Comparison of Patient and Expert Perceptions of the Attainment of Research Milestones in Parkinson's Disease. Kane, P. B., Benjamin, D. M., Barker, R. A., Lang, A. E., Sherer, T., & Kimmelman, J. October, 2020. _eprint: https://onlinelibrary.wiley.com/doi/pdf/10.1002/mds.28319
Comparison of Patient and Expert Perceptions of the Attainment of Research Milestones in Parkinson's Disease [link]Paper  doi  abstract   bibtex   
Background Commentators suggest that patients have unrealistic expectations about the pace of research advances and that such expectations interfere with patient decision-making. Objective The objective of this study was to compare expert expectations about the timing of research milestone attainment with those of patients who follow Parkinson's disease (PD) research. Methods Patients with PD and experts were asked to provide forecasts about 11 milestones in PD research in an online survey. PD experts were identified from a Michael J. Fox Foundation database, highly ranked neurology centers in the United States and Canada, and corresponding authors of articles on PD in top medical journals. Patients with PD were recruited through the Michael J. Fox Foundation. We tested whether patient forecasts differed on average from expert forecasts. We also tested whether differences between patient forecasts and the average expert forecasts were associated with any demographic factors. Results A total of 256 patients and 249 PD experts completed the survey. For 9 of the 11 milestones, patients' forecasts were on average higher than those of experts. Only exercise therapy met our 10% difference threshold for practical significance. Education was the only demographic that predicted patient deviations from expert forecasts on milestone forecasts. Patients offered significantly higher forecasts than experts that the clinical trials used in milestone queries would report positive primary outcomes. Conclusions Differences between patient and expert expectations about research milestones were generally minor, suggesting that there is little cause for concern that patients who follow PD research are unduly swayed by inaccurate representations of research advancement in the media or elsewhere. © 2020 International Parkinson and Movement Disorder Society
@article{kane2020MDS,
	title = {Comparison of Patient and Expert Perceptions of the Attainment of Research Milestones in Parkinson's Disease},
	rights = {© 2020 International Parkinson and Movement Disorder Society},
	issn = {1531-8257},
	url = {http://onlinelibrary.wiley.com/doi/abs/10.1002/mds.28319},
	doi = {10.1002/mds.28319},
	abstract = {Background Commentators suggest that patients have unrealistic expectations about the pace of research advances and that such expectations interfere with patient decision-making. Objective The objective of this study was to compare expert expectations about the timing of research milestone attainment with those of patients who follow Parkinson's disease ({PD}) research. Methods Patients with {PD} and experts were asked to provide forecasts about 11 milestones in {PD} research in an online survey. {PD} experts were identified from a Michael J. Fox Foundation database, highly ranked neurology centers in the United States and Canada, and corresponding authors of articles on {PD} in top medical journals. Patients with {PD} were recruited through the Michael J. Fox Foundation. We tested whether patient forecasts differed on average from expert forecasts. We also tested whether differences between patient forecasts and the average expert forecasts were associated with any demographic factors. Results A total of 256 patients and 249 {PD} experts completed the survey. For 9 of the 11 milestones, patients' forecasts were on average higher than those of experts. Only exercise therapy met our 10\% difference threshold for practical significance. Education was the only demographic that predicted patient deviations from expert forecasts on milestone forecasts. Patients offered significantly higher forecasts than experts that the clinical trials used in milestone queries would report positive primary outcomes. Conclusions Differences between patient and expert expectations about research milestones were generally minor, suggesting that there is little cause for concern that patients who follow {PD} research are unduly swayed by inaccurate representations of research advancement in the media or elsewhere. © 2020 International Parkinson and Movement Disorder Society},
	issue = {n/a},
	journaltitle = {Movement Disorders},
	author = {Kane, Patrick Bodilly and Benjamin, Daniel M. and Barker, Roger A. and Lang, Anthony E. and Sherer, Todd and Kimmelman, Jonathan},
	urldate = {2020-10-01},
	date = {2020-10-01},
	month = oct,
	year = {2020},
	langid = {english},
	note = {\_eprint: https://onlinelibrary.wiley.com/doi/pdf/10.1002/mds.28319},
	keywords = {forecasting, prediction, Parkinson's disease},
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}

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