Perceptions and Awareness of Healthcare Professionals Regarding FAIR Data Principles and Health Data Sharing in Saudi Arabia
Abstract
1. Introduction
- (1)
- Providing first-time empirical evidence on Saudi healthcare professionals’ FAIR perceptions,
- (2)
- Identifying context-specific institutional barriers to FAIR adoption, and
- (3)
- Offering actionable recommendations for data governance policy in emerging healthcare systems.
2. Background
2.1. The Implantation of FAIR Data Principles in the Health Context
2.2. Institutional Perspective on FAIR Principles
3. Methods
3.1. Ethical Approval
3.2. Study Design
3.2.1. Content Validity Assessment
- -
- Expert 1: Professor of Health Informatics, Department of Health Information Management (15 years experience)
- -
- Expert 2: National Data Officer, Saudi Ministry of Health, Digital Transformation Division (12 years experience)
- -
- Expert 3: Chief Information Officer, Major Teaching Hospital, Riyadh (14 years experience)
3.2.2. Pilot Testing
3.2.3. Internal Consistency—Cronbach’s Alpha
- -
- FAIR Familiarity (2 items): α = 0.88 (95% CI: 0.82–0.93)
- -
- Implementation Efforts (4 items): α = 0.91 (95% CI: 0.87–0.95)
- -
- Expected Opportunities (3 items): α = 0.87 (95% CI: 0.82–0.91)
- -
- Expected Challenges (3 items): α = 0.89 (95% CI: 0.85–0.93)
3.2.4. Construct Validity
3.3. Participant Recruitment
3.4. Descriptive and Statistical Analysis
3.4.1. Quantitative Analysis
3.4.2. Inferential Statistical Tests
- Chi-Square Tests of Independence: Chi-square tests examined associations between demographic variables (age, gender, education level, institutional type, years of experience) and primary outcomes (awareness of FAIR principles, implementation efforts, perceived barriers).
- Cross-Tabulation Analysis: Cross-tabulation with chi-square statistics was performed to identify patterns in how different professional experience levels and institutional types related to perceived barriers and opportunities for FAIR implementation.
- Statistical Significance: Tests were conducted at the α = 0.05 significance level. p-values and chi-square statistics are reported in results tables.
3.5. Qualitative Coding and Inter-Coder Reliability Assessment
3.5.1. Coding Procedure and Software
3.5.2. Inter-Coder Reliability Assessment—Cohen’s Kappa
- -
- Theme 1 (Awareness): κ = 0.84 (95% CI: 0.78–0.90)
- -
- Theme 2 (Perceived Benefits): κ = 0.79 (95% CI: 0.71–0.87)
- -
- Theme 3 (Challenges): κ = 0.85 (95% CI: 0.79–0.91)
- -
- Overall Inter-Coder Agreement: κ = 0.82 (95% CI: 0.77–0.87)
3.5.3. Data Saturation Assessment
- -
- FGD1: 47 codes
- -
- FGD2: 44 repeated codes + 3 new codes (6%)
- -
- FGD3: 0 new codes (0%) → Saturation achieved
- Triangulation: Integration of quantitative survey data (n = 153) with qualitative focus group data provided multiple perspectives on the same phenomena.
- Member Checking: Preliminary findings reviewed with two focus group participants to verify accuracy of interpretation.
- Detailed Audit Trail: Comprehensive documentation maintained throughout analysis of methodological decisions, coding revisions, and analytical reasoning.
- Rich Thick Description: Detailed contextual descriptions and illustrative quotations provided for each theme.
4. Results
4.1. Part 1: Questionnaire Survey
4.1.1. Demographic Characteristics
4.1.2. Awareness of FAIR Data Principles Among Participants
4.1.3. Opportunities and Challenges in Applying FAIR Data Management Principles in the Health Sector
4.1.4. Additional Statistical Analyses: Logistic Regression Results
Multicollinearity Assessment—Variance Inflation Factor (VIF)
Logistic Regression Model 1: Predictors of FAIR Awareness
- “Have heard of term ‘FAIR data’” (Yes = 1, No = 0)
- Overall Model: χ2(10) = 22.34, p = 0.013 *
- Hosmer-Lemeshow: χ2(8) = 7.24, p = 0.512
- Nagelkerke R2: 0.179
- Cox & Snell R2: 0.136
- Postgraduate education and age (50–59 years) significantly predict FAIR awareness.
- Hosmer-Lemeshow (p = 0.512) indicates good model fit.
Logistic Regression Model 2: Predictors of FAIR Implementation
- “Have applied FAIR principles to health data” (Yes = 1, No = 0)
- Overall Model: χ2(10) = 18.97, p = 0.040 *
- Hosmer-Lemeshow: χ2(8) = 6.18, p = 0.627
- Nagelkerke R2: 0.249
- Cox & Snell R2: 0.114
- Institution type (research centers) is the strongest predictor of FAIR implementation (OR = 6.33).
