## Martha Monrad Hansen & Karen Korning Zethsen*

Is Electronic Access to Medical Records an Empowering and Patientcentered Initiative? - A Qualitative Contextual and Linguistic Analysis of Danish Electronic Record

## Abstract

Political	correctness	demands	a	patient	empowering	and	patient-centered	approach	to	health	care	and	today	patients are	increasingly	involved	in,	and	responsible	for,	their	own	health.	Patients	are	potentially	subjected	to	large	amounts of	health	information	and,	in	a	Danish	context,	patients	have	recently	gained	easy	electronic	access	to	their	hospital records.	Access,	which	used	to	be	by	application,	is	now	only	a	few	clicks	away.	This	initiative	is	praised	as	patient empowering	and	patient-centered	even	though	the	e-records	 are	 not	 written	 for	 patients,	 but	 are	 the	 working	 tool of	 health	 professionals.	 Thus,	 an	 expert	 language	 text,	 as	 it	 stands,	 has	 to	 function	 as	 patient	 information.	 In	 this article,	 we	 examine	 the	 language	 of	 the	 e-records	 with	 a	 view	 to	 determining	 potential	 lay-friendliness	 and	 thus patient-centeredness.	We	also	discuss	whether	access,	by	definition,	is	a	progressive	initiative	and	whether	patient empowerment	is	always	the	same	as	patient-centeredness.

## Keywords

patient	empowerment;	patient-centeredness;	health	literacy;	e-records;	lay-friendliness

## 1. Introduction and background

Over	the	last	decades,	the	discourse	of	the	health-care	systems	in	the	Western	world	has	changed from	being	characterised	by	a	medical	hegemony	to	a	more	patient-centered	discourse.	Consequently,	in	many	health-care	systems	the	doctor	is	no	longer	seen	as	an	autonomous	expert	and	a higher	degree	of	patient	involvement	is	called	for.	As	a	part	of	this	discourse,	the	concept	of	patient	empowerment	is	seen	both	as	a	way	to	be	patient-centered	(whether	the	patient	wants	empowerment	or	not)	and	as	a	goal	in	itself,	in	contrast	with	compliance	as	the	goal	for	the	medical hegemony	(Olesen	2010	in	Thorgaard	et	al.	2010:	319,	Holmström/Röing	2009).	This	makes	both patient-centeredness	and	patient	empowerment	buzzwords	in	present	day	health	communication, used	both	separately	and	as	synonyms	(Vásquez	et	al.	2016,	Holmström/Röing	2009,	Cornwall/ Brock	2006).

In	Denmark,	both	concepts	are	constantly	referred	to,	particularly	in	the	context	of	the	health authorities		(for	example	in	Regionernes	Sundheds-IT	Organisation	2011,	Danske	Regioner	2015 and	www.regioner.dk	2009).	Emphasising	patient-centeredness	is	presumably	seen	as	politically	correct	in	the	health-care	context.	Concurrently	with	the	increased	involvement	of	patients, more	written	patient	information	has	been	published	and	made	available.	A	Danish	example	is patients'	recent	access	to	electronic	hospital	records	(e-records),	hailed	as	a	patient	empowering and	patient-centered	initiative	(in	Regionernes	Sundheds-IT	Organisation	(RSI):	Strategi	for	ITunderstøttelse	af	Patient	Empowerment	2011,	among	others).	Access	has	been	given	in	spite	of the	fact	that	this	working	tool	of	the	medical	experts	(www.sundhed.dk	2015)	may	not	be	written

* Martha Monrad Hansen affiliation affiliation marthamonrad@hotmail.com

* Karen Korning Zethsen School	of	Communiation	and	Culture Aarhus	University kkz@cc.au.dk

157

in	a	language	understandable	to	most	patients.	Giving	patients	access	to	e-records	means	that	this expert-language	text	has	to	function	as	patient	information.	It	has	never	been	studied	whether		the language	of	Danish	e-records	actually	does	function	as	patient	information.	Furthermore,	it	has never	been	investigated	if	the	access	to	e-records	is	empowering	and	patient-centered	in	practice, or	just	discursively	constructed	as	being	so.	The	aim	of	this	article	is,	therefore,	to	examine	the language	of	the	e-records	with	a	view	to	determining	potential	lay-friendliness,	patient-centeredness	and	patient	empowerment .

## 1.1.	 Readability	as	the	first	step	to	understandable,	empowering	and	patientcentered information

## Readability - a fundamental part of health literacy

An	Australian	professor	of	public	health,	Don	Nutbeam	(2000),	describes	readability	in	connection	with	health	literacy.	He	operationalises	health	literacy	as	a	continuum	with	three	levels	(Nutbeam	2000:	265):

1.  Functional health literacy where	you	can	basically	read,	understand	and	act	on	health	related	information.
2.  Interactive health literacy where	you	are	also	able	to	understand	more	collaborative	and	modern forms	of	health	communication,	e.g.	on	the	Internet.
3.  Critical health literacy where	you	are,	moreover,	able	critically	to	evaluate	health	information	and use	the	information	to	take	control	of	your	own	health,	illness	and	living	conditions.

Nutbeam's	continuum	points	out	that	even	the	basic	level	of	functional	health	literacy	requires	a person	to	be	able	to	read	(and	understand	and	act	on)	health-related	information.

## Health literacy determines patient empowerment

Nutbeam	also	makes	clear	that	only	if	you	reach	the	level	of	critical	health	literacy	are	you	empowered	as	a	patient	(Nutbeam	2000).	In	other	words,	it	is	meaningless	to	talk	about	patient	empowerment,	and	thus	patient-centeredness,	if	the	patient	is	not	able	to	at	least	read	and	understand relevant	health	information	(Nutbeam	2000:	264).	Thus,	Nutbeam	links	patient	empowerment	to health	literacy:	the	greater	the	health	literacy	level,	the	greater	the	level	of	patient	empowerment. He	also	links	health	literacy	to	empowerment	in	his	definition	of	health	literacy,	which	he	wrote for	the	World	Health	Organisation	(WHO),	as	follows	(WHO	1998:	10):

Heath	literacy	represents	the	cognitive	and	social	skills	which	determine	the	motivation	and ability	of	individuals	to	gain	access	to,	understand	and	use	information	in	ways	which	promote and	maintain	good	health.	Health	literacy	implies	the	achievement	of	a	level	of	knowledge,	personal	skills	and	confidence	to	take	action	to	improve	personal	and	community	health	by	changing	personal	lifestyles	and	living	conditions.	Health	literacy	means	more	than	being	able	to	read pamphlets	and	successfully	make	appointments.	By	improving	people's	access	to	health	information	and	their	capacity	to	use	it	effectively, health literacy is critical to empowerment (our	emphasis).

## The	definition	of	patient	empowerment

The	origin	of	patient	empowerment	is	not	found	within	health	care,	but	in	Paulo	Freire's	pedagogical	theories	from	the	1960s	and	1970s		(Askehave/Zethsen	2010).	Later,	in	the	1980s,	the	concept of	empowerment	was	used	as	a	management	tool	to	obligate	the	employees	to	follow	the	company's	management	objectives	(Olesen	2010).

