Published on 14.06.10 in Vol 12, No 2 (2010): Apr-Jun
Works citing "Sharing Health Data for Better Outcomes on PatientsLikeMe"
According to Crossref, the following articles are citing this article (DOI 10.2196/jmir.1549):
(note that this is only a small subset of citations)
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Eaneff S, Wang V, Hanger M, Levy M, Mealy MA, Brandt AU, Eek D, Ratchford JN, Nyberg F, Goodall J, Wicks P. Patient perspectives on neuromyelitis optica spectrum disorders: Data from the PatientsLikeMe online community. Multiple Sclerosis and Related Disorders 2017;17:116
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Grando A, Ivanova J, Hiestand M, Soni H, Murcko A, Saks M, Kaufman D, Whitfield MJ, Dye C, Chern D, Maupin J. Mental health professional perspectives on health data sharing: Mixed methods study. Health Informatics Journal 2020;26(3):2067
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Southall NT, Natarajan M, Lau LPL, Jonker AH, Deprez B, Guilliams T, Hunter L, Rademaker CM, 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)
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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. Journal of Medical Internet Research 2011;13(1):e6
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. Electronic Medical Records: Confidentiality, Care, and Epidemiology. IEEE Security & Privacy 2013;11(6):19
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Griffiths F, Cave J, Boardman F, Ren J, Pawlikowska T, Ball R, Clarke A, Cohen A. Social networks – The future for health care delivery. Social Science & Medicine 2012;75(12):2233
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Pearson JF, Brownstein CA, Brownstein JS. Potential for Electronic Health Records and Online Social Networking to Redefine Medical Research. Clinical Chemistry 2011;57(2):196
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. Rituals of introduction and revolving roles: Socialization in an online breast cancer community. Library & Information Science Research 2015;37(4):353
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Gómez-Zúñiga B, Fernandez-Luque L, Pousada M, Hernández-Encuentra E, Armayones M. ePatients on YouTube: Analysis of Four Experiences From the Patients' Perspective. Medicine 2.0 2012;1(1):e1
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Lau AYS, Sintchenko V, Crimmins J, Magrabi F, Gallego B, Coiera E. Impact of a web-based personally controlled health management system on influenza vaccination and health services utilization rates: a randomized controlled trial. Journal of the American Medical Informatics Association 2012;19(5):719
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Budhiraja R, Thomas R, Kim M, Redline S. The Role of Big Data in the Management of Sleep-Disordered Breathing. Sleep Medicine Clinics 2016;11(2):241
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Du F, Plaisant C, Spring N, Crowley K, Shneiderman B. EventAction. ACM Transactions on Interactive Intelligent Systems 2019;9(4):1
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McQueen A, Arnold LD, Baltes M. Characterizing Online Narratives About Colonoscopy Experiences: Comparing Colon Cancer “Screeners” Versus “Survivors”. Journal of Health Communication 2015;20(8):958
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Gage-Bouchard EA, LaValley S, Mollica M, Beaupin LK. Communication and Exchange of Specialized Health-Related Support Among People With Experiential Similarity on Facebook. Health Communication 2017;32(10):1233
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Pushparajah DS, Manning E, Michels E, Arnaudeau-Bégard C. Value of Developing Plain Language Summaries of Scientific and Clinical Articles: A Survey of Patients and Physicians. Therapeutic Innovation & Regulatory Science 2018;52(4):474
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. Consumer Health Informatics. The Health Care Manager 2016;35(4):312
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Wong CA, Merchant RM, Moreno MA. Using social media to engage adolescents and young adults with their health. Healthcare 2014;2(4):220
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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
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. E-santé, réseaux sociaux et rhumatologie : compatibles ou pas ?. Revue du Rhumatisme 2018;85(2):109
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Kalf RR, Makady A, ten Ham RM, Meijboom K, Goettsch WG. Use of Social Media in the Assessment of Relative Effectiveness: Explorative Review With Examples From Oncology. JMIR Cancer 2018;4(1):e11
