The document discusses a study on users' perspectives on companies analyzing their social media data and using algorithms to identify mental health from social media use. Interviews were conducted with 18 participants. For analyzing personal data, most did not mind, some were conflicted, and others did not like it. For data accuracy, most felt it did not accurately represent them. Regarding mental health identification without consent, some were okay, others unsure, some said it depends, and most were not okay. In conclusion, social media data may provide insights but is not an accurate sole source for mental health diagnosis, and users should consent to data use and analysis.

1. Allison Manzo
The goal of this study was to get a better understanding of how users’ feel about the
collection of their data on social media and its’ usage for mental health. A large majority of
society uses social media so it is imperative to understand their usage. Furthermore, this
enormous amount of people using social media allows companies to collect large quantities of
data. However, not many people are aware that companies are collecting this data from their
social media accounts. Thus, we need to understand the perspective of how people feel about
companies analyzing their data and if it is representative of them:
RQ1: How do you feel about companies analyzing your personal data?
RQ2: Do you think the data being collected accurately represents you?
The other main purpose of this study was to understand how users felt about mental
health algorithms through social media. Mental health is an extremely important topic that is
becoming more relevant in society. Through social media and algorithms, computers are able to
diagnose a users’ mental health. With this knowledge, it is crucial to understand how users
would feel about this diagnosis and accuracy of it:
RQ3: How would you feel if someone identified your own mental health without your consent?
The first person I interviewed was a 26-year-old white male that is currently obtaining his
Masters in Biology at William Paterson University. He is tech savvy and enjoys playing video
games in his spare time. However, this participant is not an avid user of social media and only
uses Facebook. He uses Facebook as a form of communication between friends but doesn’t
engage in posting. Furthermore, he only posts content to Facebook once or twice a year.
The second person I interviewed was a 23-year-old middle-eastern male that is currently
obtaining his Bachelors in Culinary Arts at the Culinary Institute of America. He is
knowledgeable with technology and likes to play video games. The only social media platform
he uses is Facebook. He communicates with friends everyday through Facebook messenger but
rarely engages on Facebook itself. He hardly ever posts anything but will like or comment on
someone else’s posts.
The first research question concerned how users felt about companies analyzing their
personal data. (RQ1: How do you feel about companies analyzing your personal data?) For this
research question, I analyzed 18 transcripts and found 3 patterns within them. Generally, people
didn’t mind companies analyzing their personal data, were conflicted, or did not like that
companies were analyzing their personal data. To start, 10 out of the 18 participants did not care
that companies were analyzing their personal data. These people were not bothered by this
collection of data and found it to be okay for companies to do. For example, Ama1 stated:
“I don’t generally care because as I’ve said I use mine [social media] so little and put so little
information on it. They aren’t going to learn a great deal from looking at me.”
These participants normally didn’t mind because they didn’t use their social media very often.
Moreover, they only posted information that they were comfortable with other people knowing.
Additionally, there was 1 person who was conflicted and found that it depended on the
scenario. For the first research question, Dch1 exclaimed:

