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  • ----- Meeting Notes (4/02/14 13:57) -----Thank you for coming todayI'm pleased to see so many people share my interest in health and technology Today we ar going to give an introduction to the use of social media, web-based interventions and new technologies for participatory health.My name is Sylvia. I'll be the course convenor for the day, and will, hopefully be able ot answer any of your questions about the course. Looking forward to getting to know you all today and hope you enjoy this as much as I know I'm going to.
  • First of all, just some housekeeping. Toliets are located straight ahead as you head out the door - and then to your left.If there is a fire or an emergency of some kind, the emergency exit is straight outside, where you came in and then we meet across the road next to the form centre at haymarket lanePlease turn your phones to silentOK. we'll I thought I'd briefly tell you about my research interests and area. I finished my PhD in psychology last year and started here at the dgp. I conducted an RCT to investigate the use of a mobile-phone self-monitoring tool with young people who attend GP and may be experiencing mental health problems. We gave young people mobie phones with an app so they could monitor their mood, stress, coping strategies and daily activities up to 4 times a day for 2-4 weeks and then feed this information back to young people with their GPs via a website. We found that self-monitoring increased young people's awareness of their moods and stressors and that awareness, in turn, decreased their depressive symptoms. This study was a worldfirst and now I am working on another youth friendly tool to facilitate help-seeking for ymental health problems. This project, called Link, is funded by the YAWCRC in collaboration with ReachOut. We are developing an online triage program that young people can access online to guide them trhough a series of questions to assess the content of their problem, the severity of the problem and the types of care they would like, such as online chat, online therapy, fact sheets, phonelines or f2f care. We then recommend to young people several options that fit with their choices. We are also conducting an RCT due to start this year.OK. We have tried to make this day as interactive as we can while providing you with the information you'll need. So this morning will be some presentations and this afternoon will be a good chance to discuss your needs and interests. So, I've been to a lot of courses where there is a parking lot, where people can stick up their coments/questions and ideas to refer to later, which I have done at the back of the room. But, I also thought it'd be good to try our new found social media skills and tweet anything you ike during the day and I will refer to these each time before we break. So, if you have anything you want to raise during presentations, please tweet to this hashtag and I'll mention it.
  • ----- Meeting Notes (4/02/14 14:23) -----This is our schedule for the day. It's in your booklets and we'l have regular breaks to network and to refresh. This morning, I'll introduce the course and Fernando will talk about participatory health, social media and self-monitoring. Elizabeth will then discuss web-based interventions. And after lunch we will have a workshop lead by Jane and a panel discussion.
  • ----- Meeting Notes (4/02/14 14:23) -----Just wanted to highlight some of the main findings from the pre-course survey.We have a good representation of univerisity staff, ML, hopstical and clinical staffFairly even spread of those interested in web-based interventions and social media. I neglected to put self-monitoring on the survey, so I'm not sure if anyone has a particular interest in tracking. ONly one person was mainly interested in participatory health and that may be due to the recency of the term.
  • Should I leave this out?In terms of confidence with social media and web-based interventions, on average, we scored about 2.5/5 on each, a little lower for posting on social media sites and a little higher on professional use, which I found more nteresting as I recently set up the department's social media and struggled a fair amount until Fernando came to my rescue.So, I guess one of the aims of the course today is to lift this to 3 or hopefully 4 to give you all a bit more confidence in using these technologies.
  • ----- Meeting Notes (4/02/14 14:23) -----OK. Why are we here today? We know that the internet is a commonly used resource for the general public today. with over 80% of the population regularly accessing information on line. Interestingly, of this 80%, there is 80% that search for information about health online. That is a significant portion of the population.
  • ----- Meeting Notes (4/02/14 14:23) -----It doesn't stop with the internet though. Most people in australia own a mobile phone.In fact, several people in Asutralia own more than one mobile phone, which is why we have an ownership rate of 130% here.Smartphones - mobiles with internat capabilities, rather than mobiles that just allow you to text and talk, are also prolific with estimates in 2013 ranging from 60 to over 80%This is huge, in America the latest estimates, as far as I'm aware, were 31% smartphone use.People also access information and support about health on their phones. They can call to make an appointment, search for information online, use an app…In fact, there are over 45,000 apps available for the iphone (let alone androids) i the fitness health and medical categories. This is a huge amount of programs available for people about their health.
