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Dr. Maddux: On World Health Day in 2021, the World Health Organization published a seminal whitepaper focused on health equity and its determinants. The paper effectively summarized the concept of health inequity and how it manifests in our communities by highlighting many important statistics, but people are not statistics. Living conditions and socioeconomic factors impact not only the level of health care available to individuals, but also access to food, suitable housing, and clean water.
Joining us today to discuss health equity is Dr. Vivekananda Jha executive director of the George Institute for Global Health in India. Welcome, Vivek.
Dr. Jha: Thank you.
Dr. Maddux: Describe what is health inequity and why is it important to us?
Dr. Jha: Health inequity refers to the unjust and avoidable differences in health outcomes, which are experienced by different groups of people. These inequities are rooted in social, economic, and environmental disparities, which lead to unequal access to healthcare resources and opportunities for individuals and communities. Health inequities are typically experienced by marginalized and vulnerable populations, such as racial and ethnic minorities.
Low-income individuals, and those facing discrimination based on factors like gender, age, disability or sexual orientation. Health inequity is really important because it highlights the unfair and preventable disparities in health that exist within our societies. It emphasizes that health outcomes are not solely determined by individual choices or behaviors, but are heavily influenced by the social determinants of health, such as home, education, employment, housing, access to health care, etc..
This is significant for reasons of social justice and respect for human rights, which means that everyone should have the opportunity to achieve their highest level of health, regardless of their background or circumstances. Therefore, addressing health inequities essential for building a fair and equitable society.
Dr. Maddux: How are health inequities rooted into our systems of health care and our societies in ways that we as nephrologists can respond to?
Dr. Jha: Health inequalities are rooted in a number of interrelated systemic domains that create and perpetuate disparities in health outcomes.
Let's take an example of individuals who have a low socioeconomic status. They may face limited access to quality health care, healthy food options, safe neighborhoods, and educational opportunities, which all lead to poorer health outcomes. Now, next structural and institutional factors such as systemic racism in some countries like mine, Casteism and other types of discrimination and unequal distribution of power and resources also contribute to inequalities. Discrimination and marginalization can be based on a range of factors such as race, ethnicity, gender, age, disability, and other social identities, can lead to differential access to health care, employment opportunities, education, and social support systems. These barriers disproportionately affect certain populations resulting in health disparities.
Inequalities also arise within health care system, uneven distribution of health care facilities and services, limited availability of health care providers in underserved areas and unequal access to health insurance. Contribute to disparities in health care access and outcomes. Such biases and discriminations further exacerbate health inequalities by influencing the quality of care which could be provided for different populations.
Policies and practice across various sectors, including those around education, employment, housing, social welfare also influence equity. Policies that fail to address social determinants of health or that perpetuate social disparities can worsen health inequities. Let us take an instance of inadequate investment in education or employment opportunities. This can really limit individuals potential for socioeconomic advancement and impact their overall health and well-being.
Then there are historical factors such as past discriminatory policies, colonization, and intergenerational poverty. All of these shaped the social and economic conditions experienced by individuals and communities over time, leading to long lasting disparities in health outcomes.
Dr. Maddux: Likewise, there’s been inadequate access to care for many people with kidney disease across the world in many countries. And I’m interested a little bit in how we as nephrologists and researchers can, impact health equity through how we approach research, how we approach education, of how the science of medicine is changing, and our nephrology practice patterns are changing. So speak, for a moment, about intersectionality and how this actually can impact both health equity and our research environment.
Dr. Jha: This is really important and interesting. This is not something that as nephrologists we talk about every day, but intersectionality is a concept that recognizes how multiple social identities intersect and interact with systems of oppression, discrimination, and privilege. It acknowledges the fact that individuals possess multiple social identities, which include race, gender, class, sexual orientation, disability, etc. that can intersect and create unique experiences of disadvantage and privilege for individuals.
These intersecting identities shape how individuals navigate social, economic, and political systems, and they interact with one another to influence individual and group level experiences of discrimination, access to resources, and health outcomes. Now, intersectionality has become increasingly important for understanding and addressing health disparities. As to why it is important, by considering various intersecting social identities, researchers can better understand how different dimensions of identity such as race, gender, and socioeconomic status, interact to influence health outcomes and access to health care.
Intersectionality makes the point that individuals may face multiple forms of discrimination. For example, a person who belongs to a marginalized racial group and also identifies as an LGBTQ+ person may face double discrimination and exclusion based on both race and sexual orientation. This can lead to unique health challenges and barriers to accessing appropriate health care. These kinds of situations lead to cumulative disadvantage, where the impact of discrimination and marginalization is compounded leading toward health outcomes.
Analyzing this type of data allows us to examine how different groups experience health disparities differently and helps us identify the specific needs, challenges, and strengths of different subpopulations and informs targeted interventions which are needed to address these type of health inequalities. Now, ultimately, the goal of all of this is to develop targeted interventions that consider the unique experiences and needs of specified marginalized groups by identifying the root causes of disparities and guide the implementation of strategies that address these multiple dimensions of inequalities simultaneously, rather than in a piecemeal manner.
