User perceptions on the privacy of health information

Activity trackers have become more common and they enable the collection of information about an individual’s physical activities and health. Traditionally a person’s health information was stored in the health care provider’s databases, but now health information is being stored in multiple service...

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Bibliographic Details
Main Author: Lehto, Miikael
Other Authors: Informaatioteknologian tiedekunta, Faculty of Information Technology, Tietojenkäsittelytieteiden laitos, Department of Computer Science and Information Systems, University of Jyväskylä, Jyväskylän yliopisto
Format: Master's thesis
Language:eng
Published: 2016
Subjects:
Online Access: https://jyx.jyu.fi/handle/123456789/52268
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author Lehto, Miikael
author2 Informaatioteknologian tiedekunta Faculty of Information Technology Tietojenkäsittelytieteiden laitos Department of Computer Science and Information Systems University of Jyväskylä Jyväskylän yliopisto
author_facet Lehto, Miikael Informaatioteknologian tiedekunta Faculty of Information Technology Tietojenkäsittelytieteiden laitos Department of Computer Science and Information Systems University of Jyväskylä Jyväskylän yliopisto Lehto, Miikael Informaatioteknologian tiedekunta Faculty of Information Technology Tietojenkäsittelytieteiden laitos Department of Computer Science and Information Systems University of Jyväskylä Jyväskylän yliopisto
author_sort Lehto, Miikael
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description Activity trackers have become more common and they enable the collection of information about an individual’s physical activities and health. Traditionally a person’s health information was stored in the health care provider’s databases, but now health information is being stored in multiple services. This change has brought new ways to utilize technologies in the area of health and wellness, but at the same time questions have surfaced concerning the privacy of an individual’s information. This thesis discusses a study regarding the user perception on the privacy and sensitivity of health information collected with wearable devices. The study also explored the user perception on health information sensitivity in general, and their willingness to share such information to other parties. The study used qualitative research approach to collect empirical data and used themed interviews as the tool. Ten individuals who currently use an activity tracker were interviewed for the study. Privacy calculus model was used as a theoretical lens through out the study, which also guided the analysis of findings. The study found that individual’s don’t perceive the information collected by wearable devices as private or sensitive, but as general information. On the other hand, information in health records is considered to be very private and sensitive and much more specific, as they include additional personal information in written format. The study found that individuals do not share information from their wearable devices on social media. Users are willing to provide their information to doctors if it can be used in their health care. Individuals are also willing to provide their information for medical research and allow the device manufacturer to use the information for improving products and services. Even though the individuals are willing to share their information for different purposes, they had privacy concerns and worried how their information is used. They were concerned how information might spread to other parties and how it might be misused. Privacy concerns did not have a significant impact on the majority of the users as they accepted these risks. This thesis expands the previous research by presenting a new context in which privacy calculus theory can by utilized. Research findings have benefits for practice as the information collected with activity trackers can be utilized in the future for health care and research, since users are willing to share it. Aktiivisuusrannekkeet ovat yleistyneet ja ne mahdollistavat tietojen keräämisen henkilön fyysisestä aktiivisuudesta ja terveydestä. Henkilön terveystiedot ovat perinteisesti olleet vain terveydenhuollon tietokannoissa, mutta nykyään terveystietoja tallennetaan moniin palveluihin. Tämä muutos on tuonut uusia teknologian hyödyntämismahdollisuuksia terveyden ja hyvinvoinnin alueella, mutta samalla on herännyt