- Model shows good calibration (Hosmer-Lemeshow p = 0.627).
Consistency Between Chi-Square and Regression Methods
- Chi-square: χ2 = 9.87, p = 0.020
- Regression: OR = 6.33, p = 0.006
- Chi-square: χ2 = 12.45, p = 0.014
- Regression (50–59): OR = 6.53, p = 0.021
4.2. Part 2: Focus Group Discussions
“We are aware of the theoretical part, but practically, for example, the concept of data sharing is nowhere, and it is difficult.”(P5)
“Currently there are specific policies and procedures for managing data. These policies relate to how data is extracted, organised, and stored properly.”(P2)
“Data is shared between internal departments. But there are clear agreements to regulate this process.”(P1)
“Regarding data management, we’ve developed an in-house software system in collaboration with the IT department.”(P5)
- -
- Data are assets, and the return on such investments should be maximised.
“This requires thinking of data as an asset that must be invested in.”(P3)
“It is solo contributions, or is it per research or, let’s say, per individual investigator/principal investigator. Unfortunately!”(P3)
“There should be a clear direction towards governance and strengthening the data infrastructure.”(P4)
- -
- The derivation of valuable insights should be accelerated.
“Matching this with molecular data enables us to achieve valuable insights.”(P5)
“This approach accelerates research timelines, reducing the time from five years to one year or less.”(P5)
- -
- Lack of a unified data governance framework
“There is no unified governance at the data level, it is difficult to collect and analyze this data properly.”(P4)
- -
- Limited training and technical skills
“There are significant gaps in data and the technical skills related to it.”(P3)
- -
- Organisational culture
“This leads to confusion in the system. For example, there is overlap between departments. Some departments claim to own and control the data.”(P4)
5. Discussion
6. Limitations and Future Research
6.1. Sampling Bias and Generalizability
- -
- Postgraduate education: 73.2% (sample) vs. 30–40% (estimated workforce)
- -
- Research center employment: 25.5% (sample) vs. 8–12% (estimated workforce)
- -
- Public hospital employment: 46.4% (sample) vs. 60–65% (estimated workforce)
- -
- Private hospital employment: 23.5% (sample) vs. 20–25% (estimated workforce)
6.2. Professional Representation Gaps
6.3. Explicit Generalizability Scope
- -
- Senior data governance professionals;
- -
- Research-oriented hospitals;
- -
- Institutions engaged in digital transformation;
- -
- Leaders responsible for data governance;
- -
- Centralized healthcare systems.
- -
- Entire Saudi healthcare workforce;
- -
- Regional/small healthcare centers;
- -
- Frontline staff without data roles;
- -
- Early-career professionals;
- -
- Under-resourced primary health centers;
- -
- Non-urban settings.
6.4. Additional Study Limitations
6.5. Future Research Recommendations
7. Conclusions
- Establish a National Data Governance Commission with binding FAIR mandates.
- Embed FAIR compliance within national accreditation standards.
- Integrate data governance curricula into all health professions education programs.
- Create financial and institutional incentives to encourage FAIR implementation.
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
Abbreviation
| FAIR | Findable, Accessible, Interoperable, Reusable |
| TAM | Technology Acceptance Model |
| CVI | Content Validity Index |
| SPSS | Statistical Package for the Social Sciences |
| OSF | Open Science Framework |
| GA4GH | Global Alliance for Genomics and Health |
| EOSC | European Open Science Cloud |
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| Characteristics | Responses (N) | Percentage | |
|---|---|---|---|
| Age | Under 30 years | 17 | 11.1% |
| 30 to 39 years | 52 | 34.0% | |
| 40 to 49 years | 47 | 30.7% | |
| 50 to 59 years | 30 | 19.6% | |
| 60 years or above | 7 | 4.6% | |
| Gender | Male | 82 | 53.6% |
| Female | 71 | 46.4% | |
| Educational Level | Undergraduate | 39 | 25.5% |
| Postgraduate | 112 | 73.2% | |
| Other | 2 | 1.3 | |
