Data, Technology, Society
This course investigates how data science is transforming not only our sense of science and scientific knowledge, but our sense of ourselves and our communities and our commitments concerning human affairs and institutions generally. Social implications of the digital revolution, including ethical issues associated with algorithmic design and privacy will be examined. Students will use a sociological lens to explore how our increasingly digital lifestyle changes institutions and social relations.
- Identify and comprehend the challenges in defining and studying technology.
- Exhibit knowledge and comprehension of the historical definitions of technology and their strengths and limitations.
- Identify and critically examine a wide range of theories on the complex interrelationship between society and technology.
- Examine the field of science and technology studies (STS) and its unique socio-technical perspective
- Critically examine and analyze how the phenomenon of the digital divide has transformed from a problem solely of Internet access to one linked to digital skills and a range of opportunities.
- Comprehend, apply, and analyze the historical and contemporary theoretical and methodological approaches to the study and critique of gendered technologies.
- Critically examine the concept of social capital and how digital media have influenced the social capital available in communities.
- Exhibit knowledge and comprehension of socialization and friendship in the context of digital media.
- Evaluate surveillance as a multifaceted term with great relevance to the information society.
- Comprehend, apply, and evaluate present models of counter-surveillance and sousveillance.
- Identify, analyze, and synthesize the ethical and moral dimensions of our technological society, including the idea of the neutrality of technology.
COURSE MATERIAL
Quan-Haase, A. (2020). Technology and Society: Social Networks, Power, and Inequality (3rd ed.). Oxford University Press Academic Canada.
Class Discussions
Discussion 1
What are the five principal challenges in studying technology?
Initial Post
There are five principal challenges of studying technology that I pulled from the ‘Challenges’ slide. First is the rapid pace of technology development. Discovery often leads to more discovery and humanity has evolved to understand many topics that are fueling technological innovation in a plethora of disciplines across our understanding of the world. Secondly is the difficulty in predicting the direction that technological innovation is taking humanity. It is challenging to determine what the effects and outcomes of developing technologies will be. Third, social changes are associated with technological changes that are based on the particular group being studied since new technologies will affect different groups differently based on the characteristics that make up each group. Fourth, the uses of particular technologies change over time. A use that made technology popular in the first place may not be the only or dominant use of that same tech in the future. Fifth, new issues and dilemmas are constantly emerging that weren’t associated with similar versions of the same technologies raising the importance of consistently revisiting the ethical dilemmas associated with the continued use of various technologies.
Response 1
Your second point on unprecedented social change is a great challenge to highlight. New technologies have had world-changing effects on the world as we know it. The Industrial Revolution completely changed the structure of the world and how it interact with each other. The technological changes transported the world from being dominated by rural life to the construction of densely populated cities that would further drive change and innovation. The same could be said about how the birth of computers. They changed every way that people interact and live their lives.
Response 2
I also agree that the most challenging aspect of technology is how fast it is advancing. It seems as if we are riding an exponential rate of change as new technologies emerge. For each discovery and innovation that is developed new areas of study and inquiry emerge opening more possibilities for new technologies to be developed. It seems that our existentialism is racing toward a singularity where the rate of change is happening faster than we can understand or respond to it.
Discussion 2
What does it mean if something is said to have followed an evolutionary model of technological development?
Initial Post
The evolutionary model of technological development is the building on previously existing innovations to create new higher-level advancements or technologies. New technological advancements take aspects from ideas and artifacts from previous innovations that came before. An example where this can be observed is the progression of electronic communications. To start with, the telegraph was developed where messages were transmitted through a cable with pulses of electricity to transmit a coded message. This gave rise to the telephone where voice could be transmitted through electronic media. It isn’t likely that telephone communication would have been developed first since it required concepts and technologies that were first developed to make the telegraph. The traditional analog telephone then gave rise to the digital telephone. This is a continuation of how the previously created technology was built upon to create new ideas and artifacts. Technological evolution occurs when people continuously build upon previous concepts and creations.