  • ----- Meeting Notes (4/02/14 14:23) -----I'm just going to briefly introduce you to these concepts today starting with Web 2.0 and ending with participatory health. Fernando will then take over and provide you with more information.
  • So what is web 2.0?First conception of the internet was the Advanced Research Projects Agency Network (ARPANET) in 1963. The internet became publicly available in 1991 with Web 1.0Web 1.0: Producers publish info to consumers. Static. Very text based. Not a lot of sounds or graphics, mostly about connecting to informationWeb 2.0: in 1999. P&C is one and the same. dynamic. Easy interfaces allow users to put up anything they like. Wiki Is a prime example of user driven content.
  • The beauty of Web 2.0 is that there is no training or particular programming skills needed to post information on the web. Anyone can do it and share or view information.
  • The beauty of Web 2.0 is that there is no training or particular programming skills needed to post information on the web. Anyone can do it and share or view information.
  • Social media “a group of internet-based applications that build on the ideological and technological foundations of Web/ 2.0. and that allow the creating and exchange of user-generated contentIs the main source of user-driven contentIt is fluid, dynamic, spontaneous, pervasiveConsits of photos, text, sound – in several places. Facebook and twitter – well knownBut also pinterest, youtube, fliker, snapchatUsed for many reasons – primarily social interactions, but can also to connect people about their hobbies, businesses, fanclubs, information
  • Social media has huge potential for clincial practice.Great way to keep informed about recent advances recommendations, epidemicsAble to share your own knowledge with other professionals. Researchers can easliy communicate with clinicians, visa versa. Clinicans can get support from their collagues about a tough caseHas the potential to improve the quality of care of our patients.
  • Self-monitoring is linked to the increased functionality of web 2.0
  • We have self-monitoring in terms of sensory eyewear, wrist bands that track exercise and sleep and mobile phone apps that allow you to track your mood and stress, weight, calories, medication, blood sugar and so on.
  • Increasingly web-based interventions are becoming available and may be useful in the prevention or early intervention of diseases as well as treatment, particularly for hard to reach people in rural communities or when leaving the house is difficult.
  • Moodgym is a prime example. This is a 12 module course that takes 1 hour each week for 12 weeks and is a structured cognitive behaviour therapy program that you can take instead of seeing a psychologist. It’s also free.There are issues about compliance, but people who complete more that 5 modules have had significantly improvement mental health
  • Fernando is going to go through participatory health in detail,
  • but I just wanted to show you this diagram from one of our master’s students last year. Kelvin Lau. He interviewed a range of GPs and asked them about their thoughts on patients bringing in or discussing information that they found on the net. I like this diagram, it really puts it in perspective for me. You can see that the more authorative approach the GP takes the less acceptable patient’s sourcing their own information is. Clincial practice is becoming more and more patient-centred and with it GPs are having greater acceptability of internet sourced information. TKelvin also found a range of ways that GPs dealt with the web information, from the doctor-centred approach with GPs demissing or cencoring information, redirecting or referring to specialists and trustworhysourses of information. Taking the information on board to research themselves at a later time, researching dduring consultation with the patients and acknowledging and reinforcing information found on the web.
