Albemarle-Pamlico Sounds revealed and stated preference data.
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ABSTRACT:
SUBMITTER: Whitehead JC
PROVIDER: S-EPMC4510052 | biostudies-literature | 2015 Jun
REPOSITORIES: biostudies-literature
Publications
Albemarle-Pamlico Sounds revealed and stated preference data.
Data in brief 20150213
In this article we describe the contingent valuation and behavior methods scenario developed in the 1995 Albemarle-Pamlico Sounds Survey. The survey elicits revealed and stated preference recreation behavior data which are used to estimate the value of water quality improvements [4,8]. The survey elicits willingness to pay data which are used to conduct a split-sample scope test [7]. The data are used to jointly estimate revealed and stated preference recreation and willingness to pay data [2,6] ...[more]
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Project description:ObjectiveTo investigate public willingness to share sensitive health information for research, health policy and clinical practice.MethodsA total of 1,003 Australian respondents answered an online, attribute-driven, survey in which participants were asked to accept or reject hypothetical choice sets based on a willingness to share their health data for research and frontline-medical support as part of an integrated health system. The survey consisted of 5 attributes: Stakeholder access for analysis (Analysing group); Type of information collected; Purpose of data collection; Information governance; and Anticipated benefit; the results of which were analysed using logistic regression.ResultsWhen asked about their preference for sharing their health data, respondents had no preference between data collection for the purposes of clinical practice, health policy or research, with a slight preference for having government organisations manage, govern and curate the integrated datasets from which the analysis was being conducted. The least preferred option was for personal health records to be integrated with insurance records or for their data collected by privately owned corporate organisations. Individuals preferred their data to be analysed by a public healthcare provider or government staff and expressed a dislike for any private company involvement.ConclusionsThe findings from this study suggest that Australian consumers prefer to share their health data when there is government oversight, and have concerns about sharing their anonymised health data for clinical practice, health policy or research purposes unless clarity is provided pertaining to its intended purpose, limitations of use and restrictions to access. Similar findings have been observed in the limited set of existing international studies utilising a stated preference approach. Evident from this study, and supported by national and international research, is that the establishment and preservation of a social license for data linkage in health research will require routine public engagement as a result of continuously evolving technological advancements and fluctuating risk tolerance. Without more work to understand and address stakeholder concerns, consumers risk being reluctant to participate in data-sharing and linkage programmes.
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Project description:Objectives: To survey, analyze, and ascertain the preferences for specialty pharmacy services among patients requiring complex care and to provide evidence to support specialty pharmacy service decision-making in China. Methods: To identify essential service attributes and levels, a review of the literature, discussions with specialty pharmacy managers and a pilot questionnaire were conducted. A D-efficient fractional factorial design was used to generate the discrete-choice experiment (DCE) questionnaire. A face-to-face survey of patients with chronic illness and their families or friends was conducted at three specialty pharmacies in Chengdu and Qingdao, China. A mixed logit model was used for estimation. Results: Six relevant attributes were identified and incorporated into the DCE questionnaire. A total of 417 participants completed the survey (mean age 43 years, 45.1% males), and 32.1% had lung cancer. The conditional relative importance showed that the most critical attribute was "frequency of telephone follow-up to monitor adverse drug reactions (ADRs), "followed by "mode of drug delivery," "provider of medication guidance services," and "availability of medical insurance consultation"; the least important attribute was "business hours." A 1 min increase in time spent led to a 0.73% decrease in the probability that a service profile would be chosen. Negative preferences were noted for ADR monitoring by telephone follow-up once a year (β = -0.23, p < 0.001) and business hours [8:30-20:00 (Monday to Friday), 8:30-17:30 (weekend)] (β = -0.12, p < 0.001). Compared with women, men had a higher preference for service monitoring ADRs once every 3 months. Conclusions: Preference measurements showed that "frequency of telephone follow-up to monitor ADRs" had the most critical impact on decisions, followed by "mode of drug delivery." Specialty pharmacies in China need to take these findings into account to improve their design to increase uptake and patient loyalty.
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