This paper is in the following e-collection/theme issue:

Participatory Medicine & E-Patients (773) Peer-to-Peer Support and Online Communities (636) Personal Health Records, Patient-Accessible Electronic Health Records, Patient Portals (573) Consumer & Patient Education and Shared-Decision Making (679)

Published on in Vol 12, No 2 (2010): Apr-Jun

Sharing Health Data for Better Outcomes on PatientsLikeMe

Sharing Health Data for Better Outcomes on PatientsLikeMe

Sharing Health Data for Better Outcomes on PatientsLikeMe

Authors of this article:

Paul Wicks1 Author Orcid Image ;   Michael Massagli1 ;   Jeana Frost1 ;   Catherine Brownstein1 ;   Sally Okun1 ;   Timothy Vaughan1 Author Orcid Image ;   Richard Bradley1 ;   James Heywood1
Article Authors Cited by (453) Tweetations (22) Metrics

Journals

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  279. Schifferdecker K, Butcher R, Knight E, Creek E, Schrandt M, Marrow L, Jaffe M, Vinci A, Eakin G. Stakeholder Development of an Online Program to Track Arthritis‐Related Patient‐Reported Outcomes Longitudinally: Live Yes! INSIGHTS. ACR Open Rheumatology 2020;2(12):750 View
  280. Khan M, Saleh M, Quazi A. Social Media Adoption by Health Professionals: A TAM-Based Study. Informatics 2021;8(1):6 View
  281. Kazmierska J, Hope A, Spezi E, Beddar S, Nailon W, Osong B, Ankolekar A, Choudhury A, Dekker A, Redalen K, Traverso A. From multisource data to clinical decision aids in radiation oncology: The need for a clinical data science community. Radiotherapy and Oncology 2020;153:43 View
  282. Alasmari A, Zhou L. Share to Seek: The Effects of Disease Complexity on Health Information–Seeking Behavior. Journal of Medical Internet Research 2021;23(3):e21642 View
  283. Froeling F, Gignac F, Hoek G, Vermeulen R, Nieuwenhuijsen M, Ficorilli A, De Marchi B, Biggeri A, Kocman D, Robinson J, Grazuleviciene R, Andrusaityte S, Righi V, Basagaña X. Narrative review of citizen science in environmental epidemiology: Setting the stage for co-created research projects in environmental epidemiology. Environment International 2021;152:106470 View
  284. Fischer H, Cho H, Storksdieck M. Going Beyond Hooked Participants: The Nibble-and-Drop Framework for Classifying Citizen Science Participation. Citizen Science: Theory and Practice 2021;6(1) View
  285. Vigilant L, Heitkamp A, Heitkamp A. “If it Does Turn out to be Herpes, Try not to Stress Too Much”: The Contours of Emotional Support and Peer Diagnosis in an Online Sexual Health Community. Sociological Inquiry 2022;92(1):200 View
  286. Min A, Miller W, Rocha L, Börner K, Brattig Correia R, Shih P. Just In Time. Proceedings of the ACM on Human-Computer Interaction 2021;5(CSCW1):1 View
  287. Stausberg J, Harkener S, Semler S. Recent Trends in Patient Registries for Health Services Research. Methods of Information in Medicine 2021;60(S 01):e1 View
  288. Deserno T, Dugas M, Löbe M, Stausberg J. A Topical Collection on ICT for Health Science Research – EFMI Special Topic Conference. Journal of Medical Systems 2021;45(7) View
  289. Occhiogrosso R, Ren S, Tayob N, Li T, Gagnon H, Paz A, Freedman R. Feasibility of an Online Patient Community to Support Older Women With Newly Diagnosed Breast Cancer. Clinical Breast Cancer 2022;22(2):178 View
  290. Miller E, Woodward A, Flinchum G, Young J, Tabor H, Halley M. Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review. Genetics in Medicine 2021 View
  291. Hashemi M. Discovering social media topics and patterns in the coronavirus and election era. Journal of Information, Communication and Ethics in Society 2022;20(1):1 View
