Audio Transcript Auto-generated
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Hi, My name is Kyra Clark and I did my
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Summer Fellows Research Project on representation in Accessibility and Patient
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Advocacy Organizations.
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A patient advocacy organization is organization that advocates for the
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awareness treatment research of a particular condition.
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These organizations often have educational information on their websites for
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symptoms, treatments resource somewhere to get help and statistical information
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on prevalence, I decided to focus on the statistical information
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of prevalence and how it may directly correlate to the
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type of diverse representation that is on the patient advocacy
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organization supporting directors.
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However, this is not how I started my project during
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the summer.
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Earlier on, my original project looked at how med school
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textbooks may cause implicit biases and students.
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But when I had difficulty finding in accessing textbooks, I
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decided to look at medical literature and standardized testing related
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to midst schools.
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In doing so, I came across a piece and advocacy
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organizations website and the type of statistical information they had
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on prevalence of the disorder that they were advocating for.
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I noticed that they didn't have a lot of my
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birth statistical information, such as information on the prevalence among
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certain racial and ethnic roots, but Rather, they just had
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general statistics about the American population, and I wondered if
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this was a commonality amongst all patient advocacy organizations.
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So that's how I ended up my final project, which
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is issues of representation and mental illness, patient advocacy organizations
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and how that hat may or may not have a
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direct impact on the type of diverse statistical information that
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they provide.
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Wonder websites a specific aims.
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What this project was to answer.
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Two questions.
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Is there a link between representation and gate keeping and
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already sites accessible?
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Gay Heaping is a specific type of discrimination that prevents
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access of certain groups by being either generally unfriendly or
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of the wise limiting in.
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And I want to deceive.
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I could find a direct correlation, a link between what
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looked like certain types of gate keeping by not providing
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diverse statistical information in representation shown on the board.
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I also wanted to see if the sites were accessible
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to everyone.
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Meaning could people of certain disabilities access the websites and
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be able to find all the information on the Web
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sites because if they couldn't, that creates a major problem
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in which somebody who suffers from a particular mental illness
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but also happens to have a disability, isn't able to
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access all the information that they should be able to
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access. As faras representation goes, it is important to keep
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in mind that not all patients are advocates and not
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all advocates of patients, meaning that not everybody has a
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particular mental illness.
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There's going to be an advocate for that mental illness
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and not every advocate for mental on this, if somebody
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who has it.
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And while that is true, it is still important to
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know that people with a mental illness and family members
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of people with them, until in this give a certain
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type of invaluable perspective that even the best experts on
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a mental illness simply don't have this.
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With this in mind, I looked at how many people
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on the board of directors of patient advocacy organizations.
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They looked at self identified as somebody with the condition,
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and I found that while all of the organizations stated
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that they were founded by somebody who struck with with
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the Minto Onus Onley, the Schizophrenia and Related Disorders Alliance
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of America has a current board member who self identifies
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as someone what schizo effective disorder which is a related
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sorted to schizophrenia.
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This is not to say that I can say for
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sure that none of the other patient advocacy organizations have
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a board member that has mental illness that they are
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advocating for but to say that Onley, this particular organization
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has somebody who self identified in their bio as a
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person who struggles with mental illness that they're advocating for.
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In addition, Onley, the Schizophrenia and Related Disorders Alliance of
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America, and Mirror Mirror, which is a eating disorder patient
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advocacy organization, have born members who is family family members
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with them mental illnesses.
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This means that three out of the five organizations that
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I looked at our Onley composed of experts, which prevents
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them from having a inside a point of view in
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may contribute to a certain lack of insights that only
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somebody with the mental illness or family member of somebody
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with them the illness can provide.
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Future research should look at other types of diversity, such
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as racial, ethnic and religious diapers on the board of
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directors, because it is these types of diversity that may
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further contribute to the types of diverse statistical information the
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website provides such as information on prevalence amongst certain ethnic
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groups. While I did not go deep into this topic
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during my Summer Fellows research, I did notice that one
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a surface level, the Onley website that has in depth
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statistical information on racial, ethnic, gender and sexual orientation was
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mirror mirror, meaning that only they painted a fully comprehensive
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picture of prevalence amongst different communities.
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As far as accessibility goes, I found that all but
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one of the websites seemed to genuinely struggle with accessibility.
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I used the accessibility checker wave to find accessibility, features
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and accessibility errors amongst the Web pages of the patient
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advocacy organizations.
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Mirror Mirror was by far the best.
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It had zero errors.
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One contrast error, meaning there was one error of readability
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and 136.
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A R I A Features and a R.
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I. A feature is an assistive technology feature that makes
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the webpage more readable to somebody with a disability.
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In stark contrast to Mirror Mirror, the Anxiety Depression Association
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of America had 146 errors ah, 148 contrast errors and
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110 Air I A features.
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Now, while they do have a wry features is if
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know that amount of errors in amount of conference errors
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likely counterbalances each other and makes accessibility technology unusable.
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Why does this matter?
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How is this significant?
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It is significant because a lack of diverse statistical information
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can lead to misleading and potentially harmful information for people
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struggling with the condition, because it can encourage certain stigmas
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or encouraged the misconceptions that certain groups don't struggle with
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these mental illnesses.
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And issue of accessibility is that if not everybody who
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struggles with the illness is able to get the help
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they need, or even just read the website that you
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proclaim to be advocating for the mental illness that they
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have, they're not really a part of the group that
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you're advocating for, which is a problem.
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I hope that this lays a good ground work for
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potential future research.