Feasibility analysis of the privacy attributes of the personal wellness information model

Feasibili y Analysis o he P i acy A ibu es o he Pe sonal Wellness In o ma ion Model Pi kko Nykänena, An o Seppäläa, Pekka Ruo salainena, Be nd Blobelb aSchool o In o ma ion Sciences, Cen e o In o ma ion and Sys ems, Uni e si y o Tampe e, Finland beHeal h Compe ence Cen e , Uni e si y Hospi al Regensbu g, Ge many Abs ac A easibili y analysis has been pe o med o s udy he ap- plicabili y o p i acy a ibu es wi h a de eloped wellness in- o ma ion model. In o ma ion p i acy conce ns speci ically access o indi idually iden i iable pe sonal in o ma ion and one’s abili y o con ol in o ma ion abou onesel . We ca ied ou a use scena io walk- h ough o he p i acy a ibu es ela ed o he wellness componen s. The walk- h ough showed a need o ela e sel - egula ing p i acy policies o he pe a- si e con ex so ha du ing a ious us -building p ocesses, a pe son is awa e and can con ol he use, disclosu e and e en seconda y use o his pe sonal, p i a e wellness in o ma ion. Keywo ds: Feasibili y, p i acy, pe sonal wellness, in o ma ion model. In oduc ion A easibili y s udy is an impo an phase in he de elopmen o models and se ices. The ul ima e goal o a easibili y s udy is o ou line and cla i y he hings and ac o s connec ed o de- eloped models and solu ions [1]. This kind o s udy collec s in o ma ion and e idence on he easibili y o esea ch esul s be o e he esul s a e ac ually implemen ed in p ac ice. Thus, he easibili y s udy p o ides he p oo -o - he concep , in o - ma ion o u he planning and e inemen and i o ms he amewo k o u he sys em de elopmen p ojec and o u he s udies. The phases in ou p elimina y easibili y s udy we e planned ollowing he GEP-HI e alua ion guideline [2]: p elimina y s udy planning wi h he pu pose o ou line and analyze he a ibu es and ac o s o in e es o he wellness in o ma ion model wi h ela ed p i acy concep s; s udy implemen a ion planning o selec he analysis c i e ia and me hods; execu ion o he s udy, and epo ing o he comple e s udy ollowing he STARE-HI guideline [3]. This pape p esen s a sho summa y o he p oo -o -concep phase o ou easibili y s udy. Ma e ials and Me hods The model and p i acy a ibu es The wellness in o ma ion model aims a co e ing he essen ial aspec s o pe sonal wellness in o ma ion. Majo componen s o he model a e: Emo ional and men al wellness, occupa ion- al wellness, en i onmen al ac o s, social ne wo ks, li es yle aspec s, physiological in o ma ion, and heal h ca e se ice (Figu e 1). The componen s a e u he di ided in o concep classes and sub concep s. The wellness in o ma ion model has been de eloped in a 4- yea esea ch p ojec 1wi h li e a u e analyses and empi ical esea ch [4-6]. The in e es ing componen s o ou easibili y s udy a e: Heal h ca e se ices p o ision, li es yle, social ne - wo ks, and emo ional and men al wellness. These we e selec - ed o be objec s in ou analysis because hey summa ize well he aspec s o he holis ic heal h and wellness. Many wellness models in he li e a u e emain a e y high-le el and adi- ional heal h ca e ela ed models o on ologies ocus on speci - ic diseases o medical condi ions and do no conside he ho- lis ic iew o wellness and heal h [7-11]. Today issues o li e- s yle and social ne wo ks a e mo e and mo e impo an o pe sons in hei wellness managemen and con ol [12-13]. Also in ou empi ical ocus g oups, he social ne wo ks and li es yle aspec s we e emphasized by he pa icipa ing pe sons [4-5]. Figu e 1- Majo componen s o he pe sonal wellness model In o ma ion p i acy has become a e y impo an issue wi h he g ow