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The	Future	of	Pa-ent	Data	
	An	Emerging	View	to	be	Challenged		
	July	2017	
	
	
The	world’s	leading	open	foresight	program
Context	
This	is	an	ini@al	point	of	view	on	the	topic	of	pa@ent	centric	data.	It	is	a	
perspec@ve	to	be	shared,	challenged,	built	upon	and	enhanced	via	a	series	
global	discussions	that	are	taking	place	throughout	the	second	half	of	2017.
Challenging	Models	
Increased	access	to	personal	health	data	will	challenge	exis@ng		
healthcare	models	focused	on	stereotypical	condi@ons.	In	the	future		
several	governments	expect	personalized	diagnosis	to	be	commonplace.
Preven-on	and	Compliance	
The	@mely	delivery	of	informa@on	direct	to	a	pa@ent	can	have	a	significant	
impact	on	compliance.	Gathering	lifestyle	data	via	remote	monitoring	
technologies	and	wearables	adds	preventa@ve	ac@on	into	the	treatment.
Individualized	Medicine	
We	are	going	to	be	leaving	popula@on	medicine	–	where	one	size	fits	all		
–	in	favour	of	individualized	medicine.	Implicit	in	this	is	that		
the	pa@ents	will	increasingly	drive	their	own	care.
India	Se?ng	Global	Standards	
India	is	demonstra@ng	an	innova@ve	approach	to	healthcare	challenges	and	
has	proven	design	solu@ons	for	low-income	popula@ons.	These	solu@ons	will	
be	applied	to	higher	income	economies	with	even	greater	efficiency	benefits.
Gene-c	Profiling	
Key	is	the	wider	use	and	reduced	cost	of	gene@c	profiling.	With	the	growth	of	
organiza@ons	providing	hereditary	gene@c	informa@on	commercially,	more	
people	can	see	future	condi@ons	early	and	so	take	preventa@ve	ac@on.
Gene	Edi-ng	
Equipped	with	greater	understanding	of	the	individual’s	gene@c	disposi@on	and	
new	interven@on	technologies,	we	can	proac@vely	edit	genes	and	undertake	
minimally	invasive	surgery	to	reduce	the	need	for	major	surgery	in	later	years.
Ge?ng	Closer	to	the	Pa-ent		
New	digital	technologies	providing	tailored	advice	mean	that	healthcare	
systems	are	designed	more	for	the	pa@ent’s	convenience,	at	home,	and	less	
around	expensive,	over-stretched	facili@es	such	as	hospitals.
AI	Driving	Accuracy	
It	will	become	common	for	pa@ents	to	chat	with	ar@ficial	intelligence	health	
advisers	through	messaging	apps	-	As	more	people	use	these	services,	the	
more	data	is	collected	and	therefore	the	more	accurate	diagnosis	can	be.
mHealth	Regula-on	
Mobile	health	is	currently	a	fragmented	and	nascent	market	that	needs	
consolida@on	to	drive	real	change.	Regula@on	will	be	key,	par@cularly	as		
there	is	a	move	beyond	wellness	towards	managing	chronic	condi@ons.
An	Informa-on	Business	
Data	and	data	exchange	have	emerged	as	the	‘new	currency’	in	
	health	care,	and	will	become	a	major	force	in	redefining	rela@onships,	
transforming	the	industry	into	an	informa@on-driven	business.
Small	Data	
We	see	more	focus	on	improving	treatments	/	outcomes	through	“small	data”	
and	the	collec@on	and	processing	of	modest	amounts	of	informa@on	from	an	
individual	pa@ent.	Data	can	be	shared	at	minimal	risk	to	pa@ent	privacy.
Data	Gaps	
In	many	instances,	health	data	does	not	yet	follow	the	pa@ent,	crea@ng	gaps		
in	coverage	and	leading	to	fragmented,	uncoordinated	care	that	diminishes	
quality	and	drives	up	costs.	In	the	future,	these	gaps	will	disappear.