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Meisel ZF, VonHoltz LAH, Merchant RM. Crowdsourcing healthcare costs: Opportunities and challenges for patient centered price transparency. Healthcare 2016;4(1):3
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. Patients’ self-efficacy within online health communities: facilitating chronic disease self-management behaviors through peer education. Health Communication 2016;31(3):299
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Salsbury SA, Goertz CM, Vining RD, Hondras MA, Andresen AA, Long CR, Lyons KJ, Killinger LZ, Wallace RB. Interdisciplinary Practice Models for Older Adults With Back Pain: A Qualitative Evaluation. The Gerontologist 2017;:gnw188
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Tresp V, Marc Overhage J, Bundschus M, Rabizadeh S, Fasching PA, Yu S. Going Digital: A Survey on Digitalization and Large-Scale Data Analytics in Healthcare. Proceedings of the IEEE 2016;104(11):2180
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Benedict C, Hahn AL, Diefenbach MA, Ford JS. Recruitment via social media: advantages and potential biases. DIGITAL HEALTH 2019;5:205520761986722
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Myneni S, Lewis B, Singh T, Paiva K, Kim SM, Cebula AV, Villanueva G, Wang J. Diabetes Self-Management in the Age of Social Media: Large-Scale Analysis of Peer Interactions Using Semiautomated Methods. JMIR Medical Informatics 2020;8(6):e18441
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Schulz PJ, Fitzpatrick MA, Hess A, Sudbury-Riley L, Hartung U. Effects of eHealth Literacy on General Practitioner Consultations: A Mediation Analysis. Journal of Medical Internet Research 2017;19(5):e166
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Chen D, Zhang R, Liu K, Hou L. Enhancing Online Patient Support through Health-Care Knowledge in Online Health Communities: A Descriptive Study. Information 2018;9(8):199
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Swift B, Jain L, White C, Chandrasekaran V, Bhandari A, Hughes DA, Jadhav PR. Innovation at the Intersection of Clinical Trials and Real‐World Data Science to Advance Patient Care. Clinical and Translational Science 2018;11(5):450
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Westendorf L, Shaer O, Pollalis C, Verish C, Nov O, Ball MP. Exploring Genetic Data Across Individuals: Design and Evaluation of a Novel Comparative Report Tool. Journal of Medical Internet Research 2018;20(9):e10297
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Flickinger TE, DeBolt C, Wispelwey E, Laurence C, Plews-Ogan E, Waldman AL, Reynolds G, Cohn WF, Beach MC, Ingersoll K, Dillingham R. Content Analysis and User Characteristics of a Smartphone-Based Online Support Group for People Living with HIV. Telemedicine and e-Health 2016;22(9):746
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Heatherly R, Denny JC, Haines JL, Roden DM, Malin BA. Size matters: How population size influences genotype–phenotype association studies in anonymized data. Journal of Biomedical Informatics 2014;52:243
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Kim S, Abner E. Predictors affecting personal health information management skills. Informatics for Health and Social Care 2016;41(3):211
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Disler RT, Inglis SC, Newton PJ, Currow DC, Macdonald PS, Glanville AR, Donesky D, Carrieri-Kohlman V, Davidson PM. Patterns of Technology Use in Patients Attending a Cardiopulmonary Outpatient Clinic: A Self-Report Survey. interactive Journal of Medical Research 2015;4(1):e5
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Rodgers MM, Alon G, Pai VM, Conroy RS. Wearable technologies for active living and rehabilitation: Current research challenges and future opportunities. Journal of Rehabilitation and Assistive Technologies Engineering 2019;6:205566831983960
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Ghio D, Greenwell K, Muller I, Roberts A, McNiven A, Santer M. Psychosocial needs of adolescents and young adults with eczema: A secondary analysis of qualitative data to inform a behaviour change intervention. British Journal of Health Psychology 2021;26(1):214
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Thorley EM, Iyer RG, Wicks P, Curran C, Gandhi SK, Abler V, Anderson KE, Carlozzi NE. Understanding How Chorea Affects Health-Related Quality of Life in Huntington Disease: An Online Survey of Patients and Caregivers in the United States. The Patient - Patient-Centered Outcomes Research 2018;11(5):547
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Kim HH, Lee SY, Baik SY, Kim JH. MELLO: Medical lifelog ontology for data terms from self-tracking and lifelog devices. International Journal of Medical Informatics 2015;84(12):1099
