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Cella,!D.!(2025).!Can!Heal hca e!be!Humanized?!The! win!challenges!o !clinician!engagemen !and!pa ien !empowe men !in!a!complex!sys em.!In!P oceedings!
o ! he!Pa is!Ins i u e! o !Ad anced!S udy!(Vol.!21).!h ps://doi.o g/10.5281/zenodo.17281814 !
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Can Heal hca e be Humanized? The win challenges o clinician engagemen and pa ien
empowe men in a complex sys em
Da id Cella1
1 No hwes e n Uni e si y
TO CITE
Cella, D. (2025). Can Heal hca e be Humanized? The win challenges o clinician engagemen and pa ien
empowe men in a complex sys em. In P oceedings o he Pa is Ins i u e o Ad anced S udy (Vol. 21).
h ps://doi.o g/10.5281/zenodo.17281814
PUBLICATION DATE
06/10/2025
ABSTRACT
One app oach owa d humanizing heal hca e is h ough he meaning ul use o pa ien - epo ed ou come
measu es (PROMs) wo en in o clinical p ac ice. Fo his o be success ul, clinicians mus ega d hem as
use ul, in o ma i e, and ac ionable. Pa ien s mus ind hem o be ele an o he ca e hey a e ecei ing, and
easonably easy o comple e. The heal h sys em esponsible o deli e ing ca e mus suppo he smoo h
in eg a ion o PROMs in o an al eady-complex clinical wo k low. All pa ies mus alue and suppo how he
in o ma ion ob ained imp o es communica ion, ca e planning, and/o ou comes. I has p o en ex emely
challenging ac oss heal h sys ems a ound he wo ld o achie e his success. In pa , his is because p ope
planning and assessmen o ins i u ional eadiness has no been conduc ed. Ano he ba ie has been he as
a ay o PROMs a ailable om which o choose, and a measu emen ield ha has no ye e ol ed in o
some hing esembling a uni e sal s anda d. The Pa ien Repo ed Ou comes Measu emen In o ma ion
Sys em (PROMIS) p o ides he po en ial o such a s anda d. I s ca e ul implemen a ion can help enginee a
mo e humanized heal hca e sys em by p o iding a common me ic o in e p e a ion ha d i es discussion
and clinical ac ion, whe eby pa ien s and clinicians oge he a e co-p oducing op imal heal h as de ined by
he pa ien ’s alues. Key s eps owa d ealizing his ision equi e assessmen o ins i u ional eadiness,
educa ion and aining o clinicians and pa ien s, commi men o echnical suppo , ole cla i ica ion o ensu e
wo k low in eg a ion, pilo ing o moni o local success, and ongoing moni o ing o o ganiza ional cul u e o
manage change whe e necessa y.
Wha is humanized heal hca e?
In his essay, “heal hca e” is de ined as he s uc u e and unc ion o people and sys ems
ha aim o p e en and ea human disease. Ideally, hese s uc u es, and he people wo king
wi hin hem, a e designed o maximize he leng h and quali y o he li es hey se e. In his con ex ,
“humanized heal hca e” e e s o a pe son-cen e ed app oach in which clinicians ecognize he
indi idual na u e o disease exp ession and he e o e deploy a p ocess o con inuous moni o ing
o ac o s ele an o deli e y o op imal ea men . One could jus as easily call his indi idualized
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heal hca e, owing o he emphasis on he unique physical, men al, social, and cul u al in luences
on any indi idual’s heal h s a us.
The p e ailing iew o illness and ca e has his o ically been o ganized unde a medical
model. Al hough he e a e compe ing models (e.g., nu sing model, social model, holis ic model),
a medical model s ill domina es he way much o heal hca e is o ganized (Emanuel & Emanuel,
1992). In i s mos adi ional (pa e nalis ic) o m, doc o s, nu ses, and o he skilled p o essionals
deli e heal hca e by making decisions based on he e alua ion o signs and symp oms. They
ecommend ea men s and ideally assess ou comes. In con as , he ole o he pa ien is o comply
wi h he p o essional’s ecommenda ions. In a medical model, he pa ien ’s p esen a ion is
unde s ood in e ms o eason o isi (chie complain ), his o y, physical examina ion, ancilla y
es s as needed, ele an diagnosis, ea men plan, and p ognosis. Li le oom is made o
indi idual a ia ion o inpu .
