Understanding lived experience and the intersectionality of health and medical care

There is a long-standing need to involve communities and those with experiences in health care policy and service design and delivery. NHS England’s guidance on working in collaboration with communities provides benefits in terms of money and the improvement in the quality of care and outcomes for health working with communities in their local area. At The King’s Fund, we have documents and blogs that reinforce this idea and force systems to think differently regarding cooperating with communities and people who have personal experience with services when it comes to designing and delivering health care. However, could this engagement be further developed? Some argue for the use and application of intersectional methods to understand people’s experience of health care when it comes to tackling health inequalities based on ethnicity. These intersectional approaches can assist health professionals and other healthcare providers in shifting their focus away not just from people’s behavior but also finding and fixing methods of working that cause and increase inequalities and poor experiences with healthcare.

In this year’s GSK ImpACT Awards, I had the pleasure of meeting a manager from a non-profit and community sector company, and this blog is based on the discussion we had about the intersectionality of lived experience. He introduced me and discussed my interest in the way health and healthcare professionals deal with ethnic minorities and their lived experience of services to address inequities about access, care, as well as outcomes. I made special attention to gender and the using intersectional perspectives. I admit it was a long speech. The manager laughed and stated, ‘I am tired of hearing about intersectionality and lived experience from health professionals. what exactly does that mean?’ I was laughing since it wasn’t the first time I’d encountered such a statement. We often, as professionals, apply concepts in ways individuals outside our immediate group or field may find challenging.

People of different cultural background, national or other locations might not have the expertise or knowledge of how systems work. However, their experience is valuable in designing policies and services that can meet individuals’ needs and reduce health disparities among ethnic groups.

What exactly is a living experience? The idea of a living experience is a concept that has been introduced previously. The concept of lived experience is the ability to understand people’s interactions with services from their point of view and the meanings they get from these interactions and experiences. Lived experience people offer a different view of the health and care policy as well as service design and delivery. Discussions about working with people who have lived experiences must be considered within the context of health and maintenance, which can be seen as a way to gain the expertise of professionals and a quantifiable database. This is especially true for minorities of ethnic origin, and their contribution to policy and design is often minimal, leading to poor healthcare and health outcomes. People of different cultures, backgrounds, nationalities, and other locations may need expert or professional expertise in systems. However, their experiences are invaluable in designing policies and services that meet individuals’ needs and address health disparities among ethnic groups.

Health and medical professionals know that patients’ experiences with health care vary based on many interconnected aspects. This is why intersectionality offers an understanding of how healthcare providers can recognize how different elements which include race/ethnicity and age, socioeconomic variables, gender and sexual orientation, culture, religion, immigration status, and class – play a role in disadvantaged populations and cause inequities. For instance, a recent report on maternal care has shown that women of Black, and Asian backgrounds, are at a higher risk of dying during the birthing process and receive inadequate healthcare than other races. The report reveals that these disparities result from various structural and socioeconomic factors that interact and raise the mortality rate. A holistic approach, therefore, aids health professionals in understanding the many aspects that cause gender-based disparities in health and help develop effective methods of care.

Moving the focus away from individuals’ behaviors to system procedures and practices allows services to challenge the models of care that see people of ethnic minorities as victims without agency.

In addition, it provides opportunities for health and healthcare providers to understand and tackle the institutional structures and practices that block access to meaningful interaction with those who are marginalized groups and to provide solutions that satisfy their requirements. In addressing health disparities among ethnic groups, Services often focus on how people’s behaviors and backgrounds influence their experiences and access to health healthcare. Moving the focus away from individuals’ behavior to the system’s procedures and practices allows services to challenge the models of care that treat people of ethnic minority backgrounds as victims without agency. Instead, those from ethnic minorities participate actively in their interactions with the services they receive, have an option in their health care, and rely on the resources available to them to understand the health medical system.

After many discussions, we both agreed that while concepts and terminology might evolve as time passes, the fundamentals of working with those with lived experience that is not considered part of society will always remain an important consideration. The organizations must consider the meaning of using an intersectional lens to create an inclusive space that allows services to engage marginalized communities whose voices aren’t recognized authentically.

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