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Social media and the path to
empowerment: We’ve got the power!
Simon R. Stones
Doctoral Researcher in Child and Family Health and Patient Research Ambassador
School of Healthcare, University of Leeds
Carion Fenn Foundation Support Group Meeting
@SimonRStones
About me
3
Juvenile idiopathic (rheumatoid) arthritis
Undifferentiated
Unknown
cause
One or more
inflamed joints
Onset before
the age of 16
Arthritis Research UK (2017)
Juvenile Idiopathic Arthritis
1 in 250 children in the US
have JIA
Over 300,000 in the US
living with JIA
Higher female: male ratio for most sub-types
Systemic
Polyarticular
(RF+ or RF-)
Oligoarticular
Psoriatic
Enthesitis
-related
4
Fibromyalgia
Fibro Fibrous tissues such as tendons and ligaments
My Muscles
Algia Pain
A fibromyalgia diagnosis often feels like the last resort
diagnosis… when nobody seems to really know what is wrong
PAIN
FATIGUE
BRAIN FOG
Mild Severe
Tired Walking dead
A little slow Losing it
Using technology for
health purposes
6
Nomophobia is on the rise
The mobile phone has become an extension of our bodies
Smartphones have overtaken laptops as the most popular
device for getting online
Lookout, 2012
7
Technology in the healthcare context
Advancements in technology have enabled health professionals to
better diagnose and treat people with health conditions
However, the uptake of technology to enable people with health
conditions to better self-manage their conditions has been slower
and poorly accepted
With the increased use of electronic medical records, telehealth
services, and mobile technologies, health professionals, patients and
carers are starting to see the benefits that these new medical
technologies can bring
Healthcare Business & Technology, 2015
8
Mobile and tablet apps can help you to track your
health, as well as connecting you with other people
Track your health
• Monitor your symptoms, treatments
and questions
• View the small and big picture
Connect, and learn from others
• Share experiences
• Give and receive support and guidance
• Feel that you’re not alone
9
The ins and outs of tracking capabilities using
mobile and tablet technology
Why do people track?What do people track?
Activity
Food
Weight
Sleep
Mood
The top 5 choices
Motivations Sub-categories
To improve
health
To cure or manage a condition
To achieve a goal
To find triggers
To answer a question
To identify relationships
To execute a treatment plan
To make better health decisions
To find balance
To improve
other aspects
of life
To maximise work performance
To be mindful
To find new life
experiences
To satisfy curiosity and have fun
To explore new things
To learn something interesting
10
On average, your recorded health data accounts for
around 10% of your time each year
10%
90%
Healthcare
environment
At home, whilst
studying or in
work
With no objective measure in between!
11
Paper diaries, online diaries…
whatever works for you
It’s a great way to
express your feelings,
and also to notice any
patterns in symptoms.
12
There’s an app for just about everything these days
You need to switch off
from the busy and cray
world around us.
13
Rheumabuddy: for people with arthritis
Your personal diary
Record how you are
affected by your condition.
Consequently, you will get a
better understanding of the
different factors that affect
your condition
How is your day?
Record how you feel
regarding pain, tiredness,
mood and stiffness. You can
also use a pain map to pin
out specific pain locations
You remember it all
Choose between written
notes, sound files and
pictures to document your
day. Then you do not have
to remember everything
yourself
A great overview
Statistics will show you the
connection between your
pain, mood and level of
energy/activities
Get the most out of
your appointment
Show your rheumatologist
how you have been since
your last visit
Peer support
Share tips and advice with
other people. For example,
use the app to get a helping
hand or supportive word.
RheumaBuddy, 2016
14
Using standard apps to help what you do
I can sleep 2 hours or 12
hours… I still wake up
feeling exhausted…
Social media
16
What is social media?
