PMC:7537094 / 22400-34901 JSONTXT

{"target":"https://pubannotation.org/docs/sourcedb/PMC/sourceid/7537094","sourcedb":"PMC","sourceid":"7537094","source_url":"https://www.ncbi.nlm.nih.gov/pmc/7537094","text":"4 INEQUITABLE ACCESS TO INFORMATION\nAs partners in decision‐making, autonomous patients are entitled to full, accurate and understandable information. In addition to autonomy and equality, the prioritization of the worst off can be easily overlooked in individual consultations in resource‐challenged environments, and this entitlement is all the more likely to be ignored in the public health context of a pandemic such as what we are going through during this period in history.\nIn a public healthcare setting, the carer‐cared for dynamics between healthcare professional and patient are enlarged in scope. Respecting autonomy and equality while paying attention to the marginalized in decision‐making are needed both with individuals in a clinic and within a community between officials and citizens.\nIn this section of the paper, the neglect of these principles, especially the prioritization of the worst off, in public healthcare decision‐making is examined in relation to three problems within the Philippines in the context of the COVID‐19 pandemic: paternalistic decision‐making complicated by false information, failure to be mindful of literacy levels, and failure to account for language and other barriers. The first problem is paternalistic decision‐making or deciding without consulting stakeholders. The Philippine government has needed to act swiftly to contain the spread of the disease. It has had to enforce quickly crafted rules that could not wait for extended rounds of consultations and confidence building. Quite understandably, the existence of a pandemic emergency compels decision‐makers and government officials to act unequivocally and resolutely. However, emergencies also tend to trigger a highly paternalistic stance that can have the effect of reducing human beings to mere recipients of information. Failing to heed instructions for dealing with the pandemic, people may be shunted aside for being obstacles to the implementation of a necessary emergency response. Yet, firm and decisive action is not necessarily incompatible with a compassionate and lawful consideration for the rights of citizens regardless of their level of education and health literacy. Emergencies should inspire creativity in finding ways to implement laws and rules decisively without showing disrespect for fellow human beings who may not have the means or opportunity to understand the full import of new laws and rules. The arrogant display of power by authorities under these circumstances reflects a paternalistic stance that can deteriorate into a disregard for the interests of the cared for whom they need to protect in the first place.\nThese paternalistic regulations can pertain to decisions to lock down communities without prior consultation or information dissemination, sending patients home even if they have COVID‐19 symptoms without giving prior information about the treatment protocol, etc. For example, 21 persons from an urban poor community in Quezon City were arrested for violating rules enforced during the enhanced community quarantine (ECQ) that took effect in Quezon City in April 2020. Those arrested explained that they were given false information about the distribution of goods to people who could not go out because of the lockdown. Disappointed that the relief goods did not reach them, they wandered off to an area where distribution of relief goods was supposed to be taking place. The Philippine National Police rejected their explanation so they were arrested. Desperately needing food and cash, and possibly exposed to SARS‐Cov‐2, they were hauled off to jail and told that they were lawbreakers who could not be set free unless they posted bail.23 Yumol, D. (2020, April 1). 21 Protesters Demanding Food Aid Arrested in Quezon City. CNN Philippines. Retrieved April 27, 2020, from https://www.cnnphilippines.com/news/2020/4/1/quezon‐city‐protesters‐arrested‐.html\n, 24 Aspinwall, N. (2020, April 3). The Philippines’ Coronavirus Lockdown Is Becoming a Crackdown. The Diplomat. Retrieved May 21, 2020, from https://thediplomat.com/2020/04/the‐philippines‐coronavirus‐lockdown‐is‐becoming‐a‐crackdown/\nIn the aftermath they must have been more exposed to the infection that authorities should have protected them from. The fact that these people were misled into wandering off because of false information was bad enough. The real situation was made even worse because of the treatment that they got for actions motivated by desperation and ignorance. By acting decisively but with insufficient regard for individual sensitivities, authorities could be missing an important opportunity to process issues of fairness in the allocation of resources in the dispensing of full, accurate, and understandable information about the COVID‐19 pandemic. Local media have reported situations reflecting a failure to appreciate pertinent information by people who have needed information the most but were probably not engaged in a meaningful conversation that considered their perspectives and vulnerabilities.\nPaternalistic decision‐making as illustrated here violates the equality between the carer and the cared for, in the carer (officers) failing to factor into decision‐making the specific context of the cared for (those arrested). By not being sensitive to the situation of the economically deprived, the authorities failed to give due consideration to the interests of the worst off. In addition, the authorities may have failed to recognize their own deficiencies in disseminating accurate information in an effective and appropriate manner. Information dissemination that is sensitive to the target demographic is especially needed in the Philippines where educational challenges are present. It is in this area where the second decision‐making problem comes in: the failure to account for literacy levels.