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Evidence to Empowerment: The Role of Research in Vision Advocacy

A Conversation with Jude Stern, Head of Knowledge Management, IAPB

“From my perspective, it is always the right time to make the connection between evidence and advocacy,” says Jude Stern in this interview on the topic of the role of research to empower vision advocacy.


We recently took some time to sit down with Jude to hear her thoughts about this connection. From this discussion, we gain insight into IAPB’s efforts to gather and present the most accurate data for effective evidence-based advocacy, and to understand why research must be the foundation for all advocacy efforts.


IAPB IS DEEPLY INVOLVED IN GATHERING EVIDENCE THAT MAKES A DIFFERENCE IN THE LIVES OF THOSE WITH POOR VISION. HOW DO YOU ENSURE THAT THE DATA THE ORGANIZATION GATHERS IS WHAT YOUR AUDIENCE NEEDS?


Stern: With the recent launch of our new sector strategy, 2030 In Sight, one of the core roles for IAPB is to connect and curate knowledge and evidence for the sector. Our approach is to bring together the best data and evidence available and make it easy to use to inform and accelerate the efforts to make eye care accessible to everyone.


To ensure that we meet the needs of our audience, the knowledge team will be working with IAPB members and research organisations to map the evidence needs to deliver and monitor 2030 In Sight. This will inform the priority areas for sharing data, identifying research gaps and drive the common evidence agenda of the sector.


The Knowledge Hub on the IAPB website is also being upgraded. This means that, next year,  it will be easier to find, share and use data insights, Q&A’s with study authors, and key opinion leader pieces in thematic areas to match the strategy and interest areas of the members.


WHAT RESEARCH GAPS EXIST, AND HOW CAN WE FILL THEM?


Stern: Many gaps exist in data, from our perspective, there are big gaps in population eye health needs, the social distribution of vision loss, services use and effective interventions. Gaps are further compounded by data often being fragmented, siloed by condition and a lack of disaggregation. This results in duplication and inefficiencies when we try to fully understand the eye health needs of populations.


According to the WHO World Report on Vision and the Lancet Global Health Commission on Global Eye Health Report, global survey and service data is needed to:

  • Understand population eye health needs and expectations

  • Analyse health systems and enabling environments

  • Learn more about people-centred approaches to activate demand for health care

  • Provide strengthened accountability towards progress at achieving universal eye health coverage.

To better understand the distribution of eye health needs, disease, service use and impact, we need to improve data availability in health information systems and create indicators to monitor progress. This starts with the adoption of the World Health Organization targets for eye health which should then also be used as the global indicators for eye health and the Sustainable Development Goals.


WHY IS NOW THE RIGHT TIME TO MAKE THE CONNECTION BETWEEN RESEARCH AND ADVOCACY?


Stern: Evidence is fundamental to the advocacy work of IAPB to influence decision makers to change or implement policy. Evidence helps the sector to speak with a common voice and to strengthen our ask of policy makers.


The A2A (Advocacy to Action) series in 2021 was very much about ‘why’ and ‘how’ the sector can work together to effectively advocate at global, regional, and national levels to achieve eye care services for all by 2030. The Evidence session in A2A was an opportunity to bring together researchers, clinicians, public health personnel, advocates and policy makers to discuss the current evidence, consider the gaps in evidence and how the groups can work together to most effectively influence policy to provide eye care for everyone.


From my perspective, it is always the right time to make the connection between evidence and advocacy. For the 2021 series, this is particularly the case as we embark on a new decade of action for eye care; 2030 In Sight. We have been fortunate as a sector to have both the latest update on Global Burden of Vision Loss from the Vision Loss Expert Group (VLEG) and the Lancet Global Health Commission for Global Eye Health published this year. Both provide evidence that is vital for demonstrating the need for eye health services and the burden of not having access to services. The Commission provides evidence of how eye health relates to achieving the Sustainable Development Goals and the ability to unlock human potential.


Data from the Burden of Vision Loss, key findings from the Commission and links to both the publications can be explored on the IAPB Vision Atlas.


AS YOU NOTED, IAPB IS KNOWN FOR THE VISION ATLAS. WHAT DOES THE NEXT ITERATION OF THE ATLAS LOOK LIKE?


Stern: I am so glad you asked this question! Currently the Vision Atlas allows you to explore the VLEG Global Burden of Vision Loss data through interactive maps and dashboards at global, regional and national levels. You can also view and present thematic narratives on the magnitude, inequality, impact and causes of vision loss and utilize country dashboards which include National Eye Health Indicators.


We are now planning an expanded Vision Atlas to meet the evidence needs of 2030 In Sight, to both prove our case and improve accountability. Our vision for the Vision Atlas is to include data on:

  • Population eye health needs (not just vision loss)

  • Population expectations & evidence about driving demand for eye care

  • Health systems, enabling environments & eye health markets and

  • Policy mapping

We will also work to update and broaden the indicators to include the new WHO eye care indicators eCSC (Effective Cataract Surgical Coverage) and eREC (Effective Refractive Error Coverage), eye health and health systems indicators and include social, economic, development and market indicators.


WHAT CAN WE AS CHANGEMAKERS DO TO INFLUENCE THE FUTURE OF EYE HEALTH RESEARCH?


Stern: First and foremost, use and promote good evidence and provide feedback to the researchers on any policy changes linked to their research.


Key areas that we can advocate for include:

  • Studies and funding in areas with the biggest research gaps

  • Research designed to inform policy change from the outset; include communities and policy makers throughout the process; locally led research

  • Equitable representation in research leadership, authorship, principal investigators, participation, and engagement

  • Globally accepted and utilized common data definitions, protocols and processes

  • Work towards open data across the sector

As changemakers, we have an opportunity to influence the eye health research community to work together to design, implement, and disseminate the most critical research needed to inform policy and practice change.

 

Jude Stern is the Head of Knowledge Management at IAPB. As a global educator and knowledge broker, she has extensive experience working at the intersection of global eye health and international development. She works collaboratively with a diverse range of IAPB members and partners facilitating shared knowledge, building collaboration and a shared sense of purpose. At IAPB Jude is responsible for the delivery of the Vision Atlas - a global mapping of vision and eye care needs, learning programs such as the Advocacy to Action, Focus On and the Global Assembly and facilitating the exchange of knowledge as the sector works towards integrated centred eye care and universal health coverage.