| Type of health institution | Public hospital | 71 | 46.4% |
| Private hospital | 36 | 23.5% | |
| Research centre | 39 | 25.5% | |
| Other | 7 | 4.6% | |
| Years of Experience | Less than one year | 12 | 7.8% |
| 1 to 5 years | 32 | 20.9% | |
| 6 to 10 years | 55 | 35.9% | |
| 11 to 20 years | 35 | 22.9% | |
| More than 20 years | 19 | 12.4% | |
| Questionnaire Items | Yes | No | ||||||
|---|---|---|---|---|---|---|---|---|
| N | % | N | % | |||||
| Have you heard of the term ‘FAIR data’? | 72 | 47.10% | 81 | 52.90% | ||||
| I have previously used the FAIR guiding principles to manage health data. | 24 | 15.70% | 129 | 84.30% | ||||
| (A) Chi-Square Tests for Association Between Demographic Characteristics and FAIR Awareness/Implementation. | ||||||||
| Variable Comparison | N | χ2 | df | p-Value | Interpretation | |||
| Age vs. FAIR Awareness | 153 | 12.45 | 4 | 0.014 * | Significant; older professionals (40–59 yrs) showed higher awareness | |||
| Education Level vs. FAIR Awareness | 153 | 8.32 | 2 | 0.016 * | Postgraduate-educated professionals more likely to report awareness | |||
| Institutional Type vs. FAIR Implementation | 153 | 9.87 | 3 | 0.020 * | Research centers showed higher implementation than hospitals | |||
| Years of Experience vs. FAIR Application | 153 | 15.62 | 4 | 0.004 ** | Highly significant; 6–10 year professionals showed highest engagement | |||
| Gender vs. Perceived Barriers | 153 | 3.21 | 1 | 0.073 ns | No significant gender difference in perceived barriers | |||
| (B) Quality Assurance Indicators: Reliability and Validity Metrics for Study Components. | ||||||||
| Quality Dimension | Metric | Value | Threshold/Interpretation | Status | ||||
| QUANTITATIVE COMPONENT | ||||||||
| Internal Consistency | Cronbach’s α (FAIR Familiarity) | 0.88 | >0.70 (acceptable) | Acceptable | ||||
| Cronbach’s α (Implementation) | 0.91 | >0.70 (good) | Good | |||||
| Cronbach’s α (Opportunities) | 0.87 | >0.70 (good) | Good | |||||
| Cronbach’s α (Challenges) | 0.89 | >0.70 (good) | Good | |||||
| Content Validity | Content Validity Index (CVI) | 0.92 | >0.78 (excellent) | Excellent | ||||
| Expert Panel | Number of experts; years experience | 3 experts; 10+ years each | Recommended: 3+ experts | Met | ||||
| Pilot Testing | Sample size; feedback incorporated | 5 professionals; yes | Recommended: 5–10 | Met | ||||
| QUALITATIVE COMPONENT | ||||||||
| Inter-Coder Reliability | Cohen’s κ (Theme 1: Awareness) | 0.84 | >0.80 (substantial) | Substantial | ||||
| Cohen’s κ (Theme 2: Benefits) | 0.79 | >0.70 (substantial) | Substantial | |||||
| Cohen’s κ (Theme 3: Challenges) | 0.85 | >0.80 (substantial) | Substantial | |||||
| Overall Cohen’s κ | 0.82 | >0.80 (substantial) | Substantial | |||||
| Coding Procedure | Independent coders; % transcripts | 2 coders; 20% | Recommended: 2+ coders; 10–30% | Met | ||||
| Data Saturation | Session where achieved | Session 3 of 3 | Achieved when no new themes | Achieved | ||||
| Member Checking | Participants; feedback received | 2 participants | Recommended: 1–2 | Conducted | ||||
| Triangulation | Methods integrated | Survey + Focus Groups | Recommended: 2+ methods | Conducted | ||||
| Questionnaire Items | Strongly Agree | Agree | Neutral | Disagree | Strongly Disagree | |
|---|---|---|---|---|---|---|
| % | % | % | % | % | ||
| Expectations/perceptions | Considering data as assets | 32.00% | 51.60% | 12.40% | 3.90% | 0.00% |
| Increased opportunities for cooperation and participation within and outside organisations | 40.50% | 50.30% | 7.80% | 0.70% | 0.70% | |
| Supporting organisational data infrastructures | 35.30% | 49.00% | 13.10% | 1.30% | 1.30% | |
| Challenges | Lack of training | 28.80% | 56.90% | 11.80% | 2.60% | 0.00% |
| Lack of technical tools | 50.30% | 39.20% | 9.20% | 1.30% | 0.00% | |
| Organisational culture | 26.20% | 50.80% | 20.00% | 1.50% | 1.50% | |
| Predictor Variable | VIF Value |
|---|---|
| Age Group | 1.24 |
| Education Level | 1.18 |
| Institutional Type | 1.31 |
| Years of Experience | 1.42 |
| Gender | 1.09 |
| Predictor Variable | B | SE | Wald | p | OR | 95% CI |
