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Measures of Associations
Question 3
If I investigate rare cancer in Lynchburg, the Disease registries would be a great place to start from. The population-based data such as cultural background, age, sex, etc., are available to assist in surveillance, epidemiology, and result (SEER) determination. They are a type of electronic health records (EHRs) for different populations with varying health characteristics, in which cancer can be counted1. Getting hands-on with this clinical database would mean that individual patients health details and benefits could be gauged closely to diagnose a critical illness more accurately, like cancer2. The state, local and national jurisdictions can be conveniently accessed in which medical histories of each individual are recorded with a predefined uniform procedure for gaining particular outcomes.
Question 4
In terms of legal considerations that I should keep in mind while utilizing this data, I should inform the patient whose data is to be used and ensure that their information would be kept confidential. In terms of ethical considerations, I would again let the subjects know how their information would be used and that they have the right to say no for their medical information to be used. Informed consent and confidentiality have to be taken seriously when real-world data (RWD) like electronic health records and disease registries are collected3. Since this data can be collected easily from any access such as smartphones, laptops, biosensors, and electronic wearables, keeping privacy for the patients becomes a major concern for them and medical professionals. Their responsible use can generate positive clinical outcomes, especially for cancer patients, since basic demographic data is involved. Disease severity and genetic characteristics have to be mentioned alongside the patients data that give rise to legal and ethical challenges in the medical field.
Reference List
1. Pop B, Fetica B, Blaga ML, Trifa AP, Achimas-Cadariu P, Vlad CL, Achimas-Cadariu A. The role of medical registries, potential applications, and limitations. Medicine and Pharmacy Reports. 2019; 92(1): 7-14.
2. Hoque DME, Kumari V, Hoque M, Ruseckaite R, Romero L, Evans SM. Impact of clinical registries on quality of patient care and clinical outcomes: A systematic review. Plos One. 2017; 12(9).
3. Heidelberg M, Kelman A, Hopkins J, Allen ME. The evolution of data ethics in clinical research and drug developmentLvolution de lthique des donnes dans la recherche clinique et le dveloppement de mdicaments. Ethics, Medicine, and Public Health. 2020; 14.