  • All this information provides us with many opportunities in clincal practice.Telehealth - Real time consultation, Telehealth (video – government definition), virtual clinics with remote access – billing, revenue. NBN, skype, google hangouts, cicsoendconnect, gotomeetingsScreening that can occur in waiting rooms or at home to identfy risks or issues that can be discussed during consultationElectronic medical records – PCEHR, roleout – state governmentElectronic prescribing – hopsitals – pharmacy. Dr Google – medical adviceSelf-monitoring/trackig, social media
  • Fast moving developing areaSlow adoption, untested technologyLittle empirical evidence that these solutions are beneficialFurthermore, whilst medication must progress through clincial trials in order to be released to the general public, it is not the case with online information or apps and therefore there is little empirical evidence that these new technologies are resulting in benefits rather than harms
  • Fast moving developing areaSlow adoption, untested technologyLittle empirical evidence that these solutions are beneficialFurthermore, whilst medication must progress through clincial trials in order to be released to the general public, it is not the case with online information or apps and therefore there is little empirical evidence that these new technologies are resulting in benefits rather than harms
  • Transcript

    • 1. An Introduction into Social Media, Web-Based Interventions and Technologies for Participatory Health Prof Fernando Martin-Sanchez, Professor Elizabeth Murray, Professor Jane Gunn & Dr Sylvia Kauer General Practice and Primary Health Care Academic Centre & Health and Biomedical Informatics Centre
    • 2. Welcome! twitter #SMePCAus
    • 3. Program Time Session 9am Registration 9.15 Intro and Background 9.45 Intro into Participatory Health Research 10.15 Social Media 10.45 Morning Tea 11am Self-monitoring 11.30 Web-based interventions 12.15 Lunch 1.15 Workshop: Implementing IT in clinical Practice 3pm Afternoon tea 3.15-4pm Panel Discussion
    • 4. Survey findings Who’s here today? Community health centre / organisations Universities Medicare Locals Hospital Clinical Practice 0 2 4 6 8 10 12 14 16 Main interest for today? Internet interventions Social media Participatory health Other 0 2 4 6 8 10 12 14
    • 5. Survey findings Confidence from 1 (not at all) to 5 (very) 5 4 3 2 1
    • 6.  82% use internet in Australia  80% of users search for health information online INTERNET USE
    • 7. 130% mobile phone ownership Smartphone estimates from 60 – 84% 45,000 apps on Apple App Store in fitness, health and medical category MOBILE PHONE USE
    • 8. Web 2.0 Social Media Selfmonitoring Participatory health Internet intervention s
    • 9. One-way communication Two-way communication Icons licenced under Creative Commons:
    • 10. Web 2.0 Social Media
    • 11. Social Media 4/Social_Media_Landscape_2013.jpg accessed 7/2/14. Licenced by Creative Commons. Attribution-NoDerivs 2.0 Generic (CC BY-ND 2.0)
    • 12. Social media potentials for clinical practice • Keep up to date • Share knowledge with other professionals • Improve quality of care • Need caution – E.g., Legal disclaimers on online messages – Privacy issues – Connectivity issues
    • 13. Web 2.0 Social Media Selfmonitoring
    • 14. Self-monitoring devices
    • 15. Web 2.0 Social Media Selfmonitoring Internet intervention s
    • 16. Web-based interventions
    • 17. Web 2.0 Social Media Selfmonitoring Participatory health Internet intervention s
    • 18. Patient-centred care Less GP acceptability Censor Dismiss Internet-sourced information Redirect Refer Research later Reflect Reframe Research together Greater GP acceptability Acknowledge Reinforce Relationship Model Doctor-centred care Patient-centred care Sourced from Dr Kelvin Lau‟s Masters Thesis Department of General Practice, 2013
    • 19. Virtual clinics Screening Electronic medical records Electronic prescriptions Dr Google – sourcing information from the web OPPORTUNITIES
    • 20. Sourcing information from the web „Do no harm‟ Privacy issues CHALLENGES
    • 21. • Don‟t have the answers but: – The capabilities are exciting and full of potential – People are using it and we can‟t ignore that • What we can do? – Test it ourselves and our patients in clinics – Assess the potential risks vs benefits – Always with a critical eye
    • 22. Introduction into Participatory Health Prof Fernando Martin-Sanchez General Practice and Primary Health Care Academic Centre & Health and Biomedical Informatics Centre
    • 23. The Digitalization of Medicine • Digital revolution in other domains (banking, insurance, leisure, government,…) • The incorporation of digital systems in healthcare is lagging behind other sectors: – Reasons: complexity, privacy, volume of data, lack of demand – It has greatly affected healthcare at the hospital or research centre level. – The digital revolution has not yet reached medicine at the patient/citizen level • BUT THIS IS STARTING TO HAPPEN NOW !!!
