Informed Consent in Health Data Collection
From Digital Culture & Society
[edit] Context
Recent health data accumulation methods show several issues in which data accumulation practices have been illustrated. A prominent issue within the field is ensuring participants and stakeholders have been informed and consent to their data being used. In the context of platforms, it is important for these platforms to illustrate informed consent to the participants. In these article reviews, this idea is observed through three different lenses. The primary analysis focuses on cultural implications to informed consent. The second article aims to see ways in which informed consent is being illustrated through the use of drones. Finally, the last article aims to create a checklist in which researchers and platforms can follow to ensure they communicate informed consent to participants.
Ss20wd 15:52, 1 December 2023 (EST)
[edit] Cultural aspects related to informed consent in health research: A Systematic review
Halkoaho, A., Pietilä, A.-M., Ebbesen, M., Karki, S., & Kangasniemi, M. (2016). Cultural aspects related to informed consent in health research: A systematic review. Nursing Ethics, 23(6), 698–712.
D.O.I. [1]
[edit] Context
This article aims to determine the aspects that relate to cultural implications around informed consent. In the context of health, privacy and security, gathering informed consent ensures that you are not crossing over boundaries that could hurt the privacy of the participant. This article takes this thought and challenges it by applying it to how cultural aspects can influence whether or not informed consent has been achieved. In conducting a systematic review, they are able to determine what cultural aspects should be acknowledged before and when completing a study.
[edit] Overview
In the introductory stage of this article, the authors aim to outline some of the cultural implications that are a part of Informed Consent. They highlight concepts such as habits acquired by a human as a member of society such as religion and other factors that create ranges of cultures within societies. In order to fully achieve informed consent, these aspects should be considered before completing the study. The article aims to determine how these cultural aspects of research ethics are applied to and relate to informed consent from human subjects in health research.
[edit] Research Design and Hypothesis
Halkoaho et al, designed their research method around conducting a systematic review which focuses on cultural aspects of informed consent within health research. In order to accumulate their data, they used a library database containing the keywords “informed consent AND biomedical research” (Halkoaho, A. et al., 2016). These articles were primarily taken from the 2000 - 2013 time period and contained adults who could provide consent. Otherwise, the articles were rejected from analysis. With this in mind, the researchers gathered 25 articles, 10 of which were theoretical, 12 qualitative studies and 3 quantitative. Derived from these articles, four themes were developed. Theme (a): being aware of local protocols, legislation, and culture. Theme (b) considering human subjects’ life situation. Theme ( c ): taking account of human subjects’ awareness of research protocol. Theme (d) ensuring sensitive recruitment.
[edit] Strengths and Weaknesses
One of the strengths of the article was its ability to analyze a wide variety of various types of articles. In considering 25 articles, 10 of which were theoretical, 12 qualitative and 3 quantitative studies, allows for a wider range of data collection methods and shows how informed consent can vary depending on the study. Another strength were the themes derived from their research. These themes allow for further analysis of different concepts to acknowledge when conducting these studies. The themes analyzed show how informed consent when it comes to cultural aspects can be used and analyzed when conducting studies. Weaknesses of the article are a little more prominent. Primarily, this study was conducted in 2018, with conducting a study in the health industry, data accumulation methods have changed rapidly. Being a study conducted in 2018, the data may not be accurate compared to today. Alongside this, they were using articles from 2000-2013 which adds to concern about what literature they analyzed and how outdated this literature was. Another weakness of the study was questionable exclusion of certain studies. In their searches they excluded any studies that were surrounding cell or genetic research. These researches can be heavily influenced by cultural aspects and excluding them seems like a disadvantage to their study.
[edit] Assessment
In conclusion, this article was able to determine ways informed consent should be integrated into studies in order to ensure that cultural implications were assessed. In doing so they were able to derive four themes, (A): being aware of the local protocols, legislation, and culture, (B) considering human subjects’ life situation, ( C ): taking account of human subjects’ awareness of research protocol, (D) ensuring sensitive recruitment. In applying these themes, the researchers were able to determine four main ways that cultural implications should be used when conducting health research. Overall, this paper was able to show clearly the importance of informed consent and considering its cultural implications.
Ss20wd 15:52, 1 December 2023 (EST)
[edit] To Obtain Informed Consent or Not to Obtain Informed Consent? Drones for Health Programs in the Grey Zone between Research and Public Health
Jeyabalan, V., Donelle, L., Meier, P., & Nouvet, E. (2023). To Obtain Informed Consent or Not to Obtain Informed Consent? Drones for Health Programs in the Grey Zone between Research and Public Health. Drones (Basel), 7(4), 247
D.O.I. [2]
[edit] Context
This article aims to outline the importance of giving informed consent when utilizing drones for health studies. Recently, we have seen an increased use in drones for health research. Drones are used for many means in the health system such as providing for underserved remote communities the resources they need. It has also been used for analyzing maps for certain communities to ensure their health and safety. Ensuring consumers are aware the drones are being used is essential to illustration privacy and security. Drones fly over many communities which can and often do collect data. Being small in nature they are hard to spot. Ensuring communities are aware there are drones flying in their community is essential in ensuring their privacy and security is maintained.
[edit] Overview
This article introduces us to what is deemed to be voluntary participation in the context of health practices and how obtaining informed consent may not be feasible or appropriate. In doing so, asking for informed consent may limit the general public from potential benefits. In addition, they outline the current ways people are utilizing drones for various healthcare purposes such as, restocking pharmacies, delivering biomedical samples and announcing health news to the public. The overall research aims to seek out practices that are currently being used by researchers in order to seek for consent from communities and their members. Alongside this, they challenge the fact to see if consent is often needed at all and see if it is deemed as ethical.