  292. Goldstein M, Archary M, Adong J, Haberer J, Kuhns L, Kurth A, Ronen K, Lightfoot M, Inwani I, John-Stewart G, Garofalo R, Zanoni B. Systematic Review of mHealth Interventions for Adolescent and Young Adult HIV Prevention and the Adolescent HIV Continuum of Care in Low to Middle Income Countries. AIDS and Behavior 2023;27(S1):94 View
  293. Scheer J, Volkert A, Brich N, Weinert L, Santhanam N, Krone M, Ganslandt T, Boeker M, Nagel T. Visualization Techniques of Time-Oriented Data for the Comparison of Single Patients With Multiple Patients or Cohorts: Scoping Review. Journal of Medical Internet Research 2022;24(10):e38041 View
  294. Bernuci M, de Deus S, Pascotini C, de Deus K, da Silva T. Quality analysis of the most viewed videos on YouTube about cervical cancer in Brazil. Obstetrics & Gynecology International Journal 2022;13(5):290 View
  295. Tseng H, Ibrahim F, Hajli N, Nisar T, Shabbir H. Effect of privacy concerns and engagement on social support behaviour in online health community platforms. Technological Forecasting and Social Change 2022;178:121592 View
  296. Wu P, Zhang R. Exploring the effects of health information seeking on e-satisfaction in online health communities: an empirical investigation. BMC Medical Informatics and Decision Making 2022;22(1) View
  297. Dicuonzo G, Galeone G, Shini M, Massari A. Towards the Use of Big Data in Healthcare: A Literature Review. Healthcare 2022;10(7):1232 View
  298. Barbiero P, Viñas Torné R, Lió P. Graph Representation Forecasting of Patient's Medical Conditions: Toward a Digital Twin. Frontiers in Genetics 2021;12 View
  299. Khayal I, Brooks G, Barnato A. Development of dynamic health care delivery heatmaps for end-of-life cancer care: a cohort study. BMJ Open 2022;12(5):e056328 View
  300. Yang H, Gao H. User recommendation in online health communities using adapted matrix factorization. Internet Research 2021;31(6):2190 View
  301. Liu M, Zou X, Chen J, Ma S. Comparative Analysis of Social Support in Online Health Communities Using a Word Co-Occurrence Network Analysis Approach. Entropy 2022;24(2):174 View
  302. Yogev S, Shani G, Tractinsky N. HiveRel: hexagons visualization for relationship-based knowledge acquisition. CCF Transactions on Pervasive Computing and Interaction 2022;4(4):408 View
  303. Fayn M, des Garets V, Rivière A. Collective empowerment of an online patient community: conceptualizing process dynamics using a multi-method qualitative approach. BMC Health Services Research 2021;21(1) View
  304. Nova F, Coupe A, Mynatt E, Guha S, Pater J. Cultivating the Community. Proceedings of the ACM on Human-Computer Interaction 2022;6(GROUP):1 View
  305. Merati-Fashi F, Dalvandi A, Yekta Z. Health Information Seeking and Its Achievements in Patients With Chronic Disease. The Journal for Nurse Practitioners 2022;18(4):411 View
  306. Simpson E, Brown R, Sillence E, Coventry L, Lloyd K, Gibbs J, Tariq S, Durrant A. Understanding the Barriers and Facilitators to Sharing Patient-Generated Health Data Using Digital Technology for People Living With Long-Term Health Conditions: A Narrative Review. Frontiers in Public Health 2021;9 View
  307. Thompson C, Pulido M, Babu S, Zenzola N, Chiu C. Communication between persons with multiple sclerosis and their health care providers: A scoping review. Patient Education and Counseling 2022;105(12):3341 View
  308. Zanoni B, Archary M, Sibaya T, Goldstein M, Bergam S, Denton D, Cordero V, Peng C, Psaros C, Marconi V, Haberer J. Mobile Phone–Based Intervention Among Adolescents Living With Perinatally Acquired HIV Transitioning from Pediatric to Adult Care: Protocol for the Interactive Transition Support for Adolescents Living With HIV using Social Media (InTSHA) Study. JMIR Research Protocols 2022;11(1):e35455 View
