Teaching Course 14

Using social-media to manage and research MS

Chairs: A. Thomson (London, GB)

D. Baker (London, GB)

38 What is social-media and how to use it?

A. Thomson (London, GB)

39 How to use social-media to manage and research multiple

sclerosis?

D. Baker (London, GB)

40 How patients use social-media?

J. Stachowiak (Santa Fe, US)

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Teaching Course 14: Using social-media to manage and research MS COURSE MANUSCRIPT ECTRIMS 2015 COURSE INFORMATION: DATE: Wednesday 7th October 2015 TIME: 12.30-14.00 ROOM: Hall G

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LECTURE 1: What is social-media and how to use it? SPEAKER: Alison Thomson, Queen Mary, University of London, UK TWITTER NAME: @somehow_related

The following topics will be covered:

• What is Twitter and why has it become the phenomenon it has (#MSresearch) • Harnessing the ability of 'immediate' communication • Ground rules; the major do's and don't about creating a profile as a clinician or a researcher • How it works – covering the basics and more advanced feature • Professional etiquette on Twitter • Who to follow in MS and Neurology (see Directory at end of manuscript) • Establishing and keeping followers • Essential third party tools and applications

LEARNING OUTCOMES

Upon completion of this course you will have set up a Twitter account with an appropriate homepage image, headshot and description. You will know different ways to build your network on Twitter and understand how to communicate with your followers. You will understand how lists work, how to shorten your tweets and how to delete and block tweets.

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LECTURE 2: How to use social-media to research MS? SPEAKER: Professor David Baker, Queen Mary, University of London, UK TWITTER NAME: @prof_mouse

The following topics will be covered:

• How to define and tweak research strategy using social media • Using social media to provide supportive data for grant applications • Using social media to educate people with MS about the scientific process • To define how to refer to people with MS in publications • Using Google trends as a tool to interrogate online research fads • Using social media to design a clinical trial • Using social to crowd fund research

LEARNING OUTCOMES

Upon completion of this lecture you will know how to use social media to communicate with wider community to help you to research MS.

www.ms-res.org

www.clinicspeak.com/lumbar-puncture/

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LECTURE 3: How to use social-media to manage MS? SPEAKER: Professor Gavin Giovannoni, Queen Mary, University of London, UK TWITTER NAME: @gavingiovannoni

The following topics will be covered:

• Social media beyond Twitter as an immediate, asynchronous, communication tool that allows you to communicate with a large number of patients in real time

• Using case studies to illustrate how to self-manage multiple sclerosis; for example bladder dysfunction.

• Empowering patients with knowledge and encouraging them to ask important and relevant questions in relation to the management of their disease; for example ‘what questions to ask your neurologist?’

• Tagging different posts to target different audiences and using these tags to select posts of interest, for example using IFTTT (if then then that, www.IFTTT.com )

• Using social media as a global education platform; blurring of boundaries between neurologists, other healthcare professionals and patients with multiple sclerosis; for example PML risk stratification.

• Using social media to counteract anti-science movements and ‘fads’, for example CCSVI and stem cell therapies

• Using social media to establish treatment protocols, for example strategies to switch high-risk patients from natalizumab to alemtuzumab

• Using social media to change clinical practice, for example encouraging the adoption of treating-2-target of no evident disease activity (NEDA)

LEARNING OUTCOMES

Upon completion of this lecture you will know how to use social media to communicate with patients and how to use web tools to target messages to specific groups of people. Specific examples will be used to show how social media can be used to manage MS.

www.clinicspeak.com

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LECTURE 4: How patients use social-media? SPEAKER: Julie Stachowiak

The following topics will be covered:

CASE STUDIES: Most frequent types of people/queries/comments (with short examples for each one):

• “I thought I was the only one that X!” • “Symptom X feels like… Does anyone else feel this way?” • “No one understands my X.” • “For me, X works for Y symptom.” • “My neuro is great/horrible, because…” • “I’m considering X medication. Has anyone else tried it?”

CONCLUSIONS:

• Most frequent comments and queries indicate that they don’t always feel listened to or understood by their neurologists or loved ones.

• Patients with MS WILL use the Internet and social media, often to validate opinions that differ from clinical opinions.