Response 1
I liked how you compared the evolutionary model of technological development to the evolutionary development of life. In both instances, a higher order develops to match the needs of what is developing. Life evolves to survive and spread its influence and its instances on the world, while technology can be viewed through the same lens building upon earlier manifestations to increase utilization and adoption spreading its influence and use through the cultures that it permeates.
Response 2
Your example of the evolutionary model is a terrific representation of this notion of human development building upon previous concepts and technologies. Originally the open flame was used to see in dark places. This concept was built on multiple times creating higher levels and uses. Using open fire for illumination evolved into wrapping sticks with cloth and fuel to provide light while moving and for placement in dark places. This form of technology eventually gave way to candles and then to incandescent bulbs by coupling electrical innovations with illumination technology. This later gave rise to new types of lighting technologies like fluorescents, halogens, and LEDs. In this example, these later technologies wouldn’t have been developed without the previous concepts and innovations.
Discussion 3
What is meant by technology as a regressive force?
Initial Post
Technology is a regressive force as depicted under the dystopian perspective because it threatens the established way of life in a society. Looking at technology through this regressive force lens it can be viewed as disruptive to environmentally sustainability, health care, and education. Some examples of technology being a regressive force to environmental sustainability are the high costs of energy from using large amounts of computing power, the environmental impacts of mining metals for building computer chips, and the large amounts of computer wastes as technologies upgrade and become obsolete. Some disruptions to health care include the challenges to keeping PHI confidential, hacking of medical devices, and ransomware attacks to health information systems. Education also has challenges that can be seen in technology as a regressive force where students use the internet and have exposer to graphic material on the internet, a rise in social media use by students resulting in a spike in suicide rates of users, and students being victimized online through social interactions.
I used the required text for this course as my reference for this post.
Quan-Haase, A. (2020). Technology and society : social networks, power, and inequality (3rd ed.). Oxford University Press. https://platform.virdocs.com/read/1558595/12/#/4/2/4/2/2[ch3],/1:0,/1:0
Response 1
I agree that when there are disparities in access to new technologies and innovations or when governments use technology to repress certain populations it could be seen as a regressive force. When capital is reinvested in wealthier communities through technology in education, employment, environmental sustainability, and healthcare rather than providing the same support to struggling communities it helps drive a divide through increased inequality. When social biases exist governments may use technology for more intensive policing in marginalized communities executing more arrests and promoting the perspective that there is more crime in those areas. There are many ways that technology can be used to disrupt our society by increasing inequalities and distribution of resources creating a more dystopian future.
Response 2
The point you made about technological advancements leaving behind less developed societies is a great example of how technology can be viewed as a regressive force. The growing gap between developed and developing societies is moving at an exponential rate because innovation is creating technologies faster than many societies are able to adopt them. For example if a major auto manufacturer starts building new inventories of vehicles being all electric this could leave behind countries that don’t have a good network of charging stations. People living in those countries won’t have the same opportunities for new vehicles as people living in more developed countries. This could also be understood in upward mobility. If top employment opportunities require advanced computing skills and remote interactions, people living in countries that don’t have the same technological resources could be held back from candidates that come from a background of higher wealth and resources.
Discussion 4
How does technological redlining work and what are its consequences?
Initial Post
Technical redlining is when biased content that lacks diversity is available for online queries which causes search results to return information that “reinforces oppressive social relationships and enacts new modes of social profiling.” (Quan-Haase, 2020b, p. 89) This social principle can result when creators of the algorithms that power search engines are created by non-diverse groups. In the case that Safiya Nobel highlights, Google’s initial search algorithm would dispense out troubling results when language that describes minority populations is used. (Quan-Haase, 2020b, p. 89) When Open AI released Chat GPT I recall hearing news stories on NPR that described the same affect. When a user requested images or text from Chat GPT results that were biased would be returned. If a person asked for a picture containing an African American woman results would contain African American women in service related work like a maid. Those responses were a result from the social biases of the content that the artificial intelligence uses to craft images further perpetuating the racial biases that the learning model was based off of. Nobel shared that these biases are further maintained because the majority of content creators were white males. Since the majority of these algorithm creators share similar social experiences it is not surprising that social biases would show up as a reflection in the outputs of their work.
