Assessing data protection and governance in health information systems
A novel methodology of Privacy and Ethics Impact and Performance Assessment (Peipa)
Bibliographic Data
| ID | 21514686 |
|---|---|
| Authors | Concetta Tania Di Iorio (0000-0003-3105-3423, Serco (United Kingdom), corresponding author), Fabrizio Carinci (0000-0002-7524-227X, University of Bologna), Jillian Oderkirk (Organisation de Coopération et de Développement Economiques), David Smith (0000-0002-8202-8108), David M Smith (0000-0002-8199-7169), Manuela Siano, Dorotea Alessandra de Marco, Simon De Lusignan (0000-0002-8553-2641, University of Surrey), Paivi Hamalainen (Finnish Institute for Health and Welfare), Massimo Massi Benedetti |
| Year | 2021 |
| Volume | 47 |
| Issue | 12 |
| Pages | e23-e23 |
| Publication date | 2021-12-01 |
| Open Access | No |
| Type | ARTICLE |
| Venue | Journal of Medical Ethics (JOURNAL) |
| Journal identifiers | ISSN: 0306-6800 • E-ISSN: 1473-4257 |
| Publisher | BMJ (PUBLISHER • GB) |
| DOI | 10.1136/medethics-2019-105948 |
| PMID | 32220868 |
| OpenAlex | W3013656312 |
| Language | EN |
| Citations received | 4 |
| References cited | 12 |
BACKGROUND: Data processing of health research databases often requires a Data Protection Impact Assessment to evaluate the severity of the risk and the appropriateness of measures taken to comply with the European Union (EU) General Data Protection Regulation (GDPR). We aimed to define and apply a comprehensive method for the evaluation of privacy, data governance and ethics among research networks involved in the EU Project Bridge Health. METHODS: Computerised survey among associated partners of main EU Consortia, using a targeted instrument designed by the principal investigator and progressively refined in collaboration with an international advisory panel. Descriptive measures using the percentage of adoption of privacy, data governance and ethical principles as main endpoints were used for the analysis and interpretation of the results. RESULTS: A total of 15 centres provided relevant information on the processing of sensitive data from 10 European countries. Major areas of concern were noted for: data linkage (median, range of adoption: 45%, 30%-80%), access and accuracy of personal data (50%, 0%-100%) and anonymisation procedures (56%, 11%-100%). A high variability was noted in the application of privacy principles. CONCLUSIONS: A comprehensive methodology of Privacy and Ethics Impact and Performance Assessment was successfully applied at international level. The method can help implementing the GDPR and expanding the scope of Data Protection Impact Assessment, so that the public benefit of the secondary use of health data could be well balanced with the respect of personal privacy
Business · Computer security · Corporate governance · Data anonymization · Data governance · Data Protection Act 1998 · Data quality · Environmental health · European union · General Data Protection Regulation · Information privacy · Personally identifiable information · Privacy law · Privacy policy · Record linkage · Computer Science · COVID-19 Digital Contact Tracing · Ethics in Clinical Research · Medicine · Privacy, Security, and Data Protection
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| Citations per year | 0.8 |
|---|---|
| Citation span | 2021 - 2026 (6) |
| Highly cited | No |