Like	patient-centeredness,	the	concept	of	patient	empowerment	is	interpreted	in	many	different	ways	and	is	widely	used	and	discussed	(Strunck	2010,	Holmström/Röing	2009,	Vásquez	et al.	2016).	The	fundamental	meaning	of	the	concept	-	and	the	word	in	itself	-	is	to	give	someone power,	which	implies	evening	out	the	differences	of	power,	control,	ownership	and	competence	to act	between	various	stakeholders	-	in	the	context	of	health	communication,	often	between	patients and	the	health	authorities	(Strunck	2010:	147-180,	Sundhedsstyrelsen	2005).	Within	health	communication	most	definitions	of	empowerment	(e.g.	Rappaport	(1987),	and	Funnell	et	al.	(1991)	in Vásquez	et	al.	2016;	Rodwell	(1996)	and	Ellis-Stoll/Popkess-Vawter	(1998)	in	Holmström/Röing (2009);	WHO	(1998)),	hold	two	main	elements:

1.  Evening	out	power,	control,	ownership	and	competence
2.  The	patient's	application	of	power,	control,	ownership	and	competence

The	evening	out	of	power,	control	etc.	dominates	most	definitions	of	empowerment.	Rappaport states,	in	short,	that	empowerment	is	'the	process	by	which	people	gain	mastery	over	their	affairs' (Rappaport	1987,	in	Vásquez	et	al.	2016:	910),	which	has	become	a	seminal	definition	of	empowerment.	The	definition	by	Rodwell	also	revolves	around	the	evening	out	of	power,	control	and so	on,		saying	that	empowerment	is	'a	helping	process,	a	partnership',	'mutual	decision	making using	resources,	opportunities	and	authority,	and	freedom'	and	'to	accept	responsibility'[from the	point	of	view	of	the	patient]	(Rodwell	(1996)	in	Holmström/Röing	2009:	169).	Ellis-Stoll/ Popkess-Vawter	also	focus	on	these	characteristics,	pointing	out	that	empowerment	consists	of 'mutual	participation'	and	'individualized	knowledge	acquisition'	[from	the	point	of	view	of	the practitioner]	(Ellis-Stoll/Popkess-Vawter	(1998)	in	Holmström/Röing	2009:	169).	Funnell	et	al. especially	focus	on	competences	describing	empowerment	as	having	the	nessecary	'knowledge, skills,	attitudes	and	self-awareness'	(Funnell	et	al.	(1991)	in	Vásquez	2016:	910).

The	WHO	accords	with	Rappaport	in	the	question	of	evening	out	power,	control	and	so	on, saying	that	empowerment	is	'a	process	through	which	people	gain	greater	control	over	decisions' (WHO	1998:	354)	but	adds	'…and	actions	affecting	their	health'	(WHO	1998:	354);	and	in	this way	also	includes	the	element	of	the	patients'	application	of	power,	control	and	so	on.	Similarily, Rodwell's	definition	adds	that	the	patients'	power,	control	etc.	(resources,	opportunities,	authority	and	freedom)	should	be	used	'to	make	choices'	and	for	'mutual	decision	making'	(Rodwell (1996)	in	Holmström/Röing	2009:	169).	Funnell	et	al.	conceptualise	the	application	of	power	by stating	that	the	patient	should	have	the	knowledge,	skills,	attitudes	and	self-awareness	'necessary to	influence	their	own	behaviour	and	that	of	others	in	order	to	improve	the	quality	of	their	lives' (Funnell	et	al.	1991,	in	Vásquez	2016:	910).

However,	the	phrasings	above	concerning	the	application	of	power,	control	etc.	differ	from	one another	in	the	weighting	of	opportunity	-	the	opportunity	of	involvement	in	your	own	health	care contrary	to	the	obligation	of	involvement	(WHO	1998;	Rodwell	1996,	and	Ellis-Stoll/PopkessVawter	(1998)	in	Holmström/Röing	2009;	Funnell	et	al.	1991	in	Vásquez	2016).	The	definitions vary	from	addressing	implicit,	obvious	actions	from	the	patient	(in	the	WHO	and	Rodwell	definitions,	 among	others	(WHO	1998:	354,	Rodwell	(1996)	in	Holmström/Röing	2009:	169))	to Funnell's	addressing	of	competences	necessary	to	be	able	to	influence	(Funnell	et	al.	(1991)	in Vásquez	2016:	910).	Olesen	(	2010),	however,	points	out	that	the	evening	out	of	power,	control and	so	on	by	itself	entails	a	displacement	of	responsibility	(also	indicated	in	Rodwell's	definition) and,	in	that	way,	an	obligation	for	the	patient	to	act	and	be	involved	and	take	decisions,	for	instance,	if	they	want	successful	treatment	and	care	(Olesen	2010).

Paradoxically,	 this	 makes	 patient	 empowerment	 not	 only	 emancipating,	 but	 also	 a	 form	 of governance/management	tool	just	like	the	concept	of	empowerment	was	used	in	the	80s	(Olesen 2010).

## Similarities and differences between patient empowerment and patient centeredness

If	patient	empowerment	can	also	be	a	management	tool	that	obligates	the	patient	to	be	involved and	act	(in	a	certain	way),	then	the	concept	of	empowerment	can	be	considered	as	being	in	contrast	to	patient-centeredness;	that	is,	being	in	contrast	to	following	the	patient's	own	wishes,	needs and	possibilities.	This	is	because	some	patients'	needs	and	wishes	can	be not to	be	involved	in	decisions	regarding	their	health	-	an	often	neglected	point	that	Holmström/Röing	(2009)	do	in	fact touch	upon.	(See	also	Salmon/Hall	(2004),	who	furthermore	point	to	patient	surveys	which	show how	the	need	for	control	of	your	own	situation	can	decrease	when	you	become	ill).

Generally,	the	two	concepts	are	considered	as	two	sides	of	the	same	coin	with	many	similarities in	their	definitions.	Reviews	of	literature	on	patient-centeredness	by	Mead/Bower	have	resulted in	the	defining	of	five	distinct	dimensions	of	the	concept	(Mead/Bower	2002	in	Holmström/Röing 2009:	168).		Holmström/Röing	conclude	that	these	dimensions	may	be	looked	upon	as	the	defining	attributes	of	patient-centeredness	(Holmström/Röing	2009:	168).	These	are:	attention	to	both biological,	psychological	and	social	aspects	of	a	person's	health;	illness	as	an	individual	phenomenon;	the	sharing	of	power	and	responsibility	between	health-care	provider	and	patient	as	well as	a	therapeutic	alliance	between	the	two;	and	respect	for	the	individuality	of	the	health-care	provider	(Mead/Bower	2002	in	Holmstöm/Röing	2009:	168).

Thus,	an	overlap	in	the	definitions	of	patient-centeredness	and	empowerment	is	clear	and	both concepts	are	in	contrast	to	earlier	perspectives	on	medicine	and,	from	the	point	of	view	of	the	patient,	a	great	step	forward.	But	the	differences	are	due	to	the	potential	conflict	between	the	expected	wishes	and	needs	of	the	patients	and	the	actual	ones.	In	a	review	of	literature	on	patient-centered	care	models	and	research,	Bergman/Connaugthon	(2013)	pointed	out	that	one	of	the	greatest challenges	of	practising	patient-centered	care	is	knowing	what	is	most	important	to	a	patient,	instead	of	taking	for	granted	what	the	patient	needs.	Naturally,	the	health	care	professionals	are	under	a	constant	obligation	to	pay	attention	to	what	actually	makes	the	patients	able	to	be	involved. It	may	be	easy	to	agree	on	the	nature	of	empowerment,	but	no	doubt	more	difficult	to	fulfil	the criteria	for	empowerment	in	practice.