  309. Rowan W, O'Connor Y, Lynch L, Heavin C. Comprehension, Perception, and Projection. Journal of Organizational and End User Computing 2021;33(6):1 View
  310. Maher M, Khan I, Prikshat V. Monetisation of digital health data through a GDPR-compliant and blockchain enabled digital health data marketplace: A proposal to enhance patient's engagement with health data repositories. International Journal of Information Management Data Insights 2023;3(1):100159 View
  311. Lukyanenko R, Storey V, Pastor O. System: A core conceptual modeling construct for capturing complexity. Data & Knowledge Engineering 2022;141:102062 View
  312. Johnston A, Worrell J, Di Gangi P, Wasko M. Online health communities. Information Technology & People 2013;26(2):213 View
  313. Le L, Hoang P, Pham H. Sharing health information across online platforms: A systematic review. Health Communication 2023;38(8):1550 View
  314. Chen T, Wu C, Chiu M, Hsu J, Liao M, Hsueh Y, Su W. Factors Associated with the Patient/Client Use of Report Cards, Physician Rating Websites, Social Media, and Google for Hospital and Physician Selection: A Nationwide Survey. Healthcare 2022;10(10):1931 View
  315. Reinius M, Mazzocato P, Riggare S, Bylund A, Jansson H, Øvretveit J, Savage C, Wannheden C, Hasson H. Patient-driven innovations reported in peer-reviewed journals: a scoping review. BMJ Open 2022;12(1):e053735 View
  316. Brown R, Coventry L, Sillence E, Blythe J, Stumpf S, Bird J, Durrant A. Collecting and sharing self-generated health and lifestyle data: Understanding barriers for people living with long-term health conditions – a survey study. DIGITAL HEALTH 2022;8:205520762210844 View
  317. Ploderer B, Rezaei Aghdam A, Burns K. Patient-Generated Health Photos and Videos Across Health and Well-being Contexts: Scoping Review. Journal of Medical Internet Research 2022;24(4):e28867 View
  318. Merchant R, Goldin A, Manjanatha D, Harter C, Chandler J, Lipp A, Nguyen T, Naslund J. Opportunities to expand access to mental health services: A case for the role of online peer support communities. Psychiatric Quarterly 2022;93(2):613 View
  319. Khalili-Mahani N, Holowka E, Woods S, Khaled R, Roy M, Lashley M, Glatard T, Timm-Bottos J, Dahan A, Niesters M, Hovey R, Simon B, Kirmayer L. Play the Pain: A Digital Strategy for Play-Oriented Research and Action. Frontiers in Psychiatry 2021;12 View
  320. Nunes Vilaza G, Coyle D, Bardram J. Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey. Journal of Medical Internet Research 2021;23(10):e31294 View
  321. Kristensen S, Holmskov J, Baandrup L, Videbech P, Bonde M, Mainz J. Evaluating the implementation and use of patient-reported outcome measures in a mental health hospital in Denmark: a qualitative study. International Journal for Quality in Health Care 2022;34(Supplement_1):ii49 View
  322. Cheng Q, Lin Y. Multilevel Classification of Users’ Needs in Chinese Online Medical and Health Communities: Model Development and Evaluation Based on Graph Convolutional Network. JMIR Formative Research 2023;7:e42297 View
  323. Marbin D, Gutwinski S, Lech S, Fürstenau D, Kokwaro L, Krüger H, Schindel D, Schreiter S. Use of digital technologies by users of psychiatric inpatient services in Berlin, Germany: a cross-sectional patient survey. BMJ Open 2023;13(3):e067311 View
  324. Collins A, Beaudoin F, Metrik J, Wightman R. “I still partly think this is bullshit”: A qualitative analysis of cannabinoid hyperemesis syndrome perceptions among people with chronic cannabis use and cyclic vomiting. Drug and Alcohol Dependence 2023;246:109853 View
