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Table 2 Included studies

From: A systematic literature review of researchers’ and healthcare professionals’ attitudes towards the secondary use and sharing of health administrative and clinical trial data

Author, location, date of data collection Methodology, sampling, analysis Health condition/setting No. of participants (N) Participant demographics, n (%) Key themes (alphabetically) relating to data Outcomes, result(s) QualSyst scores
Qualitative studies
 [18], Japan, November 2002 Focus group, thematic General health 7 Age, years
Between 37 and 44
Career Stage
12–17 years of experience
5 (72), internal medicine; 1 (14), emergency/intensive care; 1 (14), anaesthesiology
7 (100), male
Respondents involved in both clinical practice and research activities
Consent Consent
Prior permission to access archived information/medical records was desirable.
Individual informed consent complex to obtain in each case; patients provided opportunity to ‘opt out’ of research.
Procedure for permission to use medical records varied between hospitals.
Some researchers take for granted access to archived medical information without patients’ permission.
 [19], England and Northern Ireland, February to July 2006 Interviews and focus groups, purposively sampled, constant comparative method MS 68 Discipline
Neurologists, MS nurses, health service management professionals, researchers, representatives from pharmaceutical companies, social care professionals.
13, interviews; 10, focus groups
Access, systems, and metadata; consent; reasons for sharing; views on sharing Access, systems, and metadata
No one individual or body should be responsible for the security and access to data. Stringent access controls required. Access should be monitored by a committee.
• Direct access by pharmaceutical companies and marketing agencies was not considered appropriate.
• Professionals more cautious than patients with MS using personal data within a register
Prospective rights of patients must be protected to ensure privacy, including as a result of future developments.
Levels of involvement should be identified during consent process (i.e. from anonymised studies to direct participation).
Reasons for sharing
Facilitate short-term benefits: improved delivery of care, communication and receipt of information, quality of life.
Views on sharing
Altruistic attitudes towards the use of patient data in a register.
 [20], South Africa, May to September 2014 Interviews and group interviews and two focus groups, thematic analysis HIV/AIDS, TB 32 Age, years
39.3–48.6, average at sites
Career Stage
10 (31), junior researchers; 4 (13), research managers; 10 (31), senior researchers; 3 (9), policy and department managers; 3 (9), executive members
Discipline (sites)
1 (3), HIV/AIDS; 1 (3), fundamental research and specimen collection; 1 (3), social scientific research
22 (69), female
20 (62), interviews and groups; 12 (38), focus groups
Access, systems, and metadata; consent; curation; experience of sharing; reasons for sharing; reasons for not sharing; views on sharing Access, systems, and metadata
Proposed access to data varied from restricted/gate kept to requiring researchers to relinquish control over data collections once curated, or on release, unless embargoed.
The original consent must be respected in future research.
Researchers must inform participants about data sharing plans (immediate and future); a broad approach to consent was recommended.
Data should be in a retriable and auditable format to ensure that the data is accurately preserved and not misused.
After publication of primary analysis, there should be limited constraints or restrictions on the reuse of curated data.
Experience of sharing
Data sharing was either ad hoc/informal or through formal procedures enforced by institutional policy/contractual agreements.
Reasons for data sharing
Reasons include: move the field of science forward by opening new avenues of science or by closing knowledge gaps; collaborative communication; enhanced responsiveness of public health needs; validation of scientific outputs; reduced duplication of scientific effort; minimise research costs; an overwhelming public health interest or to minimise a disaster.
Reasons for not sharing
Competitive values of research data, including advancing researcher careers.
Not all data is ‘equal’ and should only be shared in certain circumstances.
Views on sharing
No categorical objections to sharing de-identified data for academic and public health purposes, however there was disagreement about the extent to which research data should be shared beyond this.
Extent of data sharing depends on the nature of the research question and whether the data could answer the question.
Some respondents suggested that all data be shared, all of the time.
 [21], Scotland, February and June 2011 Focus groups and interviews, thematic General health 27 Discipline
17 (63), GP; 10 (37), practice managers
GP’s practice managers and health service researchers in two Scottish health boards
Access, systems, and metadata, curation, reasons for sharing, views on sharing Access, systems, and metadata
Security and confidentiality concerns were expressed data. Assurances about the security, including accountability and transparency mechanisms were important.
GPs may be able to block patient involvement by refusing access records or by not giving permission for the data extraction from their clinical system.
