ArticleJournal of patient-reported outcomes2020
Using a digital patient powered research network to identify outcomes of importance to patients with multiple myeloma.
Article in Journal of patient-reported outcomes, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
9 citing papers in PubMed.
- Extracting Quality of Life Information of Patients Diagnosed With Breast Cancer From Health Care Online Forum Posts: Data Feasibility Study.JMIR cancer · 2026Article
- Lived Experiences of Patients With Rare Diseases and Healthcare System Barriers: A Phenomenological Study.Journal of nursing management · 2026Article
- Artificial intelligence-enabled social media listening to inform early patient-focused drug development: perspectives on approaches and strategies.Frontiers in digital health · 2024Article
- Patient listening on social media for patient-focused drug development: a synthesis of considerations from patients, industry and regulators.Frontiers in medicine · 2024Article
- Understanding the Needs and Lived Experiences of Patients With Graft-Versus-Host Disease: Real-World European Public Social Media Listening Study.JMIR cancer · 2023Article
- The patient experience of relapsed refractory multiple myeloma and perspectives on emerging therapies.Cancer reports (Hoboken, N.J.) · 2022Article
- Review
- Understanding the Lived Experiences of Patients With Melanoma: Real-World Evidence Generated Through a European Social Media Listening Analysis.JMIR cancer · 2022Article
- Insights from Social Media on the Patient Experience of Living With Rare Eosinophil-Driven Diseases.Journal of patient experience · 2022Article
Corrections and comments
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Authors and funding
2 authors.
Funding
Abstract
backgroundSocial media platforms give patients a voice by allowing them to discuss their health and connect with others. These unfiltered and genuine reports offer direct access to what matters most to patients. Exploring the patient-reported outcomes discussed in these platforms reveal clinical insights and behavioral patterns of the real-world patient journey. This research study reviewed health-related quality of life (HRQoL) concepts reported by patients with multiple myeloma (MM).
methodsData were obtained using the Belong.life patient-powered research network (PPRN) using social media listening methods. The analysis cohort consisted of adults diagnosed with MM who signed into the Belong.life platform by June 2018. Natural language processing and medical neural networks were utilized to extract text data to mine and scan for concepts using programmed algorithms. The textual review of the data was conducted on two levels: the over-arching concept of interest (broad symptom and impact classification) and the more specific symptom and impacts report. Concepts were analyzed descriptively and summarized by age, gender, context of report, and stage of disease/treatment journey.
resultsTwo hundred thirty patients with MM from the United States (52%), Israel (42%), Canada (3%), and 3% from Egypt, France, Greece, India, United Kingdom, and Australia were identified. A total of 57% were female and at account registration the median age was 57 years. A total of 126 patients had evaluable text data to search concepts being discussed. The PPRN platform identified 93% of the concepts from the conceptual model developed based on prior literature review. The most commonly reported symptoms were neuropathy, tiredness, nausea, back pain, fatigue, and bone pain. Back pain appeared as the most prominent symptom early in the disease and sometimes occurred prior to MM diagnosis. Tiredness, nausea, fatigue, and bone pain were frequently reported after MM diagnosis, with the start of treatment.
conclusionPatient-oriented social media platforms, such as Belong.life, can capture and contribute to a holistic vision of concepts surrounding patients' HRQoL. The ability to understand when a certain debilitating symptom appeared and to which sub-population of patients may allow for a personalized approach to treatment, improving adherence and quality of care as well as increasing patient well-being.
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