Despite its significant role in the healthcare system, the nursing industry suffers several systemic challenges, such as inadequate funding and treatment inequalities. Among these is the absence of participation in clinical research, especially among marginalised and underprivileged populations, which significantly influences health outcomes and healthcare equity. Inadequate representation of underrepresented groups in research populations can result in insufficiently inclusive healthcare policies and practices.
This problem is best understood through the perspective of Human Dignity, a central concept in Catholic Social Thought. As stated by this guiding concept, individuals should be treated with dignity and respect because of their intrinsic value. This premise is violated by the underrepresentation problem, which prevents marginalised people from having a say in the studies that shape healthcare policy.
Concurrently, the United Nations' Goal No. 3 for Sustainable Development is associated with this problem. To ensure that the insights and improvements in healthcare are practical and valuable to all members of society, clinical research must take an inclusive approach that recognises and protects every person's inherent worth and dignity.
Therefore, fixing this problem is not simply the right thing but also a crucial prerequisite for a truly inclusive and equitable healthcare system.
A long-standing structural problem in the nursing industry is the underrepresentation of marginalised and underrepresented populations in clinical research. This lack of variety, as explained by Beer et al. (2022), reduces the generalizability and translation of research findings, which in turn causes inequitable health outcomes. Systemic, individual, and practitioner barriers contribute to less-than-representative data that fails to capture the full diversity of the studied community.
Clinical research nurses (CRNs) typically play a crucial role in overcoming these obstacles by acting as enablers, facilitators, and navigators. However, the underrepresentation of minorities continues, demonstrating the structural nature of the problem. According to Beer et al. (2022), CRNs can only effectively lobby for equitable research access with a firm grasp of cultural norms and the research process.
Compared to the absence of funding for older adults' mental health treatment, this is another essential structural issue in the nursing profession that must be addressed. While limited funding is a significant hindrance, the issue of underrepresentation in clinical research may have even more significant consequences.
For instance, Banerjee et al. (2021) found that older people's access to dignified healthcare is hindered by ageism and associated types of stigma. However, a lack of older people's participation in clinical research can contribute to the perpetuation of ageism and stigma by producing data that needs to adequately reflect this population's health requirements. The lack of representation in clinical research, while nevertheless vital, has far-reaching repercussions for healthcare fairness.
The first section of Laudato Si' "Care for Our Common Home" stresses the need to protect the environment for the sake of all living things. Recognising the interdependence of all life and caring for the marginalised are two of Pope Francis' main messages (Francis, 2015). One way in which underrepresentation in clinical research goes against these values is by ignoring the health concerns of the socially excluded.
As discussed in Module 2, the absence of representation directly affects the SDGs. SDG 3: Good Health and Well-Being ensure everyone can access quality healthcare (Seidman, 2017). Nursing's importance in reaching the SDGs was highlighted by the World Health Organization's proclamation of 2020 as the Year of the Nurse and Midwife (Osingada & Porta, 2020). In order to achieve SDG 3, it is crucial to increase the participation of underrepresented groups in clinical research, and nurses play a pivotal role in doing so.
The underrepresentation of marginalised groups in clinical research has far-reaching effects on health outcomes and healthcare equity. However, it is only one of several structural problems facing the nursing industry. Nursing can better reflect Laudato Si' and the SDGs, especially SDG 3, by resolving this issue and working towards a more just healthcare system for everyone.
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As discussed in Modules 3, 4, and 5 of UNCC300, the values of community participation, human dignity, and advocacy and action provide a framework for addressing the issue of underrepresentation in clinical research within the nursing profession.
Module 3 explains that the goal of community engagement is to get everyone in a community involved, especially those who are typically left out. Engaging with these underrepresented populations directly to better understand their needs, viewpoints, and challenges to involvement in clinical research is recommended by this concept (Schaffer & Hargate, 2015). This method seeks to do just that in line with Beer et al.'s (2022) request for Clinical Research Nurses to understand better the cultural norms of the people they serve.
