Health systems require health care data in order to effectively and accountably meet the needs of communities.
Behind every figure is a person, and investing in healthy populations also means valuing and investing in data and health information systems.
The ongoing COVID-19 pandemic has increased the focus on data and health information systems. WHO’s Director General, Dr Tedros Adhanom, describes universal health coverage (UHC) and health security as, “two sides of the same coin”. In other words, there is no UHC without health security; there can be neither health security nor UHC without strong data about health care.
Data is a strategic asset that helps protect everyone. Timely, accurate, complete and secure data are the foundations for making evidence-based decisions for health, allocating resources effectively and tracking and supporting communities left behind. Data includes statistics, research, digital technologies, surveys, census, civil registration, and administrative reports.
Strong health information systems (HIS) enable a transparent and secure journey of data from collection, storage, analysis, dissemination to use.
A broad range of data sources in strong HIS can be used to track progress, monitor commitments and promote accountability to meet the needs of all people. This includes vulnerable communities left behind in emergency and non-emergency contexts, who experience the highest disease burdens, rooted in social determinants.
Building on UHC2030’s discussion paper on health emergencies and UHC, the Health Data Collaborative (HDC) proposes three specific issues for data and HIS that are required for more resilient and responsive health systems:
- Strong data governance
- Community partnerships to address inequities
- Increasing trust in data.
1. Strong data governance underpins responsive health systems
Good governance of data and digital issues strengthens accountability and responsiveness of HIS by ensuring the data journey includes transparent structures and well-documented processes such as:
- Principles and policies for data collection, analysis, use and sharing
- Structures that comprehensively collect, store and analyze data securely
- Processes and procedures for evidence-based decision-making and implementation.
Data governance is often taken for granted as part of a functioning health system. Health emergencies shed an acute spotlight on strengths and weaknesses of HIS and their underlying governance principles, policies, structures and processes. Emergencies often force a revision of data governance approaches to ensure HIS are equipped to handle increased data needs so that ultimately health care workers can effectively respond to crises whilst maintaining core services.
Health emergency responses, such as COVID-19, often function separately from the policies and staffing arrangements of routine health systems. This may complicate long-term adaptation of routine HIS.
The international response to a global pandemic requires collaboration on all levels. There must be good national and global data governance in order to safeguard availability, usability, integrity and security of information. Effective and transparent data sharing should be a direct result of good data governance. Effective data governance further provides a basis for accountability in emergency response and health system strengthening efforts.
Certain aspects of two promising global initiatives – UN SG emerging data strategy and the Road to Bern collaborative – could help shape country-level cross-sector and multiple-sector collaboration for data governance.
2. Addressing inequities needs community-orientated granular data
Fulfilling UHC’s equity agenda to leave no one behind depends, in part, upon availability of disaggregated granular data on disadvantaged population groups.
It also requires participation from communities in the collection, analysis, interpretation and use of data. Getting granular data involves forging strong partnerships with communities experiencing the greatest disease burden: the most vulnerable living in fragile, urban poor or rural remote contexts and those affected by stigma and discrimination. Partnership approaches with communities through civil society movements can strengthen contact tracing efforts, community surveillance, promoting health messages, and developing innovations to overcome any access barriers to health services such as transport disruptions.
Partnering with communities in planning, implementing and monitoring services also strengthens trust in the health care system, provides a mechanism for accountability, and increases chances that health care services are sustainable and ultimately acceptable and appropriate to the needs of community members. This is needed even more in emergencies.
An example from Kenya includes M-Tiba, a targeted pro-poor ‘health wallet’ product that is in line with national UHC policy. Data generated by such platforms can be useful in guiding national and global health initiatives and policies.
3. Trust in data is an asset, but often neglected
Data is a strategic asset, especially valuable in times of crisis. Data is also a commodity with financial value, having buyers and sellers in open markets. Embracing open data principles and sharing information in the name of global goods and public health responses to a pandemic must be balanced with ethics, privacy and human rights approaches to data.
Trust between global partners and country governments, and between country governments and communities takes years to build yet can be lost in seconds in times of crisis. Trust in data, often a neglected commodity, has several dimensions:
- Decision- and budget-makers trust that data is timely, accurate, consistent, complete and of good quality
- Individuals and communities trust that their governments will store, use and share data in a way that will guarantee privacy
- Member States trust that multilaterals (e.g., WHO, UNICEF, UNAIDS, UNFPA, World Bank and others) will store and use their data securely
- Member States, individuals and communities trust that multilateral, global health initiatives and academia will not sell off to the highest bidder data that may contain commercially or personally sensitive information.
COVID-19 has forced us to reconsider how data, digital innovation and practical use of information are vital in turning UHC commitments to action and shaping the new normal for health systems. Health emergencies can divert attention from sustainable data collection and knowledge acquisition in favour of response efforts. Yet, COVID-19 presents an opportunity to improve health information systems so that countries are better prepared for future pandemics and so that there is better integration between emergency response and routine information systems.
HDC’s three suggested elements are vital to strengthen accountability and coordination to make sure health systems are resilient to shocks and are able to continue delivering routine services that are responsive to community needs even under pandemic conditions.
The HDC asks all those planning strong health systems for achieving UHC goals to:
- Prioritize data governance and better use of data as a foundation for UHC
- Build community partnership to build trust and use better disaggregated information
- Build trust in data systems by ensuring data security and using clear data sharing policies and ethical frameworks.
- Helen Kiarie, Head of Division of Monitoring and Evaluation, Ministry of Health, Kenya and co-chair, Health Data Collaborative;
- Jennifer Requejo, Senior Advisor Statistics and Monitoring, Data and Analytics Division, UNICEF, New York, USA and co-chair, Health Data Collaborative;;
- Somnath Chatterji, Ai. Director Data and Analytics, DDI, WHO Geneva, Switzerland and co-chair, Health Data Collaborative;;
- Ben Dahl, Epidemiologist, Center for Disease Control, Atlanta, USA and ex co-chair, Health Data Collaborative;
- Mwenya Kasonde, secretariat Health Data Collaborative, WHO Geneva, Switzerland;
- Craig Burgess, secretariat Health Data Collaborative, WHO Geneva, Switzerland
Photo credit: WHO/Rada Akbar
Caption: Dr. Sabah Noor, aged 51, records patient information in a mobile clinic (Pul-e-Campany refugee camp in Kabul, Afghanistan).