A majo shi owa d humanizing heal hca e occu ed in 2001, a e he Ins i u e o
Medicine (now Na ional Academy o Medicine) eleased i s landma k wo k: “C ossing he Quali y
Chasm: A New Heal h Sys em o he 21s Cen u y” (Ins i u e o Medicine, 2001). By making a
case o a mo e pa ien - esponsi e app oach o ca e, his epo laid he ounda ion. This was
ollowed by pa ien -cen e ed “sis e ” mo emen s and ins i u ions de o ed o e-humanizing
heal hca e. Some o hese include he 2015 Uni ed S a es Cong ess 21s Cen u y Cu es Ac , which
manda ed a pa ien - ocused d ug de elopmen p ocess. This s imula ed he Uni ed S a es Food and
D ug Adminis a ion o pa ne wi h he pha maceu ical indus y and a ious public-p i a e
pa ne ships o mo e o mally and explici ly include pa ien inpu ac oss he ansla ional d ug
de elopmen pipeline. Some ime ea lie , unde he Pa ien P o ec ion and A o dable Ca e Ac o
2010, he U.S. Cong ess c ea ed he Pa ien -Cen e ed Ou comes Resea ch Ins i u e (PCORI),
which equi es ha all esea ch include subs an ial pa ien inpu om incep ion h ough
implemen a ion and publica ion. The Cen e s o Medica e and Medicaid Se ices (CMS), wi h
suppo om o ganiza ions such as he Na ional Quali y Fo um (NQF) and he Na ional Commi ee
o Quali y Assu ance (NCQA), has inc eased hei commi men o inclusion o pa ien -cen e ed
ou comes as he basis o measu ing he quali y o heal hca e se ices. Th ough his ime and in o
he p esen day, hund eds o pa ien ad ocacy g oups ha e ele a ed hei oices in d ug
de elopmen and ha e pa icipa ed in e iews o d ug alue wi h paye s and p o essional socie ies.
E en people wi h a e diseases, o en neglec ed in pha maceu ical d ug de elopmen , ha e
ga he ed unde he Na ional O ganiza ion o Ra e Diso de s (NORD) o ampli y hei conce ns
and pa icipa e in scien i ic ad ancemen .
Heal hca e sys ems aim o p o ide a mo e humanized, pa ien -cen e ed app oach by
seeking inpu di ec ly om pa ien s o plan and implemen ea men s. This app oach di ec ly
encou ages ac i e pa icipa ion o he indi idual pa ien in cla i ying he p oblem (whole pe son
diagnosis) and planning ca e. In so doing, heal h is “co-p oduced” by clinician and pa ien h ough
educa ion, counseling, and sha ed decision making (Elwin e al., 2020; Pe y e al., 2025). This is
pa icula ly impo an a in lec ion poin s in one’s heal h, such as a new diagnosis, disease
p og ession, o emission/cu e. Embedded wi hin his app oach is ca e ul conside a ion o
economic and cul u al ac o s ha in luence people’s alues is-à- is hei heal h. A heal h sys em
ha accomplishes mu ual heal h co-p oduc ion can he eby p o ide equi able, indi idualized ca e.
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Mo e b oadly, heal h sys ems ha inco po a e pa ien p e e ences in o hei ope a ional and da a
sys ems will p oduce se ices ha a e be e aligned wi h pa ien needs. This, in u n, can imp o e
indi idual and public heal h and educe was e ul o ine icien ca e.