In	conclusion,	patient	empowerment	is	not	a	way	to	be	patient-centered	prior	to	the	patient	expressing	a	wish	to	take	an	active	part	in	decision-making.	Politically	and	professionally,	it	may be	possible	to	find	arguments	for	patient	empowerment	as	a	goal	in	itself.	According	to	Vásquez et	al.	(2016),	for	example,	it	can	be	justified	in	terms	of	ethical	considerations,	cost	controlling, health	outcomes,	and	non-health	outcomes.	In	spite	of	the	fact	that	the	two	concepts	are	often	used interchangeably,	it	is	only	when	empowerment	is	also	the	wish	of	the	patient	that	empowerment can	be	considered		a	patient-centered	initiative.	However,	fundamental	to	empowerment	and	most cases	of	patient-centeredness	is	the	requirement	that	patients	are	able	to	read	and	understand	the information	about	their	own	health	to	which	they	have	access,	e.g.	the	e-records.

The	present	study	of	the	readability	of	e-records	thus	attempts	to	shed	light	on	whether	e-records	can	be	an	empowering	and	patient-centered	initiative	in	practice	and	not	only	on	paper.	If we	find	that	e-records	are	potentially	readable	and	understandable	to	most	patients,	it	is	possible to	talk	about	e-records	as	a	patient	empowering	initiative.	In	that	case,	the	next	step	would	be	to investigate	whether	patients	wish	and	need	power,	control	etc.,	as	well	as	obligations	to	be	involved	in	their	own	health-care.	If	so,	access	to	e-records	can	rightly	be	hailed	as	both	an	empowering	and	patient-centered	initiative.	In	the	opposite	case,	it	would	no	longer	be	reasonable	to frame	the	access	to	e-records	as	both	empowering	and	patient-centered	and	this	would	be	seen	as a	mere	discursive	construct.

## 1.2.  Factors which may affect the readability of Danish e-records

## The Danish health-literacy level

In	a	study	involving	eight	EU	member	states,	47%	of	the	study	population	had	trouble	reading and	understanding	health	information	in	general,	corresponding	to	a	limited	functional	health-lit- eracy	level,	according	to	Nutbeam	(HLS-EU	Consortium	2012,	Sørensen	et	al.	2012).		Bo	et	al. (2014)	were	the	first	to	explore	the	health-literacy	level	of	the	Danish	population	using	the	Australian	HLQ-questionnaire.	They	found	that	10-20	%	of	the	population	were	not	able	to	understand health	information	sufficiently	to	know	how	to	act	or	to	interact	actively	with	health-care	professionals	(Bo	et	al.	2014).These	numbers	are	problematic	if	it	is	taken	into	consideration	that	the WHO	estimates	that	health	literacy	is	more	important	to	health	condition	than	income,	employment,	education,	race,	and	ethnicity	(Kickbusch	et	al.	2013:	7).	Thus,	a	limited	health-literacy	level	is,	for	example,	associated	with	more	risky	lifestyle	choices,	more	and	longer	hospitalisations and	a	more	inexpedient	handling	of	chronic	diseases	(Kickbusch	et	al.	2013,	ch.	2).	Moreover, a	Swiss	review	shows	that,	on	the	health	system	level,	the	extra	expenditure	caused	by	limited health	literacy	is	3-5%	of	the	health	expenditure	in	total	per	year	(Eichler	et	al.	2009:	316-321).

It	should	be	noted	that	the	study	merely	reports	on	patients'	self-perceived	ability	to	understand,	act	and	interact,	a	method	which	may	lead	to	positive	bias	with	patients	overestimating their	own	abilities	(a	person	may	believe	that	information	has	been	understood	correctly	even	if it	has	not).	The	study	furthermore	concludes	that	a	low	health-literacy	level	is	subject	to	a	social gradient	and	is	especially	noticeable	in	lower	socioeconomic	groups,	non-ethnic	Danes	and	older people.

To	avoid	the	consequences	of	a	limited	health-literacy	level	mentioned	above,	it	is	imperative to	adjust	written	health	information	for	patients	to	their	actual	health-literacy	level,	according	to both	WHO	and	Sundhedsstyrelsen	(Danish	Health	Authority;	Madsen	et	al.	2009;		Kickbusch	et al.	2013:	10).	A	clear	gap	between	the	level	of	difficulty	in	Danish	written	health	information	as	it is	written	today	and	the	readers'	capacities/skills	is	demonstrated	in	Madsen	et	al.	(2009:	18),	who recommend	that	texts	written	for	patients	should	be	targeted	at	the	level	of	5 th or	6 th grade	(11-12 years)	no	matter	who	the	reader	is.	In	other	words,	to	write	to	the	lowest	common	denominator, e.g.	by	using	everyday	words,	short	sentences	and	following	certain	layout	rules	(Madsen	et	al. 2009:	18-19).	That	is,	not	the	typical	expert	language	which	we	expect	to	find	in	the	e-records.

## Patient access to Danish e-records - a working tool for health professionals

A	Danish	example	of	health	information	hailed	as	a	patient-centered	and	patient	empowering	initiative	is	the	medical	records	to	which	patients	have	had	electronic	access	since	2010	(sundhed. dk	2015).	Between	1987	and	2010,	patients	had	the	right	to	access	hospital	records	(Vejledning om	aktindsigt	1998).	However,	in	practice,	patients	could	orally	or	in	writing	request	access	to their	hospital	records	and	retrieve	a	copy	or	read	it	together	with	a	health	professional.	Further, the	patients	had	the	right	to	get	help	understanding	the	information	in	the	records.	However,	patients	did	not	have	to	use	this	right,	even	though	the	Health	Authority's	instruction	about	access to	health	information	stated	that

' it is considered disturbing to hand over a copy of the record to the patient without medical guidance' (Vejledning	om	aktindsigt	1998).

Today	and	since	2010,	all	Danes	over	15	years	have	online	access	to	their	e-records	through	www. sundhed.dk	and	to	almost	all	their	own	hospital	data,	but	not	data	from	the	general	practitioner.	It takes	three	days	from	data	and	notes	have	been	registered	at	the	hospital	until	they	can	be	shown to	the	patient	in	their	e-records.	The	e-records	are	written	by	and	to	health	care	professionals	as a	cooperation	and	communication	tool.	The	records	to	which	the	patients	have	access	are	exactly the	same	as	those	accessed	by	health	care	professionals	(www.sundhed.dk	2015).

In	2015,	five	years	after	the	Danes	obtained	access	to	their	e-records,	an	evaluation	of	Sundhed. dk	showed	that	23	%	of	the	Danish	population	had	read	their	e-records	and	52	%	knew	about	the possibility	of	reading	them	(Analyse	Danmark	2015).	By	comparison,	a	study	from	1988	showed how	only	0.4	%	of	the	Danish	population	annually	requested	access	to	their	hospital	records	(Andersen/Jørgensen	1988).

