Published on in Vol 13, No 1 (2011): Jan-Mar

Patient-reported Outcomes as a Source of Evidence in Off-Label Prescribing: Analysis of Data From PatientsLikeMe

Patient-reported Outcomes as a Source of Evidence in Off-Label Prescribing: Analysis of Data From PatientsLikeMe

Patient-reported Outcomes as a Source of Evidence in Off-Label Prescribing: Analysis of Data From PatientsLikeMe

Journals

  1. Keller B, Labrique A, Jain K, Pekosz A, Levine O. Mind the Gap: Social Media Engagement by Public Health Researchers. Journal of Medical Internet Research 2014;16(1):e8 View
  2. Wicks P, Keininger D, Massagli M, la Loge C, Brownstein C, Isojärvi J, Heywood J. Perceived benefits of sharing health data between people with epilepsy on an online platform. Epilepsy & Behavior 2012;23(1):16 View
  3. Naderi H, Kiani B, Madani S, Etminani K. Concept based auto-assignment of healthcare questions to domain experts in online Q&A communities. International Journal of Medical Informatics 2020;137:104108 View
  4. Griffith R. Meeting the special medicinal needs of patients. British Journal of Community Nursing 2016;21(9):476 View
  5. Chiauzzi E, Wicks P. Digital Trespass: Ethical and Terms-of-Use Violations by Researchers Accessing Data From an Online Patient Community. Journal of Medical Internet Research 2019;21(2):e11985 View
  6. Vayena E, Tasioulas J. Adapting Standards: Ethical Oversight of Participant-Led Health Research. PLoS Medicine 2013;10(3):e1001402 View
  7. Ma X, Sayama H. Mental disorder recovery correlated with centralities and interactions on an online social network. PeerJ 2015;3:e1163 View
  8. Schroeder E, Desai J, Schmittdiel J, Paolino A, Schneider J, Goodrich G, Lawrence J, Newton K, Nichols G, O'Connor P, Fitz-Randolph M, Steiner J. An Innovative Approach to Informing Research: Gathering Perspectives on Diabetes Care Challenges From an Online Patient Community. interactive Journal of Medical Research 2015;4(2):e13 View
  9. Vayena E, Mastroianni A, Kahn J. Ethical Issues in Health Research With Novel Online Sources. American Journal of Public Health 2012;102(12):2225 View
  10. Bi Q, Shen L, Evans R, Zhang Z, Wang S, Dai W, Liu C. Determining the Topic Evolution and Sentiment Polarity for Albinism in a Chinese Online Health Community: Machine Learning and Social Network Analysis. JMIR Medical Informatics 2020;8(5):e17813 View
  11. Matthews P, Block V, Leocani L. E-health and multiple sclerosis. Current Opinion in Neurology 2020;33(3):271 View
  12. Fadda M, Jobin A, Blasimme A, Greshake Tzovaras B, Price Ball M, Vayena E. User Perspectives of a Web-Based Data-Sharing Platform (Open Humans) on Ethical Oversight in Participant-Led Research: Protocol for a Quantitative Study. JMIR Research Protocols 2018;7(11):e10939 View
  13. Li S, Yu C, Wang Y, Babu Y. Exploring adverse drug reactions of diabetes medicine using social media analytics and interactive visualizations. International Journal of Information Management 2019;48:228 View
  14. Ospina-Pinillos L, Davenport T, Ricci C, Milton A, Scott E, Hickie I. Developing a Mental Health eClinic to Improve Access to and Quality of Mental Health Care for Young People: Using Participatory Design as Research Methodologies. Journal of Medical Internet Research 2018;20(5):e188 View
  15. Tourassi G, Yoon H, Xu S. A novel web informatics approach for automated surveillance of cancer mortality trends. Journal of Biomedical Informatics 2016;61:110 View
  16. Häuser W, Jung E, Erbslöh-Möller B, Gesmann M, Kühn-Becker H, Petermann F, Langhorst J, Weiss T, Thoma R, Winkelmann A. Der deutsche Fibromyalgieverbraucherbericht. Der Schmerz 2012;26(2):150 View
  17. Vincent A, Benzo R, Whipple M, McAllister S, Erwin P, Saligan L. Beyond pain in fibromyalgia: insights into the symptom of fatigue. Arthritis Research & Therapy 2013;15(6):221 View
  18. Tozzi A, Mingarelli R, Agricola E, Gonfiantini M, Pandolfi E, Carloni E, Gesualdo F, Dallapiccola B. The internet user profile of Italian families of patients with rare diseases: a web survey. Orphanet Journal of Rare Diseases 2013;8(1):76 View