h o ubiqui ous compu ing which allows many op- ions o collec ing and using pe sonal in o ma ion. Also, he global and open na u e o he In e ne enables easy collec ion, s o age and u iliza ion o pe sonal in o ma ion [14]. In heal h ca e en i onmen , in o ma ion p i acy is especially impo an as pe sonal heal h in o ma ion is con iden ial and should be p o ec ed om un-au ho ized use, access, and disclosu e. P i- acy conce ns ise om he g owing in e es o euse and o seconda y use o pe sonal in o ma ion o o he pu poses; i was o iginally collec ed in mode n dynamic en i onmen s [14- 17]. P i acy e e s o pe son’s abili y o con ol he collec ion, use and dissemina ion o one’s pe sonal in o ma ion [15]. Wes in [17] sees he communica ion aspec impo an in p i acy by emphasizing p i acy as he claim o indi iduals, g oups, and ins i u ions o de e mine o hemsel es when, how, and o 1T us ed eHeal h and eWel a e In o ma ion Space (THEWS) MEDINFO 2013 C.U. Lehmann e al. (Eds.) © 2013 IMIA and IOS P ess. This a icle is published online wi h Open Access by IOS P ess and dis ibu ed unde he e ms o he C ea i e Commons A ibu ion Non-Comme cial License. doi:10.3233/978-1-61499-289-9-219 219 wha ex en in o ma ion abou hem is communica ed o o h- e s. Pe sonal in o ma ion is always ela ed o he social con ex whe e he p i acy issues a e aised and challenged [18-19]. The socio- echnical aspec o p i acy means ha he use s should be awa e o he ype o in o ma ion collec ed, ex- changed and p ocessed in o de o be able o make choices ega ding who, why, and whe e his/he pe sonal in o ma ion can be used. P i acy is a pe sonal and si ua ion depending concep . The e- o e, “good/bad p i acy” seems o be jus a quali a i e opin- ion. A be e app oach is o measu e he p i acy le el o a - ibu es. P i acy me ics can be used o assess he deg ee o which a pa icula ubiqui ous applica ion complies wi h p i a- cy equi emen s. Me ics sugges ed in [20] p o ide op ions: no con ol (0), con ol o e disclosu e o one kind o in o ma ion (1), con ol o e wo kinds o in o ma ion (2), and con ol o e all h ee kinds o in o ma ion (3). The ypes o in o ma ion co e ed by his me ics a e con en s, loca ion, and iden i y. T us is an in e ela ed a iable o in o ma ion p i acy; us is media ing be ween in o ma ion p i acy and willingness o disclose p i a e in o ma ion [14]. In a con ex ual si ua ion, us and needed le el o p i acy a e in e ela ed and inc eased le el o us wo hiness educes he need o p i acy [21-22]. In ela ion o he wellness concep s, we de ined he p i acy a ibu es o each concep in Table 1. The a ibu es a e based pa ly on ou empi ical esea ch [4-6] and pa ly on he pe - o med ecen li e a u e sea ch which co e ed elec onic li e a- u e da abases wi h keywo ds: p i acy, pe sonal wellness, and pe asi e heal h. We iden i ied a ibu es which a e u he s udied in his easibili y analysis wi h he speci ic ocus on he pe sonal wellness in o ma ion [21-22]. The mo i a ion was o ha e a deepe unde s anding on p i acy. Ea lie esea ch has been much ocused on ypes o p i acy in o ma ion, on p i a- cy me ics, and policies; p i acy a ibu es ha e so a been no much discussed [14-17]. Table 1 - P i acy a ibu es o he selec ed wellness compo- nen s Wellness model com- ponen P i acy a ibu es Heal h ca e Con ex , capabili y, compe ence, eliabili y, bene i , bene olence, con idence Li es yle Con ex , con idence, eliabili y, bene i , alue Social ne wo ks Con ex , con idence, eliabili y, bene i , alue Emo ional and men al wellness Con ex , con idence, eliabili y, bene i , alue The meanings o he a ibu es come om IT li e a u e. Con- ex e e s o ype o