## The effects of reading hospital records

Studies	show	a	mixed	picture	of	how	patients	are	influenced	by	their	access	to	records	-	electronic	as	well	as	on	paper.	The	literature	does	not	agree	on	subjects	such	as	security,	concerns,	confidence,	insight	and	communication,	as	some	studies	show	an	increasing	and	some	a	decreasing effect	of	patient	access	(Sergeant	1986,	Short	1986,	McLaren	1991,	Ross/Lin	2003,	Winkelman et	al.	2005,	Fisher/Windfield	2009,	Mcginn	et	al.	2011,	Zurovac	et	al.	2012,	Van	Der	Vaart	et	al. 2013,	Andrews	et	al	2014,	Giardina	et	al.	2014,	Van	der	Vaart	et	al.	2014,	Jilka	et	al.	2015,	Mcnamara	et	al.	2015).	To	our	knowledge,	it	has	never	been	examined	in	a	Danish	context	if	patients	do in	fact	benefit	from	accessing	and	reading	their	e-records,	let	alone	whether	they	understand	them.

The	readers	of	the	e-records	are	potentially	the	entire	Danish	population.	Many		readers	are	in a	situation	that	deviates	from	their	normal	condition,	because	they	are	ill	and	their	situation	is	thus potentially	a	more	vulnerable	one	(Hansen	2016:	20-21).

In	 this	 study	 we	 investigate	 the	 records	 isolated	 from	 their	 contexts.	 However,	 besides	 the above-mentioned	we	assume	that,	in	reality,	the	patients	often	receive	other	information	together with	the	records,	including	spoken	communication,	and	to	some	extent	they	know	their	own	case before	reading	the	records.	This	could	give	the	patients	some	prior	knowledge	that	facilitates	the reading	of	the	e-records.	Moreover,	some	may	be	conscious	of	the	fact	that	they	are	reading	the working	tool	of	the	health-care	provider	while	reading	the	e-records.	Still,	the	reading	situation may	well	be	one	of	the	hardest	one	can	imagine:	the	patients	have	no	possibility	of	feedback,	the content	can	have	serious	consequences	for	their	future,	they	may	be	ill	and	weakened	and	they have	to	read	online.	All	in	all,	it	is	our	assumption	that	the	context	will	not	have	a	positive	impact on	the	patients'	abilities	to	read	their	e-records.

In	conclusion,	if	we	consider	Nutbeam's	(2000)	theory	of	health-literacy	levels,	being	able	to 'read,	understand	and	act	on	health	related	information'	is	a	prerequisite	for	even	the	lowest	level	of	functional	health	literacy	and	true	empowerment	is	not	reached	before	the	level	of	critical health	literacy.	Because	the	e-records	are	the	working	tool	of	health	professionals	(sundhed.dk 2015),	we	hypothesise	that	they	are	written	in	a	language	which	is	not	generally	accessible	to	the average	patient.	If	this	is	true,	then	it	would	be	highly	unlikely	that	the	patients can and will take part	in	their	own	health	care	based	on	their	access	to	the	e-records.	The	access	to	their	e-records would	only	create	an	obligation	to	take	part.

## 1.3.  Framing access to e-records as a patient-centered and empowering initiative

In	 a	 news	 document	 from	 Danske	 Regioner	 (Danish	 local	 authorities)	 framing	 e-records,	 the chairman	of	Danske	Regioner,	Bent	Hansen,	substantiates	their	choice	of	patient	access	in	the	following	way:

With	the	electronic	patient	records	we	now	give	patients	the	possibility	for	increased	insight	into	their illness.	In	this	way,	we	meet	a	growing	need	in	the	population	that	the	health	system	be	more	open	and transparent	for	the	individual	patient	(www.regioner.dk	2009) 1 .

In	another	document	on	e-record	access,	Danske	Regioner	frame	it	more	directly	as	patient	empowerment:

The	sharing	of	knowledge	between	health	professionals	and	patients	and	their	relatives	is	an	important	factor	for	patient	empowerment.	When	access	to	health	data	and	health	information	is	easy,	the patients'	and	their	relatives'	possibilities	for	gaining	more	knowledge	about	illness	and	treatment	are increased	[…]	(Regionernes	Sundheds-IT	Organisation	2011:	12). 2

1 Translated	from	the	Danish	original	by	the	authors ( 'Med	de	elektroniske	patientjournaler	giver	vi	nu	patienterne mulighed	for	at	få	større	indsigt	i	deres	sygdomsforløb.	Dermed	imødekommer	vi	et	voksende	behov	i	befolkningen om,	at	sundhedsvæsnet	skal	være	mere	åbent	og	gennemskueligt	for	den	enkelte	patient'.)

2 Translated	by	the	authors	('Deling	af	viden	mellem	sundhedsprofessionelle	og	patienten	og	pårørende	er	en	vigtig faktor	for	patientens	empowerment.	Når	adgang	til	sundhedsdata	og	sundhedsinformationer	er	let,	øges	patientens	og pårørendes	muligheder	for	at	blive	mere	vidende	om	sygdom	og	behandling	[…]')

Danske	Regioner	also	link	the	access	to	patient-centeredness:

Transparency	and	easy	access	to	their	own	data	is	a	prerequisite	for	placing	the	citizen	at	the	centre and	creates	a	foundation	for	patient-centered	treatment.	[…]	Only	if	the	citizens	have	access	to	their own	data,	can	they	in	fact	be	said	to	be	at	the	centre	and	equipped	with	the	information	necessary	to take	an	active	part	in	their	own	treatment	(Danske	Regioner	2015:	30). 3

Key	words	in	the	statements	are	'increased	insight',	'more	open',	'transparent',	'knowledge sharing',	'patient	empowerment',	'easy	access',	'more	knowledge',	'patient-centeredness'	and 'active	part	in	own	health'.	These	claims	differ	from	our	hypothesis	of	the	e-record	not	being	empowering	and	patient-centered	and	we	will	return	to	this	contradiction	in	our	discussion.	As	mentioned	above,	the	aim	of	this	study	is	therefore	to	examine	the	language	of	the	e-records	in	order to	determine	whether	Danish	patients	are	likely	to	be	able	to	read	and	understand	their	e-records. We	shall	furthermore	discuss	the	possible	implications	of	our	results	in	relation	to	the	discursive construction	of	e-record	access	as	a	patient	empowering	and	patient-centered	initiative.

## 2. Data and method

In	order	to	analyse	the	language	of	the	e-records,	10	Danes	were	contacted	in	writing	with	a	view to	gaining	access	to	their	personal	e-records,	or	those	of	a	person	from	their	network.	The	persons	contacted	were	not	respondents,	but	solely	the	providers	of	access	to	the	data	and	consent was	quickly	obtained	from	all	ten.	The	persons	recruited	were		from	the	personal	network,	once or	twice	removed,	of	one	of	the	authors,	which	is	deemed	to	be	methodologically	sound	as	the	researcher	had	no	possibility	of	contaminating	the	data	obtained	(Hansen	2016:	24-26).

The	10	records	analysed	an	amount	of	689	pages	in	total	and	records	varied	in	length	from	3	to 268	pages.	The	10	patients	involved,	three	men	and	seven	women,	were	between	26	and	69	years of	age.	They	had	been	treated	in	three	different	Danish	regions	and	the	reasons	for	their	hospital contact	varied	greatly.