It increases
exposure to your
organisation
It allows people to talk
directly with each other
“An interactive communication platform that
facilitates conversation amongst individuals”
It addresses questions
and concerns immediately
It has
transformed
the way in
which we
communicate
It allows you to reach
people around the
world
17
What’s the fuss all about?
71% of all adults in
the UK access the
internet on a
mobile phone
99% of 16 to 24
year olds use
social media
86% of the
population use
the internet, up
from 78% in 2013
In the UK, the unique
audiences of Facebook,
LinkedIn and Twitter
are 39 m, 21.8 m and
20.9 m respectively
18
Social media compared to coffee
Facebook
I like coffee, but
sometimes, I love it, other
times it makes me laugh,
cry, feel angry or shocked!
Twitter
I am drinking #coffee
Instagram
Here’s a vintage shot of
my coffee #instagood
LinkedIn
I am good at drinking
coffee
Snapchat
Just look at my
awesome coffee which
I’m drinking in Lisbon
YouTube
Watch me as I make and
drink my coffee
19
20
PatientsLikeMe
Instant
access
Historical
and
progressive
Free at
the
point
of use
’Donate’
data to
transform
research
21
Feeling supported by others who understand
is an incredible resource
Carion Fenn Network
http://togetherwearestronger.org/
Patients Canada
http://www.patientscanada.ca/
List of Registered Patient Groups in BC, Canada
10 pages worth here!
http://www2.gov.bc.ca/assets/gov/health/health-drug-coverage/pharmacare/registeredgroups.pdf
Arthur’s Place
http://arthursplace.co.uk/
The Toilet, Me & IBD
https://www.facebook.com/TMIBD/
22
Tweet chats: coffee and cake, but online!
A group of Twitter users meet at a pre-
determined time to discuss a certain topic,
using a designated hashtag (#) for each
tweet.
A host will post questions (designated with Q1,
Q2…) to prompt responses from participants (using
A1, A2…) and encourage interaction among the
group. Chats typically last an hour.
It’s a great way to meet new
people with similar interests.
There are Twitter chats in almost
every industry imaginable.
23
Here’s some tweet chats you may be interested in
http://www.symplur.com/healthcare-hashtags/tweet-chats/
Twice monthly tweet
chats for nurses and
midwives
#ebnjc
Fortnightly tweet chats
for UK nurses and
healthcare professionals
#NurChat
NurChat
British Medical Journal
Evidence-Based Nursing
Tuesday 4 pm ET
Next chat: To be announced
Wednesday 4 pm ET
Next chat: September 2017
Tweet chats every two
months about child and
young person
communication
#CYPMeFirst
Wednesday 4 pm ET
Next chat: Wednesday 13 September
Twice weekly tweet
chats for people with
autism and similar
neurodivergences
#autchat
Autchat
Tuesday/Sunday
2 pm to 4pm ET
MeFirst
Monthly tweet chats
about arthritis and
related conditions
#CreakyChats
Creaky Joints
Monday 6 pm ET
Next chat: September 2017
Regular tweet chats
related to family nursing
#IFNAChat
International Family Nursing
Association
Wednesday 5 pm ET
Next chat: To be announced
Getting involved
in research
25
Involvement, engagement and participation in
research
• Where patients, carers and/or
members of the public
are actively involved in research
projects and in research
organisations.Involvement
• Where information and
knowledge about
research is provided and
disseminated.
Engagement
• Taking part in a
research study
(what used to
be called a
‘subject’).
Participation
26
Patients, parents and carers must be involved in
every stage of the research cycle
Identifying and
prioritising
research topics
Developing a
grant
application
Assisting with the
study design
Managing the
research study
Conducting the
research
Analysing and
interpreting
results
Disseminating
results
Act on findings
Evaluate impact
Patients, parents and
carers can contribute
to all aspects of
research, including:
Identifying and
prioritising research
topics;
Developing a grant
application
alongside
professionals;
Designing and
managing research;
Undertaking the
research;
Analysing research
data;
Disseminating
research findings.