Individual	Custodians	
As	more	informa@on	is	available	to	the	individual,	many	people	are		
able	to	make	more	informed	decisions	about	their	health	because		
they	can	become	custodians	of	their	own	health	records.
New	Trust	Rela-onship	
The	adop@on	of	many	digital	technologies	within		
integrated	health	and	care	systems	will	require	the		
development	of	a	new	trust	rela@onship	with	the	ci@zen.
System	Change	
For	many,	implemen@ng	digital	health	technologies	requires	a		
whole	system	change.	Such	a	transforma@on	is	more	difficult		
to	implement	when	an	established	healthcare	system	is	in	place.
Conserva-ve	Regulators	
As	legislators	and	funders	of	healthcare	tend	to	be	risk	averse,	there	is	a	
regulatory	desire	for	certainty	with	a	con@nuous	concern	about	unintended	
consequences	of	change.	Regulators	may	therefore	slow	adop@on.
Resistance	from	Healthcare	Professionals	
Change	from	clinicians	and	professionals	in	health	oen	have	the	least		
appe@te	for	change	–	it	is	oen	viewed	as	a	threat	to	roles	and	responsibili@es.	
Dialogue	around	new	innova@ons	is	key	to	overcoming	resistance.
Crea-ng	Pull	
One	of	the	most	effec@ve	leavers	to	encouraging	adop@on	of	digital	will	be		
the	‘fear	of	missing	out’	on	gaining	a	compe@@ve	edge	in	cost	and	quality.	
Crea@ng	pull	as	well	as	push	will	be	pivotal	for	wider	pa@ent	data	sharing.
Personal	Data	Sharing	
The	sharing	of	personal	health	data	with	pa@ents	in	established	systems		
will	give	them	greater	control	over	their	own	wellness.	Pa@ents	will	
increasingly	need	to	trust	in	the	sharing	of	their	own	data	with	others.
Combining	Data	Sets	
Picking	the	data	worth	sharing	and	matching	it	with	the	most	appropriate	
pla`orms	around	specific	issues,	condi@ons,	demographics	or	public	vs.		
private	healthcare	systems	is	seen	as	the	most	pragma@c	approach.
Expanding	Set	of	Personal	Health	Data	
Data	used	to	measure	pa@ent	health	/	wellness	expands	beyond	clinical	indicators	to	
consider	social	determinants,	pa@ent	experience,	pa@ent-reported	outcomes,	
transac@onal	data,	and	real-@me	data	from	connected	objects	and	environments.
Predic-ve	Analysis	
As	we	move	to	real-@me	synthesis	of	mul@ple	data	pla`orms	we	will	gain	
improved	accuracy	and	speed.	Predic@ve	analy@cs	and	gene@c	profiling	
together	create	more	connected	predic@on	and	drive	hyper-personaliza@on
Public	Concerns	
Public	concerns	around	the	unregulated	of	use	of	data	are	growing	and,		
unless	controlled	successfully,	as	apps	become	more	popular,	fears	around	
how	personal	data	are	stored	used	and	shared	will	become	more	pointed.
Proprietary	Data	
A	significant	challenge	to	progress	in	healthcare	resides	in	the	barriers		
and	restric@ons	that	derive	from	the	treatment	of	medical	care	data		
as	a	proprietary	commodity	by	the	organiza@ons	involved.
Stewards	and	Security	
Despite	the	increased	enthusiasm	for	pa@ent	data	and	the	adop@on	of	EHR,	
insufficient	aben@on	is	being	paid	to	security.	With	more	prominent	cyber-
abacks,	we	will	trust	our	data	only	to	those	with	the	highest	levels	of	security.
Reaching	the	5%	
While	many	health	apps	are	used	by	the	healthy	and	the	worried	well,		
reaching	the	5%	of	pa@ents	that	incur	50%	of	healthcare	costs	remains		
a	major	challenge:	Comorbidity	con@nues	to	drive	the	greatest	spend.		
