O iginal Pape
P i acy-Rela ed Con ex In o ma ion o Ubiqui ous Heal h
An o Seppälä, MS Comp Sc; Pi kko Nykänen, PhD; Pekka Ruo salainen, DSc (Tech)
Cen e o In o ma ion and Sys ems, School o In o ma ion Sciences, Uni e si y o Tampe e, Tampe e, Finland
Co esponding Au ho :
An o Seppälä, MS Comp Sc
Cen e o In o ma ion and Sys ems
School o In o ma ion Sciences
Uni e si y o Tampe e
Kansle in inne 1
Tampe e, 33014
Finland
Phone: 358 407069919
Fax: 358 32191001
Email: [email p o ec ed]i
Abs ac
Backg ound: Ubiqui ous heal h has been de ined as a dynamic ne wo k o in e connec ed sys ems. A sys em is composed o
one o mo e in o ma ion sys ems, hei s akeholde s, and he en i onmen . These sys ems o e heal h se ices o indi iduals and
hus implemen ubiqui ous compu ing. P i acy is he key challenge o ubiqui ous heal h because o au onomous p ocessing, ich
con ex ual me ada a, lack o p ede ined us among pa icipan s, and he business objec i es. Addi ionally, egula ions and
policies o s akeholde s may be unknown o he indi idual. Con ex -sensi i e p i acy policies a e needed o egula e in o ma ion
p ocessing.
Objec i e: Ou goal was o analyze p i acy- ela ed con ex in o ma ion and o de ine he co esponding componen s and hei
p ope ies ha suppo p i acy managemen in ubiqui ous heal h. These p ope ies should desc ibe he p i acy issues o in o ma ion
p ocessing. Wi h componen s and hei p ope ies, indi iduals can de ine con ex -awa e p i acy policies and se hei p i acy
p e e ences ha can change in di e en in o ma ion-p ocessing si ua ions.
Me hods: Scena ios and use s o ies a e used o analyze ypical ac i i ies in ubiqui ous heal h o iden i y main ac o s, goals,
asks, and s akeholde s. Con ex a ises om an ac i i y and, he e o e, we can de e mine di e en si ua ions, se ices, and sys ems
o iden i y p ope ies o p i acy- ela ed con ex in o ma ion in in o ma ion-p ocessing si ua ions.
Resul s: P i acy- ela ed con ex in o ma ion componen s a e si ua ion, en i onmen , indi idual, in o ma ion echnology sys em,
se ice, and s akeholde . Combining ou analyses and p e iously iden i ied cha ac e is ics o ubiqui ous heal h, mo e de ailed
p ope ies o he componen s a e de ined. P ope ies de ine explici ly wha con ex in o ma ion o di e en componen s is
needed o c ea e con ex -awa e p i acy policies ha can con ol, limi , and cons ain in o ma ion p ocessing. Wi h p ope ies,
we can de ine, o example, how da a can be p ocessed o how componen s a e egula ed o in wha kind o en i onmen da a
can be p ocessed.
Conclusions: This s udy added o he ision o ubiqui ous heal h by analyzing in o ma ion p ocessing om he iewpoin o
an indi idual’s p i acy. We lea ned ha heal h and wellness- ela ed ac i i ies may happen in se e al en i onmen s and si ua ions
wi h mul iple s akeholde s, se ices, and sys ems. We ha e p o ided new knowledge ega ding p i acy- ela ed con ex in o ma ion
and co esponding componen s by analyzing ypical ac i i ies in ubiqui ous heal h. Wi h he iden i ied componen s and hei
p ope ies, indi iduals can de ine hei pe sonal p e e ences on in o ma ion p ocessing based on si ua ional in o ma ion, and
p i acy se ices can cap u e p i acy- ela ed con ex o he in o ma ion-p ocessing si ua ion.
(JMIR Mheal h Uheal h 2014;2(1):e12) doi:10.2196/mheal h.3123
KEYWORDS
ubiqui ous heal h; p i acy; con ex in o ma ion; us ; policy
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In oduc ion
O e iew
Ubiqui ous compu ing makes i possible o collec all kinds o
da a anywhe e and any ime [1] and allows in eg a ion o heal h
ca e deli e y and se ices in o people’s e e yday li es [2,3].
This pape builds on a concep ual amewo k [4] in which
ubiqui ous heal h is de ined as an open and dynamic ubiqui ous
in o ma ion space. The space is p esen ed as digi al sys ems
ha consis o one o mo e in o ma ion sys ems, hei
s akeholde s, and en i onmen s. These sys ems c ea e a dynamic
ne wo k ha o e s and p o ides se ices o ci izens. In he
in o ma ion space, indi iduals and se ice p o ide s can selec ,
ailo , and combine se ices and sys ems ha belong o he
ne wo k. To enable access o pe sonal in o ma ion, indi iduals
and p o ide s need o discuss us , p i acy le el, and p o e ed
se ice.
Ubiqui ous heal h se ices can be o e ed by p o ide s ha a e
licensed and egula ed by medical e hical codes and heal h
ca e–speci ic legisla ion and o he ju idical no ms and by ac o s
ha a e no a ec ed by heal h ca e– ela ed egula ions. To
sepa a e hese wo g oups, we di ided hem as egula ed heal h
ca e se ices and o he se ices. P o ide s o e ing egula ed
heal h ca e se ices ha e s ic de ined esponsibili ies and
obliga ions conce ning se ice p o ision, ca e, p o essionals,
documen a ion, and in o ma ion p ocessing. The e a e also
gene al egula ions on p i acy and secu i y equi emen s (eg,
da a p o ec ion and p ocessing di ec i es) and business
domain–speci ic egula ions. Regula ions co e laws; no ms;
good p ac ice guidelines; and o he ules con olling,
cons aining, o limi ing ac i i y o pa icipan s. These
egula ions can a ec ubiqui ous heal h se ices bu hey o en
do no mee he challenges o echnological inno a ions well.
In ubiqui ous heal h, us wo hiness and p i acy a e key
challenges [4-6]. The e a e p i acy h ea s c ea ed by
au onomous and hidden p ocessing o in o ma ion and ich
con ex ual me ada a. The e is no p ede ined us be ween
pa icipan s, and he business objec i es, needs, in e es s, and
policies o s akeholde s may be unknown o he indi idual [4].