This essay ocuses on humanizing he Uni ed S a es heal hca e sys em, al hough he
issues aised likely apply o places whe e Wes e n medicine is p ac iced a ound he wo ld. Mos
illus a ions a e d awn om he managemen o ch onic diseases, because his ac i i y consumes
app oxima ely 75% o heal hca e cos /ac i i y, wi h cos es ima es eaching nea ly 50 illion U.S.
dolla s by 2030 (Hacke , 2024). The con ex o he obse a ions, sugges ions, and conclusions
d awn he ein is he b oade “science o pa ien inpu ” (Ande son & McClea y, 2016), a e m used
o e lec igo ous me hods used o in eg a e pa ien pe spec i es, needs, and p io i ies in o
biomedical esea ch, he apeu ic de elopmen , and heal hca e deli e y. These me hods a e
quali a i e, quan i a i e, and a mix u e o he wo, o en ueled by a passiona e communi y o
s akeholde s, including pa ien s, amily membe s, esea che s, egula o s, and paye s. My ocus
will be on he meaning ul use o pa ien - epo ed ou come measu es - o PROMs - in he heal hca e
se ing, ecognizing ha he science and s a egies d i ing his a ea lie wi hin he la ge con ex o
pa ien -cen e ed science.
Why is i impo an o humanize heal hca e? ( he e idence)
Heal hca e has shi ed d ama ically in he pas 20 yea s. Technology, massi e in o ma ion
a ailabili y, and inc easing adminis a i e demands ha e changed he way we deli e ca e.
Ad ances in diagnosis and ea men ha e been imp essi e. This is no so much he case in disease
p e en ion, apa om public heal h and accine ad ances. When i comes o ch onic diseases,
p e en i e s a egies ely on beha io s ha a e challenging o modi y: die , physical ac i i y,
obacco use, and alcohol consump ion. Ch onic diseases a e on a s eady ise, accoun ing o mos
mo ali y wo ldwide and consuming heal hca e esou ces (OECD, 2025). The imp essi e ad ances
in ea men s and echnologies ha e come wi h a cos . Tha cos is mani es ed in clinician
aliena ion, o e whelm, and bu nou . T ea men decisions can o en be made by guidelines,
paymen incen i es, and c i ical pa hways aimed a inc easing e iciency; hese a e no always
based on he needs o p e e ences o pa ien s. Clinicians a e easily dis ac ed and ime-challenged,
s ealing he pe son- o-pe son connec ion ha had once been so i al o e ec i e ca e. On hei side,
pa ien s o en ind hemsel es con used by in o ma ion o e load and unce ain abou how o
e alua e he quali y o he ca e hey a e seeking o ecei ing. Wi h inc easing knowledge,
echnology, and ea men op ions, pa ien -cen e edness has diminished. Can his be e e sed by
e-humanizing heal hca e?1 I so, how can ha be done?
One e y basic way o e-humanize heal hca e is o engage pa ien s o p o ide di ec ,
indi idualized in o ma ion abou hei heal h s a us, including any symp oms o unc ional
challenges hey a e acing, pa icula ly as hey ela e o hings ha can easonably be helped by
he heal hca e sys em. PROMs a e he ehicle o doing his. Rou ine use o PROMs in indi idual
pa ien ca e can ha e bo h indi idual and socie al bene i s (Black, 2013; Gibbons e al., 2021).
1 I say “ e-humanizing” because heal hca e cen u ies ago was cha ac e ized a mo e by he doc o -pa ien ela ionship,
admi edly in la ge pa due o he lack o e ec i e ea men s o mos maladies.
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Abundan esea ch e idence in ch onic disease se ings shows ha ou ine moni o ing o pa ien
symp oms and unc ion imp o es communica ion, enhances he ca e expe ience, and imp o es
quali y o li e (Basch e al., 2015; 2017; 2025; Cella e al., 2024; 2025; C acchiolo e al., 2024;
Da is e al., 2007; Gibbons e al., 2021; Vandyk e al., 2012; Veliko a e al., 2004; Wagne e al.,
2015). Pa ien epo s o symp oms and unc ion p edic se ice u iliza ion, including high-cos
a oidable u iliza ion such as eme gency depa men isi s, unscheduled o ice isi s, and
hospi aliza ion. Thei use has been shown o educe o e all heal hca e cos , imp o e adhe ence o
medica ion ecommenda ions, and in some cases, leng hen li e (Ba be a e al., 2020a; 2020b;
Basch e al., 2015; 2017; 2025; Chan e al., 2009; Denis e al., 2019; Go ay e al., 2008; Ha ison
e al., 2012; Pea man e al., 2015; Wagne e al., 2011). The e y p ocess o pa ien sel ‐ epo ing
can imp o e clinician-pa ien communica ion, symp om managemen , pa ien sel -e icacy, quali y
o li e, and sa is ac ion wi h ca e (Absolom e al., 2021; De ma e al., 2002; Veliko a e al., 2004).
