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Ethics Certification of Health Information Professionals

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Ethics Certification of Health Information Professionals

Author: Kluge, Eike-Henner,Lacroix, Paulette,Ruotsalainen, Pekka
Year: 2018
Source: https://trepo.tuni.fi/bitstream/10024/104800/1/ethics_certification_of_health_2018.pdf
IMIA Yea book o Medical In o ma ics 2018
37
© 2018 IMIA and Scha aue GmbH
E hics Ce i ica ion o Heal h In o ma ion
P o essionals
Eike-Henne Kluge1, Paule e Lac oix2, Pekka Ruo salainen3
1 Depa men o Philosophy, Uni e si y o Vic o ia, Vic o ia, Canada
2 PC Lac oix Consul ing Inc., No h Vancou e , Canada
3 Uni e si y o Tampe e, School o In o ma ion Sciences, Tampe e, Finland
Summa y
Objec i es: To p o ide a model o ensu ing he e hical accep -
abili y o he p o isions ha cha ac e ize he in e ju isdic ional
use o eHeal h, elemedicine, and associa ed modali ies o heal h
ca e deli e y ha a e cu en ly in place.
Me hods: Following he app oach ini ia ed in hei Global P o ec-
ion o Heal h Da a p ojec wi hin he Secu i y in Heal h In o ma-
ion Sys ems (SiHIS) wo king g oup o he In e na ional Medical
In o ma ics Associa ion (IMIA), he au ho s analyze and e alua e
ele an p i acy and secu i y app oaches ha a e in ended o
s em he e osion o pa ien s’ us wo hiness in he handling o
hei sensi i e in o ma ion by heal h ca e and in o ma ics p o es-
sionals in he in e na ional con ex .
Resul s: The au ho s ound ha while he majo i y o guidelines
and e hical codes essen ially ocus on he ole and unc ioning o
he ins i u ions ha use EHRs and in o ma ion echnologies, li le
i any a en ion has been paid o he quali ica ions o he heal h
in o ma ics p o essionals (HIPs) who ac ualize and ope a e in o -
ma ion sys ems o deal wi h o add ess ele an e hical issues.
Conclusion: The appa en ailu e o add ess his ma e indica es
ha he e hical quali ica ion o HIPs emains an impo an secu i-
y issue and ha he Global P o ec ion o Heal h Da a p ojec ini-
ia ed by he SiHIS wo king g oup in 2015 should be expanded
o de elop in o an in e na ionally iable me hod o ce i ica ion.
An ini ial model o his e ec is ske ched and discussed.
Keywo ds
E hics; heal h in o ma ics p o essionals; ce i ica ion
Yea b Med In o m 2018:37-40
h p://dx.doi.o g/10.1055/s-0038-1641196
In oduc ion
Mode n heal h ca e in all i s o ms, whe he
a he adminis a i e o ope a ions le els,
inc easingly elies on he de elopmen ,
implemen a ion, and use o heal h ca e
in o ma ion sys ems and clinical da a ex-
change be ween elec onic heal h eco ds
(EHRs) o e o ganisa ional and geog aphical
ju isdic ions. Inc easingly, hese complex
socio- echnical in o ma ion sys ems a e
being ou sou ced o comme cial se ice
p o ide s and use so wa e as a se ice
(SaaS) solu ions, ne wo ked by he Cloud.
The need o sha e sensi i e heal h ca e
in o ma ion ac oss ju isdic ional bo de s
b ings wi h i challenging secu i y, p i acy,
and e hical issues [1].
Secu i y s anda ds adop ed by in e na-
ional o ganisa ions such as he O ganisa ion
o Economic Co-ope a ion and De elop-
men (OECD) and he In e na ional O gan-
isa ion o S anda disa ion (ISO) a e widely
used in he design and de elopmen o heal h
ca e in o ma ion sys ems. P i acy by Design
is a model adop ed by he p i acy commu-
ni y as a p ocess o so wa e de elope s o
design, de elop, and implemen in o ma ion
sys ems whe e p i acy is he de aul [2-4].
