Chronic illness and online social networking: expectations, assumptions, and everyday realities

Lead Research Organisation: University of Leicester
Department Name: Media and Communication

Abstract

Although differences in Internet access still exist among demographic groups, the substantial growth in the use of social networking sites, such as Facebook, MySpace or Twitter, by individuals and organisations has recently revitalised policy and academic debates on the role of the Internet in health care. However, while marketing, clinical and practitioner literature on online networking and health is proliferating, social science has only just begun to address these issues. Given the recognised importance of social networks in health and wellbeing, the current rise in popularity of online networking affords a timely opportunity to learn more about their role in self-care associated with long-term conditions. Focusing on diabetes as one of the most pressing healthcare priorities, and Facebook as currently the most popular social networking site, this project will examine political and professional expectations surrounding the use of social networking sites in chronic illness management, and compare them with actual patterns of online experience. Bringing expertise from our previous research on public perceptions of health risks, and the use of new interactive media, we aim to provide access to the contextual factors that shape knowledge, attitudes and practices in relation to social networking sites and diabetes, and pinpoint potential 'gaps in understanding' which may lead to gaps in envisioning solutions in policy and practice.

We adopt an interdisciplinary approach that combines linguistic and sociological frameworks, asking what online networking does and means for people with diabetes. The Facebook site allows its users to create textual and visual content, connections, organisational and individual pages, and groups, and in this way facilitates creation and maintenance of different network types (e.g. between relatives, partners, friends as well as wider circles). Our contextual study of Facebook use by people with diabetes will therefore help us understand the role of these different networks, and of the Internet, in shaping and supporting self-care practices outside formal healthcare organizations.

Practitioners in both the diabetes education sector and broader health care sectors will be able to gain insights into how people with diabetes understand and use various networking and content-creating Facebook features in the everyday, how they evaluate their experiences, and what bearing it has on their lives and coping. The results will inform development of policy and practice initiatives aimed at provision of support for long-term conditions in the Web 2.0 age.

Planned Impact

Findings of this project will be of value to a variety of academic, practitioner and service user groups. With the increasing recognition of the importance of social media among policy makers and managers in the UK and Europe (see, for example, RVZ (2010)*, and the 'High Quality Care for All' review (2008), the proposed research will impact on the decision making of government, industry and the third sectors with an interest in computer mediated health communication. Specifically, this project will deliver insights regarding professional and lay user perspectives on social networking technologies in the context of chronic illness management, and offers methodologies which will be of great use in future analysis and evaluation of the burgeoning discourses around Health 2.0.

How would they benefit from the research?
Schein et al (2010) have recently expressed concern that public health agencies still lag when it comes to adopting social media platforms, pointing to the evidence that 'health information-seeking is migrating to social media sites like Facebook and YouTube, and there are an increasing number of health-related searches taking place on these platforms' (p. 13). At the same time, those UK organisations that already use social networking sites tend to view them as yet another channel through which they can deliver messages to audiences, a tendency that made Craig Lefebvre lament that social media is not just a new way to 'reach' people; rather 'the people we wish to engage with around specific issues need to be understood in the context of how they construct their social media space, not by how we construct it for ourselves' (2011). Only on the basis of a deeper understanding of social media communication about diabetes as being grounded in social, bodily, and cultural experiences of participants, can one then go on to devise diabetes education and social support activities in the online networking domain.

The project addresses these issues on several levels. In particular, the project will:

1. critically examine political and professional expectations surrounding the use of SNSs in relation to chronic illness and compare them with actual patterns of use and experience in order to pinpoint potential 'gaps in understanding' , which may lead to gaps in envisioning policy solutions.
2. empirically examine contextualised meanings of 'social support' in the online social networking environment for people with diabetes; this can inform development of diabetes support initiatives targeted to specific situational needs. We will explore how interaction in SNSs is used by people with diabetes in the everyday; how online activities that go beyond simple health information searches are integrated in their lives; and how social support is made meaningful (or not) through such practices and activities. Following Williams at el (2004) we argue that such qualitative study should be the first step towards quantitative assessment of support interventions in the SNS context.
3. establish online resources used, preferred and trusted by people with diabetes and plot the position of NHS sources in this context.
4. establish participants' preferred modes and ways of interaction which can inform patient-professional communication.

In general, the project will:
1. have a direct impact on the future health and well-being of the nation; as diabetes represents a serious clinical and financial challenge to the UK's health system it is important to understand how new technologies such as social networking tools impact society;
2. have a direct impact on understanding of social media uses and functionality in health communication; we propose a case study of diabetes as a starting point in a field that, it is hoped, will expand to include other conditions in future critical and contextual analyses of SNSs and health.

