2022 report of UN on commitment on HIV/AIDS and Recommendation 5 People-centred data systems
2022 Report of the UN Secretary-General on the Implementation of the Declaration of Commitment on HIV/AIDS and the political declarations on HIV/AIDS (Seventy-sixth session of the General Assembly) A/76/783 (unaids.org)
https://www.unaids.org/sites/default/files/media_asset/A_76_783_en.pdf
As a passionate devotee of digital records and transactions, I believe that this UN report demonstrates well the need for interoperable, interagency, disease integrated, multiservice multimorbidity digital care records!!
The report also seems to support and the need for the emergence of a trusted, publicized and dynamic UN standard for the transparent, people centred and trusted processing of personal health data worldwide.I have pasted some excerpts and we hope to present the case for an emerging UN backed standard for people centred data systems at the UN World Data Forum in Hangzhou, China between April 24th and 27th 2023.
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United Nations World Data Forum
https://unstats.un.org/unsd/undataforum/index.html
Recommendation 5
People-centred data systems 107. Member States are urged to strengthen rights-based, people-centred, ethical and confidential national patient monitoring and case surveillance systems, including through the use of periodic anonymous surveys of key populations and other subpopulations at elevated risk of HIV; to collaborate with affected communities and strengthen their capacity to conduct complementary community-led monitoring; to track national progress towards the 10-10-10 societal enabler targets; and to use disaggregated data to identify and close location- and population-based gaps in services.
The global HIV response has helped build some of the most comprehensive data systems in global health and development, and dozens of countries are using those systems against COVID-19 and other health challenges. Deepening and broadening the collection and use of granular data is critical to guiding efforts by health, education and social protection systems to close inequalities in service access and health outcomes.
91. Countries are also increasingly using granular data to fine-tune their HIV responses. In the 2021 round of the HIV epidemiological estimates supported by UNAIDS, 38 countries collected geolocated programme data and used the Naomi modelling tool to generate subnational HIV estimates and respond to variations in the data.
92. The HIV response is also in the vanguard of community leadership and engagement in data collection and use. Community-led monitoring is increasingly being used as an accountability mechanism that empowers networks of key populations, other affected groups or other community entities to systematically and routinely collect and analyse qualitative and quantitative data on the accessibility, appropriateness, affordability and acceptability of HIV services, and on rights violations and stigma and discrimination by service providers. Community-led monitoring informs HIV programme managers, health decision-makers, donors and other key stakeholders about what works well, what is not working and what needs to be improved. It also helps ensure that data are collected and used in a safe and rights[1]based manner, in particular in countries where key populations are criminalized.
93. Data gaps are standing in the way of reaching key populations. For example, many countries appear to underestimate the size of their key populations, and in some cases data on such populations are not even collected. As a result, their HIV programmes may be unbalanced, with potentially profound gaps in services for those in greatest need.
94. Underestimated population sizes are magnified by other data shortcomings for key populations. Bio Behavioural surveys focused on such populations provide critical data on populations that are difficult to reach through standard means. However, funding constraints and other decisions are causing a reduction in the number of these surveys conducted. 95. Digital health technologies have the potential to support people living with HIV to reliably make more informed decisions with less stigma, and to take control of their health care. The adoption of these new technologies must be accompanied by legal protections that safeguard the privacy and confidentiality of users, ensuring that online health-care records, electronic medical records and communications with health-care providers are protected.
Measures to slow the spread of the COVID-19 virus and the significant additional strain the new pandemic has placed on health systems have disrupted HIV services. In many countries, however, the challenges of COVID-19 have also led to a positive acceleration of differentiated service delivery, including community-based and community-led services. It is critical to maintain this momentum, and to prioritize the removal of societal barriers to services and the empowerment of communities in greatest need of services.
Social and structural barriers stand between these highly affected populations and the services they need to protect their health. Removing those barriers is needed to achieve global targets for 2025 and to change the current trajectory of infections and deaths. A failure to do so will result in 7.7 million AIDS-related deaths during the current decade.
12. The AIDS pandemic response is multisectoral and deeply interconnected with efforts to strengthen health systems and other public services, respond to COVID-19, prepare for future pandemics and achieve most of the Sustainable Development Goals.
15. At the end of 2020, across all countries, an estimated 84 per cent of the 37.7 million people living with HIV globally knew their HIV status, 87 per cent of people living with HIV who knew their HIV status were accessing antiretroviral therapy and 90 per cent of people on treatment were virally suppressed. At the end of June 2021, there were 28.2 million people living with HIV on treatment globally.
39. Integration is progressing well in some areas. For example, linkages between HIV treatment and tuberculosis screening, diagnosis, treatment and prevention have been strengthened. 40. At the first-ever high-level meeting of the General Assembly on the fight against tuberculosis, held in New York on 26 September 2018, Member States committed to providing tuberculosis preventive treatment to at least 30 million people by 2022, including 6 million people living with HIV. Substantial progress was made in 2018 - 2019, building upon a decade of expansion in services and deeclines in tuberculosis deaths among people living with HIV. However, COVID-19-related service disruptions in 2020 coincided with an increase in tuberculosis-related deaths compared with 2019. Tuberculosis remains the leading cause of death among people living with HIV.
Gender inequality and gender-based violence contribute to the elevated risk of HIV infection faced by women and girls, with adolescent girls and young women particularly affected. In sub-Saharan Africa, more than 6 in 10 new HIV infections in 2020 were among women and girls, with adolescent girls and young women (aged 15�24 years) accounting for 25 per centt of HIV infections in 2020, despite representing just 10 per cent of the population.
In most countries, criminal laws against key populations and people living with HIV continue to restrict their access to services. HIV-related stigma and discrimination and violence remain alarmingly high, and gender inequality continues to deny women and girls their fundamental human rights.
People who inject drugs are at 35 times greater risk of acquiring HIV infection than people who do not inject drugs; transgender women are at 34 times greater risk of acquiring HIV than other adults; female sex workers are at 26 times greater risk of acquiring HIV than other adult women; and gay men and other men who have sex with men are at 25 times greater risk of acquiring HIV than heterosexual adult men. Overall, key populations and their sexual partners accounted for 65 per cent of HIV infections worldwide in 2020 and 93 per cent of infections outside of sub-Saharan Africa (see figure II).
Member States are urged to take urgent action against the challenges that are slowing progress towards global targets and consider the recommendations within the present report on (a) HIV prevention and societal enablers; (b) community-led responses; (c) equitable access to medicines, vaccines and health technologies; (d) sustainable financing for the AIDS response and wider pandemic prevention, preparedness and response; (e) people-centred data systems and (f) strengthening global partnerships.
Progress is also uneven among different populations within countries. The prevalence of HIV is generally higher in urban areas, while the availability of HIV services is generally lower in rural areas, underscoring the importance of collecting granular data to identify gaps in service coverage within individual countries.
The single biggest paediatric treatment challenge is finding and linking to care the children who were not diagnosed at birth or during breastfeeding.
Scale-up of rights-based index, family and household testing and self-testing, and integration of HIV screening with other child health services, can help close this gap.
People-centred data systems 90.
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HIFA profile: Richard Fitton is a retired family doctor - GP. Professional interests: Health literacy, patient partnership of trust and implementation of healthcare with professionals, family and public involvement in the prevention of modern lifestyle diseases, patients using access to professional records to overcome confidentiality barriers to care, patients as part of the policing of the use of their patient data
Email address: richardpeterfitton7 AT gmail.com