• However, (in my experience) there are not huge gaps between recommended courses of treatment and what patients want to do. What they really want is to be heard – prefer an “I don’t know” or “maybe” to a dismissal because the medical literature doesn’t cover the symptom.

• Neurologists need to move past the trauma of CCSVI. Again, most patients just want their symptoms acknowledged and will rarely seek radical treatment.

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REFERENCES: HOW TO USE SOCIAL MEDIA TO MANAGE MS?

Giovannoni G, Turner B, Gnanapavan S, Offiah C, Schmierer K, Marta M. Is it time to target no evident disease activity (NEDA) in multiple sclerosis? Mult Scler Relat Disord. 2015 Jul;4(4):329-33. Gafson AR, Giovannoni G. CCSVI-A. A call to clinicans and scientists to vocalise in an Internet age. Mult Scler Relat Disord. 2014 Mar;3(2):143-6. Gafson AR, Giovannoni G. Towards the incorporation of lumbar puncture into clinical trials for multiple sclerosis. Mult Scler. 2012 Oct;18(10):1509-11. REFERENCES: MS AND SOCIAL MEDIA The following is a list of select references of research on multiple sclerosis and the Internet or social media, including topics on online research, health-seeking behavior and/or treatment: Narayanaswami P, Gronseth G, Dubinsky R, Penfold-Murray R, Cox J, Bever C Jr, Martins Y, Rheaume C, Shouse D, Getchius TS. The Impact of Social Media on Dissemination and Implementation of Clinical Practice Guidelines: A Longitudinal Observational Study. J Med Internet Res. 2015 Aug 13;17(8):e193. van Kessel K, Wouldes T, Moss-Morris R. A New Zealand pilot randomized controlled trial of a web-based interactive self-management programme (MSInvigor8) with and without email support for the treatment of multiple sclerosis fatigue. Clin Rehabil. 2015 May 7. Ramagopalan S, Wasiak R, Cox AP. Using Twitter to investigate opinions about multiple sclerosis treatments: a descriptive, exploratory study. F1000Res. 2014 Sep 10;3:216. Brigo F, Lochner P, Tezzon F, Nardone R. Web search behavior for multiple sclerosis: An infodemiological study. Mult Scler Relat Disord. 2014 Jul;3(4):440-3. Synnot AJ, Hill SJ, Garner KA, Summers MP, Filippini G, Osborne RH, Shapland SD, Colombo C, Mosconi P. Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health. Health Expect. 2014 Aug 28. Colombo C, Mosconi P, Confalonieri P, Baroni I, Traversa S, Hill SJ, Synnot AJ, Oprandi N, Filippini G. Web search behavior and information needs of people with multiple sclerosis: focus group study and analysis of online postings. Interact J Med Res. 2014 Jul 24;3(3):e12. Synnot A, Hill S, Summers M, Taylor M. Comparing face-to-face and online qualitative research with people with multiple sclerosis. Qual Health Res. 2014 Mar;24(3):431-8. Magnezi R, Grosberg D, Novikov I, Ziv A, Shani M, Freedman LS. Characteristics of patients seeking health information online via social health networks versus general Internet sites: a comparative study. Inform Health Soc Care. 2015 Mar;40(2):125-38. Das S, McCaffrey PG, Talkington MW, Andrews NA, Corlosquet S, Ivinson AJ, Clark T. Pain Research Forum: application of scientific social media frameworks in neuroscience. Front Neuroinform. 2014 Mar 11;8:21. Sudau F, Friede T, Grabowski J, Koschack J, Makedonski P, Himmel W. Sources of information and behavioral patterns in online health forums: observational study. J Med Internet Res. 2014 Jan 14;16(1):e10. Mazanderani F, O'Neill B, Powell J. "People power" or "pester power"? YouTube as a forum for the generation of evidence and patient advocacy. Patient Educ Couns. 2013 Dec;93(3):420-5. Leddy S, Hadavi S, McCarren A, Giovannoni G, Dobson R. Validating a novel web-based method to capture disease progression outcomes in multiple sclerosis. J Neurol. 2013 Oct;260(10):2505-10.