domain o he esea ch, o he phenomena ha exis in he en i onmen , ime (when), loca ion (whe e), occupa ion (who), cul u e (wi h whom), and a ionale (why) [23]. Capabili y e e s o he abili y o he in o ma ion en i y o show he a ibu e alues, compe ence p esen s he le el o p i acy demons a ion, and eliabili y desc ibes how eliable in o ma ion o sou ce is conside ed by a pe son. Bene i p e- sen s he p i acy bene i s and con idence desc ibes how con i- den he use is wi h in o ma ion. Bene olence is he ex en o which an indi idual is pe cei ed o ha e good in en ion owa d o he s wi hou p o i mo i e [24]. Value p esen s how aluable p i acy is conside ed by a pe son in ac ion o ac i i y. The amewo k and analysis me hod The heo e ical amewo k o ou s udy is he design science in en o IT wi h he ocus on concep ualiza ion and ep esen- a ion o eal p oblems and on implemen a ion and e alua ion o solu ions using app op ia e c i e ia [25-26]. Design science a emp s o c ea e hings ha se e human pu poses and i s p oduc s a e assessed agains c i e ia o alue o u ili y - does i wo k? Is i an imp o emen ? In ou esea ch, we ha e aimed o p oduce as ou pu s concep s and a model. The pe sonal wellness model iden i ies ele an concep s and hus p esen s a ocabula y o pe sonal wellness. Following om he amewo k, ou analysis ques ions a e: A e he c ea ed wellness concep s be e han he old ones, i.e. hose p esen ed in p e ious esea ch and li e a u e? Does ou wellness model gi e a easible classi ica ion o concep s and does i ela e he p i acy a ibu es o he concep s? Do hese a ibu es co e he equi ed p i acy needs? Does he wellness model con ibu e o ha ing a be e unde s anding o pe sonal wellness, i s con en s and limi s? The i s s ep in ou easibili y analysis was o analyze he concep s. The me hod o concep de elopmen was an analy- sis o ea lie published esea ch. We sea ched o published a icles wi h keywo ds pe sonal heal h, pe asi e heal h, well- ness, wel a e, and in o ma ion model [4-6]. The second s ep was o analyze he de eloped concep ual model wi h ela ed p i acy a ibu es. The me hod applied in his analysis was an empi ical use scena io walk- h ough o s udy he easibili y o he ela ed p i acy a ibu es. Resul s The concep ual analysis has been pe o med and epo ed in de ail in [5]. The esul s show ha he concep s in ou wellness model desc ibe he pe sonal wellness domain in mo e de ail han models p esen ed in he li e a u e do. We ha e p esen ed mo e concep s, ela ionships and p ope ies in he model han he ea lie gene al models did. The ocus in ou model is b oade as we add ess he wellness om he in o ma ion sys- ems science pe spec i e wi h he pu pose o p esen a model ha enables implemen a ion [5]. Fo he second s ep, we de eloped a use scena io o walk h ough he selec ed model componen s in o de o analyze he p i acy a ibu es ela ed o hese wellness componen s. The scena io wi h p i acy a ibu es is p esen ed in Table 2. The p i acy a ibu es wi h he componen s o igina e bo h om non- egula ed and egula ed con ex s and p i acy and us in he non- egula ed con ex a e no ensu ed. Howe e , he pe - sonal alue o he a ibu es is high and hey a e conside ed highly bene icial. This gi es a mixed si ua ion be ween egu- la ed and non- egula ed con ex s o pe sonal wellness in o - ma ion. The pe son in ol ed in pe asi e wellness en i on- men wan s o be awa e and wan s o con ol his/he pe sonal in o ma ion, i s use, access and disclose, and he/she would need ensu ed means o achie e his. In ou analysis, we walked h ough all he ou selec ed well- ness in o ma ion model componen s. As an example, a mo e de ailed analysis