In o ma ion in ubiqui ous heal h is highly sensi i e and
con iden ial, and he exis ence o se ices and ac o s ha a e
no s ic ly egula ed by heal h ca e-speci ic legisla ion c ea es
h ea s and isks o indi idual p i acy. In addi ion, in o ma ion
p ocessing can happen in mul iple sys ems and si ua ions wi h
di e en egula ions, and isks o seconda y use exis . The lack
o p ede ined us and p i acy isks emphasizes he impo ance
o an indi idual's abili y o con ol his o he p i acy.
Fo us ed in o ma ion p ocessing in ubiqui ous heal h, we
ollow he p inciples p esen ed in Ruo salainen e al [4] and
acco ding o hem, an indi idual should ha e he igh o e i y
dynamically he us wo hiness o he ubiqui ous heal h ne wo k
and any sys em ha equi es o p ocesses he indi idual’s
pe sonal in o ma ion o seconda y pu poses; con ol pe sonal
heal h in o ma ion p ocessing, inside sys ems and be ween
hem; be no i ied o all si ua ions and con ex s in which pe sonal
in o ma ion is collec ed, p ocessed, s o ed, and/o disclosed;
and c ea e si ua ion-speci ic, con ex -awa e, and g anula
pe sonal p i acy and us policies, which con ol how pe sonal
in o ma ion is collec ed, p ocessed, disclosed, sha ed, s o ed,
o des oyed.
Sys ems and s akeholde s should ha e he esponsibili y o
ensu e us e i ica ion by publishing hei p i acy policies and
en i onmen al and con ex ual ea u es; openness o in e es s,
business needs, and policies as well as hei ela ionships wi h
o he sys ems; and anspa ency o in o ma ion p ocessing.
To p o ec his o he igh s, an indi idual needs in o ma ion
abou p i acy, ha is, p i acy a ibu es, o de ine his o he
pe sonal p i acy p e e ences. P i acy a ibu es enable p i acy
o be a conc e e issue o indi iduals. In Nykänen e al [7], we
de ined p i acy a ibu es as bene i , bene olence, capabili y,
compe ence, con idence, con ex , eliabili y, and alue. P i acy
a ibu es and hei con en s ha e no gene ally been esea ched
widely. The ocus in his s udy is he con ex a ibu e, which
e e s o he si ua ion in which da a a e c ea ed o p ocessed.
The objec i e is o analyze and de ine p i acy- ela ed con ex
in o ma ion componen s and hei co esponding p ope ies.
When da a a e c ea ed, a con inuum o da a is bo n. Du ing he
di e en p ocessing si ua ions, da a o i s p ope ies may change.
O iginal con ex e e s o a si ua ion when da a a e c ea ed. In
a ious use con ex s and p ocessing si ua ions, con ex
in o ma ion is inc emen ally c ea ed and i desc ibes he cu en
con ex and enables acking o he con ex his o y. Thus, da a
ha e embedded con ex in o ma ion ha can be used by p i acy
se ices o us calcula ion and o decide whe he p ocessing
is allowed (Figu e 1).
An indi idual’s p i acy p e e ences can be implemen ed wi h
adap able p i acy policies. In p e ious wo k [8], we concluded
a o mula o p i acy policies o con ain (1) us in o ma ion
ha is a alue o a sys em- o en i onmen -speci ic calcula ion
o egula o y compliance and us wo hiness; (2) sensi i i y o
he da a; (3) si ua ion o he in o ma ion use; and (4) pu pose
o he da a collec ion o use.
Policy o mula ion is a decision p ocess in which an indi idual
selec s p i acy ules and se ices and how much in o ma ion
can be aded compa ed o he o e ed se ice and he le el o
p i acy a ibu es. In his s udy, ou hypo hesis is ha con ex
in o ma ion enables o mula ion o con ex -awa e p i acy
policies hence enabling us wo hy p ocessing o pe sonal
heal h and wellness in o ma ion and ealizing indi iduals’ igh s
o p i acy in ubiqui ous heal h. In Ruo salainen e al [8], we
p esen ed a p i acy a chi ec u e ha could use con ex
in o ma ion in us calcula ion and in con ex -awa e p i acy
policies o con ol an indi idual's pe sonal in o ma ion. Wi h
his s udy, we add knowledge o ou ea lie esea ch by s udying
he p i acy- ela ed con ex in o ma ion and by de ining he
co esponding componen s and hei p ope ies ha suppo
p i acy managemen in ubiqui ous heal h.
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Figu e 1. Da a con inuum and con ex in o ma ion.
P io Wo k
P i acy and T us
P i acy e e s o an indi idual’s abili y o con ol in o ma ion
abou him- o he sel [9]. P i acy is a e y pe sonal concep
and dependen on he con ex , because i may a y among
ju isdic ions, cul u es, economies, ime, and indi iduals [10-12].
Smi h e al [13] claim ha p i acy is so bound o he speci ic
con ex ha i canno be concep ualized as a single and
unambiguous concep ; a he i should be ea ed as a se o
in e es s. Cla ke [14] a gues ha i is use ul o unde s and
p i acy as he in e es o keeping pe sonal space ee om
in e ence and has di ided p i acy in o ou dimensions: pe son,
pe sonal beha io , pe sonal communica ions, and pe sonal da a.
In o ma ion p i acy means ha pe sonal in o ma ion should
no gene ally be a ailable o o he pe sons o o ganiza ions and
an indi idual should ha e majo con ol o in luence o e he
pe sonal da a con olled by o he s and i s use [14]. In his
esea ch, we e e o p i acy as an indi idual’s pe sonal iew
wi hin he legisla i e bounda ies.
T us is a concep closely ela ed o p i acy, and usually, he
highe he alue o us , he lowe he need o p i acy [4].
T us implica es he willingness o sha e pe sonal in o ma ion
wi h o he s [15]. Schoo man e al [16] emphasize ha us is
based on a ela ionship and he le el o us exp esses he le el
o isk an indi idual is willing o ake. Abdul-Rahman and
Hailes [17] ha e de ined h ee cha ac e is ics o us : (1) us
is subjec i e, (2) ac ions we canno moni o a ec us , and (3)
us le el is dependen on how o he s’ac ions a ec ou ac ions.