\nIn a 2017 survey of people aged 16‐64 by London‐based research company Ipsos MORI conducted among 38 countries, the Philippines ranked the 3rd least accurate when it comes to answering various questions (including health‐related data) but also the 3rd most confident with their answers.25 Ipsos. (2017). Perils of Perception 2017. Ipsos MORI. Retrieved May 21, 2020, from https://www.ipsos.com/sites/default/files/ct/news/documents/2018‐02/ipsos‐mori‐perils‐of‐perception‐2017‐charts_0.pdf\nIn this survey, respondents were given multiple choice factual questions about their country. Accuracy was measured by checking if the respondents’ answers were correct. Confidence was measured by asking the respondents how confident they were in the accuracy of their answers.\nAdditional insights about Filipinos’ level of literacy can be gained from the 2018 Programme for International Student Assessment (PISA) survey of 15‐year‐old students conducted by the Organisation for Economic Co‐operation and Development (OECD). Among 79 countries, the Philippines ranked the lowest in reading and the 2nd lowest in both mathematics and science.26 Schleicher, A. (2019). PISA 2018 Insights and Interpretations. OECD. Retrieved May 22, 2020, from https://www.oecd.org/pisa/PISA%202018%20Insights%20and%20Interpretations%20FINAL%20PDF.pdf\nThe OECD notes that in the Philippines, students from the highest socio‐economic quarter scored 88 points higher in reading compared to students from the lowest socio‐economic quarter; 88 is close to the average of OECD countries’ difference in reading scores between each country’s highest and lowest socio‐economic quarters, which is 89 points.27 OECD. (2019). Philippines Country Note Programme for International Student Assessment (PISA) Results from Pisa 2018. OECD. Retrieved May 22, 2020, from https://www.oecd.org/pisa/publications/PISA2018_CN_PHL.pdf\nOther studies abroad have shown that lower income groups have a harder time comprehending health information.28 Tang, C., et al. (2019). Examining Income‐Related Inequality in Health Literacy and Health‐Information Seeking among Urban Population in China. BMC Public Health. 19, 221. Retrieved April 28, 2020, from https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889‐019‐6538‐2\n, 29 von Wagner, C., et al. (2007). Functional Health Literacy and Health‐Promoting Behaviour in a National Sample of British Adults. Journal of Epidemiology \u0026 Community Health. 61(12), 1086‐1090. Retrieved April 28, 2020, from https://jech.bmj.com/content/61/12/1086\nThere is a direct relationship between socioeconomic status and the level of health literacy. This is a reason why a lot of Filipinos have failed to grasp the full significance of the existence of the COVID‐19 pandemic and the importance of cooperating with measures to control and limit its spread.\nThe failure to account for stakeholders’ literacy levels violates the prioritization of the worst off. Understanding this specific context should result in the provision of more assistance to those in more need of health and educational services, not in the easy targeting for police apprehension.\nPrioritization of the worst off should also apply to the removal of language barriers, the third decision‐making problem addressed in in this section. In the Philippines, Filipino is the national language, and both Filipino and English are the official languages. However, as many as 186 languages are spoken in the country.30 Eberhard, D.M., Simons, G.F., \u0026 Fennig, C.D. (Eds.). (2020). Philippines. Ethnologue: Languages of the World 23rd Ed. Retrieved July 7, 2020, from https://www.ethnologue.com/country/PH\nThe OECD mentions in the 2018 PISA that: “Some 94% of 15‐year‐old students in the Philippines speak a language other than the test language (i.e. English) at home most of the time.”31 OECD, op. cit. note 27, p. 1.\nNotable efforts have been made by the University of the Philippines (UP) to translate English medical terms related to COVID‐19 into the Filipino language. A UP professor, Eilene Antoinette Narvaez, has come up with a compendium of Filipino terms regarding COVID‐19, and the university’s Department of Linguistics is connecting community translators with one another across the country.32 Anonymous. (2020, March 27). KapitDiliman! We’ve Got your Back. UP Diliman Information Office. Retrieved April 28, 2020, from https://upd.edu.ph/kapitdiliman‐we‐got‐your‐back/?fbclid=IwAR3gFraGwK3aeTGIkuyuuir2w3yFY7ZjKGr0MuoWCnI1hhtcV‐YgI9f3‐k4\nThe UP College of Education has written a dictionary of COVID‐19‐related terms in both English and Filipino for children, and this dictionary contains links to videos of the Filipino sign language of the terms.33 Anonymous. (2020, May 16). COVID‐19 Dictionary for Filipino Children in Filipino and English (Full Version). University of the Philippines College of Education. Retrieved May 22, 2020, from https://educ.upd.edu.ph/covid‐19‐dictionary‐for‐filipino‐children‐in‐filipino‐and‐english‐full‐version/\nApart from the language or dialect that is being used, the level and the manner of discourse is also important. Viewed as a matter of fair allocation, the dissemination of information has to be seen in these terms. Communication that is not carried out at the level of understanding pertinent to its divergent audiences or that is not cognizant of their specific information needs can only serve the interests of a select population and thereby contributes to inequity. This inequity arises especially because these divergent audiences are likely to be among the worst off financially and educationally, and deserve to be prioritized. In this country – as in many others – information infrastructures can be fully developed in affluent areas but not in others; access to interesting and high‐quality information can be expensive; and training and equipment for the effective use of pertinent technology may not be equitably available.”34 Van Den Hoven, J., \u0026 Rooksby, E. (2008). Distributive Justice and the Value of Information: a (Broadly) Rawlsian Approach. In J. Van den Hoven, \u0026 J. Weckert (Eds.), Information Technology and Moral Philosophy (Cambridge Studies in Philosophy and Public Policy, pp. 376‐396). Cambridge: Cambridge University Press. https://doi.org/10.1017/CBO9780511498725.019\nWhile the capability of new information and communication technology to level the playing field for all citizens has been much heralded, it may also have the reverse effect of exacerbating existing inequalities if access is not widely distributed and benefits are merely integrated into already existing socioeconomic structures.35 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