Abstract
BackgroundAn enormous amount of information relevant to public health is being generated directly by online communities.ObjectiveTo explore the feasibility of creating a dataset that links patient-reported outcomes data, from a Web-based survey of US patients with multiple sclerosis (MS) recruited on open Internet platforms, to health care utilization information from health care claims databases. The dataset was generated by linkage analysis to a broader MS population in the United States using both pharmacy and medical claims data sources.MethodsUS Facebook users with an interest in MS were alerted to a patient-reported survey by targeted advertisements. Eligibility criteria were diagnosis of MS by a specialist (primary progressive, relapsing-remitting, or secondary progressive), ≥12-month history of disease, age 18-65 years, and commercial health insurance. Participants completed a questionnaire including data on demographic and disease characteristics, current and earlier therapies, relapses, disability, health-related quality of life, and employment status and productivity. A unique anonymous profile was generated for each survey respondent. Each anonymous profile was linked to a number of medical and pharmacy claims datasets in the United States. Linkage rates were assessed and survey respondents’ representativeness was evaluated based on differences in the distribution of characteristics between the linked survey population and the general MS population in the claims databases.ResultsThe advertisement was placed on 1,063,973 Facebook users’ pages generating 68,674 clicks, 3719 survey attempts, and 651 successfully completed surveys, of which 440 could be linked to any of the claims databases for 2014 or 2015 (67.6% linkage rate). Overall, no significant differences were found between patients who were linked and not linked for educational status, ethnicity, current or prior disease-modifying therapy (DMT) treatment, or presence of a relapse in the last 12 months. The frequencies of the most common MS symptoms did not differ significantly between linked patients and the general MS population in the databases. Linked patients were slightly younger and less likely to be men than those who were not linkable.ConclusionsLinking patient-reported outcomes data, from a Web-based survey of US patients with MS recruited on open Internet platforms, to health care utilization information from claims databases may enable rapid generation of a large population of representative patients with MS suitable for outcomes analysis.
Highlights
The Internet and social media are driving a revolution in communication and information sharing, with a fundamental impact on health care
Linking patient-reported outcomes data, from a Web-based survey of US patients with multiple sclerosis (MS) recruited on open Internet platforms, to health care utilization information from claims databases may enable rapid generation of a large population of representative patients with MS suitable for outcomes analysis
We have previously reported on the feasibility of applying social media listening to retrospective analyses in outcomes research, the use of patient-reported reasons for switching between different treatment modalities for multiple sclerosis (MS) [12]
Summary
The Internet and social media are driving a revolution in communication and information sharing, with a fundamental impact on health care. Patients’ voices have become more influential through the exchange of information in the form of conversations, blogs, tweets, and other postings on social media. This development is changing the power balance in decisions regarding health care, requiring traditional stakeholders to recognize patients’ perspectives in the provision and evaluation of treatments [1,2,3]. An enormous amount of information relevant to public health is being generated directly by online communities
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