Se e al us models has been de eloped o calcula ing
us wo hiness [16,18-20].
Ubiqui ous compu ing sys ems should be open and dynamic,
because p e-iden i ica ion o pa icipan s is impossible and hey
migh change egula ly [21]. In hese kinds o dis ibu ed
en i onmen s, collabo a ion is i al because mul iple sys ems
oge he y o achie e goals and pe o m asks and i is c ucial
o sys ems o know which en i ies hey should o should no
in e ac wi h [22]. T adi ional p i acy and secu i y solu ions
a e no adequa e o ubiqui ous en i onmen s because he e is
no cen al con ol o p ede ined use s o policies [19,21,23].
P i acy and secu i y a chi ec u e and decisions need o be based
on us and i s p ope ies [19,21,24].
Con ex and Con ex Awa eness
Con ex has been mos ly de ined wi h use p o ile, use emo ion,
and use loca ion and iden i ies o nea by people and objec s
and changes o hose objec s [25-28]. Acco ding o Dey e al
[29], he h ee mos ele an en i ies a e places, people, and
hings. These en i ies ha e o be conside ed om di e en
iewpoin s such as loca ion, ac i i y, and iden i y. Dou ish [30]
p oposes ha con ex and con en canno be sepa a ed; he
con ex a ises om he ac i i y i sel and i canno be an ex e nal
desc ip ion o he se ing. He claims ha con ex is a ela ional,
in e ac ional p ope y be ween objec s and ac i i ies and he
scope o ea u es mus be de ined dynamically [30]. Dey and
Abowd ([28], pp. 3-4) de ined con ex as: “Con ex is any
in o ma ion ha can be used o cha ac e ize he si ua ion o an
en i y. An en i y is an indi idual, place, o objec ha is
conside ed ele an o he in e ac ion be ween a use and an
applica ion, including he use and applica ions hemsel es.”
This de ini ion is open and i conside s ha any in o ma ion
ha is ele an o in o ma ion p ocessing in a si ua ion can be
used as a con ex . Con ex in o ma ion can, o example, be
in o ma ion abou he use , de ice, en i onmen , o si ua ion.
Thus, i is meaning ul o alk abou con ex ela ed o some hing
ha exis s. The e a e h ee main uses o con ex in o ma ion
[29]: (1) p esen ing in o ma ion and se ices o a use o using
con ex o p opose ac ions o be pe o med, (2) execu ion o a
se ice au oma ically on behal o he use , and (3) applica ions
can ag con ex o in o ma ion o la e e ie al.
In con ex -awa e compu ing, applica ions and sys ems a e able
o pe cei e hei su oundings and en i onmen , adap acco ding
o he con ex , and pe o m au onomously. Con ex awa eness
e e s o adap abili y, which means ha applica ions and sys ems
exploi pe cei ed con ex in o ma ion and adap hei beha io
acco dingly [31]. In his iew, con ex in o ma ion is
in o ma ion ha enables beha io modi ica ion based on his
in o ma ion and i s ela ions. The sys ems, applica ions, and
en i ies ha e o de ine he scope hemsel es.
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Acco ding o Viswana han e al [32], he key poin o success ul
ubiqui ous heal h is con ex awa eness, and he e a e al eady
se e al con ex -awa e applica ions in he heal h and wellness
domain. A lo o esea ch has been done o suppo pe sonalized
ac ions and se ices in home ca e, ch onic disease managemen ,
and ambien assis ed li ing [33-37] wi h di e en pe sonalized
heal h s a us, body senso ne wo ks, ac i i y o beha io
moni o ing, decision suppo , and eminde applica ions
[32,33,35-40]. In he hospi al en i onmen , many p o essionals
a e e y agile, and con ex -awa e echnologies may help by
pe sonalizing se ices o hem by loca ion, ime, and social
con ex [41]. Acco ding o p e ious s udies [33,42], he e a e
se e al expe imen s on con ex -awa e compu ing ha ha e been
c ea ed in hospi al en i onmen s o imp o e pa ien eco d
managemen , communica ion among p o essionals, and
in o ma ion sha ing by including con ex awa eness in pa ien
oom equipmen .
Policies
In ubiqui ous en i onmen s, p i acy equi emen s can be
exp essed wi h policies. P i acy policy can be unde s ood as a
pe sonal s a emen on p i acy. Wi h policies, indi iduals can
se compu a ional ules explici ly s a ing hei pe sonal p i acy
p e e ences on how hei in o ma ion can be p ocessed, used,
disclosed, and sha ed [21,43,44]. Policies a e ypically exp essed
wi h a policy language [45]. To enable pe sonal p i acy policies
wi h compu a ional ules equi es de ini ion o p i acy a ibu es.
P i acy policies can be implemen ed wi h se ing alues on
p i acy a ibu es. Con ex -awa e policies based on con ex
in o ma ion enable dynamic adap a ion o p i acy con ol
s a egies and ailo ed p i acy decision suppo se ices. A
echnique called s icky policy enables a aching policies in o
da a o ensu e ha da a a e p ocessed acco ding o an
indi idual’s wishes [44].
Beh ooz and De lic [46] p opose a con ex -awa e p i acy policy
language based on wo design conside a ions: (1) si ua ions and
p i acy ules a e de ined sepa a ely, and (2) a con ex eques o
can be speci ied based on i s iden i y o social ela ionship o a
use . These p inciples mean ha p i acy policies a e se o
di e en si ua ions. Ghosh e al [47] p esen ed a seman ically
ich policy-based sys em ha can eason on use ’s con ex and
hus p o ec s a use ’s p i acy dynamically du ing un ime.
Schaub e al [23] p esen ed a p i acy con ex model wi h h ee
majo en i ies—use , use ’s en i onmen , and use ’s ac i i ies.
Thei model akes in o accoun in o ma ion, physical, and
e i o ial aspec s o p i acy. Bloun e al [48] p oposed a
con ex -dependen policy model in which ield con ex con ains
in o ma ion when condi ions o he policy a e alid. These
alues may be om ei he he subjec o he eques o .
Me hods
Scena ios and Use S o ies
Scena ios a e means o desc ibe he sys em’s in ended usage.