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Shcherbakova N, Shepherd M. Community pharmacists, Internet and social media: An empirical investigation. Research in Social and Administrative Pharmacy 2014;10(6):e75
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Borentain S, Nash AI, Dayal R, DiBernardo A. Patient-reported outcomes in major depressive disorder with suicidal ideation: a real-world data analysis using PatientsLikeMe platform. BMC Psychiatry 2020;20(1)
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. PatientsLikeMe and the tale of three brothers. Medical Journal of Australia 2011;195(5):258
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Johnson CM, McIlwain S, Gray O, Willson B, Vorderstrasse A. Creating a sustainable collaborative consumer health application for chronic disease self-management. Journal of Biomedical Informatics 2017;71:198
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Benetoli A, Chen T, Aslani P. How patients’ use of social media impacts their interactions with healthcare professionals. Patient Education and Counseling 2018;101(3):439
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Comfort S, Perera S, Hudson Z, Dorrell D, Meireis S, Nagarajan M, Ramakrishnan C, Fine J. Sorting Through the Safety Data Haystack: Using Machine Learning to Identify Individual Case Safety Reports in Social-Digital Media. Drug Safety 2018;41(6):579
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Chen L, Baird A, Straub D. Fostering Participant Health Knowledge and Attitudes: An Econometric Study of a Chronic Disease-Focused Online Health Community. Journal of Management Information Systems 2019;36(1):194
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Marsh KK, Bush RA, Connelly CD. Exploring perceptions and use of the patient portal by young adults with type 1 diabetes: A qualitative study. Health Informatics Journal 2020;26(4):2586
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Rosenkranz N, Eckhardt A, Kühne M, Rosenkranz C. Gesundheitsinformationen im Internet. WIRTSCHAFTSINFORMATIK 2013;55(4):257
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Wöhlke S, Schaper M, Oliveri S, Cutica I, Spinella F, Pravettoni G, Steinberger D, Schicktanz S. German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192). Frontiers in Genetics 2020;11
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Hall JA, Brown R. Developing translational research infrastructure and capabilities associated with cancer clinical trials. Expert Reviews in Molecular Medicine 2013;15
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. Preparing medical students for the e-patient. Medical Teacher 2017;39(7):681
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Überall M, Werner-Felmayer G. Integrative Biology and Big-Data-Centrism: Mapping out a Bioscience Ethics Perspective with a S.W.O.T. Matrix. OMICS: A Journal of Integrative Biology 2019;23(8):371
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. Co-care: Producing better health outcome through interactions between patients, care providers and information and communication technology. Health Services Management Research 2016;29(1-2):10
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Balatsoukas P, Kennedy CM, Buchan I, Powell J, Ainsworth J. The Role of Social Network Technologies in Online Health Promotion: A Narrative Review of Theoretical and Empirical Factors Influencing Intervention Effectiveness. Journal of Medical Internet Research 2015;17(6):e141
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Nambisan P, Gustafson DH, Hawkins R, Pingree S. Social support and responsiveness in online patient communities: impact on service quality perceptions. Health Expectations 2016;19(1):87
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. You never call, you never write: why return of ‘omic’ results to research participants is both a good idea and a moral imperative. Personalized Medicine 2011;8(6):651
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Simacek K, Raja P, Chiauzzi E, Eek D, Halling K. What Do Ovarian Cancer Patients Expect From Treatment?. Cancer Nursing 2017;40(5):E17
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Chretien KC, Kind T. Social Media and Clinical Care. Circulation 2013;127(13):1413
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Bagheri H, Lacroix I, Guitton E, Damase-Michel C, Montastruc J. Cyberpharmacovigilance: What is the usefulness of the social networks in pharmacovigilance?. Therapies 2016;71(2):235
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Masters K, Loda T, Johannink J, Al-Abri R, Herrmann-Werner A. Surgeons’ Interactions With and Attitudes Toward E-Patients: Questionnaire Study in Germany and Oman. Journal of Medical Internet Research 2020;22(3):e14646
