THE ROLES OF SOCIAL Consumer Health Informatics MEDIA

THE ROLES OF SOCIAL 消費者健康資訊學 Consumer Health Informatics MEDIA AND SOCIAL HEALTH DATA IN 資訊社會學 Social Informatics MEDICAL RESEARCH 個人研究領域 • 健康資訊行為 Health information behavior • 健康識能 Health literacy • 健康資訊服務設計 Designing for health information service • 使用者產製之健康資料分析 Analysis of user-generated health data • 健康資訊系統 Health information system • 學術傳播系統 Scholarly communication system

THE ROLES OF 科技部 SOCIAL 2013 -2015 醫療健康服務網站建置暨線上醫療諮詢問答意圖研究 MEDIA 2014 -2015 網路醫師評價之特徵、使用行為、醫師選擇決策分析研究 AND 2015 -2016 A Cross-Cultural Analysis of Questions and Answers in Taiwan SOCIAL e. Doctors and Health. Tap Online Medical Consultation Websites HEALTH 2016 -2018 Exploring image tagging behavior of user-contributed photos of DATA everyday medical situations: A Sociocultural Perspective IN 2018 -2020 從文獻特性、資料處理與分析特性探討社群健康資 料被利用於醫學研究之情形 MEDICAL RESEARCH 近年研究計畫

THE ROLES OF Eysenbach (2000) SOCIAL • Analyzing and modeling consumers’ health information preference, needs, behavior, and MEDIA information use. AND • Modeling and integrating consumers’ preferences into medical informationsystems. • Studying and implementing methods of making information accessible to consumers. SOCIAL • Developing and evaluating methods and applications to integrate consumer needs and preferences into information management systems in clinical practice, education, and research. HEALTH • Investigating determinants, conditions, elements, models, and processes to design, implement, and DATA maximize the effectiveness of digital information and telecommunication and network systems for consumers. IN • Studying the effects of these systems on public health, the patient-professional relationship, and society. MEDICAL RESEARCH 消費者健康資訊學之 研究焦點

THE ROLES OF SOCIAL 醫療資訊 MEDIA Medical Information AND SOCIAL 病患資訊 Patient Information HEALTH DATA 健康資訊 Health Information IN MEDICAL 消費者健康資訊 RESEARCHConsumer Health Information 相關名詞

THE ROLES OF SOCIAL MEDIA AND SOCIALOpen Data HEALTH DATA IN MEDICAL RESEARCH Government (national/public health) Healthcare Institution (primary care) Types of Healthcare Data-Driven Healthcare User-Generated Data Healthcare Services (insurance/ pharmaceutical) Web 2. 0 Online medical consultation Born digital health information services Patient support group Physician rating and review Hospital Clinic check-ins Care Provider. Generated Data Electronic Medical Records Machine generated data Hospital transaction data

THE ROLES OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH What is user-generated data ?

THE ROLES OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH In our everyday life, we have…

THE ROLES OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH Top 10 Health Questions Americans Searched on Google in 2018 1. What is the keto diet? (生銅飲食) 2. What is ALS disease? (肌萎縮性脊髓側索硬化症，俗稱漸凍症) 3. What is endometriosis? (子宮內膜異位) 4. How long does the flu last? 5. How long is the flu contagious? 6. When does implantation bleeding occur? (著床性出血) 7. How long does weed (大麻) stay in your urine? 8. Why am I always tired? 9. What does heart burn feel like? (胃食道逆流) 10. What causes high blood pressure

THE ROLES OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH Top 10 Health Questions Americans Searched on Google in 2019 1. How to lower blood pressure? 2. What is keto? (生銅飲食) 3. How to get rid of hiccups? (打嗝) 4. How long does the flu last? 5. What causes hiccups? (打嗝) 6. What causes kidney stones? (腎結石) 7. What is HPV? (人類乳突病毒) 8. How to lower cholesterol? (膽固醇) 9. How many calories should I eat a day? 10. How long does alcohol stay in your system?

What does user-generated content value? THE ROLES OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH Plain Language My self to be seen. My voice to be heard. My existence to be felt. Patient Empowerment

THE ROLES OF SOCIAL How is MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH user-generated data used in the medical research?