While secu i y s anda ds and p i acy
p ac ices may ha e a gene al e hical basis,
hey a e ypically ocused on he echnical
de elopmen o sys ems and he manage-
men o da a. Wha has been missing un il
ecen ly in he de elopmen and managemen
o heal h ca e in o ma ion sys ems is an
e hical code o heal h in o ma ics p o es-
sionals (HIPs) who a e esponsible o he
go e nance, managemen , p ocu emen , and
secu i y o heal h ca e in o ma ion sys ems.
In 2015, he Secu i y in Heal h In o -
ma ion Sys ems (SiHIS) wo king g oup
o he In e na ional Medical In o ma ics
Associa ion (IMIA) ini ia ed a long- e m
p ojec , he Global P o ec ion o Pe sonal
Heal h Da a, o iden i y he equi emen s
o p o ec ing pe sonal heal h in o ma ion
wi hin an in e na ional con ex . The wo king
g oup held wo kshops and collabo a ed wi h
o he s in he ield o iden i y app op ia e
secu i y, p i acy, and e hical measu es o
ec i ying cu en issues.
The ecen ly e ised IMIA Code o E hics
o Heal h In o ma ion P o essionals [5],
ha is based on he Uni e sal Decla a ion o
Human Righ s (UDHR), has ound gene al
accep ance in he in e na ional communi y
o in o ma ics p o essionals. The UDHR,
p oclaimed in e na ionally in 1948, explic-
i ly men ions and indeed is based on se e al
undamen al e hical p inciples ha a e ecog-
nized as binding on all pe sons, go e nmen s,
and agencies i espec i e o di e ences in
socio-cul u al o legal amewo ks [6]. The
IMIA Code encompasses hese undamen al
p inciples and p o ides a se o de i a i e
p inciples and ules ha a e speci ic o heal h
in o ma icians. The au ho s sugges ha hese
can se e as he basis o a globally alid e h-
ics-based ce i ica ion p og amme o HIPs.
The e m ce i ica ion has many meanings.
Ce i ica ion can be a o mal p ocedu e o i
can e e o he con i ma ion o ce ain cha -
ac e is ics o an objec o en i y. In his pape ,
he la e de ini ion is used. Fo example,
ce i ica ion o HIPs would indica e ha a
heal h in o ma ics p o essional would know,
unde s and, and apply e hical p inciples in he
go e nance, managemen , and ope a ions o
heal h ca e in o ma ion sys ems and EHRs.
CC BY-NC-ND
4.0
38
IMIA Yea book o Medical In o ma ics 2018
Kluge e al
I is impo an o no e ha o he p o-
essional o ganisa ions ha e also adop ed
e hical codes, s anda ds, and guidelines o
he de elopmen o heal h ca e in o ma ion
sys ems, so wa e enginee ing, implemen-
a ion and managemen o hese sys ems,
and he con en s o he EHR. O ganisa ions
include, among o he s, he Associa ion o
Compu ing Machine y (ACM), Ins i u e
o Elec ical and Elec onics Enginee s
(IEEE), Heal h In o ma ion and Manage-
men Sys ems Socie y (HIMSS), and he
Ame ican Heal h In o ma ion Managemen
Associa ion (AHIMA).
Compa ed o hese p e ious codes o
e hics and guidelines, his pape p esen s
a unique iewpoin ha is ocused on he
iducia y ela ionship ha exis s be ween
HIPs, heal h ca e p o essionals, and he
subjec o ca e ( he pa ien ), and how HIPs
ac e hically in his ela ionship.