o he p i acy a ibu es o he li es yle com- ponen scena io is p esen ed in Table 3. As p i acy speci ical- ly conce ns one’s abili y o con ol in o ma ion abou onesel , we ha e s udied he p i acy a ibu es in he walk- h ough om his abili y- o-con ol pe spec i e. P. Nykänen e al. / Feasibili y Analysis o he P i acy A ibu es o he Pe sonal Wellness In o ma ion Model220 Table 2 – Use scena io wi h componen s and ela ed p i acy a ibu es – A pe son, 50-yea old heal hy, employed man, diagnosed as diabe es melli us ype 2 (DM T2) Mod- el com- po- nen Ac i i y / Ac ion P i acy a ibu es A ib- u e Con en s Heal h ca e Recei es ea - men , medica ion and guidance o home ca e o DM T2 Con ex egula ed Capabil- i y capable o p o- ide p i acy and us Compe- ence assumed o be high Reliabil- i y o ganiza ion- based us Bene i high pe sonal bene i Bene o- lence good in en ion Con i- dence equi ed p oce- du es, s anda ds and sa egua ds ha e been im- plemen ed Li e- s yle S a s o imp o e his li es yle, uses a pe sonal well- ness dia y sys em in PC Con ex non- egula ed Con i- dence epu a ion-based Reliabil- i y pas his o y- based Bene i high pe sonal bene i Value high pe sonal alue So- cial ne - wo k s Sea ches o pee - suppo in he In e ne , and o in o ma ion on DM T2 Con ex non- egula ed Con i- dence epu a ion-based Reliabil- i y pas his o y- based Bene i pe sonal bene i conside ed high Value pe sonal alue conside ed high Emo- ional and men- al well- ness Sea ches o e- co e y om de- p essed moods and suppo o highe spi i s Con ex non- egula ed Con i- dence epu a ion-based Reliabil- i y pas his o y- based Bene i pe sonal bene i conside ed high Value pe sonal alue conside ed high The walk- h ough clea ly shows ha in he pe asi e con ex , i is di icul o a pe son o know wha he ac ual p i acy s a- us o he se ice o he se ice p o ide is, especially when he p o ide is a non- egula ed one such as li es yle o social ne wo ks. The walk- h ough also shows ha he pe son does no ha e us on p i acy o he non- egula ed in o ma ion and i s eliabili y is no con olled by he pe son. Table 3 –De ails o he li es yle componen walk- h ough Use ac ions P i acy a ibu e – one’s abili y o con- ol Pe son sea ches o in o ma ion on DM T2, on medica- ion and ea men , on heal hy li e s yle, on pee suppo in he In e ne Con ex – In e ne , non- egula ed – abili y o con ol: only wi h ce i ied si es which p o ide us , o he si es: no con ol Con idence – ce i ica es p o ide some con idence, o he wise: con idence does no exis Reliabili y – ce i ied si es a e conside ed somewha eliable, o he wise eliabili y does no exis Bene i – bene i is conside ed high, con- olled by a pe son Value – In o ma ion alue is high, e y meaning ul o he pe son, he alue is de- e mined and con olled by he pe son Pe son s a s a heal hy die and docu- men s his ea ing and blood suga le els in his own wellness dia y in a PC Con ex – non- egula ed, con ol by he pe son (wha o documen , whe e o docu- men, when o documen ) Con idence – he pe son may /o may no be con iden (depending on his abili ies and on he secu i y s a us o his/he PC) Reliabili y – PC eliabili y is con olled no mally by PC secu i y se ice p o ide , some imes by a pe son, blood glucose me- e eliabili y is no con olled by a pe son Bene i – bene i is conside ed high, con- olled by a pe son Value – high alue o he pe son’s DM managemen and heal hy li es yle Pe son s o es he da a he ecei es om a doc o in o his no ebook (diagnosis, medica ion, ea men guidelines) o his pe - sonal use Con ex – da a is coming om egula ed con ex , s o ed in non- egula ed con ex , pe son con ols (wha , whe e) Con