Scena io-based design echniques p oduce desc ip ions o how
people do hings and how hey can accomplish di e en asks
wi h he sys em. Wi h scena ios, designe s can ind new ways
o doing hings and new hings o do. Scena ios cap u e goals,
en i ies, beha io al in o ma ion (eg, ac ions, ac i i ies, and
e en s) and wha people a e ying o accomplish wi h he
sys em [49,50]. They can also desc ibe di e en ela ed ac o s
wi h hei own objec i es. Typically, scena ios ha e a plo ha
consis s o se e al e en s, hings ha happen du ing ac i i ies,
changes in he se ing, e c. Scena ios a e wo k-o ien ed analysis
me hods; hus, hey a e sui able o ou pu poses, because we
a e analyzing ypical ac i i ies o an indi idual in an ubiqui ous
heal h en i onmen o ecognize he needs o con ex
in o ma ion.
In ou p e ious a icles, we analyzed p i acy h ea s and he
p inciples o us ed in o ma ion p ocessing [4], de ined p i acy
a ibu es [7], and analyzed he equi emen s o in o ma ion
ha should be used in p i acy policy o mula ion and common
h ea s and challenges conce ning p i acy in ubiqui ous heal h
[8]. Ou p e ious esul s c ea ed he amewo k o he scena io
de elopmen and analyses and o he equi emen s o con ex
in o ma ion. In his esea ch, we c ea ed scena ios ha we e
based on ma e ials collec ed in ou ea lie empi ical esea ch
on pe sonal wellness [51-53] pe o med wi h ocus g oups and
li e a u e s udies ocusing on heal h and wellness ac i i ies and
echnical applica ions on ch onic disease managemen ,
sel -heal h managemen , ubiqui ous heal h, and wellness
app oaches. Scena ios we e designed o cap u e he
cha ac e is ics o di e en si ua ions, such as a gene al wellness
managemen si ua ion wi hou any speci ic needs and a speci ic
se ing wi h a ch onic disease. Wi h scena ios, we could iden i y
a wide selec ion o ypical ac i i ies in ubiqui ous heal h.
We i s c ea ed wo ex ual scena ios desc ibing he main ac o s,
hei backg ounds, and cu en heal h and wellness si ua ions
and nex , we de e mined he main goals, ac i i ies, and en i ies.
Then, we u he di ided bo h scena ios in o 10 use s o ies ha
desc ibed in mo e de ail he ac i i ies and se ices he
indi iduals needed in hei si ua ions. Each use s o y ocuses
on 1 ac i i y o a scena io and i is a sho ex ual and in o mal
desc ip ion o a use case. Because con ex a ises om ac i i y
[30] wi h he use s o ies, we could cap u e ac i i ies in
ubiqui ous heal h o iden i y in o ma ion-p ocessing si ua ions
and p i acy- ela ed con ex in o ma ion.
A i s , scena ios desc ibed ypical wellness app oaches
emphasizing se ices ha a e no egula ed by heal h ca e
egula ions, o example, li es yle managemen and
heal h- ela ed beha io s. The objec i e was o ecognize
ac i i ies and en i ies ou side egula ed heal h ca e se ices.
Then we app oached ch onic disease managemen scena ios
wi h a ocus on iden i ying collabo a ion be ween egula ed
heal h ca e se ices and pe sonal a emp s o manage heal h
ou side he p o ide ne wo ks wi h o he se ices. These
scena ios we e analyzed o ecognize ac i i ies and
in o ma ion-p ocessing si ua ions. To summa ize, hese
scena ios helped us o analyze he aspec s o wo di e en
si ua ions in ubiqui ous heal h: (1) ubiqui ous heal h wi hou
egula ed heal h ca e p o ide s’pa icipa ion; and (2) ubiqui ous
heal h wi h egula ed heal h ca e, o example, se ice po olio
is a combina ion o se ices p oduced by a egula ed heal h ca e
p o ide (s) and o he heal h and wellness p o ide s.
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An Example Scena io
As an example, we p esen he ollowing scena io. Pe e is a
23-yea -old heal hy s uden who begins o eel i ed and ill and
he decides o seek help om s uden heal h se ices. A e a
ew es s and doc o isi s, Pe e is diagnosed wi h ype 2
diabe es melli us. F om now on, Pe e has o pay a en ion o
his habi s and choices conce ning heal hy li ing o he i s
ime in his li e. We di ided his scena io in o mo e de ailed use
s o ies desc ibing ac i i ies ela ed o ch onic diseases in a
ubiqui ous heal h en i onmen . In Table 1, we p esen an
example analysis o a use s o y. In Table 2, we p esen a
de ailed example o a single ac i i y in ubiqui ous heal h wi h
i s ela ed p i acy conce ns, Pe e ’s policies, and he con ex
in o ma ion ha a policy example equi es.
Table 1. An example analysis o a use s o y in ch onic disease scena io. Use s o y 2.1: Pe e ecei es a medical de ice wi h senso s o manage and
ca e o his disease and au oma ically measu e and moni o his condi ion. De ices can also au oma ically in o m his doc o abou he esul s and majo
changes.
Indi idual and in o ma ion con olle wi h igh s o p i acy, o con ol p ocessing and seconda y use o in o ma ion.
Pe e can decide who can access da a c ea ed by he de ice. Pe e needs p i acy policies o con ol his own pe sonal
heal h sys em (PHS) use and he in o ma ion i con ains.
Role
Da a is c ea ed in he senso s and ans e ed o PHS.
PHS analyzes he in o ma ion and compa es i o pas in o ma ion.
PHS in o ms Pe e ’s doc o abou a majo change in a alue.
Doc o accesses he in o ma ion and makes a medical decision.
Ac i i ies
Anywhe e. No heal h ca e–speci ic egula ions conce ning he en i onmen . In o ma ion sha ing is based on Pe e ’s
known consen and p i acy policies. All in o ma ion c ea ed by he ce i ied de ice is us ed. The de ice is egula ed
by speci ic legisla ion (eg, he Eu opean Union di ec i e on medical de ices). In case o a majo change in measu e-
men in o ma ion, egula ed heal h ca e se ice will pa icipa e and hen he en i onmen will be s ic ly egula ed
by heal h ca e–speci ic egula ions.