kysymyksiä henkilöiden yksityisyyteen liittyen. Tämä tutkielma käsittelee tutkimustuloksia, joissa selvitettiin käyttäjien kokemuksia aktiivisuusrannekkeilla kerätyn terveystiedon yksityisyydestä ja arkaluontoisuudesta. Tutkimuksessa selvitettiin myös tutkittavien ajatuksia terveystiedon yksityisyydestä yleisesti ja heidän halukkuudestaan jakaa heistä kerättyjä tietoja eri osapuolille. Tutkimuksen empiirinen aineisto kerättiin käyttämällä laadullista tutkimusmenetelmää ja työkaluna teemahaastatteluita. Privacy calculus -mallia käytettiin tutkimuksen teoreettisena viitekehyksenä, joka myös ohjasi tuloksien analysointia ja luokittelua. Tutkimus on tehty haastattelemalla kymmentä henkilöä, joilla oli aktiivisuusranneke tutkimushetkellä käytössä. Tutkimuksen tuloksena ilmeni, että henkilöt eivät pidä aktiivisuusrannekkeiden tietoja yksityisinä tai arkaluontoisina vaan yleisinä. Toisaalta henkilöiden mielestä heidän lääkäreillä olevat terveystietonsa ovat hyvin yksityisiä ja arkaluontoisia. Lääkäreillä olevat tiedot koettiin yksityiskohtaisiksi, koska ne sisältävät henkilökohtaista tietoa myös kirjallisessa muodossa. Tutkimuksessa selvisi että käyttäjät eivät jaa aktiivisuusrannekkeidensa tietoja sosiaalisessa mediassa. Käyttäjät olivat valmiita antamaan keräämiään tietoja lääkärille, mikäli niistä olisi hyötyä heidän terveydenhoidossaan. Käyttäjät olivat myös valmiita antamaan tietojaan lääketieteelliseen tutkimukseen sekä antamaan laitevalmistajan käyttää tietoja tuotteiden ja palveluiden kehittämiseen. Vaikkakin henkilöillä oli yleisesti valmius jakaa tietoja eri käyttötarkoituksiin, he kuitenkin kantoivat huolta yksityisyydestään ja tietojensa käytöstä. He olivat huolissaan tietojen mahdollisesta leviämisestä toisille osapuolille ja niiden väärinkäyttämisestä. Huoli yksityisyydestä ei kuitenkaan vaikuttanut merkittävästi suurimpaan osaan käyttäjistä, vaan he hyväksyivät nämä riskit. Tämä tutkielmaa laajentaa aiempaa tutkimustietoa esittämällä uuden kontekstin, johon privacy calculus -teoriaa voidaan hyödyntää. Tutkimuksen tuloksista on käytännön hyötyä, koska aktiivisuus- rannekkeiden keräämiä tietoja voidaan tulevaisuudessa hyödyntää terveydenhuollossa ja tutkimuksissa, koska käyttäjät ovat valmiita jakamaan niiden tietoja.
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Traditionally a person\u2019s health information was stored in the health care provider\u2019s databases, but now health information is being stored in multiple services. This change has brought new ways to utilize technologies in the area of health and wellness, but at the same time questions have surfaced concerning the privacy of an individual\u2019s information. This thesis discusses a study regarding the user perception on the privacy and sensitivity of health information collected with wearable devices. The study also explored the user perception on health information sensitivity in general, and their willingness to share such information to other parties. The study used qualitative research approach to collect empirical data and used themed interviews as the tool. Ten individuals who currently use an activity tracker were interviewed for the study. Privacy calculus model was used as a theoretical lens through out the study, which also guided the analysis of findings. 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spellingShingle Lehto, Miikael User perceptions on the privacy of health information privacy health information activity trackers kyberturvallisuus hyvinvointiteknologia yksityisyys Tietojenkäsittelytiede 601
title User perceptions on the privacy of health information
title_full User perceptions on the privacy of health information
title_fullStr User perceptions on the privacy of health information User perceptions on the privacy of health information
title_full_unstemmed User perceptions on the privacy of health information User perceptions on the privacy of health information
title_short User perceptions on the privacy of health information
title_sort user perceptions on the privacy of health information
title_txtP User perceptions on the privacy of health information
topic privacy health information activity trackers kyberturvallisuus hyvinvointiteknologia yksityisyys Tietojenkäsittelytiede 601
topic_facet 601 Tietojenkäsittelytiede activity trackers health information hyvinvointiteknologia kyberturvallisuus privacy yksityisyys
url https://jyx.jyu.fi/handle/123456789/52268 http://www.urn.fi/URN:NBN:fi:jyu-201612125040
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