Diabetes	
CVD	
Depression	
Anxiety
A	Public	Good	
Broader	use	of	healthcare	data	requires	not	only	fostering	data	system	
reliability	and	interoperability	but	also	addressing	individual	data	ownership	
and	the	extent	to	which	data	should	cons@tute	a	public	good.
Public	Benefit	vs.	Personal	Risk	
In	linking	and	sharing	more	data	we	will	increasingly	weigh	public	benefits	
against	personal	risk.	The	poten@al	harm	from	unauthorised	release	of	
confiden@al	data	will	be	a	conundrum	for	many	in	the	healthcare	sector.
Decentralized	Secure	Data	
We	need	to	decentralize	health	data	because	the	more	it’s	amassed,		
the	more	likely	it’s	going	to	be	hacked.	Centralized	ownership	of		
medical	records	is	increasingly	seen	as	a	security	risk.
Global	Privacy	Standards	
Global	standards	will	eventually	be	created	for	each	country	to	sign	up	to		
and	use	as	a	basis	going	ahead:	However	garnering	agreement	will	be		
difficult	as	each	region	has	a	different	approach	to	pa@ent	data.
Informed	Consent	
Given	complex	data	flows,	informed	consent	is	increasingly	challenging	–		
so	an	alterna@ve	is	needed:	An	accountability	governance	model	incorpora@ng	
ethics	and	respec`ul	data	use	is	a	compelling	subs@tute	or	complement.
Data	Marketplaces		
Data	is	a	currency,	it	has	a	value	and	a	price,	and	so	requires	a	marketplace.	
Ecosystems	for	trading	data	are	emerging	and	soon	both	personal	and		
clinical	data	will	be	represented	in	new	healthcare	data	marketplaces.
Linkability	of	Open	Data	
No	data	will	be	truly	anonymous:	Current	open	data	prac@ce	assumes	that	
technology	will	be	not	be	able	to	relink	it	to	its	source.	This	is	not	the	
	case	and	so,	by	2025,	we	will	see	different	levels	of	re-iden@fica@on.
Personal	Data	Stores	
Pa@ents	will	not	only	access	their	data,	but	also	own	it.	The	adop@on	of	
personal	data	stores	lead	to	universally	accepted	creden@als	and	share	data	
with	mul@ple	partners	so	that	pa@ents	can	receive	personalized	services.
Digital	Skills	Gaps	
As	healthcare	becomes	more	digital,	healthcare	professionals	struggle	to	keep	
up.	A	skills	gap	emerges	and	the	adop@on	of	new	approaches	is	held	back.		
Re-skilling	and	up-skilling	becomes	a	priority	focus	for	many	systems.
A	Human	Right		
Having	access	to	your	own	health	data	will	be	seen	as	a	human	right.	
More	states	will	grant	ci@zens	legal	ownership	of	their	health	informa@on.		
We	will	allow	access	to	our	health	data,	but	our	data	will	be	ours	to	control.
Data	Ownership	
The	data	we	create	about	ourselves	should	be	owned	by	each	of	us,	not	by	the	
large	companies	that	harvest	it.	Users	should	own	their	own	data	and	be	free	
to	merge	it	with	other	sets	as	and	when	it	could	provide	them	useful	insight.
The	Privacy	Illusion	
There	is	a	rising	general	belief	in	the	right	to	data	privacy	and	the	right		
to	data	security.	Both	are	illusions:	Security	is	impossible	without		
increased	monitoring	-	and	so	true	privacy	is	also	impossible.
Global	vs.	Local	
Technology	is	by	its	very	nature	global	and	data	does	not	respect	na@onal	
boundaries.	Na@on	states	try	to	set	the	rules	but	tensions	in	global	
interoperability	drive	us	to	design	for	global	standards,	but	with	localised	use.
