Lunchtime Talk: Evaluation of Shift.ms

In this talk Matt Gieve and David Drabble describe the recently completed evaluation of Shift.ms, an online social network for people with multiple sclerosis.

This talk took place in April 2014 as part of the TIHR’s ‘Food for Thought’ lunchtime series.

Transcript

1. The Evaluation of Shift.ms Lunchtime Seminar 09/04/14
2. Introduction •  Introduction to Shift.ms •  The Evaluation – Approach – Findings •  Wider thoughts
3. What is Shift.ms? •  Web-based social network •  Younger people with Multiple Sclerosis (MS) •  Launched in 2008 •  5000 members •  Set up to address: –  Age inappropriateness of much existing support and information for MS –  The lack of social and emotional support for the recently diagnosed with MS.
4. Aims of shift.ms – Support MSers through the adjustment and emotion following diagnosis; – Empower MSers through the interaction and peer support created from our social network; –  Encourage MSers to create and engage with relevant, informative and entertaining online content; – Inspire MSers not to give up on their ambitions, but to rethink how to achieve them.
5. The Evaluation •  Scoping  phase   –  Stakeholder  interviews  (9)   •  Mission  and  USP  of  shi;.ms,  evidencing  benefit   •  Clarifying  values,  aims,  target  groups   –  Theory  of  Change  event  with  shi;.ms  users  and  collaborators   •  Access  to  InformaGon,  social  and  emoGonal  support  (community),  health   behaviours,  coping  with  MS  and  geHng  on  with  life   •  Online  survey    with  Shi;.ms  users  (357)   –  Demographic  informaGon   –  Health  informaGon  (5D  5Q  5L)   –  Site  use   –  Outcomes  and  impacts   •  In-­‐depth  qualitaGve  interviews  with  Shi;.ms  users  (8)   –  User  narraGves   –  Exploring  the  posiGon  of  shi;  in  users’  lives      
6. Research questions •  What is the profile of Shift.ms users? •  What impact does Shift.ms have on its users? •  Do these impacts vary between different kinds of user? •  What is it about Shift.ms that produces these impacts? •  What can Shift.ms do to improve its service?
7. Impact on knowledge and understanding
8. 72.1% 71.4% 52.6% 48.7% 22.7% 22.1% 0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0% User experiences Insights and tips to cope with my conditions Treatment choices Research Entitlements to benefits and support Offline support services Impact on knowledge and understanding
9. Access to information •  User experiences: everyday challenges, successes and disappointments •  Tips: mobility aids, reducing side effects of treatments, addressing symptoms •  Treatment choices: DMDs, Vitamin D •  Research: via other users, the Barts blog, and “hot topic videos” videos •  Support: Disability rail cards •  Verification
10. Impact on social and emotional life
11. 58.7% 58.0% 39.7% 30.3% 0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% I feel supported and encouraged by other Shift.ms members Using Shift.ms has made me feel less isolated I feel a sense of ownership and belonging to Shift.ms I've made friends from Shift.ms Impact on social and emotional life
12. Social and emotional support •  Welcoming, non-judgemental •  Empathy, universality, feeling understood •  Indirect emotional support •  Belonging and ownership: informal moderation “well – [shift.ms] has been supportive in that before I was very isolated, in a sense when you go to the MS society, fundraising info, MS nurses, that’s fine, but there is no kind of soft side, it doesn’t connect you to the people going through the same thing as you.”
13. 3. Coping and getting on with life
15. Coping with MS and getting on with life “Other people have gone through this and they have survived and they are living their lives, education, work, children, social lives, holidays, it makes you feel normal again”
16. 11.88% 19.03% 28.91% 32.00% 40.60% 88.12% 80.97% 71.09% 68.00% 59.40% Any benefit Access to information Social and emotional support Coping with MS and getting on with life Health behaviours Key findings No impact Some impact on user's life
17. Overall impacts 81% 59% 68% 71%
18. Impacts which vary between users •  Types of user most likely to report impacts: –  diagnosed with MS recently (in the last 2 years) (92.4% have some impact, 86.7% for long-term) –  younger (under 40) (94.8% any impact for younger, 81.5% for older) –  use the site regularly (94.9% have impact, 83.9% conversely) –  Made friends through shift.ms (100% report some impact, 82.6% conversely) –  For people who had less than 2 years between diagnosis and joining Shift.ms (57.3% of the users who quickly joined had impact on coming to terms with MS; late joined only 27.5% had an impact) Overall Shift.ms gives more benefit to more pro-active and robust users who joined soon after diagnosis: the outlook of the user is crucial
19. Key findings •  Relationship between social benefits and coping with MS clearer than relationship with information access to health behaviour •  Different levels of impact for different users but something for almost everyone •  Main beneficiaries are Shift.ms’s core targets: –  Users who had been diagnosed recently with MS (in the last 2 years) –  Younger users (under 40), –  Regular users (at least weekly) –  Users who have made friends –  Users with relapsing and remitting MS
20. Lesson 1: Virtual communities •  Bodiless communication hinders empathy •  This was a community: shared place, attitude and characteristics •  Community norms, backed by a clear mission allow the society to function •  Online platforms are more flexible, adaptable and used more instrumentally
21. What factors lead to the development of a positive community? •  Membership •  Tone and appearance •  Functionality •  Content
22. Being understood •  Quotes “people who know what it is like” •  Question of narrowing scope even further vs vibrancy •  What sorts of thing can understand you? •  Books, films  
23. Social and emotional dimensions of health •  Stress and MS •  Co-morbidity •  Quality of life / holistic view of health •  Diet and lifestyle •  Medical •  “getting on with your life”
24. http://shift.ms/topic/finding-it-hard-to-except/ http://shift.ms/resources/belong/