Quan-Haase, A. (2020b). Technology and society : social networks, power, and inequality (3rd ed., p. 89). Oxford University Press. https://platform.virdocs.com/read/1558595/4/#/4/2
Response 1
I agree that these instances of technological redlining results in the further indoctrination of youth and the general population that use the resources. The internet is used as a repository of human knowledge for access from the whole of our society. If this repository is tinted with social biases it will perpetuate these troupes and oppression of disenfranchised minorities. Work needs to be done increasing diversities in Tech so our technological products better resemble and support the populations that make it up. No one should be boxed in by the assumptions of one particular group.
Response 2
I liked how you equated technological redlining to the lack of availability of technological resources in poorer struggling communities typically made up of minorities. That lack of resources further perpetuates the divides that set those communities apart in the first place. Technology helps provide information that can promote upward mobility and if those resources are only available to wealthier people it will further divide the gaps between the rich and poor and the majority versus the minority. This is further sustained when those technologies shade content with a non-diverse perspective. It can reinforce racial and gender oppressions that is founded in discrimination and bigotry.
Discussion 5
In relation to technology ownership, what is meant by the terms “haves” and “have-nots”?
Initial Post
Technology ownership of the ‘haves’ versus ‘have-nots’ relates to the technology resources that are available to people based on wealth, community, and knowledge that facilitates use. Many technologies have high price tags because of the inputs required for their development and manufacturing. The costs of those technologies get passed on to the consumer that utilizes these tools. When these costs are high there can be a divide from people that can afford the technology and those that can’t. This divide often falls down between the wealthy affluent communities and the marginalized communities further exacerbating divisions between the two. Since some people and communities will fall into the ‘have-not’ side based on lack of resources it will further disenfranchise these people since lack of technology exposure will lead to less people with knowledge and understanding to utilize those innovations.
Response 1
I liked how you related the separation between the ‘haves’ and ‘have-nots’ to the digital divide and gave instances for each side. The associations that you provided explaining how specific technologies give access to more digital resources shows how having technological access gives people an advantage over those that don’t have the same access. I have read a lot of news stories about efforts to reduce this divide through providing high-speed internet access to everyone and promoting education for better economic equality. Promoting diversity in the use and technological knowledge will help reduce some of cultural, economic and geographic disparities that some people face.
Response 2
I agree with your description of the difference between the ‘haves’ and the ‘have-nots’ being based on the access of information and tools used in communication. However, this divide goes a little farther than just access. Without access to various technologies, it will also result in lack of knowledge and understanding in utilizing new innovations which could result in less economic opportunities and upward mobility causing further separations that divides people and communities. Understanding how these disparities are occurring and their consequences will help in creating solutions that facilitate better equality and opportunities for all people especially those living in communities that historically have been marginalized or oppressed.
Discussion 6
Define the term prosumer and illustrate its meaning using an example from your life.
Initial Post
The term prosumer was first used in the 1980’s to describe consumers participating in the production process, where the user takes on roles that were originally performed by the producer. This is observed when producers develop products that are DIY (do-it-yourself) taking previously complicated processes and making them easy enough for a consumer to complete without specialized tools and processes. An instance where I assumed the role of prosumer is the installation of the Starlink Satellite Broadband service. Mounting satellite dishes to a consumer’s home has historically been assumed by a field service technician because of the complicated process of mounting and aligning the consumer dish with the satellite in Earth’s orbit. Starlink expects that this is now a consumer’s responsibility by sending instructions for the completion of this task with the delivery of the hardware. The dish has motorized movements that allow the device to align with satellites on its own. The prosumer must follow a graphical instruction manual to hook up and attach the satellite dish to its mounting apparatus. At first, this task seemed advanced and challenging. However, after looking at and working through the directions the job was simple to complete.
Response 1
I liked your example of being a prosumer to design a picture frame you were obtaining from Etsy. This task was traditionally only completed by the producers and artists of picture frames. New design software and interactive purchasing systems have made it possible for consumers to be more a part of the design of many products now available to the public.