    • 24. Consumer engagement • 75% of patients want to view their medical records online • 76% for lab test results • 65% - appointments by email • 62% - online communication with theur primary physician • Physicians are adopting IT • Mobile devices and social media Source: Optum Institute, June 2012
    • 25. Participatory Health Regina Holliday The Society for Participatory Medicine defines participatory medicine as a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which medical care providers encourage and value them as full partners.
    • 26. Participatory Health  Patients empowered, informed and involved in decision making, prevention and learning self tracking devices Social networks games Participatory Health mobile Internet of things sensors PCEHR
    • 27. Devices • • • • • • Wearables Sensors DTC lab tests Smartphones iPods Tablets
    • 28. • • • • • • • • Society for Participatory Medicine E-patients Health 2.0 Quantified Self Medicine X Patients included Medicine 2.0
    • 29. E-patients • Gimme my damn data! • The patient will see you now… • Let patients help • Nothing about me without me! • • • • • Dave de Bronkart Regina Holliday Hugo Campos Salvatore Iaconesi Marian Sandmaier
    • 30. Participatory health I. II. III. IV. V. VI. VII. VIII. IX. X. Personal genome services Personal diagnostic testing Personal medical image management Personal sensing and monitoring Personal health records Patient reading doctor‟s notes Patient initiating clinical trials Patient reporting outcomes Patient accessing health information Shared decision making Collecting data Participatory health Exchanging information
    • 31. Personal Genomics • 23andMe: assess your disease risk
    • 32. Personal diagnostic testing • “Test at home, treat online” • Urinary tract infection, strep throat, flu, cholesterol, Lyme disease, Mono, sexually transmitted diseases, pregnancy, yeast infections and others. • (Not yet evaluated by regulatory agencies)
    • 33. Personal medical image management accessed 7/2/14
    • 34. Quantified self • Self tracking / self quantifying / self monitoring • The belief that gathering and analysing data can help them improve their lives! • Groups 112, Members 17,893, Cities 89, Countries 31 • Quantified Self is a collaboration of users and tool makers who share an interest in self knowledge through self-tracking. • There are three main “branches” to our work. – The Quantified Self blog and community site. – Show and Tell meetings (Meetup groups) - Melbourne – Quantified Self Conferences (US and Europe
    • 35. Personal Health Records • Do it yourself electronic health records & e-patient community research on Crohn‟s disease:
    • 36. Open Notes – Patients reading Doctor’s notes
    • 37. Crowdsourced clinical trials • Clinical Research with the patients, not on the patients • Examples – 23andMe – Parkinson‟s Disease – PLoS Genetics, 2 new genetic associations – PatientsLikeMe – Nature Biotech. Self-reported data from 600 patients on the use of lithium for Amyotrophic Lateral Sclerosis (ALS) – Acor, RevolutionHealth, Curetogether, Genomera, Althea Health
    • 38. Patient reported outcomes • Health services and outcomes research • Measuring quality of care from the patient perspective • Promis • pcornet – national patient-centred clinical research network • pcori • NHS PROMs
    • 39. Patient accessing/organizing health information accessed 7/2/14 accessed 7/2/14
    • 40. Shared decision making
    • 41. Visualising personal health risks profiles (Juhan Sonin, MIT) (Univ. Missouri)
    • 42. The Blue Button and Blue Button + The Blue Button is a symbol for patients to view online and download their own personal health records. Meaningful use – V/D/T View/ Download/ Transmit. Blue Button+ extends the Blue Button concept to include a standardized data format and additional functionality
    • 43. • Patient apps for Improved Health Care by the IMS Institute • imshealth/Global/Content/Corporate/IM S%20Health%20Institute/Reports/Patie nt_Apps/IIHI_Patient_Apps_Report.pdf
    • 44. Creating and prescribing personalised apps • Such as
    • 45. Tensions Clinicians‟ resistance to change Patient advocates
    • 46. MEDICINE PARTICIPATORY HEALTH Provider-centric Patient or Consumer-centric Curative Proactive Passive role of the patient Active Clinical decision making Shared decision making Electronic medical record Patient Health Record