THE ROLES OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH D a ta - D rive n Healthcare • Promoting healthcare data transparency • Treating health-related data as a strategic and valuable asset • Leveraging health-related data to deliver clinical and financial benefits • Enhancing decision making and driving actionable plans • Improving healthcare quality

THE ROLES OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH The Use of Social Health Data In the Medical Research

THE 研究目的 ROLES Research Objectives OF SOCIAL MEDIA • Investigates the characteristics of the published journal articles AND regarding the level of acceptance of social health data by medical SOCIALresearch • Identifies the value and research objectives of the use of social HEALTH health data from the data characteristics DATA • Modeling how medical researchers interact with social health IN data from the perspective of data processing and analysis MEDICAL RESEARCH

THE ROLES OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH 文獻發表年代 Year Published 年代 篇數 質性研究 百分比 篇數 量化研究 百分比 篇數 混合研究 百分比 篇數 總計 百分比 2002 1 1% 0 0% 1 0. 3% 2003 1 1% 0 0% 1 0. 3% 2004 2 1% 0 0% 2 0. 6% 2005 2 1% 0 0% 2 0. 6% 2006 3 2% 0 0% 3 0. 9% 2007 2 1% 0 0% 2 0. 6% 2008 5 3% 0 0% 5 1. 5% 2009 4 2% 0 0% 1 4% 5 1. 5% 2010 4 2% 2 1% 0 0% 6 1. 8% 2011 6 4% 2 1% 1 4% 9 2. 7% 2012 12 7% 0 0% 12 3. 6% 2013 12 7% 17 12% 32 9. 6% 2014 20 12% 13 9% 0 0% 33 9. 9% 2015 20 12% 19 13% 2 8% 41 12. 3% 2016 24 14% 30 21% 5 20% 59 17. 7% 2017 27 16% 33 23% 6 24% 66 19. 8% 2018 22 13% 21 15% 6 24% 49 14. 7% 2019 1 1% 4 3% 1 4% 6 1. 8% 總數 168 100% 141 100% 25 100% 334 100%

THE 文獻所屬期刊之期刊引用指標分布 ROLES Citation Index Distribution OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH 質性研究 期刊引用指標 量化研究 混合研究 總計 篇數 百分比 SCIE 94 56% 74 52% 14 56% 182 54% SSCI+SCIE 28 17% 34 24% 4 16% 66 20% 無收錄 27 16% 27 19% 5 20% 59 18% SSCI 19 11% 6 4% 2 8% 27 8% 總數 168 100% 141 100% 25 100% 334 100%

THE 文獻出版期刊所屬醫學學科領域分布 ROLES JCR Subject Classification: Medicine OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH 質性研究 醫學領域 量化研究 混合研究 總計 篇數 百分比 MEDICAL INFORMATICS 49 16. 9% 48 21. 0% 8 19. 5% 105 18. 8% PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH 27 9. 3% 27 11. 8% 5 12. 2% 59 10. 5% MULTIDISCIPLINARY SCIENCES 8 2. 8% 10 4. 4% 0 0. 0% 18 3. 2% PSYCHIATRY 7 2. 4% 8 3. 5% 1 2. 4% 16 2. 9% PSYCHOLOGY 13 4. 5% 2 0. 9% 0 0. 0% 15 2. 7% MEDICINE, GENERAL & INTERNAL 10 3. 4% 2 0. 9% 0 0. 0% 12 2. 1% HEALTH POLICY & SERVICES 9 3. 1% 3 1. 3% 0 0. 0% 12 2. 1% PSYCHOLOGY, CLINICAL 7 2. 4% 3 1. 3% 0 0. 0% 10 1. 8% COMPUTER SCIENCE, INTERDISCIPLINARY APPLICATIONS 0 0. 0% 9 3. 9% 0 0. 0% 9 1. 6% ONCOLOGY 6 2. 1% 3 1. 3% 0 0. 0% 9 1. 6%

THE 文獻出版期刊是否屬於開放取用期刊 ROLES Open Access Journal OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH 質性研究 量化研究 混合研究 總計 OA 篇數 百分比 是 99 59% 81 57% 12 48% 192 57% 否 69 41% 60 43% 13 52% 142 43% 總數 168 100% 141 100% 25 100% 334 100%

THE ROLES OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH 網站屬性 社群資料來源網站之屬性 Types of Websites 質性研究 量化研究 混合研究 總計 篇數 百分比 128 73% 130 90% 22 88% 280 81. 4% 未說明 25 14% 3 2% 3 12% 31 9. 0% . org 法人組織 13 7% 9 6% 0 0% 22 6. 4% 國家網域 6 3% 0 0% 6 1. 7% . gov 政府網域 0 0% 2 1% 0 0% 2 0. 6% . edu 學術教育機構 1 1% 0 0% 1 0. 3% . net 網路網域 1 1% 0 0% 1 0. 3% 其他 1 1% 0 0% 1 0. 3% . idv 個人網域 0 0% 0 0. 0% 175 100% 144 100% 25 100% 344 100% . com 商業網域 總數