  325. Tempini N. The ethics of data self-reporting: important issues and best practices. F1000Research 2023;12:485 View
  326. Kuosmanen E, Huusko E, van Berkel N, Nunes F, Vega J, Goncalves J, Khamis M, Esteves A, Ferreira D, Hosio S. Exploring crowdsourced self-care techniques: A study on Parkinson’s disease. International Journal of Human-Computer Studies 2023;177:103062 View
  327. Brainin E, Neter E. Refined Analysis of Older eHealth Users From an Agency Perspective: Quantitative Telephone Interview Study. JMIR Aging 2023;6:e40004 View
  328. Ben-Zacharia A, Lee J, Kahle J, Lord B. Shared decision-making in multiple sclerosis physical symptomatic care: a systematic review. Therapeutic Advances in Chronic Disease 2023;14 View
  329. Raveendran S, Singh D, Burke M, McAuliffe-Fogarty A, Parikh S, McIntyre R, Roy A, Martin M, Chrones L, Opler M, Blair C, McCue M. Design of a real-world, prospective, longitudinal, observational study to compare vortioxetine with other standard of care antidepressant treatments in patients with major depressive disorder: a PatientsLikeMe survey. BMC Psychiatry 2023;23(1) View
  330. Occa A, Merritt A, Leip A, Stapleton J. What influences trust in and understanding of clinical trials? An analysis of information and communication technology use and online health behavior from the Health Information National Trends Survey. Clinical Trials 2023 View
  331. Deng Z, Deng Z, Fan G, Wang B, Fan W, Liu S. More is better? Understanding the effects of online interactions on patients health anxiety. Journal of the Association for Information Science and Technology 2023;74(11):1243 View
  332. Sedlakova J, Westermair A, Biller-Andorno N, Meier C, Trachsel M. Comparison of analog and digital patient decision aids for the treatment of depression: a scoping review. Frontiers in Digital Health 2023;5 View
  333. Rathbone A, Stumpf S, Claisse C, Sillence E, Coventry L, Brown R, Durrant A, Kocaballi B. People with long-term conditions sharing personal health data via digital health technologies: A scoping review to inform design. PLOS Digital Health 2023;2(5):e0000264 View
  334. Yang J, Ryu G, Roh T. The Effect of Information Exchange Activities on Literacy in Online Health Community: The Evidence from PatientsLikeMe. Sustainability 2023;15(16):12614 View
  335. Han J, Lee S, Lee B, Baek O, Washington S, Herlemann A, Lonergan P, Carroll P, Jeong C, Cooperberg M. Explainable ML models for a deeper insight on treatment decision for localized prostate cancer. Scientific Reports 2023;13(1) View
  336. Alnashwan R, O’Riordan A, Sorensen H. Multiple-Perspective Data-Driven Analysis of Online Health Communities. Healthcare 2023;11(20):2723 View
  337. Dahlberg M, Lek M, Malmqvist Castillo M, Bylund A, Hasson H, Riggare S, Reinius M, Wannheden C. Objectives and outcomes of patient-driven innovations published in peer-reviewed journals: a qualitative analysis of publications included in a scoping review. BMJ Open 2023;13(6):e071363 View
  338. Afraz A, Montazeri M, Shahrbabaki M, Ahmadian L, Jahani Y. The viewpoints of parents of children with mental disorders regarding the confidentiality and security of their children’s information in the Iranian national electronic health record system. International Journal of Medical Informatics 2024;183:105334 View
  339. Binoy S, Lithwick Algon A, Ben Adiva Y, Montaser-Kouhsari L, Saban W. Online cognitive testing in Parkinson’s disease: advantages and challenges. Frontiers in Neurology 2024;15 View
  340. Liu J, Ma Z, Zhu B. Optimal innovation incentive strategies within the health crowdsourcing platform. Managerial and Decision Economics 2024;45(6):4305 View