Response 2
I liked how you related the term prosumer to our interactive responses with producers online. An example of this is choosing to share data and diagnostic information with producers of our personal devices like cell phones and personal computers. When consumers agree to share their data to help make products better it could considered a prosumer activity. When users are experiencing technical difficulties with their products and share that data with the manufacturer they are taking an active role in making their current and future functionality better. In the past, this role was the responsibility of the manufacturer to solve these issues before they reached the consumer. Now with the ease of data sharing consumers can take an active role in the development of better devices and software patches.
Discussion 7
The body is often neglected in discussions of technology. What are the three key reasons suggested by the text that make it relevant to bring the body back into discussions of technology?
Initial Post
Body erasure is when the body does not receive consideration in the development of technology. The assigned text cites three reasons why the body should be considered in discussions about technology creation; technology interacts with the body, not all bodies are the same, and technology doesn’t determine the body. Our use of technology is through a close interaction between our bodies and the devices that we are utilizing. For example, when we interact with a cellphone we use multiple senses. We use our eyes to see the screen, our ears to hear the sound, and our hands to manipulate the controls. Without that interaction, the technology would be useless making it imperative that this interaction is as comfortable and easy as possible. People’s bodies vary considerably across society, which needs to be considered when developing new technologies. Workstations for long shifts in manufacturing should take into consideration the variety of body sizes. When working long hours in the same position ergonomics should be considered in the development of tools to complete the work efficiently. If two people are expected to work at the same table and one is 5′ and one is 7′ there should be a height adjustment for the workstation to prevent injuries due to the awkwardness of how the worker must use their body to complete the task. New technological advancements shouldn’t determine how we see the body either. An example of this can be seen in the emerging use of artificial intelligence. When asking AI to write or make an image about a specific race or gender the learning machine may create content that reinforces unfair stereotypes that are prevalent in society. Greater effort should be made to prevent instances like this so it doesn’t make a difference in the body of the subject. Every body should have fair and equal representation in the technology’s creation.
Response 1
I liked how you equated the body to a machine. When viewing the body this way in the creation of technology it becomes harder to dismiss the interactions between the person and the creation. A developer wouldn’t dismiss problems with how the needle attaches to the tubing of an IV set in the same way a developer shouldn’t dismiss how the needle is inserted into the arm. The body is indeed fascinating in how it collects messages from our senses sends them to the brain for computation and sends messages back out for direction. Understanding these interactions and how they affect our use of technology will promote better innovations and how to utilize them.
Response 2
Your post was thorough and well thought out. I liked how you raised the point about roller coasters not being created for larger-sized people. In a society that has a population with a demographic that has a high percentage of large people, more consideration should be made for body size. I have experienced many situations where members of my social group are left out because the technology we want to use won’t accommodate a larger size. If seats are too small in a restaurant or arcade large people may begin to feel left out and won’t receive the same intended experiences as all paying customers.
Discussion 8
What are the key distinctions between the terms drama and cyberbullying? Why do you think that teens are more likely to employ the term drama while parents and caregivers employ cyberbullying? Explain how the different terminology can make it difficult to create effective intervention methods that support youth.
Initial Post
Cyberbullying is defined as continued and recurrent behavior to hurt another internet user. While drama can be understood as being performative and interpersonal dissidence taking place in front of an active audience, sometimes online. These two terms can be viewed as synonyms depending on the person using the term. Young people are more likely to view conflict online as drama because a lot of their socialization takes place in cyberspace. Disagreements may be viewed by the participants as a normal dispute despite others observing their communications as being abusive attacks. Parents and caregivers want to protect their young people from distress and conflict whenever possible. They will more likely view a conflict as destructive and damaging to encourage the distress and anxiety to stop. Using different terminologies can make communication difficult because one party understands a concept differently than another. When trying to educate and prevent an activity both parties must be looking at the concept in the same way to motivate change. Otherwise, both groups are working at resolving two different situations.
