One such network is the PaTH Network, one of 13 Clinical Data Research Networks (CDRNs) funded by the Patient-Centered Outcomes Research Institute, a nonprofit created through the Patient Protection and Affordable Care Act. One possible solution is to aggregate PPI collected from multiple sites across a research network. 3– 5 Although PPI can be particularly useful for understanding the perspective of people with rare diseases, 6 data collection efforts in these populations present unique challenges notably small populations make accessing patients more difficult. 1, 2 The recent interest in the United States in the patient’s perspective derives from a paradigm shift by the federal government toward advancing patient engagement science and patient preference assessment. Patient preference information (PPI) are data that explain the relative desirability or acceptability of attributes that vary among alternative health interventions. Keywords: stated preference methods, discrete choice experiment, patient-centered outcomes research, benefit-risk trade-off The power of consolidated collection efforts may lead to the ability to use preference data to inform decision-making at the regional, specialty, or individual encounter level. Future research should continue to explore pathways for the collection and use of patient preference information across networks. The network was advantageous to the study of patient preferences. In terms of benefit-risk trade-offs, improving efficacy in terms of lung function was 1.6 times as important as decreasing risk of gastrointestinal problems.Ĭonclusion: This study used IPF as a proof of concept to demonstrate the feasibility of collecting patient preference information in a CDRN. In terms of side effects, decreasing risk of gastrointestinal problems was 2.6 times as important as decreasing risk of sun sensitivity and 2.4 times as important as decreasing risk of liver injury. Improving efficacy in terms of lung function was 2.16 times as important as improving efficacy in terms of shortness of breath. The amount of choice attributable to a benefit of slowing of decline in lung function was 36%. Results: Thirty-three patients completed the preference experiment. Survey data were augmented with data from electronic health records and patient-reported outcome surveys. Patients and methods: Utilizing a cohort of idiopathic pulmonary fibrosis (IPF) patients across a CDRN, a discrete choice experiment was administered via electronic and paper methods to collect patient preference information about benefits and risks of two therapeutic options.
This study aims to demonstrate the feasibility of collecting patient preference information for a rare disease in a CDRN, using idiopathic pulmonary fibrosis as proof of concept. Clinical Data Research Networks (CDRNs) offer an opportunity to overcome those challenges by providing infrastructure for accessing patients and sharing data. Purpose: Rare diseases present challenges for accessing patient populations to conduct surveys. Ilene L Hollin, 1 Anne EF Dimmock, 2 John FP Bridges, 3 Sonye K Danoff, 4 Rebecca Bascom 2ġDepartment of Health Services Administration and Policy, Temple University College of Public Health, Philadelphia, PA, USA 2Division of Pulmonary, Allergy and Critical Care Medicine, Department of Medicine, Penn State University College of Medicine, Hershey, PA, USA 3Departments of Biomedical Informatics and Surgery, Ohio State University College of Medicine, Columbus, OH, USA 4Division of Pulmonary Critical Care Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA
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