  341. Fracchiolla C, Lau A, Schrode N. Fostering connection: Principles and practices for well-designed public engagement in physics. Physics of Plasmas 2024;31(5) View
  342. Erbas M, Ziehfreund S, Wecker H, Biedermann T, Zink A. Digital Media Usage Behavior and Its Impact on the Physician-Patient Relationship: Cross-Sectional Study Among Individuals Affected by Psoriasis in Germany. Journal of Medical Internet Research 2024;26:e57823 View
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  344. Zanoni B, Archary M, Sibaya T, Musinguzi N, Gethers C, Goldstein M, Bergam S, Psaros C, Marconi V, Haberer J. Acceptability, feasibility and preliminary effectiveness of the mHealth intervention, InTSHA, on retention in care and viral suppression among adolescents with HIV in South Africa: a pilot randomized clinical trial. AIDS Care 2024;36(7):983 View
  345. Zhu X, Li C. Information Support or Emotional Support? Social Support in Online Health Information Seeking among Chinese Older Adults. Healthcare 2024;12(17):1790 View
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Books/Policy Documents

  1. Guy I. Social Information Access. View
  2. Varatharajan A, C. S, Varatharajan V. Big Data Analytics for Sustainable Computing. View
  3. Johnson J, Andrews J. Clinical Research Informatics. View
  4. Graham A, Cobb C, Cobb N. Handbook of Health Decision Science. View
  5. . M‐Health: Fundamentals and Applications. View
  6. Sánchez-Figueroa F, Preciado J, Conejero J, Rodríguez-Echeverría R. Cooperative Design, Visualization, and Engineering. View
  7. Adams S. Under Observation: The Interplay Between eHealth and Surveillance. View
  8. Andrews J, David Johnson J, Eldredge C. Clinical Research Informatics. View
  9. Wicks P. Blinding as a Solution to Bias. View
  10. Ivanov A, Mileva E. Cooperative Design, Visualization, and Engineering. View
  11. Chen J, Lin Y, Shen B. Translational Informatics in Smart Healthcare. View
  12. Denecke K. Social Media and Mobile Technologies for Healthcare. View
  13. Bertsima M, Varlamis I, Rizomiliotis P. Medical Data Privacy Handbook. View
  14. Bacigalupe G, Cantrell K, Chickerella R. Children and Young People Living with HIV/AIDS. View
  15. Villafranca P. Communicating Rare Diseases and Disorders in the Digital Age. View
  16. Li N, Hopfgartner F. Lifelogging. View
  17. Denecke K. Health Web Science. View
  18. Fischer S, Soyez K. Challenges and Opportunities in Health Care Management. View
  19. Kaminski J. Boundaryless Hospital. View
  20. Rodrigues C. Communicating Rare Diseases and Disorders in the Digital Age. View
  21. Pousti H, Urquhart C, Linger H. Information Systems and Global Assemblages. (Re)Configuring Actors, Artefacts, Organizations. View
  22. Stephens M, Petrie K. International Encyclopedia of the Social & Behavioral Sciences. View
  23. Laranjo L. Participatory Health Through Social Media. View
  24. Hooker D, Shen N, Ho K. Technology Enabled Knowledge Translation for eHealth. View
  25. Katsanis S, Katsanis N. Genomic and Precision Medicine. View
  26. Schapranow M, Perscheid C, Wachsmann A, Siegert M, Bock C, Horschig F, Liedke F, Brauer J, Plattner H. Real-Time Business Intelligence and Analytics. View
  27. Sokolova M, Matwin S. Challenges in Computational Statistics and Data Mining. View
  28. Angelmar R. Scientific Marketing in der Medizin. View
  29. Bai J, Shen L, Sun H, Shen B. Healthcare and Big Data Management. View
  30. Devine B. Comparative Effectiveness Research in Health Services. View
  31. Hesse B. Principles and Concepts of Behavioral Medicine. View
  32. Fatima T, Jyothi S. Emerging Research in Data Engineering Systems and Computer Communications. View