Response 1
Good discussion post! I disagree that there isn’t a power imbalance when using the term drama. To me, drama feels more like an understandable conflict, whereas cyberbullying seems more like a direct aggravated attack. Just because there is drama doesn’t mean both parties have an equal amount of power in a disagreement. Our two different opinions on how to define the differences between these two words are at the core of where the problem is when discussing this issue. When one person takes the meaning of a word differently than another it is difficult to come to a consensus on how to resolve the situation.
Response 2
Great perspective! I like how you described cyberbullying as when one side is clearly labeled as the perpetrator. This can be a difficult label when discussing the interactions of young people online. If two parties in a conflict both contribute challenging behavior during communication it is difficult to label the confrontation as clearly one-sided. This lack of clarity in discussing online conflict can result in young people viewing interactions as typical discourse, while adults may view the communications as destructive. Perhaps a better way to address this issue is to break down the language and discussions taking place to focus on the meaning and results of the dialog. Discussing the dialog and its ramifications could help young people and adults come to a consensus on what is the best and most appropriate online discourse, as opposed to using ambiguous symbols to represent intent.
Research Paper
- Identify a topic/issue you are interested that is and/or will be covered in class, for example, technology and inequality, the surveillance society, or technology and risk.
- You should choose a topic that interests you. The topic must connect to the course associated literature to that subject. Utilizing the course text and readings and other peer-reviewed academic journals and/or books you are required to produce a research paper on your chosen topic. Remember to always think and write from a sociological perspective.
The Intersectionality of Technology and Health
Dr. Charles Gray
Old Dominion University
By Adam Haas
4/3/2024
Introduction
Technology has revolutionized how societies and individuals view and interact with their bodies and how they care for them. This paper focuses on 4 aspects of how technology has transformed the way people and society understand, interact, and experience health. These four areas are datafication of health, security, Internet of Things (IoT), and ease of access to medical knowledge. They have transformed the way health is experienced and understood, providing many benefits and challenges completely changing how well-being and healthcare is viewed, operated, and are utilized by people. Technology is continuously being innovated and improved upon, completely changing how society interacts and identifies itself.
Datafication of Health Information
One of the key aspects of how technology has changed society is datafication. It is defined as, “the conversion of qualitative aspects of life into quantified data” (Ruckenstein & Schüll, 2017). The use of information systems has enabled people to collect, study, and use data to improve, market, and track the health of individuals and groups. This use of technology is changing how people understand and respond to the state of their health and bodies. These innovations are improving people’s access to medical records, tracking vitals, and understanding population-wide trends. One of the ways that data is being recorded and stored is the use of the electronic health record (EHR). The development of EHRs has improved patient care by making personal medical data easily accessible, available, and interactive (Coventry & Branley, 2018). Using health platforms for this use has made interactions with records more user friendly and accessible. Another technological development that is improving and cataloging data concerning people’s bodies are health devices. Some examples of devices used in tracking vitals and changing the body are fitness trackers that double as wrist watches and glucose monitors that record blood sugar levels. These devices record and transmit data concerning people’s experience and interactions with their health. The use of medical devices is expanded upon later in this paper in the section on the IoT. Medical researchers and professionals are able to aggregate and use these large collections of data to understand population-wide parallels and conjectures allowing for recommendations to the public on healthy activities, epidemiology, and care (Ruckenstein & Schüll, 2017). Health datafication has offered people and societies various resources that assist in their understanding and access to information that has been previously difficult to obtain.
