The ability to access and disseminate information through digital communication networks (e.g. internet, mobile phones) is affecting societal activities including national and local politics [1, 2], accountability  and health care . Changes in health provision receive attention on social media such as Twitter . In the health area, lay-controlled networked groups, such as mothers of young children and people with rare diseases, are becoming powerful, special-interest, political lobby groups. However, this phenomenon is not replicated across all health issues, population groups and contexts . In this scoping study we are focusing on networks using digital communication and controlled by lay people, that is, people who are not part of formal health care systems but may be interested in health for themselves or on behalf of other people including society more generally. The networking related to health may be within a wider social networking context such as ‘Mumsnet’  where health issues come and go. We suggest that it is important to understand the impact on health and the health care system of these lay-controlled networked groups, and how and why their effects vary.
Our overall questions are:
• What is the impact of health-related, lay-controlled networked digital communication on health and health systems?
• How does impact vary in different contexts?
• Why does it vary?
We present scoping work undertaken to develop research to address these questions.
Aim of the project
Our scoping searches of published literature establish the:
- extent to which the phenomenon is documented
- evidence of the prevalence of these networks related to health
- characteristics of documented networks and how they vary
Our case studies of 3-5 identified networks explore their structure, function, participants and impact. We seek to understand:
- how they came into being
- how they sustain themselves and what changed as they matured
The scoping study
We are searching for published literature (peer reviewed, non-peer reviewed, news items) using standard search engines. There are likely to be networks that only include lay people and others that are more diverse including lay people, professionals, organisations and databases. Our scoping searches will reveal the variation.
We are seeking literature about networks towards the ‘lay only’ end of the spectrum. We are reading titles and abstracts and where necessary the whole article to identify relevant literature. We are then reading and summarising this literature.
We are selecting case studies (3-5) for further examination. So the case studies are straight forward our criteria for selection are: each case can be defined and clearly differentiated from each other and they are relatively well documented. Some networks will be very transient. We acknowledge that these will not be included in this current scoping study. We will enhance the evidence from published literature about the cases with data from websites/social media and where appropriate key informant interviews (email or telephone). We will use established case study analysis methods .
Relevance to policy and practice
Lay controlled networked communication in relation to health is likely to increase as access increases further and the public seek to use it to improve their situation. Governments, health care policy makers and health care providers will need to understand the potential impact of lay controlled networked communication including how to respond in a way that enhances benefit and limits harm, whilst respecting individual autonomy. The impact may be greater in countries where accountability of health providers and associated governance is weak, leading to inefficient and inadequate health system performance. Innovative approaches to enhancing community representation, ownership and participation in health service policy formulation have been advocated . Increased understanding of networked activities that have, or have not, improved accountability and hence performance is important evidence for policy and practice.
1. Harsin J. The Rumour Bomb: Theorising the Convergence of New and Old Trends in Mediated US Politics. Southern Review: Communication, Politics & Culture, 39(1):84-110.
2. Biondo T. Brazil: Citizen Journalism for Small Town Change [http://rising.globalvoicesonline.org/blog/2013/11/22/brazil-amigos-de-ja...
3. Sagar R. Secrets and Leaks: The Dilemma of State Secrecy. Princeton University Press; 2013.
4. Griffiths F, Cave J, et al. Social networks – The future for health care delivery. Social Science & Medicine 2012, 75(12):2233-2241.
5. King D, Ramirez-Cano D, et al. Twitter and the health reforms in the English National Health Service. Health Policy 2013, 110(2–3):291-297.
6. Mumsnet: By Parents For Parents [http://www.mumsnet.com/]
7. European Network of Excellence in Internet Science [http://www.internet-science.eu/]
8. Yin R: Case Study Research: Design and Methods, Fifth edn. London: Sage 2013.
9. World Health Organisation (WHO) Regional Office for Africa: Health Systems in Africa. Community Perceptions and Perspectives. Brazzaville: World Health Organisation; 2012.