27
Finding out about research on social media
28
Research can empower patients, parents and
carers to take control of their health
Learning about
their conditions
Treatment discovery
and management
Developing self-
management skills
Peer support Empowerment
Skills and confidence
development
29
WEGO Health and WEGO Health Awards
@SimonRStones
@SimonRStones
www.simonstones.com
simon@simonstones.com

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Social media and the path to empowerment: We’ve got the power!

  • 1. Social media and the path to empowerment: We’ve got the power! Simon R. Stones Doctoral Researcher in Child and Family Health and Patient Research Ambassador School of Healthcare, University of Leeds Carion Fenn Foundation Support Group Meeting @SimonRStones
  • 3. 3 Juvenile idiopathic (rheumatoid) arthritis Undifferentiated Unknown cause One or more inflamed joints Onset before the age of 16 Arthritis Research UK (2017) Juvenile Idiopathic Arthritis 1 in 250 children in the US have JIA Over 300,000 in the US living with JIA Higher female: male ratio for most sub-types Systemic Polyarticular (RF+ or RF-) Oligoarticular Psoriatic Enthesitis -related
  • 4. 4 Fibromyalgia Fibro Fibrous tissues such as tendons and ligaments My Muscles Algia Pain A fibromyalgia diagnosis often feels like the last resort diagnosis… when nobody seems to really know what is wrong PAIN FATIGUE BRAIN FOG Mild Severe Tired Walking dead A little slow Losing it
  • 6. 6 Nomophobia is on the rise The mobile phone has become an extension of our bodies Smartphones have overtaken laptops as the most popular device for getting online Lookout, 2012
  • 7. 7 Technology in the healthcare context Advancements in technology have enabled health professionals to better diagnose and treat people with health conditions However, the uptake of technology to enable people with health conditions to better self-manage their conditions has been slower and poorly accepted With the increased use of electronic medical records, telehealth services, and mobile technologies, health professionals, patients and carers are starting to see the benefits that these new medical technologies can bring Healthcare Business & Technology, 2015
  • 8. 8 Mobile and tablet apps can help you to track your health, as well as connecting you with other people Track your health • Monitor your symptoms, treatments and questions • View the small and big picture Connect, and learn from others • Share experiences • Give and receive support and guidance • Feel that you’re not alone
  • 9. 9 The ins and outs of tracking capabilities using mobile and tablet technology Why do people track?What do people track? Activity Food Weight Sleep Mood The top 5 choices Motivations Sub-categories To improve health To cure or manage a condition To achieve a goal To find triggers To answer a question To identify relationships To execute a treatment plan To make better health decisions To find balance To improve other aspects of life To maximise work performance To be mindful To find new life experiences To satisfy curiosity and have fun To explore new things To learn something interesting
  • 10. 10 On average, your recorded health data accounts for around 10% of your time each year 10% 90% Healthcare environment At home, whilst studying or in work With no objective measure in between!
  • 11. 11 Paper diaries, online diaries… whatever works for you It’s a great way to express your feelings, and also to notice any patterns in symptoms.
  • 12. 12 There’s an app for just about everything these days You need to switch off from the busy and cray world around us.