The	data	were	subjected	to	a	qualitative	textual	readability/potential	lay-friendliness	analysis 4 in	order	to	find	out	what	characterised	the	language	of	the	records	and	whether	patients	were	likely	to	be	able	to	read	and	understand	their	records.	The	focus	of	the	analysis	was,	as	mentioned, on	the	reader's	potential	understanding	of	the	text	rather	than	the	content.	The	analysis	was	structured	along	the	following	parameters,	inspired	by	Nord	(1991),	Helder	(2011)	and	Jensen	(2013), who	set	out	analytical	parameters	for	professional,	factual	texts:

General comments :	e.g.	layout,	spelling,	cohesion	and	coherence

Syntax :	e.g.	sentence	length,	density	of	information,	voice,	nominalisation	and	premodification

Lexis :	e.g.	expert	terminology,	Latin,	abbreviations,	euphemisms,	personal	pronouns	and	officialese

Stylistic markers :	e.g.	irony,	humour,	metaphors,	metonymy	and	analogy .

Some	of	the	parameters	are	included	in	all	three	of	the	above-mentioned	publications	and	some are	only	mentioned	in	one	of	the	publications.They	were	chosen	on	the	basis	of	their	significant role	in	regards	to	the	ability	of	patients	to	read	and	understand	their	records.

To	be	able	to	analyse	689	pages,	the	analysis	was	carried	out	in	two	steps.	Firstly,	all	689	pages	were	read	and	genre	characteristics,	and	illustrative	examples	of	the	analytical	parametres	or other	conspicuous	phenomena	concerning	the	readability	were	noted	down	under	the	above	four headings,	resulting	in	an	illustrative	analysis.	Secondly,	certain	moves	were	chosen	for	a	more	de- tailed	analysis,	namely	the	moves	which	deal	with	plans	for	the	future.	If	access	to	e-records	is	to boost	patient	empowerment,	it	is	crucial	that	the	patients	understand	the	parts	of	the	records	which describe	specifically	whether	the	patient	needs	to	act	on	something	or	behave	in	a	certain	way	in future.	These	moves	amounted	to	a	total	of	23	pages	for	all	10	records	and	these	pages	were	analysed	in	detail	in	accordance	with	the	parametres	listed	above,	as	well	as	the	parametres	identified in	the	first	step	of	the	analysis.	The	analyses	reported	on	in	this	article	are	the	combined	results	of the	two	analyses.	They	are	qualitative	in	nature,	with	a	quantitative	element	in	the	sense	that	frequency	has	not	been	statistically	calculated,	but	is	commented	upon	when	a	tendency	is	clear.	For example,	'the	abbreviation	'pt.'	is	only	spelled	out	once	in	the	689	pages'.

3 Translated	by	the	authors	('Åbenhed	og	let	adgang	til	egne	data	er	forudsætningen	for	at	sætte	borgeren	i	centrum og	skabe	grundlaget	for	patientcentreret	behandling.	[…]	Kun	hvis	borgeren	har	adgang	til	egne	data,	kan	borgeren	reelt siges	at	være	i	centrum	og	udstyret	med	de	oplysninger,	der	er	nødvendige	for	at	kunne	tage	aktiv	del	i	eget	behandlingsforløb')

4 In	this	article,	we	use	readability	and	potential	lay-friendliness	interchangeably.

## 3. Results

As	mentioned	above,	the	analyses	seek	to	characterise	the	language	of	the	e-records	with	a	view to	determining	potential	readability	for	patients.	Extratextually,	it	should	be	noted	that	when	accessing	records,	it	is	fairly	common	to	receive	information	from	the	system	about	technical	errors which	mean	that	some	documents	relevant	for	a	particular	set	of	records	cannot	be	accessed.	This may	potentially	damage	the	coherence	of	the	records.	Following	are	the	most	characteristic	findings	of	the	two	analyses,	together	with	their	potential	influence	on	lay-friendliness.

## 3.1.  General comments

The	sheer	length	of	the	records	is	likely	to	contribute	negatively	to	readability.	The	longest	records	consisted	of	268	pages,	which	is	a	rather	large	number	of	pages	to	navigate,	especially	if	the patient	in	question	is	not	a	strong	reader	(Dickinson	et	al.	2001:	154,	Askehave/Zethsen	2000a: 38).	Much	information	is	simply	not	relevant	for	the	patient	and	the	level	of	redundancy	is	high. Generally,	the	e-records	have	a	clear	and	logical	structure,	which	is	likely	to	have	a	positive	influence	on	lay-friendliness	(Keselman	et	al.	2007:	402,	Jensen	2013:	99-102,	Dickinson	et	al.	2001: 156).	However,	the	many	headlines	are	dominated	by	expert	language	and	the	headlines	do	not always	cover	the	actual	content	of	the	section:

Headline:	'Diætistnotat:'	[Note	from	dietitian]

Text:		'Der	måles	håndgribestyrke,	der	viser	at	pt.s	håndgribestyrke	er	68%	af	referenceværdien.' [hand	grip	strength	is	measured	which	shows	that	the	patient's	hand	grip	strength	is	68%	of	the	reference	value]

The	records	are	furthermore	characterised	by	numerous	linguistic	errors,	typically	spelling	mistakes	which	could,	in	some	cases,	result	in	comprehension	problems	(Jensen	2013:	117-118,	Göpferich	2009:	42-43).	Use	of	a	particular	font	or	pitch	is	not	consistent;	neither	is	the	use	of	capital letters	and	punctuation.	This	could	potentially	confuse	the	patient	as	it	is,	for	example,	difficult to	assess	which	passages	should	be	emphasised	(Jensen	2013:	112-113,	Göpferich	2009:	40-42).

There	are	thus,	in	general,	both	elements	which	could	have	a	negative	impact	on	comprehension	and	elements	which	aid	readability.	Even	though	the	structure	is	far	from	perfect	it	is	under this	parameter	that	most	positive	features	are	found	in	the	analyses.

## 3.2.   Syntax

## Sentence length

Sentences	are	mostly	either	very	long	or	very	short,	consisting	of	one	word	only.	Long	sentences	are	not	necessarily	problematic	from	a	readability	point	of	view,	but	when	coupled	with	other expert	features,	the	typically	long	and	complex	sentences	must	be	presumed	to	hamper	understanding.	When	sentences	become	very	long	(there	are	examples	of	seven-line	sentences	in	the records),	they	are	likely	to	be	problematic	solely	on	the	grounds	of	the	amount	of	information	included.	As	regards	the	very	short	sentences,	they	are	in	fact	typical	for	expert	language	as	well:

```
'håndkøbsmedicin'	[over-the-counter	medicine]
```

The	reader	needs	to	be	able	to	interpret	this	compound	noun	which	forms	a	one-word	sentence (Jensen	2013:	66-88,	Askehave/Zethsen	2000b:	71-72).	In	this	case,	the	context	shows	that	the	patient	can	be	treated	for	pain	with	over-the-counter	medication	instead	of	prescription	painkillers.