En i onmen
Medical de ice, Pe e ’s own PHS and possibly elec onic heal h eco d sys em. Senso and measu emen da a is
s o ed in PHS and Pe e ’s heal h eco ds a e in egula ed elec onic heal h eco d sys em. Pe e has o al con ol o e
his PHS.
In o ma ion sys ems
Pe e , medical de ice, PHS, and licensed medical p o essional (doc o ) wi h esponsibili ies conce ning ca e and
pa ien s p i acy
S akeholde s
Ce i ied medical de ice measu ing blood suga le els
PHS diabe ic in o ma ion analysis
Regula ed heal h ca e se ice ac i a ed by Pe e ’s PHS in case o a majo change in Pe e ’s measu emen alues
Se ices
Measu emen and moni o ing da a om senso s and medical de ice
Heal h and wellness in o ma ion in PHS is con olled by Pe e . The medical in o ma ion is egula ed in heal h ca e
o ganiza ion’s elec onic heal h eco d sys em.
In o ma ion con en
In o ma ion is c ea ed by a ce i ied medical de ice con olled by Pe e . The en i onmen does no ha e any speci ic
domain egula ions. In o ma ion is in Pe e 's con ol and he has ull igh s o i . Pe e 's pe sonal con ex -awa e p i-
acy policies a e he main sou ce o limi a ions and cons ain s on in o ma ion p ocessing.
O iginal con ex o he in o ma-
ion
Pe e ’s PHS is a us ed in o ma ion sys em in his con ol so i has ull p ocessing igh s and can ac i a e o he se ices
i needed ollowing Pe e ’s p i acy policies. Pe e has de ined in his policies ha di e en measu emen and senso
da a is e y sensi i e and se s limi a ion o wha pu pose in o ma ion can be used. In o he cases, PHS canno g an
access o in o ma ion wi hou Pe e ’s au ho iza ion. O he han egula ed heal h ca e, se ices ha e o sha e hei
p inciples o in o ma ion p ocessing, secu i y and p i acy policies, and o wha pu pose hey wan o p ocess he
in o ma ion.
Requi emen s o con ex p op-
e ies
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Table 2. An example analysis o an ac i i y: da a is c ea ed in he senso s and ans e ed o he PHS.
Requi ed con ex in o ma ion o policy 1Pe e ’s policiesP i acy challenges and h ea s [8]
Si ua ion: ac i i y, p ocessing ype, ac o , a ge , in o -
ma ion sensi i i y, and pu pose o p ocessing
1. Pe e hinks ha his kind o da a is highly pe -
sonal and can only be accessed au oma ically by
a heal h ca e p o essional pa icipa ing in Pe e ’s
ca e se ice.
Lack o awa eness
En i onmen : gene al p i acy and secu i y egula ions,
loca ion, and socie y
2. To use he da a, anspa ency o p ocessing is
needed; he e o e, he p o ide has o publish de-
ailed p i acy and secu i y policies and allow
hi d-pa y audi ing.
I is di icul o know how da a is used in
he u u e
Se ice: ype, ole, p o ide , loca ion, and objec i e3. To p e en seconda y use, copying da a is no
allowed. I copying is equi ed, Pe e has o be
no i ied and his known consen is equi ed.
Rela ionships be ween sys ems may be
unknown
Indi idual: ole, igh s o con ol in o ma ion, ela ion
o he ac i i y, con iden iali y equi emen s
4. Heal h ca e p o essionals a e no allowed o
disclose da a wi hou Pe e ’s known consen .
Po en ial seconda y use o in o ma ion
S akeholde : iden i y, ype, ole, pu pose, and jus i ica-
ion o p ocessing
Use s wan o con ol how sys ems use
pe sonal heal h in o ma ion
IT sys em: iden i y, ype, con olle How o gua an ee ha da a is p ocessed
ollowing he legal cons ain s and acco d-
ing o he indi idual’s policies
Resul s
In an open and dynamic ubiqui ous heal h in o ma ion space,
he e a e no possibili ies o p ede ine en i ies o ac i i ies and
mos aspec s o in o ma ion p ocessing a e dynamic. In he
scena ios and use s o y analyses, we ecognized how di e en
ac i i ies a e easons o in o ma ion-p ocessing si ua ions in
ubiqui ous heal h, how se e al en i ies can c ea e and use
in o ma ion, and how he same in o ma ion can be used la e
o suppo di e en ac i i ies. In addi ion, scena ios showed
ha ac i i ies could happen au onomously wi h in o ma ion
sys ems e en wi hou human pa icipa ion; o ins ance, based
on some measu emen o i al signs o moni o ing o da a. Thus,
in o ma ion p ocessing happens because some en i y pe o ms
an ac i i y in a ce ain en i onmen . Si ua ion desc ibes his
occu ence and he e o e is chosen as he co e componen
de ining p i acy- ela ed con ex in o ma ion. I is linked o a
ce ain ac i i y; ha is, he eason o in o ma ion p ocessing.
Con ex in o ma ion needs o include he whole si ua ion and
all pa icipan s because o he dynamic na u e and limi a ions
in p ede ining ac i i ies and s akeholde s in ubiqui ous heal h.
As a esul o ou scena ios and use s o ies, we p esen he wo
kinds o basic models o ubiqui ous heal h: ubiqui ous heal h
wi hou egula ed heal h ca e p o ide s, and ubiqui ous heal h
wi h egula ed heal h ca e se ice p o ide s.
The i s case is an open en i onmen wi h mul iple en i ies wi h
di e en kinds o domain en i onmen s and in e es s. All
pa icipan s a e by de ini ion un us ed. Heal h ca e–speci ic
egula ions do no apply, bu egula p i acy and secu i y
legisla ions se limi a ions o in o ma ion p ocessing. In
addi ion, di e en domains may ha e hei speci ic legisla ions
(eg, social ca e, wellness se ices, medical de ices, o
pha macy). En i onmen and en i y-speci ic egula ions and an
indi idual’s pe sonal con ex wi h p i acy p e e ences a e
necessa y o adap able p i acy policies. An indi idual’s ole,
en i onmen , and p i acy equi emen s may a y be ween used
se ices o in o ma ion sys ems and in o ma ion sensi i i y
in luences hea ily on pe sonal policies. An indi idual’s igh s
o con ol da a and in o ma ion mus be discussed wi h se ice
p o ide s.
