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Maia Junco RE: Discussion – Week 3 Ethics in SurveillanceCOLLAPSE Health Informa

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Maia Junco RE: Discussion – Week 3 Ethics in SurveillanceCOLLAPSE Health Informatics and Surveillance Dr. Srikanta Banerjee Maia JuncoEthics in Surveillance Ethical considerations inherent in sharing health dataSurveillance in Public Health has several ethical implications when it comes to protecting the privacy of individuals. The adoption of the federal mandate within the HIPPA act that protects individuals’ information such as their name, social security, and email, has helped to prevent the dissemination of this information among any institution (CDC, 2003). Several elements need to be taken into consideration such as the implications of simple reports and contact tracing to protect other human beings. The element of informed consent should be consistently discussed with a patient, every time there is a risk of an outbreak, and this patient is either infectious or at risk of becoming infected. In a systematic review of ethical problems with surveillance. Klingler et al., (2017)concluded that there is a need for greater awareness of the ethical considerations in surveillance. These authors pointed out the many ethical challenges that come with the surveillance processes and the significant importance is given to how often informed consent is not provided to individuals when included in this process. Lee et al., (2012) discussed the application of ethical principles within the relationship between patients and health care providers such as beneficence, no harm, and justice (Lee et al., 2012). However, the public health system has the responsibility of protecting the community from infectious diseases and monitoring the number of cases to be able to develop programs and allocate funds for them in the benefit of the same community. Position on whether it is more important, from an ethical standpoint, to protect an individual’s identity or protect the community’s health. Public health surveillance practices should clearly ensure that there is a disclosed informed consent of the possible consequences in case the health information needs to be disclosed. Regardless of the magnitude of the health event to be reported, transparency and informed consent should be considered. I believe patients should be informed of any public health reporting whether providers need to de-identify the information or not. However, if the community is not informed of a possible outbreak, it will create chaos and possible trauma in society. Disease surveillance and informatics examples.For example, the possible health costs and consequences of not informing a daycare of a case of shigellosis a child has can cause significant issues. If there is a problem with water contamination or food contamination and the reported case is not isolated, it can cause severe harm to this community, since shigella is contagious and can be spread through children’s hands, food, and contaminated drinking water(CDC, 2019). Increasing the efficiency of health surveillance systems reduces the disclosure of unprotected information. As technology continues to evolve we are constantly developing new health surveillance systems that are faster and more reliable than previous systems. The Electronic case report system (ECR), recently developed by the CDC and several other institutions such as the Association of Public Health Laboratories (APHL) and the Informatics Messaging Services (AIMS) platform, is a system that ensures data shared by surveillance systems is minimally identified (ECR, nd). Rules for reporting data have enforced the spread of information between state health departments and national institutions. This new system helps health care providers report to only one place, where the information can be properly protected. We can protect the community’s health without exposing individuals’ identity or private information when it is not needed. ReferencesCenter For Disease Control and Prevention. (2003). HIPPA privacy rule and public health :Guidance from CDC and the U.S. Department of Health and Human Services. Morbidity & Mortality Weekly Report, 52(supply 1), 1-12. https://www.cdc.gov/mmwr/preview/mmwrhtml/su5201a1.htmCenter For Disease Control and Prevention. (April 5, 2019) National Shigella Surveillancehttps://www.cdc.gov/shigella/surveillance.htmlKlingler, C., Silva, D. S., Schuermann, C., Reis, A. A., Saxena, A., & Strech, D. (2017). Ethical issues in public health surveillance: a systematic qualitative review. BMC public health, 17(1), 295. https://doi.org/10.1186/s12889-017-4200-4 Lee, L. M., Heilig, C. M., & White, A. (2012). Ethical Justification for Conducting Public Health Surveillance Without Patient Consent. American Journal of Public Health, 102(1), 38–44. https://doi-org.ezp.waldenulibrary.org/10.2105/AJP… Electronic case Reporting, (nd). Healthcare Providers – eCR Data Sharing Policy Overview https://ecr.aimsplatform.org/providers/ecr-data-sh…2 days agoWilliam Payne RE: Discussion – Week 3COLLAPSE01. Post a brief explanation of what you consider to be the ethical considerations inherent in sharing health data. For me, the two major ethical considerations are: 1) proprietariness of the data and 2) individual privacy. In the first consideration, public health officials should wonder whether or under what agreement we should have any just claim to the data. In the second consideration, public health officials should be mindful that breach of privacy can cause substantial great harm to individuals. Proprietariness of the Data For syndromic surveillance, often the providers of the data own the data and, altruism aside, have little incentive to share it. This means that the two major ways of obtaining the data are 1) by force of law (is that ethical, though? Shouldn’t entities be, by default and under non-emergency conditions, allowed to own their own data?) or 2) by paying for it (Lombardo & Buckeridge, 2007). Paying for it is the most ethical, but even then, ethics regarding contractual agreements enter into play in the form of security and usage agreements. I also think that people are becoming increasingly worried about companies sell their data. Individual Privacy