Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009

1. Maintaining the Uniqueness of Health Service Identifiers by ensuring their Confidentiality and SecurityUnique Identifiers Meeting, Nairobi, Kenya, 10-11-2009 Eddy Beck Evaluation, Monitoring and Policy Department UNAIDS, Geneva

2. Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009 • Since 2001, many middle and lower-income countries have developed within their HIV services within the context of achieving of them their Universal Access (UA) targets and Millennium Development Goals (MDGs)

3. Anti-retroviral drugs Such services include the provision of treatment and care for people living with HIV (PLHIV)…. 3

4. …and prevention services

5. Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009 • Strengthening of HIV-related services also need to strengthen the development of the health services in general as well social services, given the multi-sectoral aspect of many HIV epidemics

6. Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009 • For these processes to be successful, increasing amount of individual level information needs to be and is being collected across the world in order to: • Improve service provision within service facilities for individuals seeking preventive or therapeutic services • Improve the monitoring and evaluation of services at facility, sub-national and national levels in terms of their effectiveness, efficiency, equity and acceptability.

7. Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009 • The development of unique health service identifiers will assist this process by: • Improving the collection and use of relevant information in service facilities for individuals seeking preventive or therapeutic services over time. • Enabling the transfer of relevant information between facilities for service provision. • Improve the availability of individual level information for monitoring and evaluating services at facility, sub-national and national levels in terms of their effectiveness, efficiency, equity and acceptability.

8. INDICATOR DATABASES: CRIS/HEALTH MAPPER DevINFO/ KIDS etc. GLOBAL AGENCIES, DONORS Monitoring NATIONAL MINISTRIES, SUB-NATIONAL, LOCAL ADMINISTRATORS INDICATOR REGISTRY Evaluation ACADEMICS, NGOs INDUSTRY etc. HMIS HIV DATA WAREHOUSE OTHER DATA SOURCES eg VITAL STATISTICS, LABOUR, ECONOMIC STASTISTICS CENSUS DATA, STUDIES, DHS etc HEALTH FACILITY COMMUNITY

9. Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009 • Some of the problems for achieving UA and MDG’s goals include: • In many countries the number of people living with HIV is unknown. • When PLHIV attend facilities for services they often present late in their disease course. • A number of reasons exist for these patterns but the existence of stigma and discrimination, is a major cause in many countries.

10. Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009 • Lack of confidentiality and security of HIV and other medical information contributes to this problem. • This lack, deters people from coming forward for both testing and counselling, treatment and care as well as other services required by these individuals. • So, while developing and implementing unique health service identifiers will assist in improving service provision for individuals, and monitoring and evaluation of services, if not linked to broader measures to improve the confidentiality and security of HIV and other medical information, it is likely that PLHIV will continue to present at a late stage of disease and others will not be encouraged to be tested for HIV

11. Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009 • The purpose of defining health information confidentiality and security principles is to ensure that health data are used to serve the improvement of health, as well as the reduction of harm for all people, healthy and not healthy. • Pursuing this goal involves an ongoing process of refining the balance between: maximizing of benefits – benefits that can and should come from the wise and fullest use of data, and protection from harm – harm that can result from either malicious or inadvertent inappropriate release of individually identifiable data. • Security against access is not an unqualified objective; legitimate access to essential data must also be secured. Appropriate policy, procedures, and technical methods must be balanced to secure both individual and public protections.

12. Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009 • Concepts relating to the Confidentiality and Security of HIV and other medical Information • Privacyis both a legal and an ethical concept. The legal concept refers to the legal protection that has been accorded to an individual to control both access to and use of personal information and provides the overall framework within which both confidentiality and security are implemented. • Confidentiality relates to the right of individuals to protection of their data during storage, transfer, and use, in order to prevent unauthorized disclosure of that information to third parties. • Security is a collection of technical approaches that address issues covering physical, electronic, and procedural aspects of protecting information collected as part of the scale-up of HIV services.

13. Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009 • GUIDELINES on PROTECTING the CONFIDENTIALITY and SECURITY of HIV INFORMATION: • Proceedings from a Workshop • INTERIM GUIDELINES • 15-17 May 2006, Geneva, Switzerland • http://www.unaids.org/en/HIV_data/Confidentiality_HIV_information/default.asp

15. Information for Health Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009 • National Prospective Monitoring System on the Use, Cost and Outcome of HIV Service Provision In the UK Hospitals -HIV Health-economics Collaboration(NPMS-HHC) • Monitors systematically and prospectively across 21 centres the • use } • Cost } of HIV service provision in the UK • outcome } • Impact } • Individuals have their own clinic specific identification number but are given an unique NPMS-number based on soundex, sex and date-of-birth. The key between the clinic-specific ID and NPMS-number is held at the clinic

16. Information for Health Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009 NPMS-HHC Infrastructure

17. Information for Health Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009 First-line Treatment Failure CD4  200 cells/mm3 2NRTIs+NNRTI vs 2NRTIs+PIboosted. (2NRTIs+NNRTI=black; 2NRTIs+PIboosted=red)

18. Information for Health Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009 First-line Treatment Failure CD4 > 200 cells/mm3 2NRTIs+NNRTI vs 2NRTIs+PIboosted. (2NRTIs+NNRTI=black; 2NRTIs+PIboosted=red)

19. Information for Health Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009

20. Information for Health Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009

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22. Information for Health Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009 Annual costs for the provision of UK HIV health services, 1997-2006 (2006 Prices)

23. Unique Identifiers Meeting, Nairobi, Kenya, 10-11-2009 • Conclusions: • The development and implementation of unique health service identifiers can potentially greatly improve the provision of health services for individuals and facilitate monitoring and evaluating the effectiveness, efficiency, equity and acceptability of medical services, including HIV services • If such developments are not linked to the broader development and implementation of confidentiality and security guidelines, the effect may be limited to those who are already using health services but will not encourage people to come in for testing and counselling, treatment at an earlier stage of HIV infection or using other services. • While this presentation has focused on HIV, conceptual and practical aspects are similar for all areas of health care. • This presentation has focused on unique health service identifiers, but similar arguments can be made for developing identifiers for health and social services

24. That's All Folks- Thank you!