In he second case, he e a e also en i ies ha a e a ec ed by
heal h ca e–speci ic egula ions. Depending on who o wha
p o ides se ice and/o con ols in o ma ion, he e migh be
s ic heal h ca e–speci ic egula ions o se ice p o ision,
o ganiza ions, p o essionals, in o ma ion sys ems, and
in o ma ion p ocessing. Regula ed heal h ca e se ices a e o
some ex en us ed and p i acy h ea s and isks occu
especially when in o ma ion is ans e ed om hem o
p ocessed beyond hei au ho i y. I is e y c i ical o cap u e
who is esponsible o wha , whe e and how se ices a e
p o ided, wha in o ma ion and sou ces a e used, how sensi i e
he in o ma ion is, and who con ols pa icipa ing in o ma ion
sys ems.
In a p e ious s udy [4], we de ined ubiqui ous heal h o be
composed o se ices, in o ma ion sys ems, s akeholde s, and
hei en i onmen s. In addi ion o hese, we ha e o cap u e he
con ex s o he in o ma ion-p ocessing si ua ion and i s objec
and/o subjec . We should cap u e he ollowing componen s
and hei p ope ies on p i acy, egula ions, and equi emen s
o us ed in o ma ion p ocessing: wha happens (si ua ion);
who is he subjec o he objec (indi idual); wha se ices a e
ela ed o he si ua ion (se ice); whe e his si ua ion happens
(en i onmen ); wha social ac o s a e ac i e in he si ua ion
(s akeholde ); and wha compu a ional en i ies pa icipa e (IT
sys em).
In his esea ch, he p ope ies o he p i acy- ela ed con ex
in o ma ion componen s and hei p ope ies a e de i ed by
combining he esul s o he scena io analyses and he p inciples
and equi emen s p esen ed in he ea lie esea ch. We analyzed
he esul s o he scena io analyses o explica e conc e e
p ope ies o ou componen s. In he example, we de i ed he
con ex in o ma ion ha is needed o ul il he equi emen s o
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policies and o minimize known p i acy h ea s. In his example,
policy 1 in he Table 2 means ha Pe e se s a gene al policy
ha da a c ea ed by senso s is highly sensi i e and can only be
au oma ically accessed by heal h ca e p o essionals pa icipa ing
in his ca e. Pe e has o al con ol o e his da a and he u u e
use o da a is based solely on Pe e ’s wishes. The si ua ion
occu s when a egula ed heal h ca e p o essional ies o access
Pe e ’s da a o suppo Pe e ’s ca e and o ollow his condi ion.
To manage his p i acy, Pe e needs in o ma ion abou he da a
use ’s en i onmen and p ocessing wishes. I pa ies o he han
a heal h ca e p o essional in Finland aking pa in Pe e ’s ca e
se ice wan o access he da a, Pe e ’s known consen is
equi ed. The da a use is a egula ed heal h ca e p o essional
in Finland; ha is, p ede ined as somewha us ed and he/she
can use he in o ma ion only o make medical decisions and o
ollow Pe e ’s condi ion. The da a can only be accessed wi hin
Pe e ’s PHS and he da a canno be copied o dis ibu ed. F om
he example, we can see how Pe e needs se e al kinds o
con ex in o ma ion o c ea e he example policy.
F om he scena io analyses, we ha e de ined he p ope ies ha
a e needed o ul il he p inciples o us ed in o ma ion
p ocessing and equi emen s se o p i acy o mula ion
conce ning con ex in o ma ion (Figu e 2).
Figu e 2. P i acy- ela ed con ex in o ma ion componen s and hei p ope ies o ubiqui ous heal h.
A si ua ion desc ibes in o ma ion p ocessing ha happens in a
ce ain con ex because o some ac i i y and by/ o a ce ain
indi idual. F om he scena ios, we lea ned ha en i onmen s
migh a y a lo ; he e o e, we need o unde s and he
en i onmen whe e he si ua ion happens and
componen -speci ic en i onmen s (eg, indi idual, se ices,
s akeholde s, and IT sys ems) o cap u e all p i acy aspec s.
Wi h he en i onmen , we do no only mean loca ion and o he
posi ion-based in o ma ion, bu especially impo an is o cap u e
he ype o en i onmen . We ha e o pe cei e he p ope ies o
en i onmen such as p i acy, secu i y, us - ela ed in o ma ion,
and in o ma ion-p ocessing ules and esponsibili ies.
Regula ions may di e a lo be ween en i onmen s and di e en
businesses a e a ec ed by hei speci ic legisla ion. Cap u ing
en i onmen is c ucial because echnological ad ancemen s
such as cloud compu ing and big da a c ea e new ypes o
p i acy isks. Fo example, i a se ice is o e ed in he
Eu opean Union bu he da a a e s o ed o p ocessed in an
in o ma ion sys em loca ed in he Uni ed S a es, he e a e
di e ences in legisla ions conce ning p i acy, secu i y, o
seconda y use o da a. People should be able o con ol whe e
and why hei da a a e p ocessed.
An indi idual componen desc ibes he ac ual subjec and/o
objec o heal h and wellness ac i i ies in ubiqui ous heal h. I
is linked di e en ly o si ua ions; an indi idual can c ea e hem,
pa icipa e in hem, and/o is an objec . P ope ies needed om
he indi idual a e he ole he/she has in he si ua ion, loca ion,
and en i onmen and wha ela ion he/she has wi h he ac i i y.
Also, an indi idual’s igh s o con olling in o ma ion
p ocessing (eg, con en , disclosu e and access o in o ma ion),
p i acy policies, sensi i i y and con iden iali y equi emen s
and wha is his/he ela ion (eg, owne , con olle , o subjec )
o in o ma ion should be acknowledged. All hese hings a ec
how and on wha basis sys ems can p ocess in o ma ion.