PROMs can no only in o m he clinician wi h a deepe unde s anding o he indi idual
pa ien ; hey also ha e he po en ial o in o m pa ien s abou hei heal h s a us in ela ion o o he s
wi h hei condi ion. Fu he mo e, when enough PROM da a a e ga he ed on p e iously- ea ed
pa ien s, he in o ma ion can in o m decisions abou p oceeding wi h ea men in cases whe e
he e a e op ions. Simila ly, p o ide s can be compa ed o one ano he in e ms o hei PROM
esul s, gi ing new pa ien s aluable in o ma ion when choosing a clinician. Use o PROMs can
imp o e pa ien sel -awa eness and communica ion abou symp oms and conce ns, p omo e be e
ea men adhe ence, and inc ease he o e all ca e expe ience, including sa is ac ion wi h ca e
(Ca o a e al., 2022; De ma e al., 2002; Wagne e al., 2011). I can also help iden i y o he wise
occul symp oms o conce ns ha would bene i om clinical consul a ion (Campbell e al., 2022;
Schougaa d e al., 2023). I he PROM used has popula ion e e ence alues, hen clinicians and
pa ien s can compa e hei heal h s a us o ha o o he people wi h hei condi ion, o wi h he
gene al popula ion (Dai e al., 2021; Gibbons e al., 2021). When a heal h sys em agg ega es i s
PROM da a ac oss pa ien s and se ice lines, adminis a o s can hen make s a egic decisions on
whe e o ob ain maximum bene i om a ge ed se ice line in e en ion. This has been he
p ac ice, o example, o a Ha a d Uni e si y-a ilia ed heal hca e sys em (Liu e al., 2024;
Sisodia e al., 2020), a he Uni e si y o Roches e heal h sys em (Baumhaue , 2017), a he
Cle eland Clinic ac oss diseases (h ps://consul qd.cle elandclinic.o g/ ag/pa ien - epo ed-
ou comes-measu emen -in o ma ion-sys em-p omis), a Ams e dam Uni e si y Medical Cen e s
(G oenewegen e al., 2024), using he “MyCha ” pa ien po al in an Epic elec onic heal h eco d
(EHR) en i onmen , and ac oss Denma k using PROMs o educe he need o in-pe son isi s
when people wi h ch onic illnesses a e doing well (Hjollund e al., 2023).
Ye , hese esea ch indings a e a ely implemen ed in clinical p ac ice ou side o he
esea ch se ing. Ve y ew clinics use any kind o s anda d pa ien assessmen o symp oms o
conce ns. Use by special y a ea a ies om 10-15% in gene al medical p ac ice and some
special ies, al hough he e a e excep ions, wi h as many as 80-85% o selec ed su gical
subspecial ies using PROMs (Che ez-Ojeda e al., 2024; Joe is e al., 2021). Among hose
p ac ices ha a emp o ou inely que y pa ien s, ypically ewe han hal o he in i ed pa ien s
comple e he assessmen (Hjolland e al., 2023; Te wee e al., 2023; an Engen e al., 2024), unless
he assessmen is done in he wai ing oom p io o isi , whe e pa ien adhe ence can be checked
and con i med. Fo hose pa ien s who do comple e p e- isi ques ionnai es, again, ewe han hal
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ind ha he in o ma ion ob ained is e iewed and used o in o m he isi (Lyle oeh e al., 2024).
O e ime, his deg ades any incen i e ha pa ien s migh ha e o con inue o adhe e o assessmen
eques s. Thus, indi idualized pa ien inpu can easily be los o e ime.
