informational issues with health research: scale, structure, and trust
![](https://s3.amazonaws.com/media-p.slid.es/uploads/568960/images/2996794/Screenshot_2016-08-25_14.42.26.png)
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https://hardsci.wordpress.com/2016/08/11/everything-is-fucked-the-syllabus/
who am i?
- Pharmacy Librarian
- Previously worked with post-graduate medicine and public health at UBC
- Also support open science, research commercialization
First: Let's talk about my problems
it's surprisingly hard to get people to care about information
Why?
things best learned by doing
https://www.flickr.com/photos/aslakr/14507479/
you need to care about the content to get adequate feedback when learning information systems
finding some types of information is easy so we think everything is easy
https://www.flickr.com/photos/christoph_straessler/10142109363/
Problems are more interesting than solutions
3 types of problems:
- Problems of scale and structure
- Problems of trust
Problems of method
problems of scale and structure
https://www.flickr.com/photos/worldoflard/8264273951/
![](https://s3.amazonaws.com/media-p.slid.es/uploads/568960/images/2997117/geneology-of-science.jpg)
http://www.sustainable.soltechdesigns.com/peak-science.html
![](https://s3.amazonaws.com/media-p.slid.es/uploads/568960/images/2993777/pubmedsize.png)
https://www.nlm.nih.gov/bsd/stats/cit_added.html
![](https://s3.amazonaws.com/media-p.slid.es/uploads/568960/images/2993763/journal.pmed.1000326.g004.png)
Bastian, H., Glasziou, P., & Chalmers, I. (2010). Seventy-five trials and eleven systematic reviews a day: how will we ever keep up? PLoS Medicine, 7(9), e1000326. http://doi.org/10.1371/journal.pmed.1000326
The Mass Production of Redundant, Misleading, and Conflicted Systematic Reviews and Meta‐analysesThe Milbank Quarterly
Article Databases
- Disciplinary DatabasesMedline
- Medline/Pubmed (& PMC)
- EMBASE
- CINAHL
- Cochrane
- ERIC (education)
- PsycInfo
- Sociological Abstracts
- Dissertations & Thesis
- Conference proceedings
- Institutional Repositories
- National/region databases (LILACS)
- Unindexed Publications
(information privilege and what you will and will not have access to once you graduate)
![](https://s3.amazonaws.com/media-p.slid.es/uploads/568960/images/3009416/Screenshot_2016-09-15_11.52.44.png)
Gray Literature
"That which is produced on all levels of government, academics, business and industry in print and electronic formats, but which is not controlled by commercial publishers."
The Fourth International Conference on Grey Literature
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<dc:problems>metadata</dc:problems>
- Language is variable
- Errors are everywhere
- Author's don't write to be found
- Indexing is too complex for most users
- Indexing is bad for interdisciplinary and social determinants of health research
Representations of Marijuana in MeSH
- Cannabis
- Medical marijuana
- Marijuana smoking
- Marijuana abuse
- Cannabinoids
- Cannabidiol
- Cannabinol
- Dronabinol
Strategies
- Pragmatism & the usefulness equation
- Think about stakeholders
- Bradeford's Law
- Evidence-Based Practice
- (Problems w/ Systematic Reviews)
Value of medical information =
relevance x validity / work
problems of trust
(publication bias)
(missing data)
(moving goalposts)
![](https://s3.amazonaws.com/media-p.slid.es/uploads/568960/images/2997160/Screenshot_2016-09-12_11.30.24.png)
Vedula, S. S., Bero, L., Scherer, R. W., & Dickersin, K. (2009). Outcome reporting in industry-sponsored trials of gabapentin for off-label use. The New England Journal of Medicine, 361(20), 1963–71. http://doi.org/10.1056/NEJMsa0906126
![](https://s3.amazonaws.com/media-p.slid.es/uploads/568960/images/2997161/Screenshot_2016-09-12_11.30.37.png)
- alltrials + opentrials
- pre-registration (clinicaltrials.gov)
Fraud
![](https://s3.amazonaws.com/media-p.slid.es/uploads/568960/images/3009693/Screenshot_2016-09-15_12.43.07.png)
![](https://s3.amazonaws.com/media-p.slid.es/uploads/568960/images/3009700/Screenshot_2016-09-15_12.44.01.png)
(retractions)
Error & Reproducibility
![](https://s3.amazonaws.com/media-p.slid.es/uploads/568960/images/2997241/13059_2016_1044_Fig1_HTML.gif)
Prevalence of gene name errors in supplementary Excel files. a Percentage of published papers with supplementary gene lists in Excel files affected by gene name errors. b Increase in gene name errors by year
Ziemann, M., Eren, Y., El-Osta, A., Zeeberg, B., Riss, J., Kane, D., … Tomashevsky, M. (2016). Gene name errors are widespread in the scientific literature. Genome Biology, 17(1), 177. http://doi.org/10.1186/s13059-016-1044-7
(Data Management + Quality Control)
![](https://s3.amazonaws.com/media-p.slid.es/uploads/568960/images/3000361/Screenshot_2016-09-13_10.01.59.png)
OPEN
Flickr user: scottishgovernment
- Open Access
- Open Data
- Open Science
Open Access
Open Data
Open Science
Other Issues
- Scholarly Metrics and Incentives
- Peer Review
- Predatory Publishing
(thank you)
This Is Fine
By Franklin Sayre
This Is Fine
- 1,663