A se ice componen desc ibes egula ed heal h ca e se ices
and/o o he se ices ha can be o e ed by IT sys ems and/o
s akeholde s. An IT sys em componen e e s o all
compu a ional en i ies, which can include heal h in o ma ion
sys ems, pe sonal heal h sys ems, ubiqui ous sys ems, de ices,
senso s, e c. IT sys ems should be open abou hei p ocesses
and publish hei p i acy and secu i y policies including how
an indi idual’s p i acy is p o ec ed, ele ancy o p ocessing
and ac ual da a p o ec ion speci ica ions, and de ailed
in o ma ion-p ocessing p inciples. This would imp o e
anspa ency o in o ma ion p ocessing and inc ease
us wo hiness. I an IT sys em does no publish necessa y
in o ma ion, his has o be cap u ed in he con ex in o ma ion.
Because in o ma ion p ocessing can happen anywhe e, i is i al
o cap u e i s con ex because he e a e se e al cha ac e is ics
a ec ing p i acy ha may di e be ween IT sys ems; o
example, ype, loca ion, o egula i e backg ound. Fo example,
he e a e big di e ences in egula ions among in o ma ion
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sys ems, egula ed medical de ices (eg, ha e o be ce i ied),
and wellness de ices. S akeholde is he social componen
desc ibing o ganiza ions and possible human pa icipan s. They
can be ac o s o in e es ed pa ies in a si ua ion. They o e ,
pa icipa e, o a e in e es ed in se ices o e ed o indi iduals.
Ou componen s can be used o inc ease us wo hiness o
in o ma ion p ocessing because p i acy policies can be
adap able and based on cons ain s, limi a ions, ules, igh s,
and esponsibili ies se wi h si ua ional in o ma ion. Componen s
can also be used o analyze ha he in o ma ion p ocessing
ollows he p e e ences se by an indi idual’s p i acy policies
and he equi emen s om he o iginal con ex o he
in o ma ion. Fo example, in ou use s o y Pe e may disclose
medical and li es yle da a o a se ice p o ide o ecei e a
selec ed se ice. Pe e has se p i acy policies using p i acy
p ope ies. Be o e disclosu e, Pe e (his p i acy a chi ec u e)
needs he con ex in o ma ion om he se ice p o ide o
calcula e i p ocessing is acco ding o he equi emen s se by
Pe e ’s own con ex -awa e p i acy policies and he o iginal
con ex o he in o ma ion. P i acy a chi ec u e can hen con i m
ha he use con ex is alid acco ding o Pe e ’s pe sonal
p e e ences and allow access o he in o ma ion (Figu e 3).
Ou hypo hesis was ha p i acy- ela ed con ex in o ma ion
could be used o o mula e con ex -awa e p i acy policies hence
enabling us ed p ocessing o pe sonal heal h and wellness
in o ma ion. In his s udy, we analyzed con en s o a p i acy
a ibu e con ex and p esen ed componen s and hei p ope ies
ha can be used as pa o p i acy policies by se ing si ua ional
cons ain s and limi a ions. These cha ac e is ics a e also needed
o cap u e in o ma ion-p ocessing con ex s om he p i acy
pe spec i e. All componen s o p ope ies a e no necessa ily
needed in all si ua ions. In addi ion, i some sys ems e use o
coope a e in publishing con ex in o ma ion, his has o be
cap u ed and acknowledged.
Figu e 3. The use o p i acy- ela ed con ex in o ma ion in ubiqui ous heal h.
Discussion
In his esea ch, we p esen an app oach using p i acy- ela ed
con ex in o ma ion o p i acy p o ec ion in ubiqui ous heal h.
P i acy is a business-enable because indi iduals will no use
hese se ices i hey canno manage hei p i acy and us .
People need simple ools o manage hei p i acy and we ha e
s a ed his by de ining he componen s si ua ion, en i onmen ,
indi idual, se ice, s akeholde , IT sys em, and hei p ope ies.
These componen s desc ibe he c ucial p i acy- ela ed con ex
in o ma ion needed o imp o e us wo hiness o ubiqui ous
heal h. We p esen new knowledge by de ining con ex , which
is one o he main p i acy a ibu es used in p i acy policy
de ini ion. The esul s o his s udy can be used as a basis o
c ea e mo e o mal models de ining p i acy- ela ed con ex
in o ma ion in a compu e -unde s andable o ma . Ou esul s
a e in line wi h he p e e ed p i acy le el model by Lede e e
al [11] bu we ha e aken i a s ep u he and di ided con ex
in o o iginal and use con ex and de ined mo e de ailed and
conc e e p ope ies ha could be alued and measu ed and used
by p i acy a chi ec u e o us calcula ion.
Ubiqui ous heal h is s ill an eme ging ield combining highly
egula ed heal h ca e wi h pe sonal heal h and wellness se ices
and sys ems. In heal h ca e, legisla ion and egula ions de ine
wha p i acy is and wha kind o igh s indi iduals ha e; ha
is, p i acy is a s a e-de ined p ope y. Conside ing se ices and
sys ems ou side he egula ed heal h ca e p i acy is a pe sonal
p ope y o an indi idual; ha is, ee will. The indi idual has
he igh o choose he use o his/he in o ma ion and de ine
policies as o how, whe e, and o wha ex en he in o ma ion
can be p ocessed. In ubiqui ous heal h, a p i acy model is a
combina ion o hese wo models and can be con olled wi h
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policies. Policies can be pe sonal p e e ences o de ined by
egula ions. Using he scena ios, we could iden i y si ua ions
ou side egula ed heal h ca e o ecognize equi emen s and
cha ac e is ics o ubiqui ous heal h. Wi h o ganiza ion-cen ic
heal h ca e p ocesses o wo k lows, we canno eally model
ubiqui ous heal h as a whole because he e a e many se ices
and sys ems wi hou p ede ined and egula ed p ocesses o
wo k lows.
In ubiqui ous heal h, se ice p o ision is based on cus ome
ela ionships and ading on bene i s o se ices agains educing
pe sonal p i acy. Indi iduals should be able o e i y he
us wo hiness o se ice p o ide s and decide i hey a e
p epa ed o disclose pe sonal in o ma ion and educe p i acy.
Because se ices a e o en o e ed as dis ibu ed, pe sonalized
and e en au onomous, he p i acy a chi ec u e should o e
au oma ic p i acy se ices and adap dynamically o he
si ua ion. Scena ios and use s o ies showed ha ubiqui ous
heal h is mul idimensional wi h limi a ions o p ede ining
si ua ions. The amoun o in o ma ion needed and c ea ed in
hese si ua ions can be huge, and he con en and i s sensi i i y
a y depending on he ac i i y pe o med. Ubiqui ous heal h is
an open, dynamic, and collabo a i e en i onmen and p i acy
needs o be based on us and i s p ope ies [19,21,24].
