Dr Cristina Vasilica describes the award winning social media project for the Greater Manchester Kidney Information Network, at the Innovation Agency's #EngageWell event.

1. IMPACT OF SOCIAL MEDIA
ON PATIENT INFORMATION
PROVISION, NETWORKING
AND COMMUNICATION
GREATER MANCHESTER KIDNEY
INFORMATION NETWORK (GMKIN)
Dr. Cristina Vasilica, Twitter @cristinavas, @GMKINet
Prof. Paula Ormandy, Twitter @p_ormandy
Rob Finnigan Twitter @finnigr

3. GMKIN

4. GMKIN components
Online peer to peer support network:
Facebook (closed community) 333 members
- central route to GMKIN resources
- support mechanism and info provision
GMKIN Platform: 205 blogs, 464 comments,
514 news, 48,775 pageviews, 14,881 visitors
- source of information
- patients generated information
Twitter 4468 tweets, 942 #ff
- used by patients to follow practitioners, engage in conversations
- least preferred platform for patients

5. What makes GMKIN different ?
Recognises talent

6. What makes GMKIN different ?
Local

7. What makes GMKIN different ?
Friendship / trust

8. What makes GMKIN different ?
Peer stories (blogs)

9. Impact
Longitudinal study

10. Satisfaction of info
Case study: Jennie
Female (27) pre-dialysis. In employment. Proficient with IT (after blogging
on GMKIN has decided to do own blogging platform. Cycling and involved
with outdoor activities.
[goal] ‘The biggest goal is to show other people that is possible that
even if you are suffering from illness you can still get out there and
still do things’
[occasional use] ‘Only when I am feeling a little unwell, or a bit tired or
a bit fed up then it helps to go and have a look at it’
[info] ‘I take anti-inflammatories so it is bad for kidney…but they never tell
you why so I found out …reading the post it is best not to take them.’(

11. Health outcomes
Case study: John
Male (45) on dialysis, diabetic, reported struggling with depression.
Employed, initially struggled with the use of IT but now finds a way
around. Joined GMKIN because it is convenient and can get a voice.
Received an Ipad to access GMKIN.
[Outcome]
‘Depression you get when you are alone and when you are thinking
too much, I used to do 13 hours before even when I was on dialysis
then you I used to go there and nothing you can do and you just
think about house, about social life and you get depressed. But now
[...], through GMKIN got involved [local events, research]’
􏰀 ‘Before I did not even use my phone [...] I upgraded my phone as
well. I think I have upgraded my life’

12. Social outcomes
Case study: Don
Male (58) on dialysis for 3.5 years and diabetic. Unemployed. Low IT
skills. Wanting to improve at using technology.
Has received an Ipad to gain access
[goal] ‘I expected to be a silver surfer’
[applied for job] ‘I applied for 2 jobs, one of them I had to write
things down, like an email interview. I did not get the job though [...] It
was good experience, I never done that before’

13. What GMKIN did for my mum
‘GMKIN was the first time she had been given a lifeline that
let her deal with all her difficulties – not just her life with CKD,
but also her eating disorders and depression – on her own
terms. She found it much easier to share and confide in the other
members of GMKIN once she had built up a bit of trust, and many
of them became very close friends. As her best friend, I know that
the friends she made as part of GMKIN made the last few years
of her life infinitely less painful, and I believe they
contributed to her eating regular meals again (something she
hadn’t done for at least a decade). I only wish she had been
able to find that support network earlier in her life.
GMKIN is the only thing I ever saw that had a lasting, positive
effect on her’.

14. Clinician’s view
‘GMKIN has been a fantastic advance in enabling
communication with renal patients across Greater
Manchester. It has provided an invaluable forum in which
patients can express their views, learn what others are thinking,
and to gain advice on how to deal with issues.
It provides an excellent platform to inform renal patients about
ongoing local research opportunities, and this can only benefit the
research teams and patients themselves.’
Professor Philip Kalra, consultant nephrologist

15. People’s voices
Brian Egerton, GMKIN Contributor

16. People’s voices
Rob Finnigan, GMKIN Manager

17. GMKIN success
• Contribution to knowledge/policy impact - national guidance
on public involvement using social media:
http://www.invo.org.uk/wp-content/uploads/2014/11/9982-
Social-Media-Guide-WEB.pdf.
• Innovation Champion award for best use of social media at
the NHS Health Education England Adult Learners’ Week
Awards.
• Winning the best poster 3 times (Renal Association/British
Renal Society [BRS], 2014; BRS Annual Conference, 2015;
EDTNA /ERCA UK Seminar, October 2015).