Use of deceased patient data was a concern and required measures to prevent.
Concerns about impact on workload.
Reasons for sharing
Increased accessing to and recruitment patients for research/rapid access to a wider pool of patients.
Views on sharing
Clear support for the concept of a research register.
 [22], Australia, January to October 2007 Interviews, thematic analysis General health 20 Career stage
From registrar to ‘25 plus’ years
Overseas trained doctor awaiting Australian recognition to post graduate qualifications in Public Health, Obstetrics, Anaesthesiology, and Doctor of Philosophy.
16 (55) males
Access, systems, and metadata; curation; policy framework; reasons for sharing; reasons for not sharing Access, systems and metadata
Resistance towards unspecified data amalgamating HI systems due to: perceptions or attitudes about unwanted functionality (do not want/need), inadequate attributes (capability and receptivity), or undesirable impact on the clinician’s role (autonomy, status, control and workflow).
Respondents did not want to impact on current workflow or allocated time addressing ‘nonmedical’ issues.
Standardisation of processes and share clinical notes was noted.
Policy framework
Little to no interest in potential use of de-identified and delinked (not linked to other data such as demographic) amalgamated medical data.
Use would be facilitated if it were shown to have positive consequences that were closely aligned to improved patient outcomes, improved GP workflow, a clear and certain potential to advantage, and streamlined interaction with outside entities.
Reasons for sharing
Regardless of context, all respondents identified potential benefits from being able to access consolidated longitudinal patient records, and to a lesser extent linked statistical data.
Reasons for not sharing
The potential for competitive disadvantage, the resolution of ethical, moral, and legal issues, the availability of appropriate technology, and motivations for sharing (political and policy).
 [23], Canada, not provided Interview, thematic Ethics boards 30 Employment setting
30 (47), university-based; 16 (53), hospital-based
6 of 16 were specialised
19 (63), Ontario or Quebec
2 (median) (range 1–6) people per interview
Consent Note: Only data relating to the scenario involving retrospective medical record review are reported
Requirement for
47%, required individual patient consent; 10% would depend on how potentially identifying variables would be managed; 38% did not require consent; 7% suggested a notification and opt-out process.
Most agreed that consent would be required if identifiable information was being extracted.
Among those not requiring consent: substantial variation in recognising that the extracted information could potentially indirectly re-identify individuals.
Sites that required consent (n = 14, 47%), reasons for
47% the principle of respect; 36% legislative requirements; 14%, had a general policy requiring consent in such circumstances; 21% if consent was feasible, it should be sought; 71% indicated that data allowed potential re-identification of individuals, and therefore consent was required (ethnicity, date of birth, and postcode of mother etc.); 47% concerned about external access to the billing or the health records; 50% external access to identifiable records was either the reason for requiring consent or an important factor.
Several noted the fact that researchers would be going through the record itself, which, by nature, is identifying.
Sites that stated it depends (n = 3, 10%), reasons for
Whether or not consent would be required hinged entirely on the potential for indirectly identifying individuals from the combination of full postcode with ethnicity or date of birth.
If this information was essential, then consent would be required. If not or truncated postcode or age category were used consent would not be required.
No respondents were concerned about external access to records.
Sites not requiring (n = 10, 38%), reasons for 70% minimal risk, nature of the research, as the rationale for not requiring consent. Deemed minimal risk because either: lack of direct contact with individuals or anonymity of the data being extracted from the health record.
40%, had policy is to not require consent for research involving retrospective chart review; 20%, indicated that their provincial body specifically permitted release of personal information without consent for research purposes if they believe that the researcher will protect the patient’s identity.
Quantitative studies  
 [24], 13 African countries, August 2016 Survey, number and percentage of respondents Life sciences 100 Academic productivity, articles
Over last 5 years:
26, none; 42 (42), 1–3; 8 (8), 3–5; 24 (24), > 5
Career Stage
14 (14), professor; 57 (57), lecturer/researcher; 3 (3), post-doctoral researcher; 26 (26), postgraduate student
Employment setting
60 (60), university; 27 (27), government research; 10 (10), independent research facility; 3 (3), industry
Funding history
27 (27), international grant; 45 (45), national grant; 2 (2), private sector; 6 (6), internal funding; 20 (20), no funding
Low-income countries
Members of the NEPAD-SANBio network
Experience of sharing, promotion/professional criteria, reasons for sharing, reasons for not sharing Experience of sharing
60% happy to share data pre-publication with people that they knew, only 13% when asked to share with people that they did not know.