Dr. Maddux: On a scale of 1 to 10, where do you think we are in the sophistication of our health systems actually beginning to address these issues? Are we still at a very immature stage or are we actually making progress?
Dr. Jha: We are very early in our box to progress in understanding these issues of intersectionality and then developing specific approaches that address these issues which are specific to these individual groups.
Dr. Maddux: Many of our research studies and funding of research studies funds, specific medical and physiologic outcomes. What role do you think patient reported outcomes and the voice of the patient actually becomes important in studying health inequity and its impact on clinical care?
Dr. Jha: Incorporating health equity concepts into research can be tricky when funders typically prioritize specific outcomes. As researchers, we need to start to adopt strategies to incorporate health equity considerations into our research proposals. Firstly, we should always be conscious in framing our research question and objectives in the context of health equity by clearly articulating how our studies will address disparities, how it will promote equity or improve the health outcomes of marginalized populations.
We should always emphasize the potential impact of our research on reducing health inequities. Providing a strong rationale for why addressing health equity is important within the scope of research. This can be done by highlighting the social, ethical, and economic implications of health inequities and explaining how the proposed studies will contribute to a more equitable distribution of health resources and opportunities.
Now, this rationale that we have just provided, this needs to be supported by a comprehensive review of literature that examines the existing evidence and health equity in the research area to identify gaps in the knowledge and develop research questions that directly address these gaps in equities. Here are some things that we need to do much better, which we have not been very good at in the past.
This is collaboration with community organizations, advocacy groups, and other stakeholders who have expertise in addressing health equity issues. This means that we need to become multidisciplinary in our research approach. Affected communities should be involved in research process right from the beginning, including development and identification of problems, development of study design, data collection, and interpretation of the data. This helps ensure that our research aligns with the needs and priorities of the communities that we are aiming to serve.
Collection and analysis of data in a way that allows for examination of health disparities and equity is really important. We must ensure that our study includes diverse populations and captures relevant social demographic variables and uses appropriate statistical techniques to assess and report disparities in health outcomes, access to care or other relevant indicators. Bringing in a policy lens in relation to health equity of research findings by providing recommendations of policy changes or interventions that can address health disparities and promote equitable health outcomes is really critical.
Researchers should consider how our research can inform evidence-based policies and practices to reduce health inequities. Key to this is collaboration and networking and engagement with other researchers and organizations that have a focus on health equity. Such collaborations with experts in health disparities, social determinants of health, and health equity research strengthen the ability of nephrologists to enhance the equity component of our studies.
We should all seek out funding opportunities and partnerships that are specifically aimed at supporting health equity research, and there are increasing number of such opportunities. And we, as nephrologists, are obligated to look at those opportunities as well.
Dr. Maddux: What are some of the tools and processes that are either in development or become available to sort of aid researchers in adding health equity lens to their research?
Dr. Jha: We are fortunate that scientific researchers now have access to a range of tools and processes to promote health equity in their work. A number of health equity assessment tools are available to assess equity in research studies. They help the researchers systematically examine the potential impact of their work on equity and also identify areas of improvement.
Some of the examples of these tools include the Health Equity Impact Assessment, Health Equity Audit, and Health Equity Focused Health Impact Assessment and Equity tool by the George Institute itself. Data disaggregated by socio demographic factors such as race, ethnicity, gender, age, etc. is important to equity research. Disaggregated data allows for the identification of health disparities and helps the researcher identify and understand the unique challenges faced by different population groups.
Another concept that I would like to bring in here is the concept of participatory research. This involves effective communities and stakeholders to participate in the research process, and this is crucial for promoting health equity. Participatory research methods empower communities to identify their own health priorities. They can contribute to designing of research and interpretation of research findings. Researchers can engage communities in the design, implementation, and dissemination of research projects.
Also, this approach helps ensure that research is relevant. It is culturally appropriate, and it addresses community needs rather than the needs only of researchers. The equity indicators that can be used to measure and monitor disparities in health outcomes, access to care, and social determinants to health can include measures such as mortality rates, disease prevalence, and health care regulation rates.
We can also look at other parameters such as educational attainment, income distribution, housing conditions, etc. We need to track these indicators over time, and this can help researchers understand trends, identify inequities, and evaluate the impact of their interventions. Policy analysis is something we need to become much better at. These are powerful tools that can help understand the impact of existing policies on health equity and identify opportunities for policy change.
These can also help with engagement in advocacy efforts to promote evidence informed policies that address health disparities and promote equitable health outcomes. Collaborating with policymakers and advocacy groups is, of course, critical for translating research findings into actionable policies and evidence. In the end, researchers need to examine health system structures, financing mechanisms, health care delivery models, and workforce dynamics to identify opportunities for promoting health equity.
