Using a digital patient powered research network to identify outcomes of importance to patients with multiple myeloma
Why this work is in the frame
A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.
Bibliographic record
Abstract
BACKGROUND: Social 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). METHODS: Data 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. RESULTS: Two 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. CONCLUSION: Patient-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.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.002 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it