74% happy to share data post-publication with people they knew compared to 65% with people that they did not know.
Promotion/professional criteria
17% strongly agreed that data sharing was not part of their promotion criteria; 31% agreed.
Reasons for sharing
41% contributes to the advancement of science.
47% brings networking and collaboration opportunities.
Reasons for not sharing
34% other researchers take their results.
29% having their data misinterpreted or misattributed.
23% missing out on opportunities to maximise intellectual property.
14% losing out on opportunities to maximise their publications.
 [25], USA, Spring 1985 Survey, logic regression analysis General sciences 790
Employment setting
3, North American universities; non-science academics in public and private sectors.
790, researchers; 57, non-academic scientists
Experience of sharing; differences by age, discipline, professional focus, and world region; reasons for sharing; reasons for not sharing; research funding Experience of sharing
14% in sociology to 20% in chemistry (overall rate) refused to share raw data.
When requested, and allowed by contractual agreements or employers, most professed to share.
87% of the time participants shared data.
59% claimed their colleagues were not prone to data sharing.
Differences by age, discipline, professional focus and world region
Few differences between fields of science or types of institution.
Reasons for data sharing
The principle of data sharing was a desirable norm.
Reasons for not sharing
Biotechnical fields cite financial (loosing patent rights, future grants or a reduction in publications) reasons.
72% in social sciences feared being pre-empted in the publication of findings.
Research funding
No statistically significant difference between sharing and the amount of past private or public financial support.
 [26], international, 17 October 2013 to 19 March 2014 Survey, regression analysis General science 595 Career Stage
333 (56), researchers and analysts or senior academics; 101 (17), early career academics; 77 (13), students
119 (20), natural sciences; 119 (20), physical sciences; 71 (12), health, social and humanities; 54 (9), education, law and business
Employment setting
446 (75), academics; 95 (16), government; 54 (9), commercial and non-profit agencies
262 (44), USA; 274 (46), ROW
DATAOne Usability and Assessment Working Group
Access, systems, and metadata; experience of sharing; predictors of sharing and norms Access, systems, and metadata
Reported use of metadata was predictive of data reuse.
Experience of sharing
Data reuse and data sharing were not linked, being only moderately correlated (r = 0.25). Self-reported data reuse behaviour, mean, 3.5 (SD 1) (scale of 0 to 5) (n = 589).
Data collection behaviour
~ 50%, strongly favoured collecting data themselves; ~ 45%, from their team; ~ 30%, close colleagues; <10%, not appropriate to ask a librarian or data manager for (suitable) data.
Sharing data compared to self-reported data reuse only moderately correlated; 10%, shared no data; 43%, shared some; 32%, most; 16%, all data.
Predictors of data sharing and norms
Efficacy and efficiency of data reuse predicts data reuse. Norms against data reuse predicts less reuse.
Perception of the importance of data reuse predicts increased data reuse.
Concerns about the trustworthiness of data did not predict less reuse of data.
Remotely sensed data was strongly associated with increased reuse, as was reuse of metadata.
Subjective norms about data reuse predict data reuse behaviour.
Perceived norms, showed a large positive effect for the perceived importance of being able to reuse data.
The non-effect of trust, respondents especially those with experience, are aware of the lack of acceptance of data reuse.
 [27], international, 2010 and 2011 Survey, structured content analysis All disciplines 24 Discipline
4 (17), social sciences; 3 (13), humanities; 2 (8), interdisciplinary; 8 (33), biology; 7 (29), physical sciences, atmospheric sciences, geology, or astronomy
Employment setting
8 (33), government; 7 (29), university; 9 (38), mixed
Bench and physical sciences
Access, systems, and metadata; differences by age, discipline, professional focus and world region; reasons for not sharing Access, systems, and metadata
58.3%, ensuring attribution was the dominant reason for controlling use of data; 33.3%, restricting commercial research; 20.8%, protecting sensitive (non-personal) information.; 12.5%, limiting certain types of research; 8.3%, allowing depositors to decide; 8.3%, ensuring exclusivity; 12.5%, other (limiting to certain groups, protecting security of physical locations); 8.3%, not stated.
Requirement to ‘report back to the repository or researcher regarding the use of data’ appeared in every discipline except humanities.
Differences by age, discipline, professional focus and world region
Discipline: More policy restrictions in biology repositories compared to social science repositories.