Me hod
As a p eamble o i s cons uc i e wo k,
he au ho s conduc ed a e iew o p i acy
p inciples and secu i y s anda ds in o de
o de e mine wha had and wha had no
been done, and in wha sense e hical con-
side a ions had been in eg a ed in o he
a ious unde akings. The au ho s ound
ha p i acy and secu i y was he subjec o
conside able a en ion, ela i e o he ecen
Gene al Da a P o ec ion Regula ions o
he Eu opean Union (GDPR) [7], bu mos
impo an ly i appea ed ha us wo hiness
igu ed la gely as an unde lying heme in a
se ies o o icial and egula o y p onounce-
men s. The au ho s also ound a emp s
o place us wo hiness in a measu able
oo ing using sys em modelling me hods,
sys em analysis, and sys em enginee ing
echniques [8].
The au ho s also e alua ed p i acy,
secu i y, and us app oaches wi h espec
o hei e hical soundness and in e ju is-
dic ional usabili y in ligh o he exis ing
di e ences in p o essional and legal s an-
da ds. Based on hese indings he au ho s
de eloped a p oposal o an in e na ional
e hics-based HIP ce i ica ion p og amme.
Resul s
Exis ing Guidelines and Codes o
Conduc
The au ho s ound ha while he majo i y
o guidelines and e hical codes essen ially
ocused on he ole and unc ioning o he
ins i u ions ha use EHRs, in o ma ion
echnologies hemsel es, and on wha had
been de eloped o main ain sys em secu i y
and unc ionali y, he e was also ecogni ion
ha hese codes should ex end o HIPs who
ac ualize and ope a e he sys ems. The au-
ho s he e o e in es iga ed wha measu es
o quali ica ion had been de eloped o HIPs,
and also wha ce i ica ion and educa ion
p og ammes had been de eloped o hem
[9-14]. These indings we e u he subjec ed
o a simila analysis ela i e o hei e hical
enabili y, si ua ional app op ia eness, and
in e ju isdic ional alidi y.
In he main, he au ho s ound ha a he
ins i u ional, co po a e, and endo le els he
ocus o e hical codes and guidelines we e
cen ed in secu i y, con iden iali y, usabili y,
and echnology as well as in he abili y o
espond quickly o speci ic needs as hese
a ise in he a ious con ex s. I also became
appa en ha exis ing e hical codes and
guidelines we e nei he in eg a ed no mu-
ually consis en , and he e was no a emp
made by he ins i u ions, co po a ions, o
endo s o alida e hei e hical accep abili y.
As o codes o conduc o HIPs, i was
ound ha hey ended o con la e e hical and
legal conside a ions. Ac ually, he e we e some
excep ions. Fo ins ance, he Ame ican Med-
ical In o ma ics Associa ion has de eloped a
code o conduc o i s membe s and has e en
p omulga ed guidelines o he seconda y use
and e-use o heal h ca e da a [15-17]. The
B i ish Compu ing Socie y has also de eloped
a code o conduc [18], as had he Aus alasian
College o Heal h In o ma ics [19]. Ano he
example came om Canada, whe e Digi al
Heal h Canada has p omulga ed a se o co e
compe encies [20] which, o some deg ee,
con ained e hical conside a ions.
Howe e , he p ima y ocus o all such
codes, documen s, and p o isions was no
global in heal h ca e sys em o ien a ion, and
was only ocused on eHeal h, elemedicine
and ela ed modali ies. As well, he codes and
o he p o isions we e no in eg a ed wi h o he
e hical codes and guidelines ha should be
adhe ed o by heal h ca e o ganisa ions. The ap-
plica ion o hese codes and p o isions ended
o ocus on conside a ions ha we e ele an o
he espec i e ju isdic ions in which hey we e
de eloped, and hence hey we e o limi ed use
in he in e na ional se ing. I appea ed ha
he e was no e alua ion o e hical p o iciency,
and he au ho s ound ha cu en HIP ce i i-
ca ion p og ammes we e no global in scope.