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Turner K, Klaman SL, Shea CM. Personal health records for people living with HIV: a review. AIDS Care 2016;28(9):1181
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Gage-Bouchard EA, LaValley S, Mollica M, Beaupin LK. Cancer Communication on Social Media. Cancer Nursing 2017;40(4):332
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Fuoco M, Leveridge MJ. Early adopters or laggards? Attitudes toward and use of social media among urologists. BJU International 2015;115(3):491
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Wicks P, Sulham KA, Gnanasakthy A. Quality of Life in Organ Transplant Recipients Participating in an Online Transplant Community. The Patient - Patient-Centered Outcomes Research 2014;7(1):73
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Auffenberg GB, Ghani KR, Ramani S, Usoro E, Denton B, Rogers C, Stockton B, Miller DC, Singh K. askMUSIC: Leveraging a Clinical Registry to Develop a New Machine Learning Model to Inform Patients of Prostate Cancer Treatments Chosen by Similar Men. European Urology 2019;75(6):901
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Wiggins A, Wilbanks J. The Rise of Citizen Science in Health and Biomedical Research. The American Journal of Bioethics 2019;19(8):3
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Jaser SS, Hamburger ER, Pagoto S, Williams R, Meyn A, Jones AC, Simmons JH. Communication and coping intervention for mothers of adolescents with type 1 diabetes: Rationale and trial design. Contemporary Clinical Trials 2019;85:105844
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. Cancer Control and the Communication Innovation in South Korea: Implications for Cancer Disparities. Asian Pacific Journal of Cancer Prevention 2013;14(6):3411
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Lau AY, Proudfoot J, Andrews A, Liaw S, Crimmins J, Arguel A, Coiera E. Which Bundles of Features in a Web-Based Personally Controlled Health Management System Are Associated With Consumer Help-Seeking Behaviors for Physical and Emotional Well-Being?. Journal of Medical Internet Research 2013;15(5):e79
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Jacobsen PL, Thorley EM, Curran C. Real-world patient experience with sexual dysfunction and antidepressant use in patients with self-reported depression: A cross-sectional survey study. Neurology, Psychiatry and Brain Research 2020;36:57
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. Infodemiology and Infoveillance of Multiple Sclerosis in Italy. Multiple Sclerosis International 2013;2013:1
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James G, Nyman E, Fitz-Randolph M, Niklasson A, Hedman K, Hedberg J, Wittbrodt ET, Medin J, Moreno Quinn C, Allum AM, Emmas C. Characteristics, Symptom Severity, and Experiences of Patients Reporting Chronic Kidney Disease in the PatientsLikeMe Online Health Community: Retrospective and Qualitative Study. Journal of Medical Internet Research 2020;22(7):e18548
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Bert F, Gualano MR, Brusaferro S, De Vito E, de Waure C, Torre GL, Manzoli L, Messina G, Todros T, Torregrossa MV, Siliquini R. Pregnancy e-health: a multicenter Italian cross-sectional study on internet use and decision-making among pregnant women. Journal of Epidemiology and Community Health 2013;67(12):1013
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Greenhalgh T, Snow R, Ryan S, Rees S, Salisbury H. Six ‘biases’ against patients and carers in evidence-based medicine. BMC Medicine 2015;13(1)
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SEEMAN MV, SEEMAN N. The Meaning of Antipsychotic Medication to Patients With Schizophrenia. Journal of Psychiatric Practice 2012;18(5):338
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Johnson C, Feinglos M, Pereira K, Hassell N, Blascovich J, Nicollerat J, Beresford HF, Levy J, Vorderstrasse A. Feasibility and Preliminary Effects of a Virtual Environment for Adults With Type 2 Diabetes: Pilot Study. JMIR Research Protocols 2014;3(2):e23
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Gavrila V, Garrity A, Hirschfeld E, Edwards B, Lee JM. Peer Support Through a Diabetes Social Media Community. Journal of Diabetes Science and Technology 2019;13(3):493
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McCaffrey SA, Chiauzzi E, Chan C, Hoole M. Understanding ‘Good Health care’ from the Patient’s Perspective: Development of a Conceptual Model Using Group Concept Mapping. The Patient - Patient-Centered Outcomes Research 2019;12(1):83