  19. Bruner D, Movsas B, Basch E. Capturing the Patient Perspective: Patient-Reported Outcomes as Clinical Trial Endpoints. American Society of Clinical Oncology Educational Book 2012;(32):139 View
  20. Eysenbach G. Infodemiology and Infoveillance. American Journal of Preventive Medicine 2011;40(5):S154 View
  21. Subirats L, Ceccaroni L, Lopez-Blazquez R, Miralles F, García-Rudolph A, Tormos J. Circles of Health: Towards an advanced social network about disabilities of neurological origin. Journal of Biomedical Informatics 2013;46(6):1006 View
  22. Swan M. Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem. Journal of Medical Internet Research 2012;14(2):e46 View
  23. O'Neill B, Ziebland S, Valderas J, Lupiáñez-Villanueva F. User-Generated Online Health Content: A Survey of Internet Users in the United Kingdom. Journal of Medical Internet Research 2014;16(4):e118 View
  24. Winickoff D, Jamal L, Anderson N. New modes of engagement for big data research. Journal of Responsible Innovation 2016;3(2):169 View
  25. Arigo D, Jake-Schoffman D, Wolin K, Beckjord E, Hekler E, Pagoto S. The history and future of digital health in the field of behavioral medicine. Journal of Behavioral Medicine 2019;42(1):67 View
  26. Zaidan A, Zaidan B, Kadhem Z, Larbani M, Lakulu M, Hashim M. Challenges, Alternatives, and Paths to Sustainability: Better Public Health Promotion Using Social Networking Pages as Key Tools. Journal of Medical Systems 2015;39(2) View
  27. Dal Pan G. Monitoring the Safety of Medicines Used Off-Label. Clinical Pharmacology & Therapeutics 2012;91(5):787 View
  28. Hesse B, Cole G, Powe B. Partnering Against Cancer Today: A Blueprint for Coordinating Efforts Through Communication Science. JNCI Monographs 2013;2013(47):233 View
  29. Alvaro N, Miyao Y, Collier N. TwiMed: Twitter and PubMed Comparable Corpus of Drugs, Diseases, Symptoms, and Their Relations. JMIR Public Health and Surveillance 2017;3(2):e24 View
  30. Abbe A, Falissard B. Stopping Antidepressants and Anxiolytics as Major Concerns Reported in Online Health Communities: A Text Mining Approach. JMIR Mental Health 2017;4(4):e48 View
  31. Bauer D, Gaff C, Dinger M, Caramins M, Buske F, Fenech M, Hansen D, Cobiac L. Genomics and personalised whole-of-life healthcare. Trends in Molecular Medicine 2014;20(9):479 View
  32. Nishimoto N, Ota M, Yagahara A, Ogasawara K. Estimating the Duration of Public Concern After the Fukushima Dai-ichi Nuclear Power Station Accident from the Occurrence of Radiation Exposure-Related Terms on Twitter: A Retrospective Data Analysis. JMIR Public Health and Surveillance 2016;2(2):e168 View
  33. Samal L, Saha S, Chander G, Korthuis P, Sharma R, Sharp V, Cohn J, Moore R, Beach M. Internet Health Information Seeking Behavior and Antiretroviral Adherence in Persons Living with HIV/AIDS. AIDS Patient Care and STDs 2011;25(7):445 View
  34. Lefebvre R, Bornkessel A. Digital Social Networks and Health. Circulation 2013;127(17):1829 View
  35. Vayena E, Mastroianni A, Kahn J. Caught in the Web: Informed Consent for Online Health Research. Science Translational Medicine 2013;5(173):173fs6 View
  36. Marrie R, Salter A, Tyry T, Fox R, Cutter G. Preferred Sources of Health Information in Persons With Multiple Sclerosis: Degree of Trust and Information Sought. Journal of Medical Internet Research 2013;15(4):e67 View
  37. Balch G, Bartlett D. Cytoreductive Surgery and Hyperthermic Intraperitoneal Chemotherapy (HIPEC): The Need for Accessible Data in Real Time. Annals of Surgical Oncology 2016;23(1):9 View
  38. Hjollund N. Individual Prognosis of Symptom Burden and Functioning in Chronic Diseases: A Generic Method Based on Patient-Reported Outcome (PRO) Measures. Journal of Medical Internet Research 2017;19(8):e278 View
  39. Wicks P, Stamford J, Grootenhuis M, Haverman L, Ahmed S. Innovations in e-health. Quality of Life Research 2014;23(1):195 View
  40. Lowenthal J, Hull S, Pearson S. The Ethics of Early Evidence — Preparing for a Possible Breakthrough in Alzheimer's Disease. New England Journal of Medicine 2012;367(6):488 View
  41. Tourassi G, Yoon H, Xu S, Han X. The utility of web mining for epidemiological research: studying the association between parity and cancer risk. Journal of the American Medical Informatics Association 2016;23(3):588 View