Internet	of	Me	
The	combina@on	of	increasing	compu@ng	power	and	digital	health	leads	to	the	
Internet	of	Me:	Pa@ents	get	informa@on	that	is	highly	customized	to	who	they	
are	and	treatments	become	more	effec@ve	through	greater	personaliza@on.
Digital	Infrastructure	Gap	
With	many	hospitals	and	prac@@oners	working	across	a	mul@tude	of	IT	
pla`orms	of	very	different	degrees	of	sophis@ca@on,	the	infrastructure	gap	
between	varied	facili@es	becomes	a	barrier	to	roll-out	of	new	technologies.
Too	Much	Informa-on	
As	more	data	is	available,	some	seek	to	restrict	the	total	informa@on	being	
shared	with	pa@ents.	Fear	of	data	overload	exceeding	the	individuals’	capacity	
to	see	things	in	perspec@ve	leads	pla`orms	to	filter	what	is	shared.
Humans	in	the	Network	
The	next	genera@on	of	implanted	devices	and	addi@onal	sensors	within	the	
body	increasingly	make	humans	part	of	the	network.	Safety	concerns	around	
hacking	and	privacy	issues	on	tracking	challenge	some	health	systems.
Diagnosing	Anxiety	
Facial	recogni@on	soware	has	the	capacity	to	iden@fy	stress	and	anxiety		
and,	alongside	other	digital	diagnos@c	tools	-	such	as	voice	pabern	analysis,	
will	be	increasingly	used	to	iden@fy	and	monitor	mental	health	problems.
Healthy	Smart	Ci-es	
The	poten@al	to	integrate	personal	health	data	with	more	‘Smart	City’		
sensing	technologies,	such	as	air	and	water	pollu@on	monitoring,	may		
help	achieve	the	growing	healthier	city	ambi@ons	in	some	loca@ons.
More	Specialist	Healthcare	Professionals	
Beber	health	care	results	can	be	generated	by	more	focused	study	undertaken	
in	less	@me.	For	instance,	surgeons	undergo	more	rapid	specialist	rather		
than	broader	generalist	training	-	some@mes	around	a	single	condi@on.
Augmented	Reality	
	The	applica@on	of	both	AR	and	VR	technologies	to	healthcare	will		
increase	effec@veness.	For	example,	3D	visualiza@ons	of	a	pa@ent’s	internal	
organs	within	their	body	allow	for	detailed	examina@on	before	first	incision
In-body	Sensors	
Sensors	resident	inside	the	body	increasingly	enable	molecular	intelligence.	
Biosensors,	neural	dust,	implantable	devices	and	smart	drugs	all	provide	a	
plethora	of	new	data	that	together	improve	detec@on	and	monitoring.
Ulterior	Mo-ves	
Some	organisa@ons	use	personal	pa@ent	data	to	screen	customers		
and	employees:	Employers	recruit	only	the	healthiest	and	insurance		
companies	increasingly	refuse	cover	to	those	with	unacceptable	risks.
Standardised	Measures	
The	shi	from	payment	for	interven@on	(e.g.	pills)	to	payment-on-results	is	
underway.	Many	want	agreed	standardiza@on	for	target	outcomes.	Funders,	
providers,	insurers,	regulators	and	data	pla`orms	all	seek	common	targets.
Ques-ons	
As	we	share	and	build	on	this	view	we	would	like	to	know	what	you	agree		
with,	what	you	don’t,	what	is	missing	and,	most	importantly,	what	will		
be	some	of	the	key	impacts	and	implica@ons	–	both	globally	and	regionally.
Future	Agenda	
84	Brook	Street	
London	
W1K	5EH	
+44	203	0088	141	
futureagenda.org	
The	world’s	leading	open	foresight	program	
What	do	you	think?	
Join	In	|	Add	your	views	into	the	mix	
	
www.futureagenda.org	
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