HIP Ce i ica ion P og amme
The pu pose o ce i ica ion is o ensu e
app op ia e e hical knowledge is adhe ed o
by HIPs and he heal h ca e o ganisa ions
in which hey ope a e. As he IMIA Code o
E hics indica es, he e hics o heal h in o -
ma ics deals wi h he ac ions o HIPs who a e
in ol ed in he collec ion, use, secu i y, app o-
p ia e disclosu e, e en ion, and disposi ion o
da a in he domain o heal h ca e. This means
ha being ce i ied in heal h in o ma ion e hics
es i ies ha whoe e is hus ce i ied is amil-
ia wi h and p o icien in he e hical aspec s o
se e al dis inc a eas. These include speci ic
opics in heal h in o ma ion e hics wi h which
candida es should be amilia as well as wha
migh be called he ec o space o he igh s
and du ies ha a e in ol ed in hese a eas.
These a e ou lined in he IMIA Code o E hics.
The ce i ica ion p ocess should be ap-
plied o include all HIPs ha a e wo king
in heal h ca e o ganisa ions, whe he public
and p i a e. Ce i ica ion would no only
es ablish hei e hical p o iciency as p o es-
sionals bu would also be consis en wi h he
gene al eno o he Eu opean GDPR and
ela ed p o isions.
The mos e ec i e o ma o measu ing
ce i ica ion p o iciency o HIPs would be
by means o a s anda dized es . The es
would ely on scena ios ha in ol e he
issues in which p o iciency is sough and
would consis in ha ing candida es co ec -
ly iden i y he e hical issues in ol ed, he
pa ies who a e a ec ed, de e mine whe he
he issues ha e been handled e hically ap-
p op ia ely, and ha e he candida es sugges
wha should ha e been done i hey ha e no
been handled co ec ly. The pa icula a eas
and subjec s p esen ed in hese scena ios
would ollow he headings ha a e iden i ied
IMIA Yea book o Medical In o ma ics 2018
39
E hics Ce i ica ion o Heal h In o ma ion P o essionals
as e hically impo an in he IMIA Code o
E hics. The scena ios would illus a e mul i-
ple issues as hese occu in eal li e, and he
answe sec ions would consis o a mix o
ue- alse and mul iple-choice op ions. The
scena ios would be based on ac ual cases ha
ha e p o ed p oblema ic, whe e o cou se
ca e would be aken o al e iden i ying
de ails so ha he p i acy o he ele an
pa ies would be p o ec ed.
The es i sel would be in he na u e o
a secu e on-line in e ac i e web page, and
he e would be a ime limi o comple ing
he ask. This o ma would allow candida es
o access e e ence ma e ials when answe -
ing he ques ions. Howe e , a he han being
a sho coming, his would be in keeping wi h
eal li e. An e hically sensi i e and ained
indi idual could, when in doub , consul
ele an and app op ia e e e ence ma e ial.
The ce i ica ion could be handled and
adminis e ed by a speci ied in e na ional o -
ganisa ion wi h e hics expe ise o unc ion as
au ho i y. Fo ins ance, IMIA in coope a ion
wi h an app op ia e body o he Wo ld Heal h
O ganisa ion (WHO) has he equisi e expe -
ise and could unc ion as a ce i ie . This op-
ion would ha e he ad an age o d awing on
in e na ional p o essional heal h in o ma ics
expe ise as well as he heal h- ela ed expe ise
o he WHO in he con ex o cu en eHeal h
and elemedicine de elopmen s, and would
ensu e ha indus ial and comme cial in e es s
would no supe sede e hical conside a ions.
Unques ionably, he e would be cos s as-
socia ed wi h de eloping, implemen ing, and
adminis e ing he ce i ica ion p og amme.
I is impo an o p esen ce i ica ion i sel
as no being subjec o p op ie a y and iscal
in e es s ha migh in luence he quali y o
neu ali y o he p ocess i sel .
The e y na u e o e hical ce i ica ion is
o ensu e ha app op ia e e hical knowledge
and unde s anding is adhe ed o by HIPs and
he o ganisa ions in which hey wo k, and ha
he e hical ea men o EHRs ha unde lies
he eason o ce i ica ion in he i s ins ance
is no subjec o non-e hical conside a ions.