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. The Digital Commons: Tragedy or Opportunity? A Reflection on the 50th Anniversary of Hardin’s Tragedy of the Commons. SSRN Electronic Journal 2018;
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Nikfarjam A, Ransohoff JD, Callahan A, Polony V, Shah NH. Profiling off-label prescriptions in cancer treatment using social health networks. JAMIA Open 2019;2(3):301
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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. Journal of Medical Internet Research 2013;15(4):e67
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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
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Wicks P, Keininger DL, Massagli MP, la Loge CD, 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
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Moorhead SA, Hazlett DE, Harrison L, Carroll JK, 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
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Antheunis ML, Tates K, Nieboer TE. Patients’ and health professionals’ use of social media in health care: Motives, barriers and expectations. Patient Education and Counseling 2013;92(3):426
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Jackson ML, Bex PJ, Ellison JM, Wicks P, Wallis J. Feasibility of a Web-Based Survey of Hallucinations and Assessment of Visual Function in Patients With Parkinson’s Disease. interactive Journal of Medical Research 2014;3(1):e1
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. Training and learning for the future: making change happen. Postgraduate Medical Journal 2014;90(1062):183
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. Traits and types of health data repositories. Health Information Science and Systems 2014;2(1)
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Doing-Harris KM, Zeng-Treitler Q. Computer-Assisted Update of a Consumer Health Vocabulary Through Mining of Social Network Data. Journal of Medical Internet Research 2011;13(2):e37
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Gómez-Zúñiga B, Fernandez-Luque L, Pousada M, Hernández-Encuentra E, Armayones M. ePatients on YouTube: Analysis of Four Experiences From the Patients' Perspective. Medicine 2.0 2012;1(1):e1
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Tillmann T, Gibson AR, Scott G, Harrison O, Dominiczak A, Hanlon P. Systems Medicine 2.0: Potential Benefits of Combining Electronic Health Care Records With Systems Science Models. Journal of Medical Internet Research 2015;17(3):e64
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Strekalova YA, Hawkins KE, Drusbosky LM, Cogle CR. Using social media to assess care coordination goals and plans for leukemia patients and survivors. Translational Behavioral Medicine 2018;8(3):481
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Chung C, Cook J, Bales E, Zia J, Munson SA. More Than Telemonitoring: Health Provider Use and Nonuse of Life-Log Data in Irritable Bowel Syndrome and Weight Management. Journal of Medical Internet Research 2015;17(8):e203
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Nisar S, Shafiq M. Framework for efficient utilisation of social media in Pakistan's healthcare sector. Technology in Society 2019;56:31
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Meenakshi SP, Sivakumar P, Ilango P. Effective Health Promotion Interventions for Targeted Audience using Social Networking Sites: A Systematic Review. Indian Journal of Science and Technology 2017;10(36):1
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Chung AE, Vu MB, Myers K, Burris J, Kappelman MD. Crohn’s and Colitis Foundation of America Partners Patient-Powered Research Network. Medical Care 2018;56(Suppl 1):S33
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Weitzman ER, Adida B, Kelemen S, Mandl KD, Shea BJ. Sharing Data for Public Health Research by Members of an International Online Diabetes Social Network. PLoS ONE 2011;6(4):e19256
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Pages A, Bondon-Guitton E, Montastruc JL, Bagheri H. Undesirable Effects Related to Oral Antineoplastic Drugs: Comparison Between Patients’ Internet Narratives and a National Pharmacovigilance Database. Drug Safety 2014;37(8):629
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Triantafyllidis AK, Velardo C, Salvi D, Shah SA, Koutkias VG, Tarassenko L. A Survey of Mobile Phone Sensing, Self-Reporting, and Social Sharing for Pervasive Healthcare. IEEE Journal of Biomedical and Health Informatics 2017;21(1):218
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. Can data repositories help find effective treatments for complex diseases?. Progress in Neurobiology 2017;152:200