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Ziemssen T, Kempcke R, Eulitz M, Großmann L, Suhrbier A, Thomas K, Schultheiss T. Multiple sclerosis documentation system (MSDS): moving from documentation to management of MS patients. J Neural Transm. 2013 Sep;120 Suppl 1:S61-6. Marrie RA, Salter AR, Tyry T, Fox RJ, Cutter GR. Preferred sources of health information in persons with multiple sclerosis: degree of trust and information sought. J Med Internet Res. 2013 Mar 17;15(4):e67. Bove R, Secor E, Healy BC, Musallam A, Vaughan T, Glanz BI, Greeke E, Weiner HL, Chitnis T, Wicks P, De Jager PL. Evaluation of an online platform for multiple sclerosis research: patient description, validation of severity scale, and exploration of BMI effects on disease course. PLoS One. 2013;8(3):e59707. Haase R, Schultheiss T, Kempcke R, Thomas K, Ziemssen T. Modern communication technology skills of patients with multiple sclerosis. Mult Scler. 2013 Aug;19(9):1240-1. Galea I, Lederer C, Neuhaus A, Muraro PA, Scalfari A, Koch-Henriksen N, Heesen C, Koepke S, Stellmann P, Albrecht H, Winkelmann A, Weber F, Bahn E, Hauser M, Edan G, Ebers G, Daumer M. A web-based tool for personalized prediction of long-term disease course in patients with multiple sclerosis. Eur J Neurol. 2013 Jul;20(7):1107-9. Haase R, Schultheiss T, Kempcke R, Thomas K, Ziemssen T. Use and acceptance of electronic communication by patients with multiple sclerosis: a multicenter questionnaire study. J Med Internet Res. 2012 Oct 15;14(5):e135. Boeschoten RE, Dekker J, Uitdehaag BM, Polman CH, Collette EH, Cuijpers P, Beekman AT, van Oppen P. Internet-based self-help treatment for depression in multiple sclerosis: study protocol of a randomized controlled trial. BMC Psychiatry. 2012 Sep 11;12:137. Ford DV, Jones KH, Middleton RM, Lockhart-Jones H, Maramba ID, Noble GJ, Osborne LA, Lyons RA. The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS. BMC Med Inform Decis Mak. 2012 Jul 18;12:73. Dlugonski D, Motl RW, Mohr DC, Sandroff BM. Internet-delivered behavioral intervention to increase physical activity in persons with multiple sclerosis: sustainability and secondary outcomes. Psychol Health Med. 2012;17(6):636-51. Boeschoten RE, Nieuwenhuis MM, van Oppen P, Uitdehaag BM, Polman CH, Collette EH, Cuijpers P, Beekman AT, Dekker J. Feasibility and outcome of a web-based self-help intervention for depressive symptoms in patients with multiple sclerosis: a pilot study. J Neurol Sci. 2012 Apr 15;315(1-2):104-9. Chafe R, Born KB, Slutsky AS, Laupacis A. The rise of people power. Nature. 2011 Apr 28;472(7344):410-1. doi: 10.1038/472410a. PubMed PMID: 21525907. Wicks P, Massagli M, Kulkarni A, Dastani H. Use of an online community to develop patient-reported outcome instruments: the Multiple Sclerosis Treatment Adherence Questionnaire (MS-TAQ). J Med Internet Res. 2011 Jan 24;13(1):e12. Frost J, Okun S, Vaughan T, Heywood J, Wicks P. Patient-reported outcomes as a source of evidence in off-label prescribing: analysis of data from PatientsLikeMe. J Med Internet Res. 2011 Jan 21;13(1):e6. Miller DM, Moore SM, Fox RJ, Atreja A, Fu AZ, Lee JC, Saupe W, Stadtler M, Chakraborty S, Harris CM, Rudick RA. Web-based self-management for patients with multiple sclerosis: a practical, randomized trial. Telemed J E Health. 2011 Jan-Feb;17(1):5-13. TWITTER DIRECTORY: Neurology Conference Twitter accounts : @ACTRIMS