Reasons for not sharing
Reasons included avoiding data misuse; prohibition of further unapproved dissemination; prohibition on selling data; intellectual property concerns. Privacy concerns only noted in biology, humanities and social sciences.
 [28], Germany, November to December 2013 Survey, deductive coding and multivariable analysis All disciplines 603 Age, years
37 (average)
277 (46), economics; 235 (39), social sciences and sociology
458 (76), Germany; 145 (24), ROW
Secondary data users and academic researchers
368 (61), male
Experience of sharing; ownership; policy frameworks; promotion/professional criteria Experience of sharing
Sharing process can be divided into six descriptive categories: data donor, research organisation, research community, norms, data infrastructure, and data recipients.
Research data cannot be regarded as knowledge commons.
Policy Framework
Conceptual framework was developed to explain the process of data sharing from the primary researcher’s point of view.
Research policies that better incentivise data sharing are needed to improve the quality of research results and foster scientific progress.
Promotion/professional criteria
Data sharing not a requirement of professional/academic promotion.
 [29], USA, April to May 2014 Survey, odds ratio and Fisher exact test, worst case sensitivity testing General science 135 Discipline
113 (84), scientific; 22 (16), clinical
Clinical and basic science researchers
Access, systems, and metadata; acknowledgement; curation; experience of sharing; reasons for sharing; reasons for not sharing; views on sharing Access, systems, and metadata
72% included some additional materials when they shared data; 47% shared contextualising information (metadata or a description of the experimental protocol).
Sharing directly with other researchers was common, but most did not have experience uploading data to repositories.
Acknowledgement (n = 104), after sharing data
31%, no publication had arisen; 51%, co-author on a publication; 35%, acknowledgement section of the publication; 22%, bibliography of the publication; 15%, not acknowledged.
Curation, time
28%, >10 hours; 29%, no additional time at all; 0%, data already existed in a shareable format.
Experience of sharing
Low levels of data sharing experience; relevance of re-using was higher than their expertise in doing so (same between clinical and scientific).
71%, shared directly with another researcher.
73%, scientific staff had shared data with another researcher
64%, clinical research staff had shared.
1.5-fold increased odds of sharing data in the scientific group (OR = 1.51, 95% CI: 0.577 to 3.955), this result is not statistically significant (p = 0.399).
Reasons for sharing
69%, collaborate with other researchers; 64%, desire to advance science in a particular area; 49%, to assist a known colleague
Reasons for not sharing (n = 20)
Some researchers, particularly clinical staff, do not see sharing data in a repository as relevant to their work.
5 (100%) clinical compared to 2 (13%) of the scientific researchers indicated privacy was a concern.
27% and 24% rated uploading to data repositories as ‘very highly’ or ‘highly’ (%) relevant to their work respectively, but experience levels low.
Scientific staff
Relevance of sharing data in a repository more highly ranked than their expertise in doing so.
More likely to consider sharing data in a repository relevant to their work.
The odds of having HIGH relevance in the scientific group are 5.75 times larger than in the clinical group.
The odds of having HIGH expertise in this task in the scientific group are also greater than in the clinical group.
Clinical staff
Relevance of sharing data in a repository more highly ranked than their expertise in doing so.
61%, never uploaded data to a repository.
Scientific researchers regarded uploading data to a repository for sharing higher than those of the clinical researchers.
Views on sharing
31%, rated the relevance of finding and re-using data as high, 29% rated it as very high.
Odds of ranking data reuse as having high relevance in the scientific group were 4.26 times greater than the clinical group.
In terms of expertise, the odds of having a high expertise ranks in the scientific group are also greater that the clinical staff. Therefore, compared to clinical researchers’ scientific researchers are more likely to consider data reuse highly relevant to their work.
 [30], USA, 5 October 2015 to 30 November 2015 Survey, non-response analysis and ANOVA General health 161 Age, years
4 (3), 25–34; 24 (15), 35–44; 39 (24), 45–54; 63 (39), 55–64; 28 (17), 65+; 3 (1), missing
Career Stage
19 (12), assistant professor; 41 (26), associate professor; 74 (46), full professor; 7 (4), professor emeritus; 4 (3), lecturer/instructor; 2 (1), post-doctoral fellow; 5 (3), researcher; 3 (2), graduate student; 6 (4), other
Discipline, selected
14 (9), nursing; 11 (7), clinical medicine, other; 11 (7), oncology/cancer research
Health scientists from the COS.
