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

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Simon R. Stones
Simon R. Stones

Invited speaker presentation about social media, technology and patient empowerment, delivered during the August support group meeting of the Carion Fenn Foundation in Ajax, ON, Canada.

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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