Discussion
The Uni e sal Decla a ion o Human Righ s
and he IMIA Code o E hics o Heal h
In o ma ion P o essionals o m he basis
o an e hics-based ce i ica ion p og amme
o HIPs p oposed by he au ho s. The aim
o he ce i ica ion solu ion p oposed he e is
o ensu e ha app op ia e e hical knowledge
and unde s anding is adhe ed o by HIPs. To
engage in p o essional and echnical ac i -
i ies wi hou ha ing he app op ia e e hical
compe ence amoun s o a iola ion o he
P inciple o Fideli y and cons i u es mal-
easance o du y [21]. Technical p o iciency
is no gua an ee ha anyone would use he
knowledge, p oduc s, o se ices ha a e a
his/he disposal in an e hically app op ia e
manne . I i we e o he wise, o example i
he echnical compe ence we e all ha was
necessa y o p ope p o essional ac i i y,
he e would be no need o e hical s anda ds
and codes o e hics, and he e would ne e
be any need o p o essional disciplina y
p ocedu es. E hical p o iciency, he e o e,
should be in eg al o p o essionalism, and he
p oposed ce i ica ion solu ion is in ended o
ce i y such p o iciency in a measu able sense.
F om he o he side, i is e iden ha know-
ing e hics ules is no enough. HIPs ha e also
o beha e e hically in eal li e si ua ions. While
i is echnically possible o moni o beha iou s
o HIPs, his is no gene ally accep ed and can
be a iola ion o p i acy igh s. To ac e hically
inside o a heal h ca e o ganisa ion, he e
should be minimal o no con lic s be ween
he o ganisa ional e hics and he e hical code
o a ce i ied HIP. Despi e he a ailabili y o
gene al e hics uni e si y cou ses and aining
p og ams, he au ho s sugges ha he ole o
a HIP in a heal h ca e se ing is so unique ha
a heal h ca e ela ed e hics-based ce i ica ion
is needed. A meaning ul challenge is ha in
many coun ies he p o essional designa ion
o HIPs does no exis . As heal h in o ma ion
sys ems a e ou sou ced, i may be di icul o
de e mine which pe sons would equi e he
p oposed ce i ica ion.
A big ques ion is how e ec i e he
p oposed HIP ce i ica ion would emedy
he issues wi h ha dwa e and so wa e used
in heal h in o ma ion sys ems, namely he
us wo hiness o he sys em and EHR. I
an e hical lense is applied o he design, de-
elopmen , implemen a ion, go e nance, and
ongoing main enance o a heal h in o ma ion
sys em, would accoun abili y in he use and
disclosu e o heal h ca e in o ma ion in he
EHR imp o e he o e all usabili y and secu-
i y o he sys em ? The au ho s belie e ha
he e hics ce i ica ion o HIPs is a ealis ic
s ep, wi h u he ex ension o a ision ha
can only be ue wi h la ge scale in e na ional
egula o s and mul i- ace ed coope a ion. A
less desi able ou come is he e oding us -
wo hiness o heal h in o ma ion sys ems by
he heal h ca e public whe e a digi al sys em
ha pu po s bene icial ou comes lacks
e hical o e sigh , and b eaches o sensi i e
heal h in o ma ion become he new no mal.
The desi abili y o na ional ce i ica ion
o HIPs in echnical ma e s appea s o be
well es ablished and, as was al eady indica ed,
a ious na ional heal h in o ma ion o ganisa-
ions ei he ha e de eloped o a e in he p o-
cess o de eloping ce i ica ion p og ammes
ha would mee he echnical s anda ds se
ou by he ISO/TC 215 Heal h In o ma ics
[22]. A he same ime, he de elopmen o
e hically-based ce i ica ion p o isions a a
na ional le el would no add ess he issue o
in e ju isdic ional e hical alidi y. This may
p esen logical and concep ual di icul ies
when ying o de elop globally de ensible
ules o e hical ce i ica ion.
