1. Online communities, technology and Health
Chris Allen
Clinical Academic Doctoral Research Fellow
Collaboration for Leadership in Applied Health Research and Care (Wessex)

2. Theme 5: Engagement with Self Directed Support
Engagement with self-directed support is a research an implementation theme of the NIHR CLAHRC Wessex.
There are some effective online resources including e-health and mobile apps available. An aim is to find out how they can best be adapted and used within the health service and in informal settings.

3. Long-Term Condition Self-Management
Any condition which at present cannot be cured, but can be managed through medication and other treatments; such as Diabetes, Chronic Obstructive Pulmonary Disease (COPD), Arthritis, Chronic Pain, Asthma. (DOH 2005, 2010, 2015)
People with chronic illness spend very little time with health care professionals compared to the time spent managing their illness in daily life. (Rogers et al, 2014)

4. Illness work
Illness (specific) work: work such as taking medication, taking and interpreting measurements, understanding condition and its symptoms, and making appointments
Everyday work: tasks such as housekeeping, occupational labour, support, and activities relating to diet and exercise, shopping and personal care
Emotional work: work related to comforting when worried/anxious about everyday matters, such as health, well-being, and companionship (including a biographical dimension relating to the reassessment of personal expectations, capabilities, future plans, personal identity, relationships and biographical events) (Vassilev et al, 2013; Rogers et al, 2011)

5. Weak ties
Those with more diverse networks manage their long-term condition better than those with less diverse ones (Rogers et al, 2014)
The internet is very good at creating weak ties
(Donarth and Boyd, 2004: Ellison et al, 2007).
It makes the process of tie formation more efficient and cognitively effective in maintaining and establishing social ties (Donarth, 2007).
May afford members a more diverse social network-since ties mediated online are not restricted by geographical boundaries that typically define offline networks (Donarth, 2007; Coulson, 2014).

6. The Internet (a timeline)
ARPANET
ETHERNET
WORLD-WIDE-WEB
INTERNET
WEB 2.0
1969
1980
1989
2004
1998
1994
2010
2006
2002
FTP & TCP/IP

7. Smart Phones

8. Stage 1: Long-Term Condition Self-Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers
Objective: To understand the negotiation of long-term condition illness work in patient online communities and how such work may assist the self-management of long-term conditions. Methods: A systematic search of qualitative papers was undertaken using various databases- for articles published since A total of 21 papers met the inclusion criteria of using qualitative methods and examining peer-led online communities for those with a long-term condition.

9. Conditions

10. Applications

11. Long-Term Condition Self-Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers

12. Long-Term Condition Self-Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers

13. Results- second order constructs
The main themes identified in relation to the negotiation of self-management support were:
Redressing offline experiential information and knowledge deficits
The influence of modelling and learning from others on self-management
Engagement which validates illness and negates offline frustrations
Tie formation and community building
Narrative expression and cathartic release
Dissociative anonymity and invisibility

14. Results- third order constucts
From this, four network mechanisms for self-management support in online communities were identified:
Collective knowledge and identification through lived experience
Support, Information, and Engagement Through Readily Available Gifting Relationships
Sociability that Extends Beyond Illness
Online Disinhibition as a Facilitator in the Negotiation of Self-Management Support

15. Summary of second- (blue) and third-order (grey) constructs in relation to the negotiation of self-management support in patient online communities.

16. Where now?
Where does this support fit within someone's whole configuration of social support?
In what contexts and circumstances do people turn to support online and offline and for what?
What are the individual (sociodemographic) and network characteristics of those who use the internet for support?

17. Where now?
Stage 3: Secondary analysis of data from the Understanding Networks of Care and Information Needs of People with Diabetes, Heart Disease and Kidney Disease (UNET) research project. What are the network level, network member and individual level factors that are associated with using the internet for long-term condition self-management.
Stage 2: Qualitative interviews and concentric circle exercises of peoples experience with online and offline networks of support.
What is the context and circumstances of engagement with patient online communities in those who use them to aid the self-management of a long-term condition and how do people perceive the support that is available in the context of their overall social network.

18. Digital divide or participation divide?
“When society understand the digital divide as a problem of access, we see government and industry as the responsible party for addressing the issue. When society understands the digital divide as a skills issue, we place the onus of learning how to manage on individuals and family” (Boyd, 2014, p. 196)

19. “The internet is a reflection of our society and that mirror is going to be reflecting what we see. If we do not like what we see in that mirror the problem is not to fix the mirror, we have to fix society.” (Vint Cerf)

20. Questions

21. References
Allen, C., Vassilev, I., Kennedy, A., Rogers, A. (2016). Long-Term Condition Self-Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers. Journal of Medical Internet Research. 18 (3). Attard A and Coulson N (2012) A thematic analysis of patient communication in Parkinson's disease online support group discussion forums. Computers in Human Behaviour 28: Barker K (2008) Electronic Support Groups, Patient-Consumers, and Medicalization. The Case of Contested Illness*. . Journal of Health and Social Behaviour 49: Brown S and Altice F (2014) Self-Management of Buprenorphine/ Naloxone Among Online Discussion Board Users. Substance Use & Misuse. 49(8): Coulson N (2014) Sharing, supporting and sobriety: a qualitative analysis of messages posted to alcohol-related online discussion forums in the United Kingdom. Journal of Substance Use 19 (1-2): Coursaris C and Liu M (2009) An analysis of social support exchanges in online HIV/AIDS self-help groups. Computers in Human Behaviour 25(4): De Silva D (2011) Helping people help themselves: A review of the evidence considering whether it is worthwhile to support self-management. The Health Foundation: Inspiring Improvement. [Accessed 13/10/2015]

