UNDERSTANDING DISEASE BURDEN AND OUTCOMES FROM THE PATIENT’S PERSPECTIVE USING DISEASE-FOCUSED INTERNET FORUM DATA

Author(s)

Thomas M1, Akhtar A2, Terkowitz JM3, Powell GE4
1GlaxoSmithKline, Collegeville, PA, USA, 2ZeroChaos, Orlando, FL, USA, 3Inspire, Arlignton, VA, USA, 4GSK, RTP, NC, USA

OBJECTIVES: This research examines what value disease-focused internet forum data offers GSK, including characterizing data elements and whether linked discussion threads provide longitudinal insights into disease and patient perspectives. METHODS:  This study was a retrospective analysis using deidentified Inspire patient forum data for 2 disease areas: systemic sclerosis (“SS”) and rheumatoid arthritis (“RA”). The dataset consisted of English language posts (n=62,806), comprising 5,606 threads, spanning Jan-01-2015 to Nov-30-2015 and representing 6,548 distinct authors. A third party vendor removed PII and discussion threads were programmatically linked by a unique identifier. A random sample of 2,817 threads (50%) consisting of 21,313 posts (34%), representing 3,601 unique authors (55%) was created for curation and analysis. RESULTS:  Of the 3601 unique authors curated, 870 (24%) indicated they had been diagnosed with SS, 267 (7.4%) indicated they had RA and 54 (1.5%) indicated they had both RA and SS. For 1,975 authors (55%), we were unable to determine a diagnosis. Of the 435 (12%) remaining authors, 203 (5.6%) had other autoimmune disease as diagnosis and 232 (6.4%) were probable RA or probable SS. Patients discussed disease duration in 722 posts, and of those posts 296 (41%) indicated they had the disease for more than 10 years. 26% (n=5541) of posts were made by the patient. 13% gave medication information. 3% discussed non-medical treatments. 5% discussed medical history. 2% provided lab/imaging results. 5% were seeking information. 8% discussed burden of disease. CONCLUSIONS:  Disease-focused internet forum data provides valuable patient insights and information including: disease burden, duration of disease, medication and non-medication treatments, co-morbidities, and information being sought/provided. Additional research is required to further assess the value of longitudinal data for understanding the patient disease journey and how best to leverage these insights for drug development and safety.

Conference/Value in Health Info

2017-05, ISPOR 2017, Boston, MA, USA

Value in Health, Vol. 20, No. 5 (May 2017)

Code

PHP197

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes, Stated Preference & Patient Satisfaction

Disease

Multiple Diseases, Musculoskeletal Disorders, Rare and Orphan Diseases, Systemic Disorders/Conditions

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