Human Rights Data for an HIV/AIDS Scorecard - main challenges
It has been a month since our team of national experts in health, human rights, public procurement and HIV/AIDS, has started the exercise of creating a Scorecard on HIV/AIDS for the Health Sector in Moldova. And while the intention was to convene all relevant stakeholders for a face-to-face strategising session in Chisinau sometime during the second half of March, we had to cancel it due to Covid-19 pandemic and accordingly, re-think our approach, adapt it to the online mode of engaging and working.
The pandemic itself has been showing us all how important is to have access to accurate data, to allow health experts, policy makers and high-level government officials to be able to make informed decisions and identify the most relevant solutions in addressing the pandemic.
Data has always played a crucial role in the ability to research, study, address public health emergencies. Every country needs to have a strong monitoring and evaluation system in place and this should serve as a foundation for national health sector strategic planning processes, covering all major disease programs and broader health sector activities.
Accordingly, national program as well as smaller scale health sector projects’ specific M&E plans, should be fully aligned with the overall plan and national targets.
Data is at the heart of the Scorecards. Data should be at the heart of our HIV/AIDS Scorecard. Data that we aim to incorporate into the Scorecard has a development purpose, accordingly it is called “development data”.
“Development data” are important for setting development targets, measuring progress towards them and implementing development goals. Sources of development data include, but are not limited to, censuses, sectoral surveys, economic statistics, administrative data, civil registration and vital statistics, citizen-generated data, environmental data, and remote sensing and geospatial data. Development data are also compiled by international organisations and financial institutions to monitor the pace of economic and social development, as well as the status of the environment. There is strong complementarity and interdependence among diverse development data, which makes it important to take a systematic and comprehensive approach to producing data and strengthening statistical systems. Source: SDSN (2015), “Data for development: A needs assessment for SDG monitoring and statistical capacity development”, http://unsdsn.org/wp-content/uploads/2015/04/Data-for-Development-Full-Report.pdf.
But where are we with our data? Do we have the data we need to build the Human Rights Dimension of the Scorecard?
Human Rights is one of our key dimensions and we have been interacting with several CSOs in Moldova in order to understand what indicators they monitor, how they collect and report their data, and what’s missing. We have also been looking at the data reported by the public institutions. And to make everyone’s life easier, I departed from the list of indicators presented in the “Rights-based monitoring and evaluation of national HIV responses” Guidance by UNAIDS, 2019. The list is comprehensive indeed and it would be an ideal case scenario for a country to monitor each and every single indicator proposed in order to have a clear picture of how well the country is doing in protecting the rights of the people affected and impacted by HIV/AIDS.
Among the examples of indicators are, but not limited to:
- Number and coverage of programs to train and sensitize health-care providers on non-discrimination, confidentiality and informed consent.
- Number and coverage of programs to train and sensitize law enforcement officers on the human rights of people living with or affected by HIV, sex workers, gay men and other men who have sex with men, transgender people, and people who inject drugs in the context of HIV.
- Number and coverage of campaigns at the national and community levels to reduce HIV-related stigma and discrimination among the general population.
- Number and coverage of programs at the national and community levels to inform and educate individuals about their rights within the context of HIV.
Legal literacy (“know your rights”)
- Number of persons reached through education sessions about HIV-related rights and laws.
- Amount of materials on rights and legal literacy distributed.
- Number of peer outreach sessions conducted.
- Number of community paralegals.
- Number of recipients of peer outreach activities.
- Number of hotline calls received and number of referrals made to legal services.
- Number of cases of HIV-related discrimination received.
HIV-related legal services
- Number of training sessions held.
- Number of individuals provided with training.
- Number of community paralegals providing services.
- Number of referrals for legal support or advice services for people living with HIV and other affected populations.
- Number of cases taken to judicial process.
- Number of people using legal support services.
Monitoring and reforming laws, regulations and policies relating to HIV
- Legal environment assessment or legal audits and desk reviews completed and disseminated to key stakeholders.
- Access to justice assessment report completed and disseminated to key stakeholders.
- Number of engagements on relevant issues with parliamentarians and ministers of government departments.
Reducing discrimination against women in the context of HIV
- Number of education sessions about women’s rights and gender equality.