To illus a e his poin , a signi ican
p opo ion o e hically un o una e (o ques-
ionable) e en s ha in ol e EHRs in ou -
sou cing is due o a lack o cla i y o wha he
ele an s anda ds a e and how hey should
be applied when na ional bounda ies a e
c ossed. Thus, i is cu en ly unclea how he
e hical codes and/o p inciples ha p e ail
in one ju isdic ion should be applied. E en
mo e impo an ly, wha undamen al p inci-
ples should be used when heal h in o ma ion
se ices a e ou sou ced om one ju isdic ion
o ano he [23]. Fo example, i is unclea
wha s anda ds, e hics, o p inciples should
apply when adiog aphs o igina ing om
Chicago a e ead in Bangalo e o Zu ich,
when heal h se ice ela ed billings o igi-
na ing om Be lin o Mexico Ci y a e ou -
sou ced o Blooming on, Indiana, o Chennai
[24-28], o when medical no es ha ha e
been aken in one coun y a e ou sou ced
o ansc ip ion in EHRs o o he coun ies
whe e no only p o essional s anda ds a e
di e en bu e en he na i e language o he
ansc ibing indi iduals is o he han ha o
he no e- aking medical p o essionals [29].
Wha e hical conside a ions, i any, a e el-
e an , and in wha sense ?
40
IMIA Yea book o Medical In o ma ics 2018
Kluge e al
A i s glance, his s a e o a ai s p es-
en s insu moun able p ac ical di icul ies.
A guably, i would be impossible o es ablish
a HIP e hics ce i ica ion p og amme in
gene al ha has global alidi y unless i was
possible o iden i y e hical p inciples ha a e
ecognized as being uni e sally alid. Mo e
pa icula ly, i would seem impossible o
de elop an in o ma ics e hics ce i ica ion
p og amme unless he e was a gene ally ac-
cep ed se o e hical p inciples and ules spe-
ci ic o heal h in o ma ics ha could o m i s
basis. This s ep has al eady been aken wi h
he de elopmen o he IMIA Code o E hics
o Heal h In o ma ion P o essionals. Wha
emains o be done is o use his Code as a
ounda ion and, wi h he e ec i e in ol e-
men o ele an global bodies such as he
WHO and IMIA, o de elop a ce i ica ion
p og amme ha has in e na ional alidi y.
Conclusion
The e hics-based ce i ica ion o HIPs is a
deside a um ha cu en ly is no being me ,
whe he ha be a na ional le els o in he
wide in e na ional con ex . The issue o ac-
coun abili y in he design, de elopmen , and
implemen a ion o heal h ca e in o ma ion
sys ems and he in a-ju isdic ional ans e
o in o ma ion become e e mo e impo an
as EHRs con inue o supe sede pape -based
eco ds and as eHeal h, elemedicine, and
ela ed modes o heal h ca e deli e y using
EHRs con inue o de elop. The need becomes
posi i ely p essing as EHR- ela ed se ices
a e ou sou ced o in o ma ion echnology
p o ide s who a e no hemsel es engaged in
he deli e y o heal h ca e bu me ely p o ide
an in o ma ics se ice, and because he ame-
wo k o iducia y obliga ion ha binds heal h
ca e p o ide s does no exis in hei case. The
ce i ica ion p og amme p oposed by he au-
ho s is in ended o mee his impo an need.
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en i onmen , in he P oceedings o MEDINFO
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S ud Heal h Technol In o m 2017;245:202-6.
2. O ganisa ion o Economic Co-Ope a ion and De-
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Publishing; 2013. A ailable om: h ps://www.
oecd.o g/s i/ieconomy/oecd_p i acy_ amewo k.
pd [Accessed: 26 Feb ua y 2018].
3. In e na ional O ganisa ion o S anda disa ion.
A ailable om: h ps://www.iso.o g/home.h ml
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