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Rupert DJ, Gard Read J, Amoozegar JB, Moultrie RR, Taylor OM, O’Donoghue AC, Sullivan HW. Peer-Generated Health Information: The Role of Online Communities in Patient and Caregiver Health Decisions. Journal of Health Communication 2016;21(11):1187
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. Hitting a moving target: digital transformation and welfare technology in Swedish municipal eldercare. Disability and Rehabilitation: Assistive Technology 2021;16(1):103
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Gergle D, Hargittai E. A methodological pilot for gathering data through text-messaging to study question-asking in everyday life. Mobile Media & Communication 2018;6(2):197
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Workman T, Maurer M, Carman K. Unresolved tensions in consumer engagement in CER: a US research perspective. Journal of Comparative Effectiveness Research 2013;2(2):127
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Deeny SR, Steventon A. Making sense of the shadows: priorities for creating a learning healthcare system based on routinely collected data. BMJ Quality & Safety 2015;24(8):505
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Lee HY, Kim J, Sharratt M. Technology use and its association with health and depressive symptoms in older cancer survivors. Quality of Life Research 2018;27(2):467
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Okun S, Wicks P. DigitalMe: a journey towards personalized health and thriving. BioMedical Engineering OnLine 2018;17(1)
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Chuang KY, Yang CC. Interaction Patterns of Nurturant Support Exchanged in Online Health Social Networking. Journal of Medical Internet Research 2012;14(3):e54
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Foley G, Timonen V, Hardiman O. Experience of Services as a Key Outcome in Amyotrophic Lateral Sclerosis (ALS) Care. American Journal of Hospice and Palliative Medicine® 2012;29(5):362
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Kim J, Lee J. Health Information Sharing on the Web: The Influences of Age and Gender. Journal of the Korean Society for information Management 2012;29(3):61
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Vaala SE, Lee JM, Hood KK, Mulvaney SA. Sharing and helping: predictors of adolescents’ willingness to share diabetes personal health information with peers. Journal of the American Medical Informatics Association 2018;25(2):135
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Wicks P, McCaffrey S, Goodwin K, Black R, Hoole M, Heywood J. A Modular Health-Related Quality of Life Instrument for Electronic Assessment and Treatment Monitoring: Web-Based Development and Psychometric Validation of Core Thrive Items. Journal of Medical Internet Research 2019;21(1):e12075
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Park J, Park S, Kim G, Kim K, Jung J, Yoo S, Yi G, Lee D. Reliable Data Collection in Participatory Trials to Assess Digital Healthcare Applications. IEEE Access 2020;8:79472
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Hadgkiss EJ, Jelinek GA, Weiland TJ, Pereira NG, Marck CH, van der Meer DM. Methodology of an International Study of People with Multiple Sclerosis Recruited through Web 2.0 Platforms: Demographics, Lifestyle, and Disease Characteristics. Neurology Research International 2013;2013:1
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Madathil KC, Greenstein JS, Juang KA, Neyens DM, Gramopadhye AK. An Investigation of the Informational Needs of Ovarian Cancer Patients and Their Supporters. Proceedings of the Human Factors and Ergonomics Society Annual Meeting 2013;57(1):748
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Marziniak M, Brichetto G, Feys P, Meyding-Lamadé U, Vernon K, Meuth SG. The Use of Digital and Remote Communication Technologies as a Tool for Multiple Sclerosis Management: Narrative Review. JMIR Rehabilitation and Assistive Technologies 2018;5(1):e5
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ZIEBLAND S, WYKE S. Health and Illness in a Connected World: How Might Sharing Experiences on the Internet Affect People's Health?. The Milbank Quarterly 2012;90(2):219
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Yang N, Ginsburg GS, Simmons LA. Personalized medicine in women's obesity prevention and treatment: implications for research, policy and practice. Obesity Reviews 2013;14(2):145
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Schroeder EB, Desai J, Schmittdiel JA, Paolino AR, Schneider JL, Goodrich GK, Lawrence JM, Newton KM, Nichols GA, O'Connor PJ, Fitz-Randolph M, Steiner JF. 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