Publications

10 25 50

Related Projects

Project Reference Relationship Related To Start End Award Value
ES/K005103/1 01/08/2013 31/08/2014 £189,532
ES/K005103/2 Transfer ES/K005103/1 01/09/2014 31/07/2015 £93,810
 
Description this is reported in ES/K005103/2 to avoid duplication
Exploitation Route this is reported in ES/K005103/2 to avoid duplication
Sectors Healthcare

 
Description collaboration with the research charity Diabetes UK 
Organisation Diabetes UK
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution analysis of discourse on the organizational pages on Facebook; dissemination and discussion of research findings
Collaborator Contribution assistance with the recruitment of interview participants
Impact recruitment of project participants and dissemination activities
Start Year 2013
 
Description Invited talk at the University of Leicester SAPPHIRE research group 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact A mixed audience of academic peers, health professionals, students and patient groups representatives attended the talk, which sparked a lively discussion.

Change in views and discussion of future collaborative work.
Year(s) Of Engagement Activity 2014
 
Description '"Click below for more information": Organisational messages and diabetes management on Facebook'. Invited paper at the Health and eHealth Communication workshop, University of Brescia, Italy. (delivered by D Hunt) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact The discussion after our presentation has led to a valuable cross-disciplinary input (from linguists as well as from health professional in the audience).

These two invited talks initiated a discussion of a potential collaboration on a cross-disciplinary bid between QMUL and the University of Brescia.
Year(s) Of Engagement Activity 2015
 
Description 'Diabetes self-management and biological citizenship on Facebook'. British Sociological Association Annual Conference, Glasgow Caledonian University (delivered by D Hunt) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact A valuable discussion with peers -- medical sociologists.

requests for further information and collaboration.
Year(s) Of Engagement Activity 2015
 
Description BMJblogs article: Social media and health: a source of "patient voices" or "business insight?" 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Health professionals
Results and Impact The online post in BMJ blogs has facilitated dissemination of this discourse analysis-based study to health professionals and academics in the area of health. At the same time it has helped to reach a wider audience in the dissemination of project results. The BMJ's mission is to lead the debate on health, and to engage, inform, and stimulate doctors, researchers and other health professionals in ways that will improve outcomes for patients. The aim is to help doctors to make better decisions

the article was published in August 2015-- full report on impact activities will be included into the end of year report.
Year(s) Of Engagement Activity 2015
URL http://blogs.bmj.com/bmj/2015/09/08/social-media-and-health-a-source-of-patient-voices-or-business-i...
 
Description CADAAD conference, Budapest, Hungary 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact the presentation has stimulated a discussion of research findings and plans for potential collaboration

n/a
Year(s) Of Engagement Activity 2014
URL http://www.cadaad.net/cadaad_2014
 
Description End of project stakeholder workshop organised by the project members - 30 June 2015 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Participants in your research and patient groups
Results and Impact This half-day workshop led to a productive and intensive exchange of ideas and practices between different stakeholder groups: diabetes educators, people with diabetes, patient representatives, clinicians, digital managers, and researchers in the areas of linguistics, media studies, and medical sociology. The workshop consisted of presentations by project members (4 brief talks covering the results of the different work packages, 2 presentations by people with diabetes, and a presentation by a digital manager from the research charity Diabetes UK).

The feedback for the event was extremely positive, including reports of new knowledge and suggestions to inform NHS managers and policy makers about the project results.
Year(s) Of Engagement Activity 2015
 
Description Ignite presentation at Stanford Medicine X conference (by N Koteyko) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Health professionals
Results and Impact The presentation has sparked a cross-disciplinary discussion (in the audience and on Twitter) and led to new avenues for collaboration with US-based researchers.

Increase in requests for more information about the project and project publications. Further impact is yet to be assessed - upon the publication of the video from my talk. The conference reports a wide reach via social media. Last year, social media coverage of the conference reached over 5,500,000 individuals and generated over 190,000,000 social media impressions from its video livestream and Twitter hashtag #MedX. The organizers also seek to create an enduring archive of high quality video coverage of the speakers that will be available by open access through our Stanford social media channels.
Year(s) Of Engagement Activity 2015
URL http://medicinex.stanford.edu/conf/conference/speaker/530
 
Description Invited paper at the Diabetes and Metabolic Medicine seminar series, Leicester Diabetes Centre, University of Leicester, UK. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact The presentation led to the discussion of finding from the perspective of clinicians, and to the valuable input from professionals.