54 (34) female
1 (< 1), Bachelor’s degree; 12 (8), Master’s degree; 148 (92), PhD/doctoral degree
Experience of sharing; predictors of sharing and norms; reasons for sharing; reasons for not sharing Experience of sharing
Measures were positively associated with data reuse intention among health scientists.
The result shows that four exogenous latent variables including attitude, social norm, research climate, and organisational support, positively affect researchers’ intention to reuse data.
Predictors of sharing and norms
The effects of social norm (β .0.339; p < 0.01) and attitude (β .0.331; p < 0.01) were relatively higher than other factors.
Perceived usefulness and perceived concern were found to have indirect effects on intention of data reuse through attitude.
A positive social norm towards data reuse positively supports researchers’ data reuse intention.
Reasons for sharing
The perceived usefulness is found to be the strongest indicator that is indirectly influential to reuse intention.
Reasons for not sharing
Negative association with data reuse practice among health scientists.
Legal issues relating to privacy, cultural barriers, and technical challenge were cited. Must comply with laws, regulations, and protocols prescribing how to securely manage information. Legal uncertainty.
Managing information when sharing clinical trials’ research data.
Scientific competition and lack of incentives.
The quality of secondary data use still remains to be addressed.
 [31], international, July 2012 to September Survey, characteristics of survey respondents:
non-respondents, we used χ2 tests for categorical variables
and the Kruskal-Wallis test for continuous variables (trial
enrolment), using two-sided tests with a type I error level of
General health 317 Academic productivity, articles
Last 3 years:
71 (22), 1–10; 117 (37), 11–25; 129 (41), ≥ 25
126 (40), ≤ 49; 159 (50), 50–64; 31 (10), ≥ 65
Career stage
Completed training 10–24 years ago; two thirds of these had reached; the rank of full professor.
Employment setting
278 (88), medical school or hospital; 19 (6), government; 4 (1), private industry; 16 (5), other
Funding history
46% had been awarded 4 or more grants; 52% had received > $1million in direct research support
Training in the USA or Canada
73 (23), female
Experience of sharing; reasons for sharing; reasons for not sharing; views on sharing Experience of sharing
74% sharing de-identified data through data repositories should be required
72% believed investigators should be required to share de-identified data in response to individual requests.
18% were required by trial funder to deposit the trial data in a repository; of which 57% had done so.
47% had received an individual request to share their clinical trial data; of these, 77% had granted and 38% had denied at least one request.
Reasons for sharing data
88% of respondents supported data sharing; 78% promoting open science; 42% academic benefits and recognition.
Reasons for not sharing data
65% concerned about (in)appropriate data use; 41% investigator and funder interests; 29% protection of research subjects
Views on sharing
Right of first use of clinical trial data
2% data should be made available to investigators external to the study team immediately on trial completion; 34% within 1 to 2 years of trial completion; 31% within 3 to 5 or more years of trial completion; 33% no time limit and that the right of first use should extend until the main findings are accepted for publication.
 [32], international, July 2012 to early September Survey, secondary analysis General health 317 Academic productivity, articles
Last 3 years:
71(22), 1 to 10; 117 (37), 11 to 25; 129 (41), > 25
Age, years
126 (40), ≤ 49; 159 (50), 50 to 64; 31 (10), ≥ 65
Funding history
120 (38)—government; 152 (48)—mixed
167 (53), US or Canada; 113 (36), Western Europe; 37 (11), other
243 (77), male
Experience of sharing; reasons for sharing; reasons for not sharing; trust Experience of sharing
No significant differences in support for data sharing in principle between respondents by trialists’ academic productivity and geographic location, trial funding source and size, and the journal in which it was published. Rates of support between 81% and 100%.
No significant differences in reasons for withholding data between respondents categorised trialists’ academic productivity and geographic location, trial funding source and size, and the journal in which it was published.
• Academically productive respondents (>25 articles published over the past 3 years) responded affirmatively least frequently (24%), as compared to respondents who published 1 to 10 articles (41%), and 11 to 25 articles (40%).
• Respondents who received industry funding also responded affirmatively least frequently (24%), as compared to respondents who received government funding (42%), and non-profit funding (44%).
Reasons for sharing
78%, promotion of open science.
No significant differences in reasons for sharing data between respondents by trialists’ academic productivity and geographic location, trial funding source and size, and the journal in which it was published.