In heal h ca e, p i acy is mainly p o ec ed wi h access con ol
and consen managemen . Access con ol is me ely one ool o
p o ec p i acy. Managing p i acy in ubiqui ous heal h is a
much b oade issue han jus con olling heal h ca e
p o essionals’ access o da a. Access con ol wi h p ede ined
igh s, oles, and consen s canno eally unc ion because he e
is no cen al con ol o necessa ily p ede ined p ocesses,
si ua ions, o ac o s. To ensu e p i acy in ubiqui ous compu ing,
access con ol should be dynamic because o mul iple changing
en i ies. Con ex in o ma ion enables dynamic managemen o
igh s [54]. Consen is an example o a pe sonal policy bu in
ubiqui ous heal h, policies a e needed o co e se e al di e en
si ua ions ha a e mo e complex han hose ha consen s a e
designed o . Policies ha e o be dynamic and con ex -awa e.
Co adi e al [55] p esen a dynamic and lexible secu i y
middlewa e ha uses con ex as a basic concep in secu i y
policy speci ica ion and pe missions a e linked o he con ex s
ins ead o use iden i ies o oles. Mos esea ch on p i acy o
con ex -awa e compu ing ocuses on cap u ing use ’s con ex
o ce ain ac o s and using ha in o ma ion o adap o p i acy
p e e ences [23,47,54].
In his s udy, we ollowed he app oach o Beh ooz and De lic
[46] o sepa a e si ua ions and p i acy ules. We iden i ied he
necessa y in o ma ion o cap u e p i acy aspec s in
in o ma ion-p ocessing si ua ions. Then, p i acy a chi ec u e
can cap u e he si ua ion and he condi ions whe e da a a e
c ea ed; ha is, he o iginal con ex and combine ha wi h
indi idual's policies and con ol u u e use con ex s such as
how, whe e, and by whom he in o ma ion can be used. Ou
app oach needs in o ma ion om pa icipa ing sys ems and
cu en ly i s a ailabili y depends on he goodwill o pa icipan s.
Addi ional o his in o ma ion, p i acy a chi ec u e can use
ex e nal sou ces o es ima ing us wo hiness o sys ems (eg,
ecommenda ions om o he s, his o y, us alues, and us
calcula ions).
In he Eu opean Union, o ganiza ions a e equi ed o in o m
indi iduals abou use o hei da a and publish p i acy policies
ha should be comp ehensi e wi h high-le el desc ip ions o
hei p i acy p ac ices [43]; howe e , hese a e no enough o
sa egua d indi iduals’ igh s. These p i acy policies do no
gene ally conside how da a a e ac ually p ocessed a e
collec ion. So, one o he main challenges in p i acy p o ec ion
is how o en o ce all ele an pa ies o explica e hei de ailed
p i acy policies [43]. Cu en legisla ion is no ully p epa ed
o handle p i acy h ea s o ubiqui ous compu ing and does no
obliga e o ganiza ions o disclose hei de ailed p i acy policies
o in o ma ion-p ocessing p inciples. In he u u e, legisla ion
needs o include he needs o p i acy, ci izens’ igh s, and
ubiqui ous compu ing. Ci izens ha e o be able o con ol
p ocessing and seconda y use o hei pe sonal in o ma ion.
Fu u e p i acy p inciples and no ms need o p og ess om
high-le el p inciples o de ailed egula ions conce ning he
p ocessing and use o in o ma ion. This would b ing openness
and anspa ency o in o ma ion p ocessing and new kinds o
esponsibili ies o o ganiza ions and in o med igh s o
ci izens. In addi ion, au ho i ies o ce i ica e o ganiza ions
should be able o audi p o ide s and o e ecommenda ions
abou hei us wo hiness.
The componen s de ined in his esea ch may ha e some
limi a ions and may no be conclusi e; howe e , based on he
scena io analyses hese a e needed. In addi ion, some p ope ies
a e ha d o de ine explici ly o in measu able o ma . They ha e
o be analyzed in mo e de ail and o mal models a e needed o
implemen hem in compu a ional o ma . Also, we need mo e
de ailed analysis o wha o ganiza ions should publish abou
hei p ocesses and p i acy and secu i y policies and p inciples.
To c ea e con ex -awa e p i acy se ices and policies in p ac ice,
we need o de elop on ologies ha explica e componen s,
p ope ies, and equi emen s ha we ha e p esen ed in his
esea ch. On ologies a e o mal ep esen a ions and should co e
di e en ac i i ies, se ices, IT sys ems, s akeholde s,
in o ma ion con en , and especially ele an egula i e
en i onmen s. Wi h on ologies, we can c ea e compu a ional
ules ha can be used o en o ce egula ions and pe sonal
policies in o ubiqui ous applica ions.
Because i is p ac ically impossible o indi iduals o e alua e
he us wo hiness o a sys em, and o unde s and de ailed
p i acy and secu i y equi emen s and se pe sonal policies, we
de eloped us -based p i acy managemen a chi ec u e o
ubiqui ous heal h [8]. This a chi ec u e model desc ibes wha
p i acy and secu i y se ices a e needed o enable us ed
in o ma ion p ocessing in ubiqui ous heal h. The a chi ec u e
will apply p i acy- ela ed con ex in o ma ion o c ea e p i acy
and secu i y policies ha will ensu e ha in o ma ion p ocessing
will no happen agains he wishes o he indi idual and he
o iginal con ex o he da a. The a chi ec u e con ains decision
suppo and policy se ices o indi iduals o help hem de ine
pe sonal policies. This esea ch adds o he a chi ec u e model
by de ining he equi ed p i acy- ela ed con ex in o ma ion
componen s and hei p ope ies ha a e needed o c ea e
implemen able ools and means o indi iduals o manage
pe sonal in o ma ion p i acy.
JMIR Mheal h Uheal h 2014 | ol. 2 | iss. 1 | e12 | p.9h p://mheal h.jmi .o g/2014/1/e12/ (page numbe no o ci a ion pu poses)
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