## Voice

The	passive	voice	is	the	norm	in	the	e-records,	thus	making	it	harder	for	the	reader	to	find	out who	the	agent	is	(Jensen	2013:	48-52,	Göpferich	2009:	46-48,	Askehave/Zethsen	2000b:	71-73):

'Der	skal	holdes	gang	i	maven'	[the	stomach	should	be	kept	in	working	order]

It	is	not	evident	who	is	in	charge	of	this	task.

## Nominalisations

The	records	contain	many	nominalisations	which,	like	the	passive	voice,	hide	the	agent	of	the sentence.	Nominalisations	are	not	necessarily	problematic	if	they	are	commonly	used	in	ordinary language,	but	when	they	are	infrequent,	and	even	sound	rather	artificial	to	the	non-expert	as	is	the case	in	the	records,	they	are	typically	harder	to	process:

'Selvkateterisation'	[Selfcatheterisation]

```
'Insulinering'	[Insulinisation] 'Elevation'	[Elevation] 'Depression'	[Depression]
```

The	two	latter	examples	are	in	the	context	of	elevation	or	depression	of	the	shoulder.	These	nominalisations	are	not	common	in	Danish	and	especially	'depression'	may	be	confused	with	the	common	noun	denoting	a	mental	illness.

## Premodification

The	e-records	contain	a	very	large	number	of	premodifications.	These	can	be	challenging	to	most lay	readers	as	it	is	often	difficult	to	be	sure	what	modifies	what	when	expert	knowledge	is	not present.	The	Danish	language	exacerbates	the	problem	because	of	an	orthographic	tendency	to write	words	together	(Jensen	2013:	63-64,	Askehave/Zethsen	2000b:	72-73):

```
'transplantationsudredningsblodprøver'	[transplantationcrossmatchbloodtests] 'den	efterhånden	ret	komplekst	sammensatte	antiencephalopati-behandling'.	[the	eventually	rather complexly	constructed	antiencephalopathy-treatment]
```

Adding	to	the	complexity	is	the	fact	that	the	premodifications	themselves	often	contain	other	expert	language	characteristics	such	as	expert	terms,	nominalisations	and	officialese.

## Ellipsis

Especially	in	the	moves	about	future	plans,	ellipsis	is	very	common	and	sentences	are	short	and condensed:

```
'Højrisiko	pt.	Ikke	klar	til	stam.afd.	Tilrådes	at	indtage	Protein	drik.'	[High-risk	pt.	Not	ready	for	parent	ward.	Is	recommended	to	take	Protein	drink]
```

It	is	thus	up	to	the	patients	to	guess	the	verbs	and	pronouns	left	out.

## 3.3.  Lexis

## Expert terminology

Practically	all	sentences	in	the	e-records	are	dominated	by	expert	terminology	mostly	of	Latin/ Greek	origin.	In	contrast	to	English,	medical	Danish		often	has	a	Latin-based	expert	term	and	a Danish	lay	term	for	the	same	phenomenon	( appendicitis is,	for	example,	called appendicitis in Danish	expert	language,	but blindtarmsbetændelse when	mentioned	in	layman	terms.	The	expert term	is	simply	never	used	by	non-experts.	This	means	that	Danes	in	general	do	not	have	the	same Latin-based	medical	vocabulary	as	English-speaking	people	(Zethsen	2004:	125-142,	Askehave/ Zethsen	2000b:	69-70).	These	are	just	a	few	of	the	many	examples	of	expert	terminology:

```
'ekskoriation'	[excoriation] 'Terapeutisk	ascitespunktur'	[Therapeutic	ascites	puncture] 'Orienteret	x	3.	ABC-stabil.'	[orientated	x	3.	ABC-stable] 'biomekanisk	bevægelsesterapi'	[biomecanical	movement	therapy] 'Smertedækket	med	Epi.	Breiviks	blanding.	12ml.'.	[pain-relieved	with	Epi.	Breivik's	mixture.	12 ml.] 'pater'	[The	Latin	'pater'referring	to	a	father]
```

## Common expressions with an expert meaning

Another	example	of	the	use	of	expert	terminology	is	when	'ordinary'	Danish	words	are	used	with an	expert	meaning	thus	creating	'false	friends'	(Jensen,	2013:	59,	Askehave/Zethsen	2000a:	31, Helder	2011:	149-150,	Askehave/Zethsen	2000b:	70):

```
'Positiv'/'negativ'	[positive/negative]
```

Within	medical	jargon,	the	fact	that	a	test	is	positive	is	often	not	good	news	and	vice	versa,	which is	the	opposite	of	the	everyday	usage	of	the	words.

```
'Patienten skal derfor fortsat behandles konservativt.' [Thus the patient should still be treated conservatively ]
```

'Conservatively'	would	for	most	Danes	have	political	connotations.

```
'biomekanisk bevægelsesterapi' [biomechanical movement therapy ]
```

The	word	'therapy'	has	clear	psychological	connotations	in	Danish	and	is	not	usually	applied	to any	form	of	physical	treatment.

```
'Dettes gøres under dække af 10 ml lidokain.' [this is done under cover of 10 ml lidokain]
```

It	simply	informs	the	reader	of	the	anaesthetic	used,	but	to	the	non-expert	it	sounds	rather	dubious.	Generally	speaking,	very	few	examples	or	analogies	are	used	to	explain	the	expert	content	of the	records.	The	text	is	much	more	abstract	than	concrete,	which	is	especially	problematic	in	the moves	which	set	out	plans	for	the	future	-	plans	which	may	actively	involve	the	patient	(Jensen 2013:	65-66	and	85-87).

## Abbreviations and unexplained numbers

The	many	abbreviations	in	the	e-records	may	cause	readability	problems	as	the	reader	is	unable	to decipher	them	(Short	1986:	1317,	Bhavnani	et	al.	2010:	3,	Göpferich	2009:	46-47):

'Rp.	kolpo	om	4	mdr.'.	[the	three	abbreviations	here	mean	'recipie	colposcopy	in	4	months']

'CS'	[The	abbreviation	'CS'	stands	for	the	English	term	'cervical	screening'	which	is	an	added	complication.	The	English	expression	is	very	likely	not	understandable	to	most	Danes	even	if	they	were able	to	write	out	the	abbreviation]

'Pt.'['patient'	is	abbreviated	to	'pt.'	which	in	ordinary	Danish	is	the	abbreviation	for	the	Latin	expression	'pro	tempore'	meaning	'for	the	time	being'.	Only	once	in	689	pages	is	'patient'	spelled	out.

Numbers	are	rarely	explained	and	may	therefore	be	nonsensical	to	patients.	An	exception	is	the following	example	(Keselman	et	al.	2007:	402,	Jensen	2013:	85-88):

'Pt.s	HbA1c	er	57,	og	det	er	også	ganske	fint	for	en	diabetespt.'	[Pt's	HbA1c	is	57,	and	this	is	actually quite good for a diabetes patient]

In	the	above	example,	the	number	is	interpreted	and	translated,	which	makes	it	accessible	to	the patient.

## Officialese

Officialese	may	be	known	by	patients	from	other	contexts	and	may	be	understandable	to	some patients.	However,	patients	who	are	not	strong	readers	may	find	the	writing	style	inaccessible. Whether	it	is	understandable	or	not,	it	distances	the	patient	from	the	writer	and	the	communication	becomes	very	formal	and	impersonal	(Jensen	2013:	47-49,	Bjerre	2011:	99-103,	Askehave/ Zethsen	2000a:	32).