  33. Rizvi S, Wang G, Chen J. Security, Privacy, and Anonymity in Computation, Communication, and Storage. View
  34. Al-Surimi K, Khalifa M, Bahkali S, EL-Metwally A, Househ M. Emerging and Re-emerging Viral Infections. View
  35. Devine B. Comparative Effectiveness Research in Health Services. View
  36. . From Science 2.0 to Pharma 3.0. View
  37. Storni C. Empowering Users through Design. View
  38. Wicks P, Little M. Handbook of Human Computation. View
  39. Denecke K. Social Media and Networking. View
  40. Col N, Correa-de-Araujo R. Clinical Decision Support. View
  41. Bates D, Cresswell K, Wright A, Sheikh A. Key Advances in Clinical Informatics. View
  42. Nambisan P. Encyclopedia of Gerontology and Population Aging. View
  43. Aboelmaged M, Thomas S, Elsheikh S. Handbook of Research on Healthcare Administration and Management. View
  44. Zhao C, Zhao S, Zhang B, Jing S, Chen Z, Zhao M. Cyberspace Safety and Security. View
  45. Johnson L, Quintero E. Personalized Oral Health Care. View
  46. Kaufman D, Mirkovic J, Chan C. Cognitive Informatics in Health and Biomedicine. View
  47. Agarwal S, Alhuwail D, John O. Handbook of Global Health. View
  48. Attanasio B, Di Stefano A, La Corte A, Scatá M. Data Science and Internet of Things. View
  49. Ceccaroni L, Woods S, Sprinks J, Wilson S, Faustman E, Bonn A, Greshake Tzovaras B, Subirats L, Kimura A. The Science of Citizen Science. View
  50. . The Digital Pill: What Everyone Should Know about the Future of Our Healthcare System. View
  51. Agarwal S, Alhuwail D, John O. Handbook of Global Health. View
  52. Mukherjee S, Kumar J, Jha A, Pandey J. E-Collaboration Technologies and Strategies for Competitive Advantage Amid Challenging Times. View
  53. Kumar D, Mandal N, Kumar Y. Machine Learning, Big Data, and IoT for Medical Informatics. View
  54. Rodrigues C. Research Anthology on Public Health Services, Policies, and Education. View
  55. Villafranca P. Research Anthology on Improving Health Literacy Through Patient Communication and Mass Media. View
  56. Rahul N, Geethika S, Aishwarya S, Revanth V, Fathimabi S. Data Engineering and Intelligent Computing. View
  57. Kivits J. La prévention toujours en re-création. View
  58. Goz V, Brodke D, Spiker W. Benzel's Spine Surgery, 2-Volume Set. View
  59. Caridà A, Colurcio M, Melia M. Managing Consumer Services. View
  60. Seneviratne O. Women Securing the Future with TIPPSS for Connected Healthcare. View
  61. Graziani E, Petrini F. Research Anthology on Fandoms, Online Social Communities, and Pop Culture. View
  62. Lin C, Atkin D. The Emerald Handbook of Computer-Mediated Communication and Social Media. View
  63. Nambisan P. Encyclopedia of Gerontology and Population Aging. View
  64. Bathi P, Deepa G. Innovations in Computational Intelligence and Computer Vision. View
  65. Mukherjee S, Sarkar A, Mukherjee S, Kumar J, Jha A. 5G, Artificial Intelligence, and Next Generation Internet of Things. View
  66. Mukherjee S, Sarkar A, Kumar J, Singh A, Jha A. Accelerating Strategic Changes for Digital Transformation in the Healthcare Industry. View
  67. Andrews J, Eldredge C, Applequist J, Johnson J. Clinical Research Informatics. View
  68. Cuyvers J, Passanante A, Pertwee E, Paterson P, Lin L, J. Larson H. Modernizing Global Health Security to Prevent, Detect, and Respond. View
  69. Karmakar S, Mishra A, Mishra A, Srivastava J. Mechanical Engineering in Biomedical Applications. View
  70. Nyambo E. The Palgrave Handbook of Language and Crisis Communication in Sub-Saharan Africa. View
  71. Jimison H, Pavel M. Human Computer Interaction in Healthcare. View