This study was conducted using retrospective data to try to discern if there is a prevalence of positive HIV cases from one race to another. “A retrospective study uses existing data that have been recorded for reasons other than research. In health care these are often called “chart reviews” because the data source is the medical record” (Hess , 2004). This can be both beneficial and a risk to the study itself. It is beneficial because the study can be done quickly to answer the specific question they are trying to solve which in this case seems to be does one race have a higher prevalence of positive HIV cases than the others. However, this study only examined 2 years’ worth of data which could also limit the study results. You pull the “charts” of positive cases and write down the list race and move on to the next patient. In this particular case you risk the patient notating the wrong race whether intentionally or accidently. There could also be the risk of false negatives being excluded from your study all together as they are only examining the positive HIV results. A benefit to this kind of study would be that the patients can maintain their anonymity but there is always a risk that the information could be leaked and become public knowledge.
It would concern me with only evaluating the cases at government funded clinics that you are eliminating a large portion of the population that utilize private sector clinics. By using government funded clinics you could potentially be limiting you results to those that fall beneath a certain economic threshold and if those living in poverty are by far a certain race then your study results will also be skewed. There is little risk to the general public as the retrospective data collection has already occurred however it should be noted that if the incorrect conclusion is made from the data it could lead to societal disturbances such as stereotyping of a certain race that being a person of that race leads to a elevated risk of contracting HIV. However, if this data is accurate and not skewed then it allows the general public to become more education on HIV causes and prevention which could lower the incident rates and it would allow medical providers to accurately give their patients the information they need to be able to lower their risks.
It is my belief that this type of study would be considered exempt as it is minimal risk to the examined population. This means that although the researches need the proposal to be on file it would not need to undergo formal review. According to John Carroll University this study would fall under “Exempt 2: Minimal-Risk Tests, Surveys, Interview, or Observations” because the results are anonymous this falls under “de-identified” as “The information obtained is recorded by the investigator in such a manner that the identity of the human subjects cannot readily be ascertained, directly or through identifiers linked to the subjects” (Types of IRB Review). It would need a more formal review if the results were not obtained from retrospective data.
Resources:
Hess, D. R. (2004). Retrospective Studies and Chart Reviews. Respiratory Care, 49(10). doi:http://www.rcjournal.com/contents/10.04/10.04.1171.pdf
Types of IRB Review. (n.d.). Retrieved June 11, 2020, from http://sites.jcu.edu/research/pages/irb/review/review-types/
I agree with you that it would be an exempt form of IRB since they are using anonymous participants.
I understand they are looking at the race to HIV positive ration, but I don’t understand why they are looking at so long ago. What is the point of the data from so many years ago? I would like them to do the study in more recent/current time so that they can utilize the information to do something good for those that are affected by HIV.
Your post had a lot of great points and information in it.
Qiao, H. (3/2018). A Brief Introduction to Institutional Review Boards in the United States. Pediatric Investigation; 2(1):46-51.
My initial assumption was that they were required to wait a certain amount of years before disclosing information for research purposes but in looking through hippa laws on the HHS website it would appear research is a covered entity. I do agree using a wider date range would capture a better image of the true data but I think to do this they would also need to widen the area in which the study was conducted.
Ocr. (2016, October 24). 310-Does HIPAA require a covered entity to create an IRB or Privacy Board before using or disclosing protected health information for research. Retrieved June 15, 2020, from https://www.hhs.gov/hipaa/for-professionals/faq/310/does-hipaa-require-a-covered-entity-to-create-an-irb-or-privacy-board/index.html
I agree with you that the study would be an exempt level as the study poses minimal risks. My main concerns with the study was that the data was only derived from government funded clinics, which could skew the sample towards certain demographics like education and income. Additionally, the data was only obtained in one geographic area with a disproportionate percentage of Caucasians compared to any other race so that might also skew the sample. According to the CDC, African Americans had the highest rate of HIV/AIDS at 69.3 per 100,000 (cdc.gov). A study like this could possibly show some different correlation or concrete more disparity, but might be unlikely since the population of whites in the Midwest is no less than 75%.
https://www.cdc.gov/nchhstp/healthdisparities/docs/nchhstphealthdisparitiesreport1107.pdf
I agree they are doing a disservice to their study by only evaluating the Midwest states according to census.gov over 75% of the population in all Midwest states are considered white which would skew your results. Also like you said by only utilizing government clinics we are potentially excluding those of above the poverty line for the study and according to census.gov less than 14% of midwest population falls below the poverty mark.
U.S. Census Bureau QuickFacts: Kansas. (n.d.). Retrieved June 15, 2020, from https://www.census.gov/quickfacts/fact/map/KS/RHI125218
I thought that the CDC tracked statistics associated with and was able to look up the information on the CDC site. The largest racial group to be HIV positive is the African Americans. The statistical information on race and relation to HIV infections is an ongoing tracked statistic. (CDC, 2018). So with the CDC statistics, I am not sure why a chart review would need to be done, unless area and time specific data is sought after for review. I believe you are right about the case study-1 being a minimal risk study.
Resource:
CDC (2018). https://www.cdc.gov/hiv/group/racialethnicity.
You are correct! But, national information comes from an original source. This can be from a patient chart, or general reporting from a site depending on where it’s collected from.
I agree the information does seem to be tracked through the CDC but like Katie said this information was probably gained from smaller more local studies like this one.
You did a great job analyzing the data and bringing up issues that may arise in collecting good data. My biggest problem with the study was that it is looking at race and HIV, presumably to gain information for the entire country. In that case it seems the study would need to pull subjects randomly from around the US and not just midwestern states. According to the 2018 census of this area of the US is primarily white. This would seem to skew the data.
https://censusreporter.org/profiles/02000US2-midwest-region/