  • 13. 13 Rheumabuddy: for people with arthritis Your personal diary Record how you are affected by your condition. Consequently, you will get a better understanding of the different factors that affect your condition How is your day? Record how you feel regarding pain, tiredness, mood and stiffness. You can also use a pain map to pin out specific pain locations You remember it all Choose between written notes, sound files and pictures to document your day. Then you do not have to remember everything yourself A great overview Statistics will show you the connection between your pain, mood and level of energy/activities Get the most out of your appointment Show your rheumatologist how you have been since your last visit Peer support Share tips and advice with other people. For example, use the app to get a helping hand or supportive word. RheumaBuddy, 2016
  • 14. 14 Using standard apps to help what you do I can sleep 2 hours or 12 hours… I still wake up feeling exhausted…
  • 16. 16 What is social media? It increases exposure to your organisation It allows people to talk directly with each other “An interactive communication platform that facilitates conversation amongst individuals” It addresses questions and concerns immediately It has transformed the way in which we communicate It allows you to reach people around the world
  • 17. 17 What’s the fuss all about? 71% of all adults in the UK access the internet on a mobile phone 99% of 16 to 24 year olds use social media 86% of the population use the internet, up from 78% in 2013 In the UK, the unique audiences of Facebook, LinkedIn and Twitter are 39 m, 21.8 m and 20.9 m respectively
  • 18. 18 Social media compared to coffee Facebook I like coffee, but sometimes, I love it, other times it makes me laugh, cry, feel angry or shocked! Twitter I am drinking #coffee Instagram Here’s a vintage shot of my coffee #instagood LinkedIn I am good at drinking coffee Snapchat Just look at my awesome coffee which I’m drinking in Lisbon YouTube Watch me as I make and drink my coffee
  • 19. 19
  • 21. 21 Feeling supported by others who understand is an incredible resource Carion Fenn Network http://togetherwearestronger.org/ Patients Canada http://www.patientscanada.ca/ List of Registered Patient Groups in BC, Canada 10 pages worth here! http://www2.gov.bc.ca/assets/gov/health/health-drug-coverage/pharmacare/registeredgroups.pdf Arthur’s Place http://arthursplace.co.uk/ The Toilet, Me & IBD https://www.facebook.com/TMIBD/
  • 22. 22 Tweet chats: coffee and cake, but online! A group of Twitter users meet at a pre- determined time to discuss a certain topic, using a designated hashtag (#) for each tweet. A host will post questions (designated with Q1, Q2…) to prompt responses from participants (using A1, A2…) and encourage interaction among the group. Chats typically last an hour. It’s a great way to meet new people with similar interests. There are Twitter chats in almost every industry imaginable.
  • 23. 23 Here’s some tweet chats you may be interested in http://www.symplur.com/healthcare-hashtags/tweet-chats/ Twice monthly tweet chats for nurses and midwives #ebnjc Fortnightly tweet chats for UK nurses and healthcare professionals #NurChat NurChat British Medical Journal Evidence-Based Nursing Tuesday 4 pm ET Next chat: To be announced Wednesday 4 pm ET Next chat: September 2017 Tweet chats every two months about child and young person communication #CYPMeFirst Wednesday 4 pm ET Next chat: Wednesday 13 September Twice weekly tweet chats for people with autism and similar neurodivergences #autchat Autchat Tuesday/Sunday 2 pm to 4pm ET MeFirst Monthly tweet chats about arthritis and related conditions #CreakyChats Creaky Joints Monday 6 pm ET Next chat: September 2017 Regular tweet chats related to family nursing #IFNAChat International Family Nursing Association Wednesday 5 pm ET Next chat: To be announced
  • 25. 25 Involvement, engagement and participation in research • Where patients, carers and/or members of the public are actively involved in research projects and in research organisations.Involvement • Where information and knowledge about research is provided and disseminated. Engagement • Taking part in a research study (what used to be called a ‘subject’). Participation
  • 26. 26 Patients, parents and carers must be involved in every stage of the research cycle Identifying and prioritising research topics Developing a grant application Assisting with the study design Managing the research study Conducting the research Analysing and interpreting results Disseminating results Act on findings Evaluate impact Patients, parents and carers can contribute to all aspects of research, including: Identifying and prioritising research topics; Developing a grant application alongside professionals; Designing and managing research; Undertaking the research; Analysing research data; Disseminating research findings.
  • 27. 27 Finding out about research on social media
  • 28. 28 Research can empower patients, parents and carers to take control of their health Learning about their conditions Treatment discovery and management Developing self- management skills Peer support Empowerment Skills and confidence development
  • 29. 29 WEGO Health and WEGO Health Awards