  42. Saunders D, Bex P, Woods R. Crowdsourcing a Normative Natural Language Dataset: A Comparison of Amazon Mechanical Turk and In-Lab Data Collection. Journal of Medical Internet Research 2013;15(5):e100 View
  43. Griffiths F, Dobermann T, Cave J, Thorogood M, Johnson S, Salamatian K, Gomez Olive F, Goudge J. The Impact of Online Social Networks on Health and Health Systems: A Scoping Review and Case Studies. Policy & Internet 2015;7(4):473 View
  44. Coleman J, McDowell S. An agenda for UK clinical pharmacology: The potential of the internet. British Journal of Clinical Pharmacology 2012;73(6):953 View
  45. Griffith R. Unlicensed medicines. British Journal of Nursing 2019;28(17):1154 View
  46. Gilvary C, Elkhader J, Madhukar N, Henchcliffe C, Goncalves M, Elemento O, Schlessinger A. A machine learning and network framework to discover new indications for small molecules. PLOS Computational Biology 2020;16(8):e1008098 View
  47. 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). Journal of Medical Internet Research 2011;13(1):e12 View
  48. Dal Pan G. Ongoing Challenges in Pharmacovigilance. Drug Safety 2014;37(1):1 View
  49. Eggleston E, Weitzman E. Innovative Uses of Electronic Health Records and Social Media for Public Health Surveillance. Current Diabetes Reports 2014;14(3) View
  50. Convertino I, Ferraro S, Blandizzi C, Tuccori M. The usefulness of listening social media for pharmacovigilance purposes: a systematic review. Expert Opinion on Drug Safety 2018;17(11):1081 View
  51. Frost J. The case for using social media to aggregate patient experiences with off-label prescriptions. Expert Review of Pharmacoeconomics & Outcomes Research 2011;11(4):371 View
  52. Sinapuelas I, Ho F. Information exchange in social networks for health care. Journal of Consumer Marketing 2019;36(5):692 View
  53. Angelmar R. Marketing Im Gesundheitssektor. SSRN Electronic Journal 2012 View
  54. Nakamura C, Bromberg M, Bhargava S, Wicks P, Zeng-Treitler Q. Mining Online Social Network Data for Biomedical Research: A Comparison of Clinicians’ and Patients’ Perceptions About Amyotrophic Lateral Sclerosis Treatments. Journal of Medical Internet Research 2012;14(3):e90 View
  55. Cascade E, Marr P, Winslow M, Burgess A, Nixon M. Conducting Research on the Internet: Medical Record Data Integration with Patient-Reported Outcomes. Journal of Medical Internet Research 2012;14(5):e137 View
  56. Salek S, Kamudoni P. Streamlining the Validation of Patient Reported Outcome (PRO) Measures in Drug Regulatory Processes. Pharmaceutical Medicine 2015;29(5):255 View
  57. Lange L, Schulz H, Bleich C. E-Health-Angebote in der Onkologie. Der Onkologe 2018;24(5):406 View
  58. Grabb M, Gobburu J. Challenges in developing drugs for pediatric CNS disorders: A focus on psychopharmacology. Progress in Neurobiology 2017;152:38 View
  59. Capurro D, Cole K, Echavarría M, Joe J, Neogi T, Turner A. The Use of Social Networking Sites for Public Health Practice and Research: A Systematic Review. Journal of Medical Internet Research 2014;16(3):e79 View
  60. Charles-Smith L, Reynolds T, Cameron M, Conway M, Lau E, Olsen J, Pavlin J, Shigematsu M, Streichert L, Suda K, Corley C, Braunstein L. Using Social Media for Actionable Disease Surveillance and Outbreak Management: A Systematic Literature Review. PLOS ONE 2015;10(10):e0139701 View
  61. Kazmer M, Lustria M, Cortese J, Burnett G, Kim J, Ma J, Frost J. Distributed knowledge in an online patient support community: Authority and discovery. Journal of the Association for Information Science and Technology 2014;65(7):1319 View
  62. Paul M, Dredze M. Social Monitoring for Public Health. Synthesis Lectures on Information Concepts, Retrieval, and Services 2017;9(5):1 View
  63. Wexler A, Hamilton R. Crowdsourced tDCS Research: Feasible or Fanciful?. AJOB Neuroscience 2017;8(1):50 View
  64. Okun S. The Missing Reality of Real Life in Real‐World Evidence. Clinical Pharmacology & Therapeutics 2019;106(1):136 View
  65. Li Y, Jimeno Yepes A, Xiao C. Combining Social Media and FDA Adverse Event Reporting System to Detect Adverse Drug Reactions. Drug Safety 2020;43(9):893 View