THE ROLES OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH 取用形式 資料取用形式 Types of Data Access 質性研究 量化研究 混合研究 總計 篇數 百分比 156 93% 131 93% 23 92% 310 92. 8% 封閉式取用 7 4% 7 5% 1 4% 15 4. 5% 限制取用 4 2% 2 1% 1 4% 7 2. 1% 禁止使用期限取用 0 0% 1 1% 0 0% 1 0. 3% 其他 1 1% 0 0% 1 0. 3% 168 100% 141 100% 25 100% 334 100% 公開取用 總數

THE ROLES OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH 資料追蹤方式 Types of Data Tracking Strategies 質性研究 追蹤取徑 量化研究 混合研究 總計 篇數 百分比 121 66% 111 74% 18 72% 250 69. 6% 以隨機取樣或探索方式 37 20% 16 11% 3 12% 56 15. 6% 以特定角色進行追蹤 26 14% 22 15% 4 16% 52 14. 5% 以超連結為基礎進行追蹤 0 0% 1 1% 0 0% 1 0. 3% 以涉己事務進行追蹤 0 0% 0 0. 0% 184 100% 150 100% 25 100% 359 100% 以關鍵字/事件/議題進行追蹤 總數

THE ROLES OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH 蒐集方式 資料分析策略 Data Analysis Strategy 質性研究 量化研究 混合研究 總計 篇數 百分比 167 92% 19 9% 5 15% 191 45. 2% 電腦輔助文本分析/文本探勘 7 4% 85 41% 23 68% 115 27. 2% 情緒分析與意見探勘 2 1% 37 18% 0 0% 39 9. 2% 社會網絡分析 3 2% 22 11% 4 12% 29 6. 9% 關聯分析 0 0% 24 12% 1 3% 25 5. 9% 時序分析/趨勢分析 0 0% 14 7% 1 3% 15 3. 5% 數值/類型分析 0 0% 7 3% 0 0% 7 1. 7% 其他 2 1% 0 0% 2 0. 5% 181 100% 208 100% 34 100% 423 100% 質性內容分析 總數

THE ROLES OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH Five Common Research Topics 1. Drug addiction 2. Cancer (breast cancer) 3. Smoking and e-cigarette 4. Mental health (Depression, autism, ADHD) 5. General health (healthy life style, high blood pressure, stress and relaxation)

THE ROLES OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH Special Topics 1. Twitter, Zika, and Conspiracy theory 2. Weibo, breast cancer, misinformation transmission 3. Facebook, LBQ females, conception 4. Facebook, experience of medical encounter, quality of patient care 5. Twitter, brace (牙齒矯正), bully (霸凌)

THE ROLES OF SOCIAL MEDIA AND Clinical Healthcare Delivery Medical Research • Provide important information about patients’ • Impacts positive from patient engagement, to SOCIAL condition between medical visits population health, and eventually to public health • Gathers information on an ongoing basis HEALTH rather than at one point in time • Directly engages patients in medical research DATA • Provides information relevant to preventive and chronic care management IN • Improves patient-physician relationship, and may reduce face-to-face clinic visits MEDICAL RESEARCH Value of User-generated Data In Healthcare

THE ROLES Challenges of Blending User. OF generated Data SOCIAL Into Medical Research MEDIA AND 1. Trust SOCIAL HEALTH 2. Privacy DATA 3. Data access IN 4. Data configuration MEDICAL RESEARCH

THE ROLES OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH Thank you! Questions? Comments?

THE ROLES OF SOCIAL • https: //healthmedia. com. tw/main_detail. php? id=44822 MEDIA • https: //www. researchgate. net/publication/256290162_Using_Twitter_to_Examine_S moking_Behavior_and_Perceptions_of_Emerging_Tobacco_Products AND • https: //dl. acm. org/doi/abs/10. 1145/2531602. 2531675 SOCIAL • https: //enews. nhri. org. tw/%e 6%90%9 c%e 5%b 0%8 b%e 9%97%9 c%e 9%8 d%b 5%e 5%ad HEALTH %97%e 3%80%8 c%e 6%b 4%97%e 6%89%8 b%e 3%80%8 d%e 9%a 0%90%e 6%b 8%ac 21%e 5%9 c%8 b%e 6%96%b 0%e 5%86%a 0%e 8%82%ba%e 7%82%8 e%e 7%96%ab%e 6%83%8 DATA 5%e 7%88%86%e 7%99%bc%e 9%80%9 f%e 5%ba%a 6/ IN MEDICAL RESEARCH Image credits

THE ROLES OF SOCIAL MEDIA AND SOCIAL HEALTH DATA IN MEDICAL RESEARCH 社群媒體與 社群健康資料 在醫學研究中之角色 邱銘心 副教授 國立臺灣師範大學圖書資訊學研究所 p h o e b e c h i u @ n tn u. e d u. tw 2020. 9. 18