    • 47. Evolution Shenkin B, Warner D. Giving the patient his medical record: a proposal to improve the system. NEJM, 1973
    • 48. Benefits • • • • • • • • • Better outcomes Lower costs Better patient experience Motivation Deepening understanding of their health Self-improvement Risk profiling Prevention Shift terciary  secondary  primary  home care • Data donors for research
    • 49. Issues • • • • • • • • • Privacy Security Education Cyberchondria Equity Regulation, accreditation Role of the clinician Infrastructure needs Therapeutic gap (ethics)
    • 50. Dr. Charles Safran, AMIA
    • 51. Thank you for your attention! © Copyright The University of Melbourne 2012
    • 52. Social Media. Creating a professional presence, staying up-to-date and dissemination Prof Fernando Martin-Sanchez General Practice and Primary Health Care Academic Centre & Health and Biomedical Informatics Centre
    • 53. Creating a professional presence
    • 54.
    • 55. Staying up-to-date
    • 56. RSS • RSS (Rich Site Summary) is a format for delivering regularly changing web content. • Many news-related sites, weblogs and other online publishers syndicate their content as an RSS Feed to whoever wants it. For examples see
    • 57. Staying up-to-date – RSS feeds aggregator
    • 58. Netvibes
    • 59. Content curation – Scoop it
    • 60. Content curation- Scoop it
    • 61. Disseminating information
    • 62. Self-monitoring Prof Fernando Martin-Sanchez General Practice and Primary Health Care Academic Centre & Health and Biomedical Informatics Centre
    • 63. Quantified Self: The concept
    • 64. Quantified Self: The community
    • 65. New market Global annual wearable device unit shipments crossing the 100 million milestone in 2014, and reaching 300 million units five years from now. Gartner‟s hype cycle illustrates this ( 515) Corporate health plans – 13 Mill
    • 66. The Quantified Self community • Quantified Self is a collaboration of users and tool makers who share an interest in self knowledge through self-tracking. • We exchange information about our personal projects, the tools we use, tips we‟ve gleaned, lessons we‟ve learned. We blog, meet face to face, and collaborate online. There are three main “branches” to our work. – The Quantified Self blog and community site. – Show and Tell meetings (Meetup groups) Melbourne – Quantified Self Conferences (US and Europe)
    • 67. QS Lab
    • 68. White Paper
    • 69. Classification of self-quantification systems • Capture data directly from the user (Primary or Secondary) • Sensor Location (Mobile or Fixed) • Involve skin pricking (In-contact or On-body) • Data type (Environmental or Touchless) • Location of data integration (Software-based or Hardwarebased integration) • Location of data visualisation(Standalone, etc.) 75
    • 70. What to measure (adapted by Manal Almalki from WHO ICF) International Classification of Functioning, Disability and Health (ICF)
    • 71. Second white paper – user guide
    • 72. Self-monitoring Devices – information flow iBGStar Glucose Meter integrated with iPhone Aortic stenosis integrated with iPhone iRhythm TRANQS Beta myVitali TicTrac Beta Zeo sleep monitor Individual analysis Integrated Analysis FitBit
    • 73. Devices compatible with MicroSoft HealthVault • • • • • • • • • Bayer Diabetes Care Carematix: Blood Glucose Meter CareMatix: Weight scale FitBit One: Activity + sleep tracker FitBit Ultra: Activity + sleep tracker FitBit Zip: Activity tracker Omron: Blood pressure Medapp: Pulse oximeter Microlike: Blood pressure
    • 74. Self-Omics • QS as an interface to the Human Body • How much information? • People-as-sensors • Making the personal public • From population surveillance to individual surveillance Infography: Institute for Health Technology Transformation
    • 75. Benefits
    • 76. Health eHeart Study – A Digital Framingham Heart Study? • One million people Major Health Study will get its data from personal tech – Kecia • Monitor heart health in real time using smartphone Lynn (March 19, 2013) • • If 10% adults USA began a regular walking program, an • estimated $5.6 Billion in heart disease could be saved. • apps, sensors, and other devices Information to be collected includes blood pressure, diet, and sleep habits Warning signs for various heart conditions No doctor's visit is required in order to participate! FHS collects data from its participants every two years during a physical checkup, leaving gaps that Health eHeart's real-time data collection can help fill.