'Patienten	informeret	om	telefonisk	svar	fra	sygeplejerske	om	2	uger'.	[patient	informed	of	telephonic answer	from	nurse	in	2	weeks]

'Han	genoptager	fødeindtagelsen'	[he	resumes	food	intake]

## Synonymy

Synonymy,	especially	 in	 the	 form	 of	 using	 both	 the	 Latin	 and	 the	 Danish	 terminology	 interchangeably	and	in	the	form	of	inconsistent	abbreviations,	is	common	in	the	records:

'Hernie/brok' [hernia from Latin and layman Danish, respectively]

BS/blods. [blood sugar, two different abbreviations]

Synonymy	is	generally	not	advised	in	texts	directed	at	lay	people	as	the	phenomenon	is	likely	to create	confusion.	The	layperson	may	simply	not	know	that	two	expressions	stand	for	the	same,	as in	the	case	with	the	two	expressions	for	'hernia',	and	they	may	assume	that	a	second	condition	is involved	(Jensen	2013:	56-62,	Askehave/Zethsen	2010:	106).

## Presupposition

Expert	terminology,	abbreviations,	unexplained	numbers	in	themselves	involve	the	presupposition	that	the	reader	is	familiar	with	the	terms	and	expressions	and	will	understand	the	content. Otherwise	the	communication	would	be	meaningless.	However,	there	is	also	another	kind	of	presupposition	in	the	e-records	involving	expressions	which	are	not	difficult	to	understand	as	such, but	where	the	lay	reader	may	not	know	what	the	expressions	entail	(Jensen	2013:	64-66):

'Vi tager nye blodprøver i dag, for at se om han er på vej den forkerte vej.'. [we will take new blood samples today to see if he is taking the wrong direction ]

In	this	example,	the	reader	may	not	know	what	'the	wrong	direction'	actually	indicates.

'Forslag til evt. yderligere udredning og behandling: Knoglevenlig livsstil .'[Proposal for possible further investigation and treatment: bone-friendly lifestyle ]

In	this	example,	it	is	presupposed	that	the	reader	knows	what	a	'bone-friendly	lifestyle'	entails.

'Henvist	[til	gynækologisk	ambulatorium]	fra	egen	læge	pga	ASCUS.	Kendt	med	psoriasis.'	[Referred	[to	gynecological	outpatient	clinic]	from	own	doctor	due	to	ASCUS.	Known	with	psoriasis.]

In	this	rather	complex	example,	it	is	presupposed	that	the	reader	understands	the	abbreviation	ASCUS	(a	form	of	abnormal	cells),	but	also	the	medical	connection	between	the	presence	of	abnormal	cells	in	the	cervix	and	the	skin	disease	psoriasis.

## Pronouns

These	are	frequently	left	out	with	the	same	effect	as	the	passive	voice	and	nominalisation.	The agent	is	hidden	and	the	sentence	becomes	more	impersonal	(Göpferich	2009:	43-44,	Askehave/ Zethsen	2000b:	71-72):

'Må	tage	frit	per	os	og	supplere	med	Glucose	20%	35	ml/time.'	[Can	take	freely	per	os	and	supplement	with	Glucose	20%	35	ml/hour]

## 3.4.  Stylistic markers

In	connection	with	the	e-records,	stylistic	markers	are	notable	through	their	absence.	There	are	a few	metaphors	like:

'Vi	giver	alt	hvad	vi	har	i	skuffen	imod	encefalopati.'	[we	give	everything	we	have	in	the	drawer against	encefalopati]

but	generally	the	text	is	very	formal	and	does	not	contain	metaphors,	wordplay,	and	so	on.	This absence	is	of	course	characteristic	for	expert	language,	though	metaphors	and	analogies	could	be used	to	make	difficult	content	more	accessible	to	the	layman	reader.

The	text	is	not	characterised	by	euphemisms	with	the	exception	of	the	mention	of	bodily	functions.	In	the	cases	where	the	euphemism	is	created	by	means	of	Latin:

```
'faeces'	[faeces]
```

It	may	not	be	understood	by	the	average	patient,	whereas	the	euphemisms	which	make	use	of	everyday	expressions	are	much	easier	for	the	patient	to	understand	(Jensen	2013:	61-62):

'der	er	gang	i	maven'	[the	stomach	is	working]

## 4. Discussion and conclusion

As	appears	from	the	above	analysis,	the	e-records	are	without	doubt	written	in	highly	specialised expert	language	dominated	by	expert	terminology,	expert	syntax,	expert	presuppositions,	difficult abbreviations,	and	so	on.	This	comes	as	no	surprise	as	the	records	are	the	everyday	working	tool of	the	medical	professionals,	but	it	is	the	first	time	in	a	Danish	context	that	the	linguistic	nature	of the	e-record	discourse	has	been	documented.	Considering	the	health-literacy	levels	of	the	Danish population	in	general,	it	seems	highly	unlikely	that	all	Danes	would	understand	their	e-records. A	reasonable	hypothesis	would	even	be	that the majority of Danes will not fully understand their own e-records and will have a high potential for misunderstandings .	This	might	lead	to confusion,	insecurity,	unnecessary	fear 5 ,	and	lack	of	appropriate	action:	in	short,	not	to	increased empowerment	and/or	patient	centeredness.	Some	patients	may	of	course	be	able	to	read	and	understand	their	e-records	and	benefit	from	the	information	they	gain,	and	some	may	be	inspired	to discuss	aspects	with	their	doctor	and	thus	gain	new	insights,	but	we	believe	that	the	language	of the	e-records	is	so	complex	that	the	majority	of	Danes	will	not	benefit	from	access.	According	to Nutbeam	(2000),	even	the	lowest	level	of	his	health-literacy	continuum,	functional	health	literacy,	requires	the	patient	to	be	able	to	basically	read,	understand	and	act	on	health	related	information.	True	empowerment	cannot	take	place	unless	the	patients	have	critical	health	literacy,	which allows	them	to	critically	evaluate	health	information	and	use	the	information	to	take	control	of their	own	health,	illness	and	living	conditions.	It	may	be	utopian	that	all	members	of	a	society	can gain	critical	health	literacy	and	thus	true	empowerment	in	Nutbeam's	understanding.	However,	it seems	a	fair	requirement	that	all	patients	should	be	able	to	read	and	understand	information	made available	to	them	about	their	own	health.	If	this	is	not	the	case,	we	find	the	claim	that	increased empowerment	takes	place	very	questionable.	If	we	return	to	the	statements	from	the	Danish	local	authorities	it	is	quite	clear	that	by	introducing	the	new	access	to	e-records	with	expressions such	as	'increased	insight',	'knowledge'	and	'knowledge	sharing',	'openness',	'transparency',	'easy	access',	an	'active	part	in	[their]	own	health',	the	notions	of	'patient	empowerment' and	'patient-centeredness'	are	presumed.	It	seems	to	us	that	the	Danish	local	authorities	confuse 'easy	access'	electronically	with real access :	that	is,	when	patients	actually	can	read	and	understand	the	information	provided.	In	the	same	way,	the	Danish	local	authorities	seem	to	disregard the	fact	that	empowering	e-records	would	only	be	patient-centered	if	patients	actually	want	to	be involved	in	all	details	of	their	illnesses	and	treatment.	Thus,	completely	open	electronic	patient access	to	the	'raw'	records,	so	to	speak,	may	in	fact	be	a	far	cry	from	a	truly	patient-centered	initiative.