|---|---|---|---|---|---|---|
| (Constant) | −2.847 | 0.956 | 8.87 | 0.003 | — | — |
| Postgraduate Education | 1.842 | 0.617 | 8.90 | 0.003 ** | 6.31 | 1.89–21.1 |
| Age 50–59 (vs. <30) | 1.876 | 0.814 | 5.31 | 0.021 * | 6.53 | 1.32–32.3 |
| Age 40–49 (vs. <30) | 1.243 | 0.698 | 3.17 | 0.075 | 3.46 | 0.88–13.6 |
| Research Centre | 1.127 | 0.587 | 3.68 | 0.055 | 3.09 | 0.98–9.76 |
| Gender (Female) | 0.315 | 0.487 | 0.42 | 0.518 | 1.37 | 0.53–3.56 |
| Private Hospital | 0.456 | 0.589 | 0.60 | 0.439 | 1.58 | 0.50–4.99 |
| Predictor Variable | B | SE | Wald | p | OR | 95% CI |
| (Constant) | −3.152 | 1.041 | 9.16 | 0.002 | — | — |
| Research Centre | 1.845 | 0.671 | 7.55 | 0.006 ** | 6.33 | 1.69–23.7 |
| Age 50–59 (vs. <30) | 1.891 | 0.943 | 4.02 | 0.045 * | 6.63 | 1.04–42.3 |
| Years of Experience | 0.068 | 0.035 | 3.81 | 0.051 | 1.07 | 1.00–1.14 |
| Postgraduate Education | 1.327 | 0.712 | 3.48 | 0.062 | 3.77 | 0.94–15.1 |
| Private Hospital | 0.521 | 0.725 | 0.52 | 0.473 | 1.68 | 0.41–6.94 |
| Gender (Female) | 0.289 | 0.578 | 0.25 | 0.617 | 1.33 | 0.43–4.13 |
| Health Institutions | Participant ID | Role(s) | Background(s) | Years of Experience |
|---|---|---|---|---|
| Public hospital | P1 | Head of the micro research unit | Cancer genetics | More than 20 years |
| P2 | Medical informatics specialist | Health informatics | More than 10 years | |
| Private hospital | P3 | Medical researcher | Genetic engineering and bioinformatics | More than 20 years |
| P4 | Lead—population health research | Genomics, research, data registry, public health bioinformatics | More than 20 years | |
| Research Centre | P5 | Head of the research centre | Genomic medicine and biobank unit | More than 20 years |
| Challenges/Obstacles | Potential Outcomes of Implementation |
| 1- Limited awareness. 2- Lack of training. 3- Inadequate technical and financial support. 4- Concerns regarding legal and ethical implications. 5- Lack of unified data governance framework. | 1- Accelerate investment in the data infrastructures. 2- Lead to more efficient clinical outcomes and more informed decision-making for increasingly effective treatment. 3- Accelerate drug discovery, development of innovative medicines; enable collaboration. 4- Improve data interoperability and increase efficiency in data management. 5- Advance smart health technologies and accelerate the adoption of digital twin technology. 6- Promote the use of advanced AI tools to analyse health data. |
| Actions needed to catalyse implementation in Saudi Arabia | |
| 1- Launch educational initiatives in data management practices. 2- Equip healthcare professionals with the skills necessary to adopt FAIR principles 3- Establish national standardised guidelines and regulations for health data sharing in alignment with FAIR principles. 4- Address the complexity of data ownership. 5- Ensure the privacy of patients and the confidentiality of their information. 6- Secure financial support and allocate adequate resources. 7- Encourage a culture of data sharing and open science practices. | |
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Share and Cite
Alharbi, E.A.; Alrefaei, A.F. Perceptions and Awareness of Healthcare Professionals Regarding FAIR Data Principles and Health Data Sharing in Saudi Arabia. Healthcare 2025, 13, 3183. https://doi.org/10.3390/healthcare13243183
Alharbi EA, Alrefaei AF. Perceptions and Awareness of Healthcare Professionals Regarding FAIR Data Principles and Health Data Sharing in Saudi Arabia. Healthcare. 2025; 13(24):3183. https://doi.org/10.3390/healthcare13243183
Chicago/Turabian StyleAlharbi, Ebtisam Ali, and Abdulmajeed Fahad Alrefaei. 2025. "Perceptions and Awareness of Healthcare Professionals Regarding FAIR Data Principles and Health Data Sharing in Saudi Arabia" Healthcare 13, no. 24: 3183. https://doi.org/10.3390/healthcare13243183
APA StyleAlharbi, E. A., & Alrefaei, A. F. (2025). Perceptions and Awareness of Healthcare Professionals Regarding FAIR Data Principles and Health Data Sharing in Saudi Arabia. Healthcare, 13(24), 3183. https://doi.org/10.3390/healthcare13243183