    • 77. Self-monitoring • Project MUM-Size – Study of very obese pregnant women – risk of complications due to anesthesia during labor – Using fitbit and social media support by research midwives in the intervention group to prevent weight gain during pregnancy – Detection of constrains (Aria scale not suitable for pregnant women, limit of 140 Kgs of weight)
    • 78. Availability of new sensors for data collection Exposome Genome Phenome Environmental risk factors (pollution, radiation, toxic agents, …) Biomarkers (DNA sequence, Epigenetics) Anatomy, Physiological, biochemical parameters (cholesterol, temperature, glucose, heart rate…) Social media / Integrated personal health record / Personal Health Systems
    • 79. References • Almalki, M, Martin-Sanchez, F & Gray, K 2013, 'Self-Quantification: The Informatics of Personal Data Management for Health and Fitness‟, Institute for a BroadbandEnabled Society (IBES). • Almalki, M, Martin-Sanchez, F & Gray, K 2013. The Use of Self-Quantification Systems: Big Data Prospects and Challenges. Proceedings of HISA BIG DATA 2013 conference. Accepted for publication at BMC Health Information Science and Systems 85
    • 80. Workshop Implementing IT in clinical practice Prof Jane Gunn PhD Candidates Marianne Webb, Mark Merolli & Manal Almalki General Practice and Primary Health Care Academic Centre & Health and Biomedical Informatics Centre
    • 81. 1.15 – 1.45pm Interview with Phd Students: Marianne Webb, Manal Almalki & Mark Merolli 1.45 – 2.45pm Small Group work 2.45-3.00pm Feedback WORKSHOP
    • 82. Online psychosocial screening tool for general practice MARIANNE WEBB
    • 83. Towards a comprehensive personal health information selfquantification system MANAL ALMALKI
    • 84. Social media for chronic pain management MARK MEROLLI
    • 85. Mark Merolli - PhD
    • 86. iInternet intervention self monitoring social media Readings • Mansfield et al (2010) Social Media and the Medical Profession: A guide to online professionalism for medical practitioners and medical students. Sourced from: • Greene et al. (2011) Online social networking by patients with diabetes: a qualitative evaluation of communication with Facebook. J Gen Intern Med. 26(3): 287-92 • Lupton (2013) Understanding the human machine. IEEE Tech Soc Mag. Winder issue • Morris & Aguilera (2012). Mobile, social, and wearable computing and the evolution of psychological practice. Prof Psy: Res Pract. 43(6): 622-6 • Whitehouse et al. (2013) Co-creation with TickiT: designing and evaulating a clinical ehealth platform for youth. JMIR Res Protoc. 2(2): e42. • Murray et al. (2012) Widening access to treatment for alcohol misuse: description and formative evaluation of an innovative web-based service in one primary care trust. Alcohol Alcohol. 47(6): 697-70
    • 87. 45 minutes What are the top 3-6 uses for this technology in clinical practice? Choose one example and make a plan for how you would introduce its use What are the challenges?
    • 88. Sharing examples of using technology in clinical practice FEEDBACK
    • 89. Slides will be available at: slideshare/SMeGPAus Connect with us @GPPHCAC #SMePCAus SMeGPAus General Practice and Primary Health Care Academic Centre & Health and Biomedical Informatics Centre