idence – he pe son may /o may no be con iden (depending on his abili ies and on he secu i y s a us o his/he no ebook) Reliabili y – da a is conside ed eliable, high us by he pe son (da a is ans e ed om an o ganiza ional us ed sou ce) Bene i – bene i is conside ed high, con- olled by a pe son Value – high alue, impo an o home ca e, o DM managemen and heal hy li e- s yle Ou analysis shows ha when in o ma ion is ans e ed om egula ed sou ce o non- egula ed sou ce, he in o ma ion is conside ed o be eliable when he pe son us s ha he e- qui ed p ocedu es, s anda ds, and sa egua ds ha e been im- plemen ed o da a secu i y and p i acy managemen . Howe - e , a e he da a is ans e ed, he o iginal da a secu i y and p i acy policies and alues o p i acy a ibu es a e no longe alid. The same si ua ion conce ns ce i ied In e ne si es; when a pe son ecei es he hi d pa y ce i ica e, he/she has P. Nykänen e al. / Feasibili y Analysis o he P i acy A ibu es o he Pe sonal Wellness In o ma ion Model 221 high us and con idence on he eliabili y o he si e. When a pe son is accessing li es yle in o ma ion om non-ce i ied si es, he e is no us on he p i acy and no eliabili y on he in o ma ion sou ce. Discussion To achie e good p i acy s a us, he non- egula ed and egula - ed domains need o be in eg a ed in such way ha he pe son ha ing heal h and wellness se ices is always awa e and can con ol he p i acy s a us o he se ices he/she uses. The pe - son wan s o be con iden , o ha e us on he p i acy o his/he wellness in o ma ion in all si ua ions. Fo his pu pose, we need o de elop special p i acy se ices o non- egula ed en i onmen ha can be in eg a ed wi h he egula ed se ice access and disclose [23-24].These special se ices enable us- e s o moni o p i acy a ibu es, o connec me ics o hem, and o measu e he deg ee o which he use s ha e con ol o e hei p i a e in o ma ion. This esea ch sugges s inco po a ing us -building measu es o he non- egula ed con ex . Examples o us -building measu es a e hi d pa y ce i ica es, b anding, owne disclo- su e which means explici ly p esen ing he owne ship o he sponso ship o he con ex , sel - egula ing policies ha expli- ca e he ules and guiding p inciples o he con ex , and sou ce disclosu e ha iden i ies he sou ce o in o ma ion p esen ed [24]. Wi h pe asi e heal h, he sel - egula ing policies a e he mos essen ial, o he measu es a e mo e applicable o heal h in o ma ion websi es. A sel - egula ing policy means ha o each concep in he wellness in o ma ion model, he p i acy a ibu es a e de ined. In all cases, when he concep is ac- cessed, s o ed, p ocessed, o ans e ed, he p i acy a ibu e alues a e ac i a ed and made known, con ollable and meas- u able. This is a p ocess-d i en app oach o a dynamic, con ex - sensi i e ubiqui ous en i onmen as he us -building measu e is always ela ed o he us -building p ocesses [24] such as calcula i e, p edic i e, in en ionali y, capabili y, and ans e - ence p ocesses. Fo pe sonal wellness in o ma ion, impo an and essen ial p ocesses would be he p edic i e, in en ionali y, capabili y and ans e ence p ocesses. P edic i e us build- ing in pe asi e heal h means epu a ion-based us -building; a pe son can build us i he/she knows abou he pas beha - io o he pe asi e se ice. In en ionali y, p ocess would mean ha us can be de eloped i we ha e pe cep ions on he in ensions o he se ice o se ice p o ide . Capabili y based us building equi es ha a pe son is able o e alua e he abil- i y o he se ice o se ice p o ide o deli e he se ice. Finally, he ans e ence p ocess e e s o a si ua ion when in o ma ion is ans e ed om a egula ed con ex o he