An exception to this was, has or would share data from their published study in order to receive academic benefits or recognition based on geographic location (p < 0.001). Western Europe responded affirmatively 58% compared to 31% in the US or Canada, and 43% ROW.
Reasons for not sharing
Rates of overall concern ranged between 67 and 84%.
No significant differences in overall concern about sharing data through repositories between respondents by trialists’ academic productivity and geographic location, trial funding source and size, and the journal in which it was published.
74% identified ensuring appropriate data use (65%) as a reason for withholding data from their published study. Concerns included data not appropriate for the requested purpose, and the potential for misinterpretation and misleading secondary analyses.
Prevention of misleading secondary analyses and misinterpretation of data.
Mistrust of the data requester’s intent.
 [33], international, 27 October 2009 to 31July 2010 Survey, not described General sciences 1329 Age, years
453 (38), 20–39; 359 (30), 40–50; 393 (33), > 50; mean: 44.8
Career Stage
137 (10.5), assistant professor; 187 (14.3), associate professor; 291 (22.2), professor; 276 (21.1), researcher; 177 (13.5), student
475 (36.1), environmental sciences and ecology; 204 (15.5), social sciences; 181 (13.7), biology; 158 (12.0), physical; 118 (9.0), sciences; computer science/engineering; 98 (7.4), other; 52 (3.9), atmospheric science; 31 (2.4), medicine
Employment setting
1058 (80.5), academic; 167 (12.7), government; 34 (2.6), commercial; 35 (2.7), non-profit; 21 (1.6), other
930 (73), N. America; 188 (15), Europe; 94 (7.3) Asia/Oceania
Two thirds, male
Access, systems, and metadata; acknowledgement; curation; differences by age, discipline, professional focus and world region; experience of sharing; reasons for sharing; reasons for not sharing; views on sharing NB: see also [34] for follow up results
Access, systems, and metadata
43% have the sole responsibility for all their datasets; 37% have for some of their datasets, and 21% do not.
56% did not use any metadata standard; ~ 22% used their own metadata standard.
Central repository with all data and no restrictions: 41% to 52% respondents in most disciplines agree with this statement, with medicine (17%) and social sciences (32%) even less likely to agree.
92%, important that their data are cited when used by other researchers; 86%, appropriate to create new datasets from shared data; 52%, fair to disseminate results based (at least in part) on data without the data provider’s approval.
69% indicated that paying for the costs of data does not include the right to use that data or that they do not believe that data users should be required to pay data creators.
59.8% (agree strongly or somewhat) they are satisfied with cataloguing or describing their data.
45% and 73% are satisfied with the process of storing data beyond the life of the project compared to short term, respectively.
35% of the respondents stated that they are dissatisfied with the long-term storage process.
46%, do not make their data electronically available to others.
<6% of scientists who make ‘all’ of their data available via some mechanism, tends to re-enforce the lack of data sharing within the communities surveyed.
Differences by age, discipline, professional focus and world region
Not all scientists share data equally or have the same perceptions of data sharing and reuse.
40–50 years: less likely to agree, than other age groups, that their organisations have processes for managing data sharing during and after the project.
Younger: less likely to agree to share all data without restrictions, but more likely to agree to share some as long as restrictions are in place.
Younger more likely to think lack of access to data is a major impediment to progress in science and has restricted their ability to answer scientific questions.
Majority shared data with others, but respondents from medical fields and social sciences were less likely to make their data electronically available.
Professional focus
74% and 79% of research-intensive respondents and teaching-intensive respondents showed willingness to place some data into a central data repository with no restrictions, and willingness to share across broad group of researchers who use data in different ways, 77% and 83% respectively.
World region
Non-N. America/non-European’s more likely to think that lack of access to data is a major impediment to progress in science (Other = 79%, Europe =72%, and N. America =64%) and has restricted their ability to answer scientific questions (Other = 63%, Europe = 55%, and N. America 47%).
‘Other’ parts of the world are most willing to place all of their data into a central data repository with no restrictions (53%); more likely to make their data available if they could place conditions on access (73%); and the most satisfied with their ability to integrate data from disparate sources to address research questions (58%).
Experience of sharing
Nearly one third of the respondents chose not to answer whether they make their data available to others.
Reasons for sharing
~ 60% agree that lack of access to data generated by other researchers or institutions is a major impediment to progress in science.