5 In	this	article	we	focus	on	the	linguistic	aspects	of	the	e-records	in	our	analyses.	Another	relevant	dimension	would be	risk	communication.	Expert	perception	and	communication	of	risk	may	be	very	different	from	those	of	laymen:	for example,	a	doctor	may	write	about	a	suspicion	of	cancer	even	though	he	deems	the	risk	to	be	less	than	5%.	The	patient,

Patients	are	clearly	not	the	primary	target	group	of	the	e-records,	but	the	question	remains why	access	to	e-records	is	discursively	constructed	as	a	patient	centered	and	patient	empowering initiative.	At	the	moment,	we	can	only	provide	qualified	guesses.	Possible	answers	may	involve meeting	pressure	from	resourceful	patient	groups,	political	correctness	(providing	access	to	unfiltered	information	in	the	name	of	transparency	may	seem	to	be	the	acceptable	thing	to	do),	or a	kind	of	disclaimer	(patients	cannot	claim	that	they	did	not	know	giving	them	a	responsibility to	act	themselves	if	something	is	wrong),	and	thus	empowerment	seems	to	be	used	as	a	form	of governance	knowingly	or	unknowingly.	A	more	positive	answer	would	be	that	politicians	at	the Danske	Regioner	hold	a	genuine	desire	to	share	information	and	create	patient	empowerment,	but that	they	lack	awareness	of	the	nature	of	the	e-records	and	are	ignorant	of	the	fact	that	access	is not	necessarily	the	same	as	successful	communication 6 .

Giving	patients	access	to	a	document	they	are,	in	many	cases,	most	likely	not	able	to	read	and understand;	and,	in	addition,	framing	this	as	empowerment,	may	lead	to	patients		not	being	able to	meet	their	obligations	(as	stated	by	Olesen	(2010).	Furthermore,	this	may	lead	to	the	Danish	local	authorities	disregarding	the	fact	that	patients	need	more	help	to	get	involved	in	their	care	and treatment.	According	to	Olesen	(2010),	the	health-care	system	can 'shift the responsibility for the individual patients as they themselves become responsible partakers in their own treatment', which	he	characterises	as 'empowerment on the terms of the health-care system ' 7 -	as	opposed	to being	on	the	terms	of	the	patient.

The	conclusions	of	this	article	have	been	drawn	on	the	basis	of	e-records	seen	in	isolation.	In reality,	we	assume	that	patients	often	receive	other	information	together	with	the	records,	including	spoken	communication,	and,	to	some	extent,	they	know	their	own	case	before	reading	the	records.	In	contrast,	the	reading	situation	may	well	be	one	of	the	hardest	one	can	imagine:	the	patients	have	no	possibility	of	feedback,	the	content	can	have	serious	consequences	for	their	future,

when	reading	about	the	suspicion,	may	think	of	the	risk	as	much	higher.

6 For	a	more	detailed	discussion	see	Zethsen	(2018).

7 Translated	by	the	authors	('kaste	en	del	af	ansvaret	for	de	enkelte	patienter	af	sig,	da	disse	nu	selv	er	ansvarlige parthavere	i	sygdommens	forløb...empowerment	på	sundhedssystemets	præmisser')

they	may	be	ill	and	weakened	and	they	have	to	read	online.	As	for	the	validity	of	our	results	we can	say	that we -	as	highly	educated	readers	-	have	analysed	689	pages	of	e-records	without	even being	close	to	understanding	all	of	the	content.

## 5. Practice implications and future studies

Some	patients	may	benefit	from	access	to	their	e-records	but,	based	on	the	present	study,	we	fear that	access	for	everyone	is	a	misguided	course	of		action	more	than	a	patient-centered	initiative, and	would	recommend	the	authorities	to	withdraw	the	initiative/re-consider	the	policy.	We	are aware	that	this	would	be	a	difficult	political	decision	and	would	require	reception	studies	showing a	harmful	effect	on	patients,	but	as	it	is	now	we	find	it	hard	to	believe	that	access	to	these	expert texts	is	an	advantage	to	most	Danes.	We	believe	that	there	is	a	large	potential	for	a	negative	psychological	effect	on	many	patients.	In	particular,	the	time	which	is	likely	to	pass	between	reading the	e-records	and	the	possibility	of	talking	to	a	health	professional	is	a	cause	for	worry.	Apart	from the	problems	of	simply	(mis)understanding	the	e-records	and	the	risk	of	confusion	and	perhaps fear,	there	is	a	psychological	aspect	which	has	not	been	investigated.	What	is	the	effect	on	patients	of	reading	a	sometimes	very	large,	and	perhaps	overwhelming,	number	of	pages	and	a	large number	of	details	about	their	illnesses?	Is	openness	and	transparency	always	the	same	as	patientcenteredness	(even	in	cases	when	the	information	offered	is	fully	understandable	to	the	patient)?

In	our	study,	we	have	seen	the	e-records	from	the	patient's	perspective,	though	we	have	not tested	how	much	patients	do	in	fact	understand.	This	would	be	an	interesting	study,	perhaps	with the	aim	of	finding	out	which	phenomena	most	hamper	understanding.	Another	important	perspective	is	that	of	the	medical	professionals.	It	could	be	hypothesised	that	the	open	access	has	had	a negative	effect	on	the	way	they	communicate	with	each	other	freely	and	directly.	This	was	supported	by	the	results	of	a	recent	master	thesis	at	Aarhus	University	by	Anders	Jensen	(2017).

His	study,	which	was	based	on	12	semi-structured	interviews	with	hospital	doctors,	concluded that	the	doctors	found	that	electronic	patient	access	had	put	constraints	on	their	expert-to	expert working	tool.	Their	main	concerns	were	that	patients	may	be	offended	by	(and	perhaps	complain about)	the	direct	tone	they	use	for	practical	and	efficient	purposes.	They	were	afraid	to	vent	hypotheses	for	diagnostic	purposes	in	order	not	to	scare	the	patient	and	therefore	sometimes	deliberately	camouflaged	with	complex	expert	language	to	ensure	that	the	patient	did	NOT	understand. In	general,	they	considered	patients	as	not	understanding	and	therefore	deplored	the	fact	that	patients	read	and	misunderstand	their	records	before	they	have	had	a	chance	to	talk	with	a	doctor.

We	cannot	recommend	access	for	all	as	long	as	the	main	purpose	of	the	e-records	is	to	be	a working	tool	for	health	professionals.	Our	recommendation,	instead	of	full	access	for	everyone, would	be	to	allow	the	possibility	to	apply	for	access,	as	was	the	case	before	the	records	became electronic.	If	access	is	granted,	it	should	automatically	be	coupled	with	a	meeting	with	a	health professional	who	can	explain	the	content	and	answer	the	patient's	questions,	but	this	is	of	course a	question	of	resources.	We	know	these	solutions	may	well	go	against	the	political	correctness	of our	time,	which	often	requires	complete	transparency,	but	hope	that	the	patient's	well-being	will eventually	become	more	important.

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