non- egula ed pe asi e heal h con ex . Wi h all hese p ocesses, he sel - egula ing policies a e need- ed o explica e he ules and guiding p inciples in he con ex . Wi h ou wellness in o ma ion model, sel - egula ing policies mean ha we de ine he p i acy a ibu es o each concep o he componen s and connec p i acy measu e o he a ibu e. Managemen o pe sonal in o ma ion p i acy is impo an as many s udies [11, 14-17] indica e ha p i acy is a op eason o ci izens’ eluc ance o adop pe sonal heal h and wellness sys ems. P i acy is also he d i e o non- egula ed heal h se ice business model. Many o he exis ing pe sonal heal h sys ems do no co e p i acy and secu i y egula ions o heal h in o ma ion o se ices. Fo ci izens, his means low us wo hiness ha hei da a and in o ma ion a e p ope ly p o ec ed. A ecen s udy [27] shows ha pe sonal disposi ions should be aken in o conside a ion when examining p i acy conce ns and beha io al in en ions o disclose heal h in o - ma ion online o in pe asi e en i onmen . This opens new and in e es ing pa hs o he u u e esea ch, e.g. s udy o pe - sonalized p i acy measu es and p ocesses o suppo pe sonal- ly each indi idual in pe asi e en i onmen . Conclusions Ou easibili y analysis ques ions we e: Does ou wellness model ela e he p i acy a ibu es o he concep s? Do hese a ibu es co e he equi ed p i acy needs? This is an addi- ional eques o he p e ious models p esen ed in he li e a- u e. Ou de eloped wellness model ep esen s essen ial con- cep s and gi es a s uc u e o he p esen a ion. The model can be used o build ins an ia ions. I he model helps bo h he use and he de elope o be e unde s and he p oblem a hand, o o de elop be e ins an ia ions based on be e unde s anding, he model gi es mo e possibili ies han he ea lie ones. How- e e , he p oblem in he model is he mix o egula ed and non- egula ed in o ma ion access, use and disclose. The cu - en ly egula ed p i acy egula ions do no suppo his kind o pe asi e heal h and wellness in o ma ion en i onmen [21]. We ha e analyzed he s a us o he p i acy a ibu es wi h a es ic ed scena io walk- h ough and ha e ound ha he a - ibu es p esen ed help a pe son o be awa e o , o con ol and o measu e he p i acy o his/he pe sonal wellness in o - ma ion. The a ibu es emphasize he dynamic cha ac e is ics o he wellness in o ma ion model in he pe asi e heal h en i- onmen . Howe e , in he non- egula ed en i onmen , we need echnical solu ions on how hese a ibu es a e managed and made known, a ailable, and con ollable. Ou esea ch has shown ha us -building p ocesses a e need- ed o ensu e he us de elopmen . In o ma ion p i acy is no ye p ope ly managed in non- egula ed en i onmen s and many challenges a e o e ed by he pe sonal heal h sys ems which o en in eg a e da a om egula ed and non- egula ed sou ces. These sys ems may be e y bene icial o ci izens and he e o e p i acy and us conce ns a e essen ial and equi e solu ions. This esea ch has p esen ed an app oach o de ini- ion and managemen o p i acy a ibu es wi h pe sonal in- o ma ion models. Though his is a es ic ed s udy, we ha e p o ided con ibu ion o in o ma ion p i acy esea ch in wo impo an aspec s: applying design science app oach and ap- p oaching he p i acy a ibu es om he use s’ pe spec i e. These issues ha e no been included in mos in o ma ion p i- acy esea ch as Belange and C ossle [15] ound in hei ex ensi e in o ma ion p i acy esea ch e iew. These indings call o u he esea ch o s udy all po en ial app oaches and o ind inno a i e, easible and implemen able solu ions o in o ma ion p i acy in pe asi e heal h. 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