[edit] Research Design and Hypothesis
The research was designed by collecting 16 participants that fit 2 criteria. The first being: had to have worked in a role that involved responsibility for introducing and implementing drones into the health program and the second being willing to partake in an hour long in-depth interview. The participants were gatherers from 9 different countries and collected via a snowballing sample method which allowed the to get other members within the field easier. Their findings were measured through 3 different results. The first was measuring the participants experiences and measuring it in terms of informed consent. This example showed a drone study which studied a village for flooding where they asked the village elders for consent. The second result was a challenge regarding contacting local community members. Many members were uninterested, unavailable to reach, or there was insufficient advertisement of the study. This raised some critiques on whether there is informed consent because many don’t participate in the study. The final being lack of consent and if it is needed at all. An example showed how there was a death in the village, so all the villagers have left. With this happening, the researchers did the study without the consent of members in the community because of a time frame. The only consent received was from an elder in the community, this raises concern of whether this consent is sufficient.
[edit] Strengths and Weaknesses
One of the strengths of the article is how recently it has been published. Being under a year old it provides recent relevant information from the field. Alongside this, the sample of which was used was fairly representative. In collecting 16 participants from 9 countries that fit a certain criteria allowed for specialized people from various countries around the world. This allows for better interpretation of results and illustrates cultural differences when it comes to informed consent. A main weakness of the article was it continued to talk of one example. Given that there were 16 participants, including more examples from these participants would have been more beneficial in illustrating different perspectives of different experiences from within the field.
[edit] Assessment
This article was exemplary in illustrating how drones are currently being used in health practices. They showed many ways they are used and benefits they can provide to underserved communities. Their in depth interviews provided beneficial information for illustrating how informed consent has and can be used in drone health research. With the data accumulated they were able to draw conclusions that can be beneficial for future researchers. Alongside this, they were able to gather sufficient information to be able to give important suggestions to government regulators as well as health teams conducting these studies.
Ss20wd 15:52, 1 December 2023 (EST)
[edit] Applying a Digital Health Checklist and Readability Tools to Improve Informed Consent for Digital Health Research
Nebeker, C., Gholami, M., Kareem, D., & Kim, E. (2021). Applying a Digital Health Checklist and Readability Tools to Improve Informed Consent for Digital Health Research. Frontiers in Digital Health, 3, 690901–690901
D.O.I [3]
[edit] Context
This article aims to give an overview of informed consent as there has been an increase of digital tools in aiding health research. C. Nebeker, et al., claim that consent documents are lengthy and time consuming to read. With this, it isn't always possible to gain informed consent from their participants. They aim to make a methodology that researchers can use in order to maintain clear communication to their participants. In doing this, they aim to obtain more accurate informed consent.
[edit] Overview
This article aims to provide the resources and means necessary to ensure there is informed consent when creating health research studies and within their documents. In the article, they outline a method already provided within the health field to provide informed consent, called the DHC tool. This tool provides a set of practices within the field already which include, access, usability, privacy, risks and benefits and data management. Using these tools allows them to create a foundation to which the industry already practices and allows them to build off of it. In conjunction with other tools, the aim is to create a reading level in which all participants can be informed. To achieve this, they must obtain a 6-8th grade reading level. To compare the results, they used an IRB study which used “body worn sensors to capture natural behaviors between a mom and baby in the home environment’ (C. Nebeker, et al., 2021).
[edit] Research Design and Hypothesis
The research design is focused around four key areas. The first being understanding and addressing the core problems. These problems consisted of communication within documents being “increasingly transactional and include legal disclaimers on top of the basic information about research study participation” (C, Nebeker, et al., 2021). This practice drastically increased the reading level to a 11-12 grade level. Secondly, the research team aimed to be people-centered. In doing so, focusing on how the field approved consent forms can be changed to reach the general public 6-8th grade reading level. The third approach was to use an activity-centered systems approach in which they used readability software such as the readability feature within Microsoft Word. This would allow for them to determine a grading level for smaller text segments. Finally, they aimed at applying the Digital Health Checklist tool and comparing it to the IRB consent form to see ways in which it could be improved. In doing so they determined that visuals aid in creating a clearer understanding for users. Aswell, as utilizing tools within the checklist, they can lower the grade level of IRB articles to prove there is more room for improvement.
[edit] Strengths and Weaknesses
A strength of the article was their ability to provide a clear view of practices that were already being implemented within the field. This allowed them to illustrate a standard that most practitioners must follow and allow for them to build off of this to create a better means for communicating consent. Another strength was the recency of the article. Being published in 2021, allows for more current information on practices currently being used and current softwares that could be implemented within the checklist. A weakness of the article was how they only compared one study when creating the checklist. This limits how the readability is tested within the whole field as it only touches on one article. Allowing for more articles to be analyzed can determine differences in readability depending on the context of the research.
[edit] Assessment
The article does a tremendous job of illustrating ways in which certain health research documents can improve on their readability. With tools that are readily available for most researchers, this gives them an aid and an easier means for this to be applied more frequently. In illustrating ways such as including visuals and assessing readability scores, they aim to create ways for researchers to ensure informed consent on a wider scale to their participants. Although, applying this to more studies could determine more ways for this practice to be implemented.
Ss20wd 15:52, 1 December 2023 (EST)
Please consider the environment before
printing this page.