientific Summary

Aims

  1. Gathering initial data on the topography and development over time of a social network created by patients joining an online community and the factors underlying its effectiveness.
  2. Analysing and reporting multidisciplinary expert discussions informed by network analysis.

The ultimate aim is to develop online patients’ communities into potential primary care healthcare interventions and formally evaluate them in terms of effectiveness and cost-effectiveness.

Design and Methods

This project has 2 components:

  1. Network analysis of the online forum archives
  2. Multidisciplinary discussion meetings informed by the network analysis. The remit of the meetings is to bring social sciences(RD), psychology (NC), primary care (ADS, SJT), health services evaluation(SJT), health economics (AP) and online community platform providers (AA) perspectives to inform and interpret results of the social network analysis.

This study will provide the initial results to inform the background of a larger grant application aimed at further characterising, developing and evaluating patients’ online communities as healthcare interventions in primary care. Moreover, results will form the basis of further more specialist work on online communities in each of the multidisciplinary areas: network analysis, health economics, social sciences and psychology.

This work will be reported as conference presentation and in two peer-reviewed scientific publications:

  • A research letter reporting results of the network analysis
  • An article reporting analysis of the multidisciplinary meetings
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