In essence, we ha e a si ua ion in which heal hca e p o essionals a e no success ully
ansi ioning ca e o be uly pa ien -cen e ed, despi e hei bes in en ions. One eason o his
ela es o deep, ing ained medical adi ions ha ende pa ien s as passi e ecipien s o ca e
p o ided by expe s, despi e he ecen inc ease in e idence ha ac i e pa ien pa icipa ion
imp o es ou comes in se e al ch onic diseases. Ano he eason may be he magni ude o bene i
ela i e o he cos o implemen a ion. In hei sys ema ic e iew o 116 andomized clinical ials,
Gibbons and colleagues (2021) concluded ha PROM eedback p oduces mode a e imp o emen s
in communica ion be ween clinicians and pa ien s as well as in p oblem iden i ica ion (diagnosis),
disease con ol, and small imp o emen s o quali y o li e. The same e iew u ned up se e al a eas
(pain, social unc ion, heal h pe cep ion) whe e li le o no bene i was seen, and da a quali y ha
indica es a need o mo e igo ous s udy. Pe haps ou ine adop ion would be mo e igo ous i p io
esea ch esul s we e mo e consis en ly compelling.
Wha a e he ba ie s o humanizing heal hca e?
Ba ie s o implemen a ion o mo e humanis ic ca e come om ins i u ional s uc u es
and demands, clinicians p o iding ca e, and e en pa ien s hemsel es. Resou ce limi a ions, a
gene al esis ance o change, and sys emic bias can conspi e o main ain he s a us quo (Be kman
e al, 2018). Ca e p o ide s a ound he wo ld ace ex ao dina y ime p essu es ha push hem o
con inue ha s a us quo app oach. Adding a ou ine collec ion o pa ien - epo ed in o ma ion is
hen likely o be ega ded as a h ea o e iciency. Also, many clinicians belie e hey al eady ob ain
he in o ma ion hey need om pa ien s, appa en ly unawa e o he published e idence ha his is
no necessa ily he case when i comes o pain and o he symp oms (A ena e e al., 2024; Basch,
2010; Cella & Fallow ield, 2008; Laugsand e al., 2010). Pa ien s hemsel es also pose ba ie s o
success ul implemen a ion o pa ien -cen e ed ca e. Many, bu ce ainly no all, p e e he his o ic
passi e pa ien ole. Mos will no engage in p e- isi assessmen s unless called on explici ly o do
so. Absen explana ion, pa ien s end no o app ecia e he alue o answe ing ques ions, especially
i hey do no see hei esponses ge used. Ope a ing wi hin he clinician-pa ien ela ionship a e
also sys emic and unconscious biases ha can a ec communica ion and decision-making. Unless
hey a e s uc u ed o include a o malized PROM assessmen om incep ion, mos ca e se ings
a e unc ionally esis an o implemen a ion, o en ci ing compe ing demands and limi ed e idence
o i s added alue.
Ins i u ional Ba ie s
Ins i u ional ba ie s, some imes e e ed o as s uc u al ba ie s, e e o he buil and
p ac ice-d i ing en i onmen wi hin which heal hca e is p o ided. This includes adminis a i e
policies, pe o mance demands/expec a ions, a ailable echnology, human esou ces (s a ing),
and p e ailing p o essional and p ac ice guidelines. I hese a ious componen s a e no aligned,
o a leas managed, p ac i ione s will expe ience esis ance o he use o o mal assessmen s o
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pa ien sel - epo ed heal h s a us ia PROMs. Clinical se ings ha p o ide ca e o people wi h
ch onic diseases a e ypically s a ed by people wi h a a ie y o aining and expe ience, including
physicians, nu ses, ad anced p ac ice p o ide s, echnologis s and echnicians, and ancilla y
pa ien se ice ep esen a i es who check pa ien s in, p epa e he examina ion oom and esco he
pa ien , and close he encoun e upon comple ion o he isi . Usually, none o hese indi iduals is
clea ly iden i ied as ha ing esponsibili y o collec PROM da a, o en leading o low collec ion
a es. The elec onic heal h eco d (EHR) wi h i s pa ien po al has he po en ial o add ess his
ole di usion. Pa ien s a e he e o e o en sen an email eques o log in o hei indi idual po al
and comple e a ques ionnai e p io o he isi . Howe e , his app oach ca ies se e al ba ie s o
i s own. Fi s , a pa ien mus ha e an ac i e email add ess ha is moni o ed ou inely. Second, he
pa ien mus be signed up o secu e po al access. Thi d, he pa ien mus emembe passwo d
access and some imes addi ional mul i ac o au ho iza ion p ocedu es. By his ime, in he ypical
heal h sys em, hal o mo e pa ien s a e excluded. The excluded g oup is ine i ably o e -
ep esen ed by al eady-ma ginalized pa ien s wi h lowe educa ional le els, compounding
sys emic biases al eady p esen in heal hca e deli e y (Cella e al., 2025; Pe y e al., 2025).