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Ivanov A, Sharman R, Rao HR. Exploring factors impacting sharing health-tracking records. Health Policy and Technology 2015;4(3):263
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Benedict C, Victorson D, Love B, Fuehrer D, Lazard A, Saffer AJ, Linscott T, Zachary M. The Audacity of Engagement: Hearing Directly from Young Adults with Cancer on Their Attitudes and Perceptions of Cancer Survivorship and Cancer Survivorship Research. Journal of Adolescent and Young Adult Oncology 2018;7(1):103
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Kulanthaivel A, Fogel R, Jones J, Lammert C. Digital Cohorts Within the Social Mediome: An Approach to Circumvent Conventional Research Challenges?. Clinical Gastroenterology and Hepatology 2017;15(5):614
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Ploderer B, Smith W, Pearce J, Borland R. An Object-Centred Approach to Encourage Online Participation in the Context of Behaviour Change. Computer Supported Cooperative Work (CSCW) 2015;24(1):39
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Nyman E, Vaughan T, Desta B, Wang X, Barut V, Emmas C. Characteristics and Symptom Severity of Patients Reporting Systemic Lupus Erythematosus in the PatientsLikeMe Online Health Community: A Retrospective Observational Study. Rheumatology and Therapy 2020;7(1):201
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Luo A, Xin Z, Yuan Y, Wen T, Xie W, Zhong Z, Peng X, Ouyang W, Hu C, Liu F, Chen Y, He H. Multidimensional Feature Classification of the Health Information Needs of Patients With Hypertension in an Online Health Community Through Analysis of 1000 Patient Question Records: Observational Study. Journal of Medical Internet Research 2020;22(5):e17349
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Ahern DK, Woods SS, Lightowler MC, Finley SW, Houston TK. Promise of and Potential for Patient-Facing Technologies to Enable Meaningful Use. American Journal of Preventive Medicine 2011;40(5):S162
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. 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
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Maier A, Holm T, Wicks P, Steinfurth L, Linke P, Münch C, Meyer R, Meyer T. Online assessment of ALS functional rating scale compares well to in-clinic evaluation: A prospective trial. Amyotrophic Lateral Sclerosis 2012;13(2):210
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. Design challenges for ubiquitous and personal computing in chronic disease care and patient empowerment: a case study rethinking diabetes self-monitoring. Personal and Ubiquitous Computing 2014;18(5):1277
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Atanasova S, Kamin T, Petrič G. The benefits and challenges of online professional-patient interaction: Comparing views between users and health professional moderators in an online health community. Computers in Human Behavior 2018;83:106
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Gruzd A, Haythornthwaite C. Enabling Community Through Social Media. Journal of Medical Internet Research 2013;15(10):e248
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Abel O, Shatunov A, Jones AR, Andersen PM, Powell JF, Al-Chalabi A. Development of a Smartphone App for a Genetics Website: The Amyotrophic Lateral Sclerosis Online Genetics Database (ALSoD). JMIR mhealth and uhealth 2013;1(2):e18
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Ivanova J, Grando A, Murcko A, Saks M, Whitfield MJ, Dye C, Chern D. Mental health professionals’ perceptions on patients control of data sharing. Health Informatics Journal 2020;26(3):2011
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Mao B, Morgan SE, Peng W, McFarlane SJ, Occa A, Grinfeder G, Byrne MM. What Motivates You to Share? The Effect of Interactive Tailored Information Aids on Information Sharing about Clinical Trials. Health Communication 2021;36(11):1388
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Subirats L, Ceccaroni L, Lopez-Blazquez R, Miralles F, García-Rudolph A, Tormos JM. Circles of Health: Towards an advanced social network about disabilities of neurological origin. Journal of Biomedical Informatics 2013;46(6):1006
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Chiche L, Jourde-Chiche N, Stephan D, Hermant N, Harle J, Chekroun M. Communauté en ligne de patients lupiques en France : leurs caractéristiques, leurs besoins et leurs sources d’informations. La Revue de Médecine Interne 2013;34:A71
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. e-Health, social media, and rheumatology: Can they get along?. Joint Bone Spine 2018;85(3):265
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