Tag Archives: Ethics in research

PMean: Misunderstanding autism

A friend of mine posted an inspiring story published in the Washington Post. Unfortunately, it did not inspire me, but rather made me worried about how often we misunderstand autism and how much trouble this causes. It’s not statistics, per se, but rather represents an example of how research on new approaches for patients with autism can end up being abusive. Continue reading

Recommended: Research vs Quality Improvement

I ran across a one page handout in PDF format that discussed the difference between research and quality improvement. It was written from the perspective of the IRB (Institutional Review Board) at UMKC. It’s a nice summary, although the topic is a bit more complex than a single page handout might imply. This is a good starting point for deciding what type of study you want to do. Continue reading

Recommended: Special issue–Using Big Data to Transform Care

The July 2014 issue of Health Affairs is devoted entirely to “big data”.  The articles provide a general overview to big data, several applications of big data, big data and genomics, use of electronic health records, and ethical issues including privacy concerns. For now, at least, the articles are available for free to any user. Continue reading

Recommended: Troubleshooting Public Data Archiving: Suggestions to Increase Participation

I’ve always been a big fan of data sharing, mostly for selfish reasons. I like to see interesting data sets and use them as teaching examples and on my website. There are unselfish reasons for sharing data: such as the increase in research transparency and the ability to pursue new avenues of research. But if we want to see more progress in sharing data, there need to be some improvements in public data archives, In particular, there needs to be more flexibility in data embargoes, better communication between the original data set owners and those who would like to re-use their data, better understanding of the ethics of data re-use, and more rewards for those who take the time and trouble to share their data. Continue reading