Among hose pa ien s who do manage o comple e he eques ed PROM, mos do no obse e ha
i ge s e iewed o used in any way. This may be because i is being collec ed o ul ill a
equi emen a he han o guide ca e planning.
Ano he ype o ins i u ional ba ie , ou side o he ea ing ins i u ion i sel , includes
ea men guidelines om p o essional socie ies and heal hca e quali y o ganiza ions. These
guidelines o en include pa ien -cen e ed ecommenda ions ha include he collec ion o speci ic
PROMs. Al hough well-in en ioned, he accumula ion o guidelines ac oss gene al medical and
special y/subspecial y ca e can o e whelm a pa en ins i u ion wi h mul iple di e en PROMs
ecommended ac oss a ange o ch onic diso de s. The in o ma ion echnology (IT) bu den o
loading mul iple measu es, o en measu ing he same o e y simila hings (e.g., pain, a igue,
dep ession), can be o e whelming and con using o IT s a who his o ically ha e no p io i ized
his ac i i y.
Clinician Ba ie s
Pe haps i goes wi hou saying, bu he alue p oposi ion o ou ine collec ion o PROMs
in clinical p ac ice es s on an assump ion o clinician engagemen in he e o . Wi hou clinician
engagemen , he use o PROMs in heal hca e will emain es ic ed o esea ch. The e a e se e al
ac o s ha h ea en clinician engagemen . The i s is ime. When a clinician is p esen ed wi h he
e idence ha ou ine pa ien moni o ing wi h a PROM p oduces be e heal h and well-being in
pa ien s, he ypical esponse, no ma e how in e es ed, is inged wi h ea … ea ha adding his
o hei ou ine will ake ime. Mo e ime spen pe pa ien will ex end wo k hou s beyond an
al eady-s ess ul numbe . Indeed, mo e complex pa ien s who epo mul iple conce ns will equi e
longe isi s (Ka zan, Thompson, & Lapin, 2024). Also, he ini ial se -up and aining equi ed o
success will ake some ime. Howe e , he idea ha implemen a ion a e ini ia ion will consume
mo e ime pe pa ien o e all is un ounded, especially when done elec onically (Absolom e al.,
2021; De ma e al., 2002; Khakzad e al., 2024). In ac , i is some imes ound ha ha ing he
s uc u ed pa ien symp om and unc ion in o ma ion in ad ance o he encoun e educes he
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amoun o ime needed o a meaning ul isi , because i helps he clinician ge igh o he
p esen ing issues, including issues ha migh no ha e o he wise come up in discussion.
Like all o us, clinicians a e subjec o bias, bo h conscious and unconscious. One
common pe cep ion is ha he use o a PROM will no add o wha he clinician al eady knows
abou he pa ien . Some clinicians a e e en o ended by he sugges ion ha hey do no know hei
pa ien s well enough o assess ele an clinical mani es a ions h ough he usual exchanges and
labo a o y es s. O he s a e simply no in e es ed in adding a new app oach o wha has become a
amilia ou ine. Ea ly adop e s o any inno a ion a e a e. These and o he clinician pe spec i es
can se e o unde mine he willingness and eadiness o a clinic o ans o m i s app oach o cen e
a ound a o mal assessmen o how pa ien s a e eeling and unc ioning in hei wo ld.