The talk has led to further collaboration with clinical researchers and diabetes educators. Some of the participants subsequently attendedd our stakeholder workshop.
Year(s) Of Engagement Activity 2015
 
Description Invited presentation at Inagural East London Clinical Academic Diabetes Meeting (Mile End Campus, London) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Health professionals
Results and Impact The talk facilitated dissemination and discussion of this discourse analysis-based study with health professionals and academics in the area of healtha. The audience was a mixture of academics, clinicians (including diabetes, GPs, public health), students, NHS commissioners, managers, funding organisations, Diabetes UK, and patient representatives. The presentation was disseminated and discussed on twitter using the #eastlondondiabetes

impacts to be reported in the end of year project impact report.
Year(s) Of Engagement Activity 2015
 
Description Invited seminar at the Technology and Health seminar series, Queen Mary University of London, UK. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact The talk sparked an interesting discussion where we explored the implications of our findings both for computer science research and clinical practice.

Plans were made for future collaboration through joint projects where the linguistic input may be needed.
Year(s) Of Engagement Activity 2015
 
Description Metaphors of online social networking in clinical literature. Invited research seminar talk, University of Brescia, 13th April (by Nelya Koteyko) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact The talk sparked a discussion about the use of applied linguistics methods in healthcare.

Postdocs and students who attended this talk reported an interest in future collaboration, and attended our subsequent invited talks at the University of Brescia.
Year(s) Of Engagement Activity 2015
 
Description Performing health and illness identities on social media. Invited research seminar talk, University of Brescia, 13th May (by Nelya Koteyko) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact The discussion after our presentation has led to a valuable cross-disciplinary input (from linguists as well as from health professional in the audience).

These two invited talks initiated a discussion of a potential collaboration on a cross-disciplinary bid between QMUL and the University of Brescia.
Year(s) Of Engagement Activity 2015
 
Description QMUL press release on the early findings from the project 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact As below.

The press release has led to discussion of the publication of project results in other online outlets. This has led to the publication of our article in BMJ blogs. The BMJ's mission is to lead the debate on health, and to engage, inform, and stimulate doctors, researchers and other health professionals in ways that will improve outcomes for patients. The aim is to help doctors to make better decisions.
Year(s) Of Engagement Activity 2015
URL http://www.qmul.ac.uk/media/news/items/hss/160372.html
 
Description invited lecture ( 'Analysing the use of metaphors in clinical literature'. Language Centre Professional Development event) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact This guest lecture was delivered to a group of in-sessional and pre-sessional teachers and teacher trainers at the Language Centre, Queen Mary. The lecture sparked a discussion about the benefits of the study's research design, as well as about wider social implications of this research project.

The attendees reported an increased interest in the applications of linguistic methods in the study of 'real world' problems.
Year(s) Of Engagement Activity 2015
 
Description invited presentation at 'Metaphors in Health Communication workshop', Lancaster University, UK 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact change in views, discussions of plans for further research and collaboration

n/a
Year(s) Of Engagement Activity 2014
URL http://www.raam.org.uk/conferences/raam-endorsed-events/metaphor-in-health-communication-workshop/
 
Description invited talk at the Department of English and Comparative Literature, Goldsmiths 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact This invited lecture has sparked a series of questions and requests for project outputs.

Students and academic colleagues reported a high level of interest in the methodology developed as part of the presented study.
Year(s) Of Engagement Activity 2015
 
Description invited talk at the University of Newcastle : 'Personalising diabetes: Organisational messages on Facebook pages' 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact This invited presentation to The University of Newcastle Critical Discourse Group was attended by a mix of postgraduate students and academic from different departments. The presentation sparked a series of questions and a lively discussion.

Questions after the talk included requests for project publications and suggestions for potential collaboration.
Year(s) Of Engagement Activity 2015
 
Description poster presentation 'Gratefuloldtimer: constructing life with diabetes through Facebook status updates' at Medicine X conference, Stanford University, US 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Health professionals
Results and Impact Led to an interesting discussion of methods for Internet-based research

cross-disciplinary links with academics and practitioners in the US
Year(s) Of Engagement Activity 2015
 
Description poster presentation at the the Digital Initiatives Launch Event, QMUL, 3 December. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact the presentation led to increased cross-disciplinary contacts at the university
Year(s) Of Engagement Activity 2014
 
Description presentation at Invited Colloquium 'From Practice to Theory'--British Association of Applied Linguistics (3 Sep 2015, Aston University, UK) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Discussion of the theoretical and methodological frameworks underlying the project.

impact to be reported at the end of year impact project report.
Year(s) Of Engagement Activity 2015
URL http://www.aston.ac.uk/lss/news/events/baal-annual-meeting/baal-colloquium-from-practice-to-theory/
 
Description publication in a book of blogs 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact Our contribution on the role of social media in the support of people with chronic illness has been published in a book of blogs. The BoB features contributions from 37 academics across the globe. It presents a range of disciplinary perspectives on politics and emotions, including the fields of computer science, (digital) media studies, health, journalism studies and political science.
Year(s) Of Engagement Activity 2017
URL https://pauljreilly.pressbooks.com/