2. “I don’t know. Hold on I can elaborate. I don’t know. One because I’m making the information
available and I am personally putting this information out there. The mass marketer in me is like
yeah that’s totally fine. You’re just going to be a number somewhere, so do I really need to
worry about identity theft in that sense if it’s being sold to a corporation? Where I get worried is
to who these corporations are selling this data to. For example, Facebook. They have all this
information and that’s what they do. They allow advertisers to come onto their website and they
can then fish for your information, so that’s where I get kind of nervous, but I’m super
conflicted.”
This participant is very conflicted because they see both sides of it. They are fine with it when
they view it as just being a number in an assortment of vast data but they aren’t fine when they
consider who the data goes to. Thus, they would really find that it depends on the data and who it
is going to.
Lastly, the final 7 interviewees did not like that companies were analyzing their personal
data. They slightly swayed on how they felt emotionally about it but all, unquestionably, disliked
it. For reference, Esa2 said:
“I don’t really feel comfortable. I understand that some companies do research, when I was
doing my Masters I had to do quantitative research and you can use programs to scan a
database and make graphs. But, me personally, am not comfortable with it.”
Most of these participants agreed with Esa2 and felt uncomfortable. Alongside feeling
uncomfortable, some of those interviewees were mad or creeped out. Commonly, they all found
that personal data should not be analyzed and should be private. Although most of them
understood that this analyzation of data is expected with the advancement of research and
technology, they still didn’t agree or like it.
To conclude the results of the first research question, there is a clear divide in the
answers. Considering our results, approximately 55% of participants didn’t mind it, 40% did
mind it, and 5% were undetermined. The interviewees, for the most part, were on either sides of
the spectrum in terms of being okay or not okay with this analyzation of personal data. Thus,
there is no conclusive answer to this question because there are mixed opinions.
The second research question was about the accuracy of the data collected. (RQ2: Do you
think data being collected accurately represents you?) I based my analysis off of 18 transcripts
and found 4 different patterns. Furthermore, participants would answer that the data did not
accurately represent them, somewhat represented them, were unsure if it would represent them,
or did represent them. Firstly, 6 out of the 18 interviewees found that the collected did not
represent them accurately. For instance, Ama1 exclaimed:
“No, I feel, uh, the things I post online are random enough that you would get the wrong idea
about who I am.”
These interviewees stated similar opinions to Ama1 and found that the data would inaccurately
represent them. Others, also, said that the information collected could be false or that they don’t
post enough information for people to understand who they are. Some of these participants said
that they used sarcasm or exaggeration on social media, so, third parties would misunderstand.
Thus, their data online could be misleading and would definitely not represent who they truly
are.

3. A lot of the participants claimed that this data would somewhat accurately represent
them. Wsm1 stated:
“See that's kind of a black and white question there in a sense. To an extent certain things, I
would say maybe back in the day like yeah like it would maybe represent me. Let’s say I post a
screenshot but not at the same time. I feel like you have to get to know the person like the
physical person to get the full story.”
The people who were categorized in this pattern thought that this data represented some of
themselves but not all of themselves. Likewise, they expressed that this data would usually only
provide demographic information. The participants did not believe that the data could portray
their personality, beliefs, or thoughts. Moreover, it would only give a moderate understanding
into who they were.
Next, there were three people who were unsure if the data would accurately represent
them. To further explain, Ago1 said:
“I mean I would have to see the data, to make a comparison, but I don't know what they know
about me.”
These three participants exclaimed that they couldn’t necessarily say if it would represent them
unless they knew what data had been collected. They, similarly, believe that the accuracy would
strictly depend on the type and quantity of data. Thus, they think that it might represent them or
might not represent them depending on what has been collecting.
Finally, only one person thought that this data accurately represented them. When
answering whether the data being collected accurately represents you, Jpla1 declared:
“Yeah.”
Unfortunately, this participant didn’t further explain why he felt this way. Thus, we can only
determine that he does agree that the collected data would represent him. In conclusion, it is clear
that participants do not think that the data being collected would accurately represent them.
Considering that only 1 out of the 18 participants did agree, we can determine that this data is
inaccurate as a representation of the user.
The third research question went over how people would feel if someone identified their
mental health without their consent. (RQ3: How would you feel if someone identified your own
mental health without your consent?) I analyzed this question with 18 transcripts and found 4
various patterns. The participants’ common patterns are that they would be okay if someone
identified their mental health without their consent, didn’t know how they would feel, think that
it would depend on the scenario, or would not be okay if someone identified their mental health
without their consent. To begin with, 4 out of the 18 interviewees were okay if someone detected
their mental health without their permission. Such as, Dch1 voiced:
“I’m kind of ok with that. I’m a big advocate for speaking up about mental health. I think that
specifically, I have close family and friends who have problems with mental health so maybe
some people need this third party recognition to understand that they have a problem.”
Dch1 explained that they would be okay with this because it might be helpful for a lot of people.
They feel like having a third party identifying mental health issues could be beneficial to people
who are unaware of their problems. Correspondingly, the other three participants were fine with
people diagnosing them because it would be beneficial.