The benefits of new health technologies are paired with complications that need mitigation to protect the privacy and health of the individuals whose data is being collected. Some challenges that have resulted from this embrace of health datafication are commodification, objectification, information security, and exploitation of people’s personal relationship with their bodies. Organizations that collect this information have begun to treat this data as a commodity that can be collected and sold. Companies that archive it sometimes encourage users to use their devices and services by offering promotional gifts to encourage their health data contributions. The user’s participation and data contributions can be viewed as unpaid digital labor that is being utilized by businesses as biocapital. These uses of data have expanded the goals of organizations from improving the health of users to being used as data points to improve research and industry (Ruckenstein & Schüll, 2017). This idea of quantifying health has objectified the users by removing the personal human element that has previously been associated with the individuals’ relationship with their body. The security of health data is a growing challenge that is becoming more problematic with increased use in the datafication and digitization of health information. It is covered more in depth later in this paper under the heading Health Information Security. The collection of data concerning people’s health has allowed companies to exploit their information for the purposes of increasing organizational wealth. Businesses often encourage employees to use health tracking programs with incentivized healthy behavior programs or discounted insurance premiums for participation in activities like smoking cessation and increasing exercise. Organizations collect data which can be used against users in future situations. This data can later exploit people through population management, control, discrimination, and exclusion (Ruckenstein & Schüll, 2017). The datafication of health offers lots of benefits and challenges that are changing society and culture rapidly requiring close scrutiny to ensure society is moving the best way forward. Careful research and policy are needed to make sure these new technologies are offering the best possible developments.
Health Information Security
Many aspects of how society views and participates in health is rapidly changing due to emerging technologies and datafication which has created new vulnerabilities that need protections and security to protect individuals, the public, and institutions. The health industry has had a large increase in breaches over the last couple of years resulting in decreased patient safety, loss of trustworthiness, and monetary damage. Since at least 2015 the leading cause in breaches of health data is unauthorized intrusion also known as hacking. (Coventry & Branley, 2018). Medical records are full of personal data like illness diagnosis, lab results, and care options. People rightly fear that their private health information could become compromised in privacy breaches of intimate information resulting in the exposure of embarrassing data, rejection by health insurance companies, or deferment by employers due to preexisting conditions (Kim & Solomon, 2018, pp. 461–466). Protecting this information is crucial to keeping the trust of the public and establishing a properly functioning healthcare system.
The health industry is a crucial area of a society’s critical infrastructure because it represents the well being and care of the people that sustain it. The United States recognized the importance of securing health information with the creation of HIPPA, the Health Insurance and Portability and Accountability Act in 1996 and its 2009 amendment the HITECH, Health Information Technology for Economic and Clinical Health Act. These laws offer citizens protections on their individually identifiable health data and the adoption and standardization of health information technology (Kim & Solomon, 2018, pp. 461–466). Safeguards like health legislation are necessary in protecting people from malicious breaches that can distress and disrupt society and its infrastructure. As new technologies emerge innovators will need to continuously create solutions for vulnerabilities that develop as a result.
Internet of Things
An emerging technology that is changing how people view, track, and understand their health are electronic machines referred to as IoT devices. This equipment offers individuals information about their state of health, how it is performing, and health augmentation. According to the research (Kelly et al., 2020),
“The Internet of Things (IoT) is a system of wireless, interrelated, and connected digital devices that can collect, send, and store data over a network without requiring human-to-human or human-to-computer interaction. The IoT promises many benefits to streamlining and enhancing health care delivery to proactively predict health issues and diagnose, treat, and monitor patients both in and out of the hospital.”
These new technologies are offering new ways to monitor, understand, treat, and track health that haven’t been achieved before. These new benefits are determinative and are improving things like identifying risk factors, diagnosing diseases, treatment, tracking vitals remotely, and enabling people to manage their own care (Kelly et al., 2020). IoT is increasing the observability and trialability of health and technology in society by providing clear insight on trends and treatments.
The use of IoT devices is becoming more and more ubiquitous because of the many uses and benefits that this type of health technology enables. People are progressively adopting IoT services through using their own mobile applications that are now available to interface with telehealth, assisting with disease and care strategy. The use of these emerging services is growing rapidly. According to Coventry and Branley (2018), 10 to 15 IoT devices are available per US hospital bed that offer perks like the reduction of medical errors, increased efficiency, automation, and remote health observation. The rate of adoption is exponentially increasing as the uses and applications of devices are realized. Kelly et al. (2020) reported, 21 billion devices were estimated to be internet connected, a five times increase from four years prior. The use of these services are supplying exemplary, affordable medical care. This rapid adoption of comprehensive medical devices is changing how society views and interacts with healthcare, completely revolutionizing people’s relationship with their bodies.