Information about our health is often of a personal or sensitive nature. For this reason, maintaining patients’ confidentiality is an ancient practice, beginning with The Hippocratic Oath itself (IoM, Nass, Levit, & Gostin, 2009). Privacy is important to individuals and to society alike. Privacy protects people from various forms of discrimination. The case of Ryan White being denied entry to school on account of being diagnosed with AIDS is perhaps the most illustrative case of how breaching medical confidentiality risks undermining people’s dignity and then subjecting them to discrimination within their community (White & Cunningham, 1991). Confidentiality also helps the practice of medicine itself. If people have a rational basis to fear disclosing sensitive information to health care providers, then they would likely avoid giving medically relevant information, making accurate diagnosis more difficult. In some cases, they might avoid clinics altogether and opt instead to self-treat or to otherwise seek unlicensed care. Leaking some kinds of personal information (e.g., life expectancy) could result in fueling vying for favor over living wills or in discrimination by insurance-providers, by employers, or perhaps even by neighbors or peers (IoM, Nass, Levit, & Gostin, 2009). Like clinical practice, research practice, too, would suffer if privacy were to suffer. People’s willingness to participate in clinical trials would likely be undermined if they had little assurance that their health information would be kept private and protected, thereby slowing the progress of medical research. So, privacy protects individuals and society alike, facilitates valuable frankness in clinical medicine, and helps to fuel progress in medical research. The Inherent Non-Privacy of Medicine, Disease, and Security in and of themselves On the other hand, competing factors make health status, and the security maintaining it, seem, by their very nature, not so private. The communicability of some diseases, the government’s compelling interest to investigate signs of apparent violent crime, and people’s need to be informed of and protected against known or unknown dangers in their midst all conspire to justify occasional, well-circumscribed mandates for government intrusion into otherwise private health information. Inevitable advances in transportation technology (Rodrigue, 2020; Mangili,, Vindenes,, & Gendreau, 2015) and in the potential for bioterrorism (owing to its unique invisibility and delayed effects) (Riedel, 2004) shall surely heighten the importance of this consideration in the years to come. In any case, most official bodies’ legal and ethical opinion on the matter falls somewhere in between these two competing goods (Lin & Liang, 2005),02. state your position on whether it is more important, from an ethical standpoint, to protect an individual’s identity or protect the community’s health. As reviewed above, the tension between personal privacy and collective security inevitably poses difficult, often irresolvable questions for society, with each good admitting of formidable legitimacy. However, in my judgment, protecting individuals’ identity is the good of greater importance – greater in the sense that it is more important more of the time and therefore should be considered, as the default standard, the more valuable of the two goods. From an ethical standpoint, protecting individual’s identity goods in the major operative consideration under most circumstances, most of the time. It is also more important in the sense that abrogating entirely the well-established norm of medical confidentiality would have worse and more widespread social consequences than abrogating entirely the practice of disease/syndromic surveillance. Protecting the community’s health is important as well – just less so and less often than credibly assuring individuals’ of confidentiality. In sum, a society that safeguards individuals’ identity most of the time, with only occasional and minimal intrusion when necessary for surveillance purposes is a better, more prosperous society than one that intrudes into individuals’ identity most of the time with only occasional minimal respect for individuals’ privacy. I therefore conclude that we are best served by valuing individuals’ privacy as the default. Fortunately, much of syndromic surveillance can operate with little need for identifiable medical data (Lombardo & Buckeridge, 2007, p. 111).03. Include disease surveillance and informatics examples. It is easy to get excited about emerging technologys’ implications for surveillance. After all, in the wake of the current infamous opioid epidemic (HHS, 2019), the establishment of state-level Prescription Drug Monitoring Programs (PDMPs) for real-time monitoring of opioid prescriptions and integrating them with electronic health records to reduce opioid abuse is one good example of informatics’ ability to help mitigate a crisis of national proportion (CDC, 2020). And indeed, it is true that the advent of databases and of the internet have enabled powerful informatics-driven disease surveillance capability (Lombardo & Buckeridge, 2007, p. 111). However, we should temper that excitement with the cautionary understanding that these capabilities also create the potential for widespread, improper dissemination of medically confidential information, even by accident.ReferencesDepartment of Health and Human Services [HHS]. (2019, September 4). What is the U.S. Opioid Epidemic? Retrieved December 15, 2020, from https://www.hhs.gov/opioids/about-the-epidemic/ind…Lin, L., & Liang, B. A. (2005). HIV and Health Law: Striking the Balance between Legal Mandates and Medical Ethics. Virtual Mentor, 687-692. doi:10.1001/virtualmentor.2005.7.10.hlaw1-0510Lombardo, J. S., & Buckeridge, D. L. (2007). Disease Surveillance: A Public Health Informatics Approach. Hoboken, NJ: John Wiley & Sons.Mangili, A., Vindenes, T., & Gendreau, M. (2015). Infectious Risks of Air Travel. Microbiology Spectrum,3(5). doi:10.1128/microbiolspec.IOL5-0009-2015Riedel, S. (2004). Biological Warfare and Bioterrorism: A Historical Review. Baylor University Medical Center Proceedings,17(4), 400-406. doi:10.1080/08998280.2004.11928002Rodrigue, J. (2020). The Geography of Transport Systems (5th ed.). New York, NY: Routledge.United States Centers for Disease Control and Prevention [CDC]. (2020, June 10). Prescription Drug Monitoring Programs (PDMPs). Retrieved December 15, 2020, from https://www.cdc.gov/drugoverdose/pdmp/states.htmlUnited States Institute of Medicine [IoM], Nass, S. J., Levit, L. A., & Gostin, L. O. (2009). Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research. Washington, DC: National Academies Press. Retrieved December 15, 2020, from https://www.ncbi.nlm.nih.gov/books/NBK9578/toc/?report=reader.White, R., & Cunningham, A. M. (1991). Ryan White: My own story. New York, NY: Penguin Books.2 days agoJames Green RE: Discussion – Week 3COLLAPSEMy position in this week’s discussion comes from a mixed perspective. In my work I am the departments point of contact for initial data sharing conversations. While the overall data sharing policy is set by the university, I facilitate data sharing agreements and serve as the point of contact between the principal investigators (PIs) and the different bodies involved in granting approval such as the HIPAA Compliance office, data sharing committees, and legal contracting offices. As such, I am required to enforce and support the university position on data sharing, even in cases where I do not necessarily agree.Often, my job is to inform and advise PIs on what they can and cannot share based on HIPAA compliance rules and IRB interaction. Most of my energy is spent teaching the differences between limited and de-identified datasets. De-identified datasets are generally shareable, but if any portion of the data contains one of the 18 defined HIPAA identifiers it is no longer de-identified, included in that is the often-overlooked elements of dates among which includes date of service (Centers for Disease Control and Prevention, 2003). There is a difficulty in explaining that a dataset is not de-identified because an image has the date it was taken embedded in the file, even when the rest of the dataset is perfectly de-identified.Health research is filled with examples of unethical practices and progress has been made to protect the rights of patients and research participants and because of this many rules and regulations have been put into place to protect them. These regulations make it difficult to share some elements of data in the interests of preserving privacy but expanding the availability of data is important for future of public health (Hollis, 2016). It is fortunate that public health and surveillance are is a permitted use of protected health information (PHI) without disclosure, but the Privacy Rule still requires a limit to available shared data to the “minimum necessary standard” (Centers for Disease Control and Prevention, 2003).Centers for Disease Control and Prevention. (2003). HIPAA privacy rule and public health: Guidance from CDC and the U.S. Department of Health and Human Services. Morbidity & Mortality Weekly Report, 52(suppl 1), 1–12. Retrieved from http://www.cdc.gov/mmwr/preview/mmwrhtml/su5201a1.htmHollis, K. F. (2016). To share or not to share: Ethical acquisition and use of medical data. AMIA Summits on Translational Science Proceedings, 2016, 420–427.Shellie Bynum RE: Discussion – Week 3COLLAPSEEthics and Public Health DataEthics in Health Data Ethics can be defined as any moral idea or standard, or moral principle (Merriam-Webster Dictionary, 2020). In health care, ethics must be practiced in order to conduct trustworthy practices. When ethical standards are compromised it can devalue the validity of the source. In terms of data sharing, the privacy of participants is a must. The ethical areas that must be considered in sharing health data are any personal identifiable information that is specific to the participants, this includes their names, phone numbers, SSN, etc. When it comes to ethics in disease surveillance, the main issue is the issue of consent and whether or not participants have agreed to have their information shared (WHO, 2020). Two issues that are always common in disease surveillance and ethics is patient privacy and autonomy (Mello and Wang, 2020). Individual’s identity vs community’s health In my opinion it is more ethical to protect the identity of individuals involved in health studies. This is due to the fact that if individuals feel that they cannot trust their health institutions to keep their health information private, they will be less likely to want to participate in research. Normally, an individual has agreed to participate in a study for personal reasons, and if they feel like they are simply seen as a guinea pig for an experiment, or just another number, they will become less likely to continue their participation. Additionally, participants are community members, so the two should not be considered as separate. If it is found that a group of members all have a common disease which is associated to a certain lifestyle practice, and those participants are from the same community, then information can be analyzed as such, and there would therefore be no reason to value one over the other, since the participants are members of the community. When disease surveillance data is collected it considers race, age, gender and many more factors. Another crucially important factor that it considers is location or demographic. This information is statistically grouped together after individual participant data has being input into a system. While data such as demographic can be analyzed to help mitigate a program for a specific community, it is the individuals in that community that tells a more specific story as to how or why an illness has occurred. It is also those community members who will benefit from any mitigation efforts that are put into place to prevent and end the spread of the disease.ReferenceMella, M. M. and Wang, C. J. (2020). Ethics and governance for digital disease surveillance. Science 29 May 2020; Volume 368, Issue 6494, pp. 951 – 954. https://science.sciencemag.org/content/368/6494/95… DOI: 10.1126/science.abb9045Merriam-Webster Dictionary. (2020). Ethic. https://www.merriam-webster.com/dictionary/ethicWorld Health Organization. (2020). Global Health Ethics: Developing guidelines for public health surveillance. https://www.who.int/ethics/topics/surveillance/en/
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