数字社会中的研究数据使用:一个深思熟虑的公众参与
Kimberlyn M McGrail1,2, Jack Teng2, Colene Bentley3
1Centre for Health Services and Policy Research, University of British Columbia, Vancouver, British Columbia, Canada.
International journal of population data science
|December 2, 2024
概括
关于链接健康数据用于研究的公众咨询显示,当强有力的监督和公众意见优先考虑时,支持数据使用. 这确保了利益与对潜在危害的保护之间的平衡.
科学领域:
- 医疗信息学 医疗信息学
- 数据科学数据科学数据科学
- 公共政策 公共政策
背景情况:
- 不断发展的数据源提供了研究机会和伙伴关系潜力.
- 链接公共和私人数据引发了对个人和群体潜在的负面影响的担忧.
- 公共商对于平衡数据链接机会与必要保护至关重要.
研究的目的:
- 收集公众关于使用链接数据用于研究目的的意见.
- 探索公众对结合来自各种来源的数据的观点,包括电子医疗记录.
- 为政策制定提供有关数据使用授权和公众参与的信息.
主要方法:
- 在加拿大不列颠哥伦比亚省举行了为期四天的公开审议活动.
- 29名居民参与了有关有争议的数据使用问题的结构化讨论.
- 参与者讨论了电子医疗记录的使用和公私数据的结合.
主要成果:
- 达成了17个深思熟虑的结论,分为四个主题.
- 关键主题包括平衡利益和危害,数据使用保护,授权要求和持续的公众参与.
- 公众支持使用链接数据的研究,只要有强有力的监督和控制.
结论:
- 公共审议为制定有关链接数据研究的政策提供了必要的投入.
- 调查结果凸显了需要纳入公共价值观和持续参与的政策.
- 建议为链接公共和私人数据源的立法和实践提供信息.
更多相关视频
11:21Methodology for Establishing a Community-Wide Life Laboratory for Capturing Unobtrusive and Continuous Remote Activity and Health Data
Published on: July 27, 2018
8.2K
14:43A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting
Published on: January 12, 2018
11.7K
相关概念视频
Archival Research
15.9K
Some researchers gain access to large amounts of data without interacting with a single research participant. Instead, they use existing records to answer various research questions. This type of research approach is known as archival research. Archival research relies on looking at past records or data sets to look for interesting patterns or relationships. For example, a researcher might access the academic records of all individuals who enrolled in college within the past ten years and...
15.9K
Ethics in Research
22.9K
Today, scientists agree that good research is ethical in nature and is guided by a basic respect for human dignity and safety. However, this has not always been the case. Modern researchers must demonstrate that the research they perform is ethically sound.
22.9K
Data Collection by Survey
6.4K
The systematic method of obtaining and analyzing accurate information of a population is called data collection. A survey is a standard method of data collection that involves collecting information from a target human population about their experience, opinion, or knowledge of a product, service, or process. The responses are recorded and interpreted. The most common survey examples are written questionnaires, face-to-face or telephonic conversations, focus groups, and electronic (e-mail or...
6.4K
Surveys
14.7K
Often, psychologists develop surveys as a means of gathering data. Surveys are lists of questions to be answered by research participants, and can be delivered as paper-and-pencil questionnaires, administered electronically, or conducted verbally. Generally, the survey itself can be completed in a short time, and the ease of administering a survey makes it easy to collect data from a large number of people.
14.7K
Data Collection by Observations
11.7K
Data collection refers to a systematic way of obtaining, observing, measuring, and analyzing accurate information. Observational studies are one of the most widely used methods of data collection. It involves collecting data by observing the behavior and physical characteristics of a sample without making any modifications to the sample.
An astronomer viewing the motion and brightness of stars in the sky and recording the data is an example of observational data collection. A botanist recording...
An astronomer viewing the motion and brightness of stars in the sky and recording the data is an example of observational data collection. A botanist recording...
11.7K
Social Proof
27.5K
Social proof is a form of persuasion based on comparison and conformity. People compare their behavior and actions to what others are doing and will change to conform to do what their peers do.
27.5K
