Developing and Using Individual Identifiers for the Provision of Health Services including HIV

Proceedings from a Workshop, 24–26 February 2009

Montreux, Switzerland

Contents

EXECUTIVE SUMMARY...... 3 1.0 INTRODUCTION...... 6 2.0 INDIVIDUAL IDENTIFIERS FOR THE PROVISION OF HEALTH SERVICES INCLUDING HIV ...... 7 3.0 METHODS...... 8 4.0 THE USE AND DEVELOPMENT OF UNIQUE IDENTIFIERS FOR HIV SERVICES ....9 5.0 COUNTRY EXPERIENCES WITH DEVELOPING UNIQUE IDENTIFIERS ...... 9 6.0 KEY POINTS IN THE DEVELOPMENT AND IMPLEMENTATION OF UNIQUE...... 18 7.0 CONSTRUCTING AND IMPLEMENTING UNIQUE IDENTIFIERS FOR INDIVIDUAL HEALTH RECORDS ...... 20 8.0 CONCLUSION...... 25 APPENDIX 1 PARTICIPANTS UNAIDS/PEPFAR HEALTH SERVICES IDENTIFIER WORKSHOP...... 27 APPENDIX 2 ANNOTATED BIBLIOGRAPHY ...... 31

For comments or queries on this report or some of the issues raised in it, please contact Eddy Beck ([email protected]) or Xen Santas ([email protected])

2 Executive Summary

E.1 UNAIDS, with PEPFAR support, sponsored a workshop on developing guidelines for the development and use of unique individual identifiers for health services, including HIV. A multidisciplinary group of health professionals and people living with HIV were invited to attend the workshop. The health professionals included country program managers, country-based and international information technology experts, clinicians, epidemiologists, program evaluators, ethicists and legal experts.

E.2 The development and use of unique identifiers will assist countries in the process of developing HIV services within the context of universal access to HIV prevention, treatment, care and support services, in addition to strengthening the country’s healthcare system as a whole.

E.3 It was recognized by meeting participants that services for people living with and affected by HIV include both health and social services, and that to optimize service provision within and across health and social services sectors, strategies and procedures for linking individual service provision records would be needed, including implementation of unique identifiers. After deliberation among all participants, however, it was agreed that the focus of this workshop would be on the development and implementation of unique identifiers for individuals focused on the needs of the health sector, here termed individual identifiers for health services.

E.4 It was also agreed countries should not develop and implement HIV-specific unique identifiers but they should develop generic, health system–wide unique identifiers. While these identifiers may be implemented for a single vertical, disease-specific program, it is preferable that they should be generated for the healthcare system as a whole. This could improve the continuity of care across the healthcare system as a whole, thereby strengthening the country’s healthcare system.

E.5 The development of healthcare system wide unique identifiers would also reduce the potential for people living or affected with HIV to be stigmatized or discriminated against. It could encourage more people to come forward for HIV testing and counseling, people living with HIV to access preventive and therapeutic services earlier, potentially all resulting in better outcomes of the use of services and enhancing the social and economic aspects of individuals, communities and countries.

E.6 Unique individual identifiers for health services can help strengthen fragmented health services in countries by linking data held within facilities and enabling the flow of information across the general health system and thereby also enhancing the quality, comprehensiveness and continuity of HIV-specific services.

E.7 The development and use of these identifiers should be based on the principles specified in the UNAIDS/PEPFAR Interim Guidelines on Protecting the Confidentiality and Security of HIV Information. Their implementation will strengthen health information systems overall and thus aid in protecting HIV information confidentiality and security.

E.8 High-quality information must be collected in order to improve the quality and coordination of service provision through the development of individual longitudinal service records, and to improve the effectiveness, efficiency, equity and acceptability of these services through ongoing monitoring and evaluation. E.9 National unique individual identifiers can assist service providers in coordinating services and ensuring that persons receive the full range of necessary services as provided by the country’s

3 healthcare system. They help unify fragmented services systems into a more rationally organized system, and provide policy-makers with critical strategic information that inform strategic planning.

E.10 Countries from all regions across the world, including high-, middle- and lower-income countries, have developed or are in the process of developing unique identifiers. Denmark is a country which has developed national unique identifiers that are used across health and social services in that country. Botswana, Brazil, Kenya, Malawi, Ukraine, Thailand and Zambia are countries in the process of developing unique identifiers or planning to do so.

E.11 Like all health information, the development and use of unique identifiers requires balancing the individual’s right to and confidentiality with the need for individual-level information to optimize the provision of services to ensure their effectiveness, efficiency, equity and acceptability for both users and providers of those services.

E.12 Development of unique identifiers should be based to relevant legal frameworks, which should address issues of requirement of consent, how and by whom such information is used, and minimizing the potential risks associated with the use of health information.

E.13 Health information systems must balance society’s interest in accurate information with the rights of the individual to control the use of his or her personal medical information, and to be free from stigma and discrimination.

E.14 As information on an individual user of health services is often collected and used across multiple facilities, to ensure that records representing the same individual can be identified and linked presents a number of technical challenges. Common approaches to overcoming these challenges has involved the development and implementation of biometric identifiers – like fingerprints, voice scanning, retinal scanning – as well as record matching algorithms based on a range of variables within the patient record.

E.15 Participants recognized that different countries might adopt different approaches to fit their national circumstances and the nature of their health systems; however, the principles that follow could guide their development in countries.

E.16 As it is difficult to change national systems once they are in place, countries are advised to take care to make the soundest possible decisions at the outset in putting in place a system for individual identifiers for health services.

E.17 The intended scope of use for a national unique identifier will determine when an identifier should be assigned. For instance, an unique identifier could be assigned when first visiting a health facility or at birth as part of a vital records registration process.

E.18 Steps should be taken to ensure that each identifier is truly unique. Personal identifiers for health records ideally should be unchanging, simple, acceptable, easily accessible and available, practical to implement, inexpensive, portable and durable and should ideally contain no information that is derived from the individual. E.19 To promote continuity of care, individual identifiers should be readily available for appropriate use in all relevant healthcare settings. Efforts should be taken to ensure that identifiers capture all record fragments linked to a particular individual. These identifiers should be included as one