Increased Access to Medical Knowledge
Technology is empowering people to be their own biggest advocates, researchers, and supporters. The information age is connecting people with information, each other, and their health in new and beneficial ways that is helping improve quality of life. Researchers Ashtari and Taylor (2022) noted that adults in the US in 2018 searched the internet 59% more for health information then in 2013. 67% of people noted they use social media for learning health related information. People are gaining more availability and access to knowledge through connectedness with information technologies giving them resources that were previously difficult or unavailable.
Finding information about obscure conditions and symptoms is particularly helpful with the use of internet technology. Ashtari and Taylor (2022) found that over 400 million people have one or more of the 7000 determined rare diseases in the world today. Individuals that are dealing with rare and difficult to diagnose diseases are sometimes challenged by obtaining care because providers are unfamiliar with their condition. People diagnosed with disorders often have similar life expectancy to healthy individuals, but with a reduced quality of life. If the disorders are genetic there are no cures resulting in patients needing to cope with pain management to improve life quality. One rare genetic disorder Ehlers-Danlos Syndrome (EDS), a connective tissue disorder that affects skin, blood vessels, bones, and other parts of the body results in symptoms of constant pain and difficulty in receiving a diagnosis. Typically it takes people living with EDS six to eight years to receive an accurate diagnosis. According to researchers Ashtari & Taylor (2022), most people living with EDS actively search the web to learn about their condition and ways to manage it. They use online support groups, research information about symptoms, body positioning tactics to obtain relief, and pain coping activities. Patients with EDS were most benefited by finding peer support groups online because it provided them with an empathetic community that improved their mental health by feeling less alone, acting as a stress reducer, and assisting in pain management and reduction. Individuals are able to share common experiences and challenges demonstrating their membership to this online community giving them a sense of belonging and support. The internet is full of valuable open source information that is especially worthwhile in understanding one’s own health and body. This resource is specifically helpful in providing insight to rare and challenging diseases and conditions. People find community and support using social media and online research to understand their bodies and quality of life better.
Conclusion
Rapidly advancing technology is revolutionizing how people track, understand, treat, and find community regarding their relationship with their health. These innovations are offering people better qualities of life and knowledge coupled with challenges to their privacy, security, and objectivization. The datafication of peoples quantified self are giving them insight on their health and wellbeing and unfortunately contributing to their commodification and marketability. Datafication and interconnectedness has enabled the use of EHRs that gives patents and providers easy, seamless interconnectedness that is enhancing care and access to medical information. These new technological changes are creating healthcare vulnerabilities resulting in new laws, policies, and mitigating security practices. New protections will need constant revisiting and revising as new developments continue to be invented and adopted. The IoT is fueling these new changes, contributing to the datafication of health and how individuals understand themselves and the broad trends of society, giving people a digitally interfaced relationship with providers and their own bodies. Resources and research are more available and searchable to the general public than ever before, which are assisting in providing community and commonality for rare and unique health situations. Together the intersectionality of health and technology is completely changing how society interacts and understands people’s relationship with their bodies and health.
References
Ashtari, S., & Taylor, A. D. (2022). The Internet Knows More Than My Doctor: A Qualitative Study of People with Rare Diseases and How They Use Online Support Groups (Preprint). Journal of Medical Internet Research, 24(8). https://doi.org/10.2196/39172
Coventry, L., & Branley, D. (2018). Cybersecurity in healthcare: A narrative review of trends, threats and ways forward. Maturitas, 113, 48–52. https://doi.org/10.1016/j.maturitas.2018.04.008
Kelly, J. T., Campbell, K. L., Gong, E., & Scuffham, P. (2020). The internet of things: Impact and implications for healthcare delivery. Journal of Medical Internet Research, 22(11). https://doi.org/10.2196/20135
Kim, D., & Solomon, M. (2018). Fundamentals of information systems security (3rd ed., pp. 461–466). Jones & Bartlett Learning.
Ruckenstein, M., & Schüll, N. D. (2017). The Datafication of Health. Annual Review of Anthropology, 46(1), 261–278. JSTOR. https://doi.org/10.1146/annurev-anthro-102116-041244