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ACTRIMS, The Americas Committee for Treatment and Research in Multiple Sclerosis, was founded in 1995 to serve as the US and Canadian counterpart @ECTRIMS ECTRIMS is an independent representative European-wide organisation devoted to multiple sclerosis (MS). @theABN_Info Offers information for consultant neurologists, trainee neurologists and their patients in the United Kingdom. MS Char ity , Fundras ing events & pat ient groups Twitter accounts : @mssociety Multiple sclerosis stops people from moving. We exist to make sure it doesn't. @mssocietyuk The UK's largest charity for people affected by MS. @MSTrust We are here to support people with multiple sclerosis, their friends and families. @SVIChapter Mission: be a leader in finding a cure and enabling people affected by MS to enhance quality of life @WorldMSDay Bringing the world together to campaign with & for everyone affected by multiple sclerosis. An initiative of MS International Federation & its network @MSIntFederation The MS International Federation is a unique global network of MS organisations. @AsianswithMS National Board of Asians withi Multiple Sclerosis. Raising awareness and supporting MS'ers @UKMSRegister The UK MS Register is an innovative project to capture peoples experiences of living with MS in the UK Neurology Journal & Magaz ine Twitter accounts : @nature International weekly journal of science. Editorials, News & Views, corrections and primary research coverage here @NatureMedicine Nature Medicine is a biomedical research journal devoted to publishing the latest advances in biomedical research for scientists and physicians. @TheLancet Welcome to The Lancet on Twitter. Keep in touch with The Lancet, one of the world's leading general medical journals, published weekly since 1823. @NEJM The New England Journal of Medicine (http://NEJM.org ) is the world’s leading medical journal and website. @NeurologyNow

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Your trusted resource for brain health. Neurology Now magazine is a free public service of the American Academy of Neurology. @NeurologyToday Neurology Today is the official newspaper of the American Academy of Neurology, published by Wolters Kluwer Health/Lippincott Williams & Wilkins. @neuroscience Neuroscience | Latest news, research, books and journal articles in neuroscience, neurology, psychology and alzheimer's disease. … @sciencemagazine The world's leading outlet for scientific news, commentary, and cutting-edge research. Follow @NewsfromScience for our latest news. @PLOS PLOS accelerates progress in science and medicine by leading a transformation in research communication. @NatRevNeurosci Nature Reviews Neuroscience features reviews, perspective articles and the latest research news. Tweets are from the editors. @NeurologyCP Neurology® Clinical Practice is an official publication of the American Academy of Neurology. @NEJM The New England Journal of Medicine (http://NEJM.org ) is the world’s leading medical journal and website. @newscientist The best place to find out what’s new in science – and why it matters. Medica l Inst i tut ional & Societ ies Twitter accounts : @ABNTrainees Twitter feed of the ABNT - please follow for neurology trainee news @bmj_latest The BMJ aims to lead the debate on health, and to engage doctors, researchers and health professionals to improve outcomes for patients. @StudentBMJ For medical students and junior doctors, from the British Medical Journal @BartsMSblog Explaining the Good, Bad and Other MS Research News @SocSocMed Advancing knowledge for population health http://socsocmed.org.uk/join/ @RCPLondon Representing 30,000 physicians, we set standards of medical practice, provide education/training, advise on healthcare & home to award winning@RCPmuseum.

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Figures in the f ie ld Twitter accounts : @XMontalban Neurologist, Cemcat, H. Vall d'Hebron (Barcelona), President of ECTRIMS @bengoldacre NEW BOOK collected journalism OUT NOW http://goo.gl/5JUasQ Doctor, nerd cheerleader, Bad Science person, stats geek, procrastinator @RFarrell_CNR Consultant Neurologist, UCLPartners Centre for Neurorehabilitation and Queen Square Centre for MS @KlausSchmierer Neuroscience & MSology @tim_coetzee Chief Advocacy, Services and Research Officer at the National MS Society Looking for some inspirat ion? Try these Twitter accounts : @TEDTalks The official feed for http://TED.com . Ideas worth spreading. @LegoAcademics The female academics of the Lego Research Institute take on the challenges of modern academia. CC-BY-NC-SA @RunningMadProf Doctor, Researcher, Award-Winning Science Communicator. Director, Institute of Infection & Global Health, Univ Liverpool Walton Centre NHS… @MARLODONATO Author of Awkward Bitch, My Life with MS. Fashionista, Musician, MS'er, Vlogger, Lover of life, wife of Tim Love, and proud mother of 2 beautiful children @pintofscience A yearly science festival taking place in pubs in May - across the UK & globally. Get in touch and join us to communicate the latest science research!