22. References
Doh (2005) Self-Care- A Real Choice. Self-Care Support- A Practical Option. [Accessed 13/10/2015] Doh (2010) Improving the health and well-being of people with long term conditions: World class services for people with long term conditions- information tool for commissioners. Department of Health [Accessed 13/10/2015] Doh (2015) Policy Paper: 2010 to 2015 goverment policy: long term health conditions. . [Accessed 13/10/2015] Donarth J (2007) Signals in social supernets. Journal of Computer Mediated Communication 13(1): Donarth J and Boyd D (2004) Public displays of connection. BT Technology Journal 22(4) Ellison N, Steinfield C and Lampe C (2007) The Benefits of Facebook "Friends": Social Capital and College Students' Use of Online Social Network Sites. Journal of Computer Mediated Communication 12: Greene J, Choudhry N, Kilabuk E and Shrank W (2011) Online Social Networking by Patients with Diabetes: A Qualitative Evaluation of Communication with Facebook. Journal of General Internal Medicine 26(3): Hadert A and Rodham K (2008) The invisible reality of arthritis: a qualititative analysis of an online message board. Musculoskeletal Care 6(3): Kazmer M, Lustria M, Cortese J, Burnett G, Kim J, Ma J and Frost J (2014) Distributed knowledge in an online patient support community: Authority and discovery. Journal of the Association for Information Science and Technology 65(7):

23. References
Kirk S and Milnes L (2015) An exploration of how young people and parents use online support in the context of living with cystic fibrosis. Health Expectations Kozinets R (2013) Netnography: Doing Ethnographic Research Online. London: Sage Publications Loane S and D'alessandro S (2013) Peer-to-Peer Value Through Social Capital in an Online Motor Neuron Disease Community. Journal of Nonprofit & Public Sector Marketing 25(2): Matura L, Mcdonough A, Aglieti L, Herzog J and Gallant K (2012) A Virtual Community: Concerns of Patients With Pulmonary Hypertension. Clinical Nursing Research 22(2): Merolli M, Gray K and Martin-Sanchez F (2014) Therapeutic Affordances of Social Media: Emergent Themes From a Global Online Survey of People With Chronic Pain. Journal of Medical Internet Research 16(12): e284 Mo P and Coulson N (2014) Are online support groups always beneficial? A qualitative exploration of the empowering and disempowering processes of participation within HIV/AIDS- related online support groups. International Journal of Nursing Studies 51(7): Rodham K, Mccabe C and Blake D (2009) Seeking support: An interpretive phenomenological analysis of an internet message board for people with Complex Regional Pain Syndrome. Psychology & Health 24(6):

24. References
Rogers A, Brooks H, Vassilev I, Kennedy A, Blickem C and Reeves D (2014) Why less may be more: a mixed methods study of the work and relatedness of 'weak ties' in supporting long-term condition self-management. Implementation Science 9(19) 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 and Richardson G (2011) Social networks, work and network-based resources for the management of long-term conditions: a framework and study protocol for developing self-care support. Implementation Science 6(56) Suler J (2004) The Online Disinhibition Effect. Cyber Psychology & Behavior 7(3): Van Berkal J, Lambboij M and Hegger I (2015) Empowerment of patients in online discussions about medicine use. BMC Medical Informatics and Decision Making 15(24) Van Uden-Kraan C, Drossaert C, Lebrun T, Drossaers-Bakker K, Smit W, Seydel E and Van De Laar M (2008a) Coping with somatic illness in online support groups. Do the feared disadvantages actually occur? Computers in Human Behavior 24: Van Uden-Kraan C, Drossaert C, Shaw B, Seydel E and Van De Laar M (2008b) Empowering Processes and Outcomes of Participation in Online Support Groups for Patients With Breast Cancers, Arthritis, or Fibromyalgia. Qualitative Health Research 18(3):

25. References
Vassilev I, Rogers A, Kennedy A and Koetsenruijter J (2014) The influence of social networks on self-managament support: a metasynthesis. BMC Public Health 14(719) Wentzer H and Bygholm A (2013) Narratives of empowerment and compliance: Studies of Communication in online patient support groups. International Journal of Medical Informatics 82: Willis E (2014) The making of expert patients: the role of online health communities in arthritis self-management. Journal of Health Psychology 19(12): Zhang Y, He D and Sang Y (2013) Facebook as a Platform for Health Information and Communication: A Case Study of a Diabetes Group. J Med Syst 37(3): 1-12 Ziebland S and Wyke S (2012) Health and Illness in a Connected World: How Might Sharing Experiances on the Internet Affect People’s Health. Millbank Quarterly 90(2):