Reasons for not sharing
Reasons deeply rooted in the practices and culture of the research process as well as the researchers themselves.
53.6%, insufficient time.
39.6%, lack of funding.
24.1%, do not have rights to make public.
264 (23.5%), no place to store.
19.8%, lack of standards.
17.4%, sponsor does not require.
15.0%, do not need.
14.6%, other.
14.4%, should not be available.
75%, data may be misinterpreted due to complexity of the data across their research field.
71% data may be misinterpreted due to poor quality of data across their research field.
74%, data may be used in other ways than intended across their research field.
67% agreed that lack of access to data generated by other researchers or institutions is a major impediment to progress in science.
50% reported that lack of access to data generated by other researcher or institution has restricted their ability to answer scientific questions.
Views on sharing
43%, organisation or project had a formal process for managing data during the life of the project.
47%, disagreed that their organisation or project has a formal. established process for storing data beyond the life of the project.
36%, agree that others can access their data easily.
14%, data ‘Should not be Available’.
 [34], international, October 2009 to July 2010 and October 2013 to March 2014 Survey, ANOVA, chi-square tests General sciences 1015 Age, years
380 (40.9), 20–39; 196 (21.1), 40–49; 352 (37.9), 50+
Discipline, selected
70 (7.1), biology; 12 (1.2), humanities; 37 (3.8) medicine/health science; 47 (4.8), physical sciences; 21 (2.1), psychology; 44 (4.5) social sciences
592 (61.0), N. America; 91 (9.4), Asia; 141 (14.5), Europe; 72 (7.4), Africa; 55 (5.7), S. America; 20 (2.1%), ANZ
Access, systems, and metadata; acknowledgement; differences by age, discipline, professional focus, and world region; reasons for not sharing; views on sharing Note: Change between surveys reported: see also [33]
Access, systems, and metadata
Younger respondents had more restrictions on access to their data and agreed significantly less than older respondents that their data is easy to access.
An ongoing issue, and one likely to accompany the gradual institutionalization of emerging scientific practices over time.
Differences by age, discipline, professional focus, and world region
Younger respondents more favourable towards data sharing and reuse yet make less of their data available than older respondents.
Younger prioritise control over and credit for their work more than older researchers.
Those ≥ 50 years claim to share significantly more than both the 40–49 years and 22–39 years age groups.
Medicine/health sciences and others who work with human subjects were significantly less willing to share their data than other disciplines.
No significant differences across subject disciplines when it came to perceived risks associated with data sharing.
World region
Asia: more strongly about data access as an important part of their own scientific pursuits; however, agreed more strongly than those from other geographic regions that permission was needed to access data.
N. American: more wary of possible misuse of shared data. Were also less likely than Asian respondents to agree that conditions for use of their data were fair.
Views on sharing
Increased acceptance of and willingness to engage in data sharing.
More agreement and willingness among scientists to share at least some or all of their data across broader groups with no limitations.
Education and medicine/health science were more inclined to agree that they do not have the right to make their data available in the first place.
Reasons for not sharing
Increased perceived risk associated with data sharing.
Misuse of shared data.
Education, medicine/health science, and psychology more inclined than others to agree that their data should not be available for others to use in the first place.
Mixed methods
 [35], USA, date not reported. Survey, qualitative and qualitative analysis Mental health 8 Discipline
3 (38), clinician; 3 (38), therapist; 1 (13), treatment coordinator; 1 (13), PhD nursing practice
Access, systems, and metadata; consent Access, systems, and metadata
87.5%, patients should have more choices for controlling access data.
75%, care could be negatively affected when patients restrict access to relevant clinical information.
25%, patient choice should expand.
25%, educating patients and providers about the positive and negative aspects of granular control.
Broad and does not reflect patient choices.
Time required to implement consent and educate patients is a potential barrier to implementing a granular consent process.
37.5%, ‘time’ as the most significant barrier in implementing a system that permits more granular control of protected health information.
  1. ANZ Australia and New Zealand, AIDS acquired immune deficiency syndrome, CI confidence interval, COS Community of Science Scholars, GP general practitioner, HC health care professionals, HI health information, HIV human immunodeficiency virus, MS multiple sclerosis, NEPAD-SANBio New Partnership for Africa’s Development—Southern Network for the Biosciences, NIH National Institutes of Health, N. north, OR odds ratio, PHI protected health information, ROW rest of world, SD standard deviation, S. south, TB tuberculosis, USA United States of America