Le ’s assume ha we ha e willing and in e es ed clinical s a ac oss he spec um o he
se ice line, and ha we ha e adminis a i e suppo and an IT commi men o p og am wha e e
is needed o enable use. E en he e, he e is a ba ie o success ul launch, and i esides wi hin
clinicians. Tha ba ie is unde s anding. S anda d educa ion and aining o medical, nu sing, and
echnical s a do no include he use and in e p e a ion o PROMs. Added o his is he ac ha
he e is an absolu ely dizzying a ay o PROM op ions a ailable o use. As a esul , he clinician
app oaches decisions abou wha PROM o use wi h limi ed awa eness o i s eliabili y, alidi y,
o u ili y, ill-equipped o e alua e i c i ically o ele ance in hei clinical se ing. Absen his
in o ma ion, clinicians o en ely upon PROMs ha ha e been used and published in esea ch
p ojec s done in hei special y a ea, o upon wha a us ed colleague migh ecommend. This
app oach lacks wo c i ical elemen s equi ed o sus ain PROM use in p ac ice: In e p e abili y and
Ac ionabili y! Clinicians mus unde s and wha he PROM sco e means, and i he PROM epo
does no come wi h clea di ec ion on speci ic clinical ac ion needed (e en i ha ac ion is me ely
o que y he pa ien o mo e in o ma ion), hen he PROM will ade om use o e ime.
Pa ien Ba ie s
As wi h clinicians, pa ien engagemen is also essen ial o success ul PROM use in
p ac ice. Ye , wi hou p ope mo i a ion, pa ien s will all sho o he ime and e o equi ed o
answe a a ge ed se o ques ions in p epa a ion o clinical encoun e s. When pa ien s a e que ied
a home (ei he h ough email o “snail mail”), ypical esponse a es all below 30%, ha dly
su icien o deli e y o pa ien -cen e ed ca e a he clinic popula ion le el. E o s o inc ease ha
numbe o o e 50% ha e me wi h success a ou ins i u ion and o he s, bu i emains challenging
o d i e hose numbe s up o he p e e ed 80-90% le el. Like hei clinician coun e pa s, pa ien s
a e inunda ed wi h eques s o o m comple ion, including insu ance in o ma ion, ca e expe ience
a ings, and equi ed egula o y o ms in addi ion o PROMs. The leng h o he PROM can also be
a de e en , especially i i includes ques ions pe cei ed by pa ien s o be i ele an o hei
condi ion. The e a e also cogni i e and senso y ba ie s ha some pa ien s ace. Low li e acy,
language comp ehension, isual challenges, and cogni i e p ocessing de ici s can all con ibu e o
educed pa icipa ion in a PROM p og am. Finally, pa ien s need o see how he PROM is used in
p ac ice o ensu e hei con inued pa icipa ion.
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8
Clea ly, he solu ion he e is o p o ide b ie , ele an , easy- o- ead PROMs, wi h
eminde s and assis ance as needed, and o show pa ien s how hey a e used in p ac ice, as a
combined s a egy o emo e pa ien ba ie s o meaning ul PROM use. Mo e on his in he nex
sec ion.
How can his be changed?
I ecen ly comple ed a la ge sys em-wide pa ien -cen e ed implemen a ion p ojec in
cance symp om managemen (Cella e al., 2023; 2025). D awing om ha p ojec , om li ed
expe ience wo king wi h h ee US-based heal h sys ems, and in o med by he published li e a u e
o he pas h ee decades, I will summa ize wha I belie e o be he necessa y ools, condi ions,
and ac ions needed o achie e a humanis ic app oach o heal hca e.
Le ’s s a wi h Measu emen
“I you can no measu e i , you can no imp o e i .” This amous quo e om physicis
Lo d Kel in applies o heal h jus as i applies o empe a u e. We canno imp o e wha we canno
measu e, o a leas , we won’ know i we imp o ed some hing unless we measu e i . This is wha
inspi ed me o ocus my ca ee as a psychologis on measu emen . I we a e o imp o e any
subjec i e aspec o he human expe ience, we mus i s be able o measu e i . The bes (i no
only) way o know how a pe son is eeling is o ask di ec ly. I is c i ical o know he igh ques ions
o ask a he igh ime. Thus, my ocused way o suppo pa ien -cen e ed ca e has been he
de elopmen , alida ion, and applica ion o pa ien sel - epo o heal h s a us and quali y o li e,
u ning he subjec i e in o objec i e numbe s ha allow o compa ison o o he s and acking o
indi iduals o e ime. To achie e his, we de elop and deploy ca e ully cons uc ed and alida ed
measu es.
