| Title |
Data Sharing For Precision Medicine: Policy Lessons And Future Directions
|
|---|---|
| Published in |
Health Affairs, May 2018
|
| DOI | 10.1377/hlthaff.2017.1558 |
| Pubmed ID | |
| Authors |
Alessandro Blasimme, Marta Fadda, Manuel Schneider, Effy Vayena |
| Abstract |
Data sharing is a precondition of precision medicine. Numerous organizations have produced abundant guidance on data sharing. Despite such efforts, data are not being shared to a degree that can trigger the expected data-driven revolution in precision medicine. We set out to explore why. Here we report the results of a comprehensive analysis of data-sharing guidelines issued over the past two decades by multiple organizations. We found that the guidelines overlap on a restricted set of policy themes. However, we observed substantial fragmentation in the policy landscape across specific organizations and data types. This may have contributed to the current stalemate in data sharing. To move toward a more efficient data-sharing ecosystem for precision medicine, policy makers should explore innovative ways to cope with central policy themes such as privacy, consent, and data quality; focus guidance on interoperability, attribution, and public engagement; and promote data-sharing policies that can be adapted to multiple data types. |
X Demographics
The data shown below were collected from the profiles of 91 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United States | 34 | 37% |
| Switzerland | 15 | 16% |
| Canada | 5 | 5% |
| United Kingdom | 5 | 5% |
| Germany | 5 | 5% |
| Belgium | 3 | 3% |
| Italy | 2 | 2% |
| Indonesia | 2 | 2% |
| France | 2 | 2% |
| Other | 3 | 3% |
| Unknown | 15 | 16% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 59 | 65% |
| Scientists | 22 | 24% |
| Practitioners (doctors, other healthcare professionals) | 8 | 9% |
| Science communicators (journalists, bloggers, editors) | 2 | 2% |
Mendeley readers
The data shown below were compiled from readership statistics for 133 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 133 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Researcher | 21 | 16% |
| Student > Ph. D. Student | 17 | 13% |
| Student > Master | 17 | 13% |
| Other | 9 | 7% |
| Student > Doctoral Student | 8 | 6% |
| Other | 21 | 16% |
| Unknown | 40 | 30% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 18 | 14% |
| Computer Science | 13 | 10% |
| Social Sciences | 11 | 8% |
| Business, Management and Accounting | 10 | 8% |
| Agricultural and Biological Sciences | 6 | 5% |
| Other | 28 | 21% |
| Unknown | 47 | 35% |
Attention Score in Context
This research output has an Altmetric Attention Score of 128. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 26 April 2020.
All research outputs
#329,032
of 25,603,577 outputs
Outputs from Health Affairs
#776
of 6,523 outputs
Outputs of similar age
#7,357
of 339,759 outputs
Outputs of similar age from Health Affairs
#19
of 73 outputs
Altmetric has tracked 25,603,577 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 98th percentile: it's in the top 5% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 6,523 research outputs from this source. They typically receive a lot more attention than average, with a mean Attention Score of 69.1. This one has done well, scoring higher than 88% of its peers.
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We're also able to compare this research output to 73 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 75% of its contemporaries.