- Number of women reached by education sessions about women’s rights and gender equality.
- Number of primary health-care facilities with functioning referral systems for survivors of gender-based violence.
- Number of capacity-building sessions held with civil society groups on the issue of women’s rights and gender equality
As a first step: all the proposed indicators were put in a table, and shared with a broader group of organizations, so that in turn they could tell us what indicators they do monitor and report on. We also asked for details related to how long they have been collecting data on those specific indicators, frequency of data collection, and whether there is a certain target for selected indicators.
Several skype calls were conducted with relevant CSOs representatives during the past few weeks to share about the purpose of the Scorecard and what is that something we are exactly looking for. Gradually, we reached a point in which we got to some shorter lists of indicators, monitored by specific organizations. We are still in the process of finalising that work. However, while working on this extremely important yet new dimension of Human Rights vs HIV/AIDS Scorecard, some important lessons emerge:
- While organisations are producing data, it is important to mention that simply producing data or more data is not enough: data must be transformed, analysed, synthesised and made relevant for policy making, monitoring and accountability.
- Monitoring and evaluation is in many instances a very fragmented, uninformed process. Organizations have no specific processes for digitising data they collect, rather limiting to a paper-based system for data entry. Simple excel spreadsheets are missing. They have to be co-created with relevant organisations and insert data manually, and in doing so, we have to look for the data in national reports, policy papers, strategic documents, organisational data, others. It is a very time-consuming process and effort indeed.
- And the above is a major challenge to the so-called data revolution we have been assuming to have since early 2010. Data revolution is not yet producing dividends for a developing country like Moldova. The boom around open government data, even the existence of a national open data portal (https://date.gov.md/) has not triggered public institutions or CSOs to be using data on a regular basis for the decision-making processes. And one of the first, most important pre-conditions for it to work, is to have appropriate information and communications technology (ICT) infrastructure, given that it can increase the speed, accuracy and impact of data collection and dissemination while reducing costs. And Moldova boosts with a very good e-government architecture, however, the challenge is how to take it to a new level and speed up the uptake by all relevant stakeholders nationally, institutionally, community level, etc.;
In moving forward both with such sector specific Scorecards and with the broader data agenda, it is key to:
- Invest in statistical systems and position those as a strategic priority for the government.
- Strong political leadership is needed to promote the cause of data for development and ensure data are produced with high-quality standards, in a responsible and transparent way.
- Engagement of stakeholders as well as multidisciplinary expertise is key in moving forward - expertise from innovators in health sector, from social sciences and economics, national program delivery, patient & care representatives, and civil society more broadly is necessary when setting new targets for the health sector and disease control overall.
- Special attention is needed in setting the targets as well as avoiding conflicting targets. Moldovan institutions struggle with lack of expertise in setting targets, accordingly more capacity building should be provided to M&E specialists on this matter.
We are at the beginning of this journey, and will share our reflections with you as we advance on our work.
Note: This blog post is inspired from my recent discussions and work with Andrei Lungu, Svetlana Plamadeala, Ala Iatco, Angelica Frolov, Oxana Buzovici, Corina Popa, Constantin Cearanovski!
Many thanks, everyone!
To be continued …
Note: The elaboration of the HIV Scorecard in Moldova is taking place under the auspices of the National HIV/AIDS prevention and Control Program in Moldova, with the support of UNAIDS. It also gets support from the “Sustainability of Services for Key Populations in the EECA Region” project (#SoS_project), implemented in Moldova by the Public Association “Positive Initiative” in cooperation with the Alliance for Public Health, Ukraine, and funded by the Global Fund to Fight AIDS, Tuberculosis and Malaria.
1. Overview: What will it take for data to enable development? by Johannes Jütting, Partnership in Statistics for Development in the 21st Century (PARIS21) and Ida Mc Donnell, OECD Development Co-operation Directorate
2. Setting targets for HIV/AIDS—What lessons can be learned from other disease control programmes?
3. Priorities and targets: supporting target-setting in healthcare
4. Monitoring and evaluation of health systems strengthening - An operational framework.
5. The opportunities and challenges of data analytics in health care;
6. OECD Reviews of Health Systems: Mexico 2016