Human dignity is a concept from Module 4 that emphasises each person's unique values and rights. In light of the underlying structural challenge, this concept requires the nursing profession to protect the rights of marginalised populations by enabling their full participation in clinical trials (Parandeh et al., 2016).
They are being denied the respect due to them, and our moral duty is to rectify this situation. As argued by Banerjee et al. (2021), ageism impedes older people's access to decent healthcare, a premise that applies to other marginalised groups as well.
Module 5's featured concept, "advocacy and action," emphasises the need to take the initiative to solve systemic problems. In this setting, nurses are urged to advocate for marginalised populations by calling for policy and programmatic reforms to increase their participation in clinical trials. This rallying cry aligns with the thinking of Osingada and Porta (2020), who argue for the need to do nursing research within an SDG framework.
These ideas might be leveraged in a coordinated effort with an Australian community group, the Aboriginal Health and Medical Research Council (AHMRC), to solve the problem. The Aboriginal Health and Medical Research Council (AHMRC) is a prominent Aboriginal health organisation that may link the nursing profession and the Aboriginal population to improve communication, build trust, and encourage Aboriginal involvement in clinical trials (2023).
Workshops and informational sessions are examples of community engagement events that may be held to give locals a voice and help the healthcare industry learn from residents' perspectives. The nursing profession has a responsibility to uphold human dignity by making sure these events are welcoming and helpful for the Aboriginal community.
By leveraging the knowledge gathered via the partnership with AHMRC to advocate for legislative reforms that promote the participation of Aboriginal people in clinical research, the advocacy efforts can have more meaningful impact.
This method has more merit than a sweeping policy shift that could not consider the unique challenges encountered by marginalised groups. While a policy shift from the top down is necessary, it frequently needs more complexity and cultural sensitivity that might come from including the community in the process.
Bottom-up insights are necessary, according to Osingada and Porta (2020), since achieving the SDGs calls for nursing policymaking that is both reactive and proactive in anticipating what is required. Moreover, a policy shift may only successfully convert into practice if the community is actively engaged and advocates for the change.
In conclusion, the nursing sector may address underrepresentation in clinical research through community engagement, respect for human dignity, and advocacy for change. By working with groups like the AHMRC, nurses can be at the forefront of improving health outcomes for all people and achieving health equality.
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Nurses play a crucial role in helping combat underrepresentation in clinical research as both caregivers and activists. Banerjee et al. (2021) shed light on respecting patients' individuality in healthcare, particularly in treating the elderly.
Using this thinking, nursing practitioners are uniquely positioned to recognise possible threats to the dignity of underrepresented and underprivileged groups, such as Aboriginal communities in Australia, because of their intimate engagement with patients and profound awareness of their experiences. Thus, nurses play a crucial role in protecting human dignity by advocating for more diverse participant pools in clinical research and checking to make sure that studies are done with due regard for all participants and their cultural backgrounds.
Nurses, being both practitioners and academics, are well suited to spearhead such an initiative. In order to achieve the United Nations' Sustainable Development Goals (SDGs), Osingada and Porta (2020) suggest that nurses are in a prime position to take the lead.
Nurses' proximity to their populations allows them to get a detailed awareness of their needs, preferences, and barriers and to successfully advocate for the inclusion of these groups in clinical research (Fields et al., 2022). Furthermore, nurses have to promote all people's health and well-being, a value congruent with the objectives of inclusive research.
This means that nurses may take the lead in advocating for legislative changes, conducting and promoting culturally sensitive research, and ensuring that clinical practises are influenced by various viewpoints.
Human Dignity, a tenet of Catholic social thought critical to both the teachings of the Catholic Church and the character of the Australian Catholic University, finds expression in the pursuit of solutions to the problem of underrepresentation in clinical research. The inherent worth of every person and the necessity of upholding their rights and dignity are emphasised in this guiding concept.
This idea in clinical research states that everyone, regardless of ethnicity, socioeconomic status, or demographics, should have an equal chance to participate and reap the benefits of scientific progress. A more fair healthcare system may be achieved via the efforts of nurses who follow the ideal of Human Dignity by fighting for the inclusion of underrepresented groups in clinical research.
