Spontaneously Generated Online Patient Experience of Modafinil: A Qualitative and NLP Analysis
Open Access
- 17 February 2021
- journal article
- research article
- Published by Frontiers Media SA in Frontiers in Digital Health
Abstract
Objective: To compare the findings from a qualitative and a natural language processing (NLP) based analysis of online patient experience posts on patient experience of the effectiveness and impact of the drug Modafinil. Methods: Posts (n = 260) from 5 online social media platforms where posts were publicly available formed the dataset/corpus. Three platforms asked posters to give a numerical rating of Modafinil. Thematic analysis: data was coded and themes generated. Data were categorized into PreModafinil, Acquisition, Dosage, and PostModafinil and compared to identify each poster's own view of whether taking Modafinil was linked to an identifiable outcome. We classified this as positive, mixed, negative, or neutral and compared this with numerical ratings. NLP: Corpus text was speech tagged and keywords and key terms extracted. We identified the following entities: drug names, condition names, symptoms, actions, and side-effects. We searched for simple relationships, collocations, and co-occurrences of entities. To identify causal text, we split the corpus into PreModafinil and PostModafinil and used n-gram analysis. To evaluate sentiment, we calculated the polarity of each post between −1 (negative) and +1 (positive). NLP results were mapped to qualitative results. Results: Posters had used Modafinil for 33 different primary conditions. Eight themes were identified: the reason for taking (condition or symptom), impact of symptoms, acquisition, dosage, side effects, other interventions tried or compared to, effectiveness of Modafinil, and quality of life outcomes. Posters reported perceived effectiveness as follows: 68% positive, 12% mixed, 18% negative. Our classification was consistent with poster ratings. Of the most frequent 100 keywords/keyterms identified by term extraction 88/100 keywords and 84/100 keyterms mapped directly to the eight themes. Seven keyterms indicated negation and temporal states. Sentiment was as follows 72% positive sentiment 4% neutral 24% negative. Matching of sentiment between the qualitative and NLP methods was accurate in 64.2% of posts. If we allow for one category difference matching was accurate in 85% of posts. Conclusions: User generated patient experience is a rich resource for evaluating real world effectiveness, understanding patient perspectives, and identifying research gaps. Both methods successfully identified the entities and topics contained in the posts. In contrast to current evidence, posters with a wide range of other conditions found Modafinil effective. Perceived causality and effectiveness were identified by both methods demonstrating the potential to augment existing knowledge.Keywords
Funding Information
- Warwick Medical School
This publication has 87 references indexed in Scilit:
- Online Information Exchanges for Parents of Children With a Rare Health Condition: Key Findings From an Online Support CommunityJournal of Medical Internet Research, 2013
- Amphetamines for Attention Deficit Hyperactivity Disorder (ADHD) in adultsEmergencias, 2011
- Patient-reported Outcomes as a Source of Evidence in Off-Label Prescribing: Analysis of Data From PatientsLikeMeJournal of Medical Internet Research, 2011
- Pharmacological treatments for fatigue associated with palliative carePublished by Wiley ,2010
- Christopher D. Manning, Prabhakar Raghavan, Hinrich Schütze, Introduction to Information Retrieval, Cambridge University Press. 2008. ISBN-13 978-0-521-86571-5, xxi + 482 pages.Natural Language Engineering, 2010
- A Systematic Review of ModafinilBritish Journal of Psychology, 2006
- Using thematic analysis in psychologyQualitative Research in Psychology, 2006
- Modafinil for daytime somnolence in Parkinson's disease: double blind, placebo controlled parallel trialJournal of Neurology, Neurosurgery & Psychiatry, 2005
- Bridging the gap.: The separate worlds of evidence-based medicine and patient-centered medicinePatient Education and Counseling, 2000
- The Powerful Placebo Effect: Fact or Fiction?Journal of Clinical Epidemiology, 1997