  66. Southall N, Natarajan M, Lau L, Jonker A, Deprez B, Guilliams T, Hunter L, Rademaker C, Hivert V, Ardigò D. The use or generation of biomedical data and existing medicines to discover and establish new treatments for patients with rare diseases – recommendations of the IRDiRC Data Mining and Repurposing Task Force. Orphanet Journal of Rare Diseases 2019;14(1) View
  67. Thoër C. Internet : un facteur de transformation de la relation médecin-patient ?. Communiquer. Revue de communication sociale et publique 2013;(10):1 View
  68. Kalf R, Makady A, ten Ham R, Meijboom K, Goettsch W. Use of Social Media in the Assessment of Relative Effectiveness: Explorative Review With Examples From Oncology. JMIR Cancer 2018;4(1):e11 View
  69. Moorhead S, Hazlett D, Harrison L, Carroll J, Irwin A, Hoving C. A New Dimension of Health Care: Systematic Review of the Uses, Benefits, and Limitations of Social Media for Health Communication. Journal of Medical Internet Research 2013;15(4):e85 View
  70. Pappa D, Stergioulas L. Harnessing social media data for pharmacovigilance: a review of current state of the art, challenges and future directions. International Journal of Data Science and Analytics 2019;8(2):113 View
  71. Karamanlis D, Tzitzis P, Bratsas C, Bamidis P. Personal health records in the preclinical medical curriculum: modeling student responses in a simple educational environment utilizing Google Health. BMC Medical Education 2012;12(1) View
  72. Betsch C, Renkewitz F, Haase N. Effect of Narrative Reports about Vaccine Adverse Events and Bias-Awareness Disclaimers on Vaccine Decisions. Medical Decision Making 2013;33(1):14 View
  73. Nikfarjam A, Ransohoff J, Callahan A, Polony V, Shah N. Profiling off-label prescriptions in cancer treatment using social health networks. JAMIA Open 2019;2(3):301 View
  74. Servy H, Gossec L. La place de la e-santé et les objets connectés dans le traitement de patients atteints de polyarthrite rhumatoïde. Revue du Rhumatisme Monographies 2018;85(1):66 View
  75. Ford E, Boyd A, Bowles J, Havard A, Aldridge R, Curcin V, Greiver M, Harron K, Katikireddi V, Rodgers S, Sperrin M. Our data, our society, our health: A vision for inclusive and transparent health data science in the United Kingdom and beyond. Learning Health Systems 2019;3(3) View
  76. Coe S, Axelsson E, Murphy V, Santos M, Collett J, Clegg M, Izadi H, Harrison J, Buckingham E, Dawes H. Flavonoid rich dark cocoa may improve fatigue in people with multiple sclerosis, yet has no effect on glycaemic response: An exploratory trial. Clinical Nutrition ESPEN 2017;21:20 View
  77. Radu R, Hernández-Ortega S, Borrega O, Palmeri A, Athanasiou D, Brooke N, Chapí I, Le Corvec A, Guglieri M, Perera-Lluna A, Garrido-Aguirre J, Ryll B, Nafria Escalera B. Global Collaborative Social Network (Share4Rare) to Promote Citizen Science in Rare Disease Research: Platform Development Study. JMIR Formative Research 2021;5(3):e22695 View
  78. Walsh J, Cave J, Griffiths F. Spontaneously Generated Online Patient Experience of Modafinil: A Qualitative and NLP Analysis. Frontiers in Digital Health 2021;3 View
  79. 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 2021 View

Books/Policy Documents

  1. Ru B, Yao L. Social Web and Health Research. View
  2. Angelmar R. Scientific Marketing in der Medizin. View
  3. . Off-label prescribing - Justifying unapproved medicine. View
  4. Palazzani L. Innovation in Scientific Research and Emerging Technologies. View
  5. Fuller H, Arnold T. Advances in Human Factors and Ergonomics in Healthcare and Medical Devices. View
  6. Heyen N, Dickel S. Personal Health Science. View
  7. Kamudoni P, Johns N, Salek S. Living with Chronic Disease: Measuring Important Patient-Reported Outcomes. View
  8. Chen Y, Yang L, Hu H, Chen J, Shen B. Healthcare and Big Data Management. View
  9. Kolominsky-Rabas P. Innovation in Clinical Trial Methodologies. View
  10. Agarwal S, Alhuwail D, John O. Handbook of Global Health. View
  11. Nayal P, Pandey N. New Techniques for Brand Management in the Healthcare Sector. View
  12. Agarwal S, Alhuwail D, John O. Handbook of Global Health. View