Because of this underlying structural problem, the nursing profession can catalyse positive change. With their professional knowledge, patient-centred perspective, and respect for human dignity, nurses are uniquely positioned to help increase diversity in clinical research.
They are taking the lead because they believe in the values of their profession and the ideals of Catholic social philosophy, and they want to help achieve health equality and social justice. Nurses may help achieve SDG 3 (Good Health and Well-Being) and the other goals if they advocate for, participate in, and take action to spread the benefits of clinical research more widely.
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The underrepresentation of particular populations in clinical research is examined as a systemic issue with significant consequences for health equality and social justice. In order to achieve Sustainable Development Goal 3, "Good Health and Well-being," it is essential that research is conducted that takes into account diverse populations and perspectives.
Catholic social thought's premise of "Human Dignity" sheds more light on the ethical responsibility to address this inequity by upholding each person's dignity and fighting for their fair representation in scientific trials.
As the first line of medical defence, nurses may help bridge the gap between scientific findings and the people they serve. They have a particular vantage point from which to call for reform, and they may spearhead efforts to increase diversity and inclusion in clinical research.
In doing so, they aid in the progress towards the Sustainable Development Goals and improve the quality of life for those who are typically ignored or ignored. In addition to ensuring health for all, maintaining the value of "Human Dignity" is at stake in resolving this problem.
Everyone should have a say in shaping the future of science and should be able to reap the rewards of their efforts. By supporting diversity and inclusion in clinical research, nurses demonstrate their continued dedication to this value and work towards a more equitable and respectful healthcare system.
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AH&MRC (2023). About. https://www.ahmrc.org.au/about/
Banerjee, D., Rabheru, K., de Mendonca Lima, C. A., & Ivbijaro, G. (2021). Role of dignity in mental healthcare: impact on ageism and human rights of older persons. The American Journal of Geriatric Psychiatry, 29(10), 1000-1008. https://www.sciencedirect.com/science/article/pii/S1064748121003262
Beer, K., Gentgall, M., Templeton, N., Whitehouse, C., & Straiton, N. (2022). Who’s included? The role of the Clinical Research Nurse in enabling research participation for under-represented and under-served groups. Journal of Research in Nursing, 27(1-2), 143-154. https://journals.sagepub.com/doi/abs/10.1177/17449871221077076
Fields, S. D., Wharton, M. J., Ackerman-Barger, K., Lewis, L. M., & Beard, K. V. (2022). The Rise of Diversity, Equity, and Inclusion (DEI) Practitioners in Academic Nursing| OJIN: The Online Journal of Issues in Nursing. Online Journal of Issues in Nursing, 27(1). https://search.ebscohost.com/login.aspx?direct=true&profile=ehost&scope=site&authtype=crawler&jrnl=10913734&AN=164277493&h=n1P5rEY
&crl=c Francis, P. (2015). Laudato si: On care for our common home. Our Sunday Visitor. https://www.eba-net.org/wp-content/uploads/2023/02/9-20-79-84-Schneck_FINAL.pdf
Osingada, C. P., & Porta, C. M. (2020). Nursing and Sustainable Development Goals (SDGs) in a COVID‐19 world: The state of the science and a call for nursing to lead. Public Health Nursing, 37(5), 799-805. https://onlinelibrary.wiley.com/doi/abs/10.1111/phn.12776
Parandeh, A., Khaghanizade, M., Mohammadi, E., & Mokhtari-Nouri, J. (2016). Nurses’ human dignity in education and practice: An integrated literature review. Iranian Journal of Nursing and midwifery research, 21(1), 1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4776553/
Schaffer, M. A., & Hargate, C. (2015). Moving toward reconciliation: Community engagement in nursing education. Journal of Community Engagement and Scholarship, 8(1), 59. https://pdfs.semanticscholar.org/5331/c683fed304600ef8561bf74be37bb58354ec.pdf
Seidman, G. (2017). Does SDG 3 have an adequate theory of change for improving health systems performance?. Journal of global health, 7(1). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5441444/
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