4. Following this, a few interviewees didn’t know how they would feel about someone
classifying their mental health without their agreement. These two participants were at odds with
this question, for example, Yega1 stated:
“Um I don’t know if I’d like that I think if social media would judge that from what I posted I
would like that in a setting and asking me that, not just them going ahead and doing it.”
Yega1 and the other interviewee weren’t sure how they felt. However, they clarified that they
would rather the companies ask beforehand and assert this information in a more intimate
setting. Nevertheless, they didn’t necessarily express dislike in their mental health being
analyzed.
In addition, a group of interviewees expressed that their feeling on this question would
depend on the situation. To show this, Mva1 said:
“Uhmmmm, I mean yeah… I would feel like, you know, I would feel like they intruded but at the
same time I would try to look at it in a positive way because you know maybe that person sees
something that you don’t so it definitely has its pros and cons.”
Mva1 declared that they found it to be intrusive but helpful. These four participants all
considered that this diagnosis would be advantageous for people who are suffering with mental
illnesses. However, they also did believe that it could be invasive or inaccurate. Therefore, it
would depend on the accuracy of the analysis and need of the individual for this to be okay to do.
Lastly, 8 out of the 18 participants would not like it if someone identified their mental
health without their consent. For example, Ago1 stated:
“I wouldn't be very comfortable with that. I would like to know that I'm being examined and
judged.”
These interviewees mutually felt that this identification would make them feel uncomfortable
and would be invading their privacy. As Ago1 exclaimed, they don’t like that they aren’t being
informed of this examination and judgement. From the results on the third research question, it is
shown that most people are uncomfortable with this diagnosis and would like to be informed.
Most of them did think that this could be potentially beneficial but only if they were aware and if
it was accurate.
Based on my analysis, I think that society should reconsider the privacy and awareness of
users. Moreover, companies should reassess the accuracy of social media data, as well as, the
appropriateness of using it for identifying mental health. To start, a majority of interviewees felt
that their privacy was being invaded since their personal data was being gathered for research.
Additionally, most participants were uncomfortable that they were uninformed of this collection
and analysis of information. Taking into account their opinions, I believe that social media
companies should inform users when they collect data from them. Also, I think that
policymakers and social media companies should consider tightening the privacy rights of users.
Therefore, third parties would need the consent of the user before they collected data.
Furthermore, nearly all interviewees didn’t think that their social media data would
accurately represent them as a person. It might give an insight into who they are but not who
they are completely. Considering this, the data could also give misleading information
concerning mental illnesses. This study showed that a lot of people lied, were sarcastic, or would
exaggerate on social media which can give the wrong idea to onlookers. Third parties could
misinterpret what they expressed on social media sites because they weren’t being realistic or
honest. Thus, the usage of social media data as material to identify mental health could be
extremely imprecise. Instead of social media companies deciphering mental health, they should
give the information to health companies who have a better understanding on these illnesses.

5. Health companies and professionals who have experience and knowledge in mental health would
more appropriately diagnose mental health.
To conclude, using algorithms to identify mental health with social media data should be
reevaluated. With the information I collected, I can deduce that social media can be an inaccurate
source to diagnose mental health. Social media companies should have enhanced privacy
policies and ask users before using their data. Health companies and professionals should be the
only people who can diagnose mental health. Policymakers should make companies accountable
for collecting data without the consent of the user. In conclusion, there is potential to use social
media data as a source for detecting mental health but it shouldn’t be the only source, and, users
should be aware before they are analyzed.