This research can inform policy and practice to ensure equitable access to health care services. I cannot stop without talking about the ethical implications of the research and ensuring that ethical principles related to health equity must always be upheld. This includes that we always consider issues of informed consent. We be mindful of privacy, confidentiality, and potential harms and benefits of participants should always be considered from the perspective of different population groups.
These ethical considerations should always be integrated throughout the research process, from design to dissemination.
Dr. Maddux: We have been focused for so many years on our research on quantitative outcomes, predominantly, and I'd be interested in your perspective on whether we have enough researchers with a background in either ethnographic research or qualitative research in our field of nephrology. And are there opportunities to expand that?
Dr. Jha: There are opportunities to expand all of that. And, like I said, we need to first of all, start by collaborating with these researchers. We need to become multidisciplinary in our research approach. Ethnographers, social scientists, health economist, health system researchers, and people who understand sociology. They are the ones who have been working with these societies and these groups for years and years.
Some of them are even activists, and we need to work with them. As researchers, we have been for a long period of time, considering ourselves as being away from activism. But we need to really go and at least learn from them as to how to engage with societies and start living, sometimes even with the societies, as do ethnographers.
Dr. Maddux: Speak a little bit to our audience about the George Institute and the work that you all are doing to address inequalities and the kind of partnerships that you have around the world.
Dr. Jha: Thank you for asking me to talk about the George Institute. The George Institute is working in a couple of areas that matter for health inequalities. Firstly, we carry out analysis of disaggregated data wherever possible. We have a sex and gender analysis policy which requires that sex and, wherever possible, gender disaggregated analysis has carried out in all our research programs.
We have looked at gender differences in NCD screening and multi-morbidity burden, kidney disease burden, etc. Secondly, we work in the area of social determinants of health, and we try to understand the upstream determinants of health or the impact of health on economic status. We have partnered with the Non-communicable Diseases Alliance recently on a global report which documented the economic burden of non-communicable diseases.
We also documented the economic burden of chronic kidney disease for a report that we put together for the World Bank We are currently partnering with the British Medical Journal to map the legal determinants of health. For example, with a focus on sustainable development goals which are related to health. Then thirdly, we are interested in social participation for health with a focus on universal health coverage reforms.
We convene a global consortium which is seeking to support country level and multilateral actions, which has recently been involved in the multi stakeholder hearings related to universal health coverage, In the run up to high level meeting on UHC.
Dr. Maddux: Tell me a little bit about the Health Equity Action Lab that's part of the George Institute and the way you were encouraging this concept of activism in research.
Dr. Jha: The Health Equity Action Lab hosts all the analysis and projects that I mentioned thus far. But in addition to that, the Health Equity Action Lab, in short, which we call HEAL, it is also developing a toolkit to assess the integration of equity in research. This is based on a quantitative assessment followed by case study work and creation of an inventory.
We have a publication. We have organized internal events which focus on deepening our organizational understanding of intersectionality. It contributed to community engagement and environment working group of the organization and supported initial thinking of internal organizational reform effort, which focused on understanding power and privilege across our offices. George Institute has offices spread across four continents.
We also have an external-facing contributions. We are working very closely with the Health Equity Network of India, which we co-host, and we have helped showcase the work of health rights based civil society organizations and health equity focused academics. We have an ongoing, excellent webinar series that has featured the Civil Society Engagement mechanism for the Universal Health Coverage 2030, Tribal health, conflict and health, system thinkings ,and more.
We have also been involved in six sessions at the Health Systems Research Symposium in Bogota in November 2030. We supported first time human authors, policy engagement, system thinking, research, capacity, strengthening, and human resources for health.
Dr. Maddux: Thank you very much Vivek for your comments and your thoughts about health equity. Any final thoughts about health equity in our kidney community and in the care of people with advanced kidney disease?
Dr. Jha: All of what I mentioned is relevant to work in kidney disease. But really, we have been far behind many of the other disciplines. And, honestly, superspecialities have not been very good in looking at equity aspect of our work. But I'm pleased to say that a number of organizations are now starting to develop patient advocacy engagement with patient advocacy organizations.
They have patient advocacy boards and, therefore, they have started to engage with patients in development of the research programs and looking at outcomes which are important to patients rather than only outcomes which are important to researchers, which is all good news. And we do hope that this movement will gather momentum and true involvement of other organizations, such as the International Society of Nephrology and many other professional societies, including patient advocacy groups.
We will perhaps become stronger in the coming years.
Dr. Maddux: I am too hopeful that we can understand what health equity means in various countries, continents and parts of the world and continue to develop a sensitivity to this that gives us an opportunity to really help societies and people advance their care of kidney disease care. I've been here today with Professor Vivek Jha, who is with the George Institute of Health.
We've been discussing health equity and inequities. And I want to thank you very, very much for your participation.
Dr. Jha: Thank you again very much, Frank, for the opportunity.