Long ago, I was di ec ed by psychia is and men o D . Jimmie Holland o ocus my
measu emen in e es on quali y o li e as i ela es o cance and o he li e- h ea ening illnesses.
Quickly, he e m “quali y o li e” was quali ied as Heal h- ela ed quali y o li e (HRQoL) o
na ow he scope away om issues ha a e no ela ed o one’s heal h and heal hca e. HRQoL is a
undamen ally subjec i e expe ience ha is mean o e lec he summa ion o one’s symp oms
om disease and ea men , physical, men al, and social unc ion, gene al pe cep ions o heal h,
and global pe spec i es on li e sa is ac ion and quali y.2 I e lec s one’s app aisal o li e quali y
gi en he con ex o one’s heal h and illness. This is illus a ed in Figu e 1, adap ed om Wilson
and Clea y (1995). I chose his igu e om a hos o o he s because i cen e s on a medical model-
d i en causal pa hway and hen expands on i wi h psychosocial in luences. App oaching oday’s
heal hca e deli e y sys ems wi h such a model has he bes possible chance o e ec he change
needed because i s amilia pe spec i e esona es wi h clinicians and adminis a o s.
2 Al hough he e m “heal h- ela ed quali y o li e” emains accep ed and widely used, i was eplaced by he U.S.
Food and D ug Adminis a ion wi h he mo e gene al, neu al e m “Pa ien Repo ed Ou comes (PROs)” o use in
he con ex o d ug e alua ion. This e m has become mo e dominan in heal hca e se ings. I he e o e use he PRO
and PRO Measu e (PROM) o e e o HRQoL and o he sel - epo measu es o heal h s a us.
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9
Figu e 1 Concep ual Model o Heal h- ela ed Quali y o Li e
Adap ed om Wilson and Clea y (1995)
When HRQoL is measu ed in pa ien s in heal hca e, he ques ionnai es a e o en e e ed
o as Pa ien Repo ed Ou come Measu es (PROMs). The e a e li e ally housands o PROM
op ions a ailable, pe haps oo many (mo e on his la e ). PROMs ha e he po en ial o guide
pa ien -cen e ed ca e when inco po a ed in o p ac ice, because hey can elici oubling symp oms,
pa ien needs, and p e e ences in suppo o communica ion and sha ed decision-making. I a
heal h sys em commi s o his a he en e p ise le el, agg ega ed PROM da a can iden i y s uc u al
a ge s o sys em-wide quali y imp o emen . PROMs can also imp o e communica ion be ween
clinicians and pa ien s, imp o ing disease ou comes and heal h- ela ed quali y o li e (De ma e
al., 2002; Gibbons e al., 2021; Veliko a e al., 2004; Wagne e al., 2015).
We now ha e a common, uni e sal, and global pa ien assessmen pla o m, he “Pa ien
Repo ed Ou comes Measu emen In o ma ion Sys em” (PROMIS), ha can uni y he
measu emen ield and p o ide common g ound o measu ing pa ien -cen e ed ou comes and
acking change (Cella & Hays, 2022; Cella e al., 2010). A uni ied PROM app oach has he
po en ial o ans o m heal hca e deli e y, pa icula ly o people wi h complex o mul iple ch onic
condi ions.
Enginee ing humanized heal hca e wi h PROMs
Pe haps he mos impo an equi emen o achie ing success wi h PROMIS and simila
PROMs is in eg a ing hem seamlessly and meaning ully in o clinical p ac ice. Clinicians mus
he e o e ha e he ools, knowledge, and esou ces o adminis e and in e p e PROMs in eal ime.
The in o ma ion ga he ed in PROMs should low wi h o he clinical da a om labo a o ies,
Figu e 1. Concep ual Model o Heal h- ela ed Quali y o Li e
Cha ac e is ics o Indi idual
Biological and
Physiological
Va iables
Symp om
S a us
Func ional
S a us
Gene al Heal h
Pe cep ions
Global Quali y
o Li e / Li e
Sa is ac ion
Cha ac e is ics o En i onmen
Adap ed om Wilson & Clea y (1995)
1
Heal h- ela ed Quali y o Li e (HRQoL)
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16
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