2.3 Privacy and Confidentiality Issues

Expected time: 30 minutes

Privacy and confidentiality relates to patient data protection and to data acquisition and management in public health surveillance. Privacy and confidentiality laws vary by country. It is important to know the laws in the country in which you work. There could be standards on how to collect, use, disseminate and protect information. All surveillance personnel involved with data collection, management and dissemination may need to sign confidentiality agreements.

The three components of patient data protection are privacy, confidentiality and security.

Privacy

Privacy is an individual’s right to control the collection, use and disclosure of their identifiable health information. This relates to both the parents and the fetus or neonate.

Possible responses:

  • Each fetus or neonate could be assigned a unique identifier, such as a numeric code, to protect their privacy

Confidentiality

Confidentiality is an individual’s right to have their identifiable health information kept secure. These data must be accessible only to health-care providers and those directly involved in the surveillance programme.

Possible responses:

  • Remove all identifiers
  • Lock and secure files
  • Password protect files
  • Require signed confidentiality agreements for surveillance workers

Security

Security refers to the safeguards and practices designed to protect data systems against unwarranted disclosure, modification or destruction. All individuals have the right to have their health data secured.

Photographs

Photo_01 There can be privacy, confidentiality and security issues for photographs when used as part of a surveillance programme for congenital anomalies. Photographs can serve as diagnostic tools, like other tools available for diagnosis (e.g. echocardiogram). Photographs of the congenital anomaly are taken to increase the quality of information transmitted to a surveillance programme. Photographs should always be transferred in encrypted file and stored securely. When photographs of congenital anomalies are taken, countries may require that parents sign an authorization form. Requirements for authorization forms may be different in different countries. For recommendations on how to take photographs to be used for the surveillance programme, please refer to Appendix J in WHO/CDC/ICBDSR Birth defects surveillance: a manual for programme managers (4).

Group Discussion 2.1

You are preparing a protocol for a congenital anomalies surveillance programme in your country.

Possible responses:

  • What type of data will be collected? Why?
  • How will the data be collected? On paper, electronically or both?
  • Who will have access to the data?
  • How will the data be used?
  • Where will the information be stored and secured?
  • How long does the law require it to be archived?

Possible responses:

  • Laws available in a country for protection of medical data
  • Country and local laws for confidentiality
  • Laws on public health surveillance
References
  1. World Health Organization. Congenital anomalies. Fact sheet No 370. October 2012 (http://www.who.int/mediacentre/factsheets/fs370/en/index.htmlExternal , accessed 29 April 2015).
  2. Resolution WHA63.17. Birth defects. In: Sixty-third World Health Assembly, Geneva,17–21 May 2010. Geneva: World Health Organization; 2010 (http://apps.who.int/gb/ebwha/pdf_files/WHA63/A63_R17-en.pdfExternal, accessed 29 April 2015).
  3. International statistical classification of diseases and related health problems, 10th revision. Geneva: World Health organization; 2015 (http://apps.who.int/classifications/icd10/browse/2015/enExternal , accessed 24 February 2015).
  4. World Health Organization, National Center on Birth Defects and Developmental Disabilities from the United States Centers for Disease Control and Prevention (CDC), International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR). Birth defects surveillance: a manual for programme managers. Geneva: World Health Organization; 2014 (https://www.cdc.gov/ncbddd/birthdefectscount/documents/bd-surveillance-manual.pdf, accessed 10 February 2015).
  5. World Health Organization, National Center on Birth Defects and Developmental Disabilities from the United States Centers for Disease Control and Prevention(CDC), International Clearinghouse for Birth Defects Surveillance and Research (ICBDSR). Birth defects surveillance: atlas of selected congenital anomalies. Geneva: World Health Organization; 2014 (http://apps.who.int/iris/bitstream/10665/127941/1/9789241564762_eng.pdf?ua=1Cdc-pdfExternal , accessed 10 February 2015).
  6. CDC Foundation. What is public health? (http://www.cdcfoundation.org/content/what-public-healthExternal , accessed 24 February 2015).