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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...
Challenging	Models	
Increased	access	to	personal	health	data	will	challenge	exis@ng		
healthcare	models	focused	on	stereot...
Preven-on	and	Compliance	
The	@mely	delivery	of	informa@on	direct	to	a	pa@ent	can	have	a	significant	
impact	on	compliance....
Individualized	Medicine	
We	are	going	to	be	leaving	popula@on	medicine	–	where	one	size	fits	all		
–	in	favour	of	individua...
India	Se?ng	Global	Standards	
India	is	demonstra@ng	an	innova@ve	approach	to	healthcare	challenges	and	
has	proven	design	...
Gene-c	Profiling	
Key	is	the	wider	use	and	reduced	cost	of	gene@c	profiling.	With	the	growth	of	
organiza@ons	providing	here...
Gene	Edi-ng	
Equipped	with	greater	understanding	of	the	individual’s	gene@c	disposi@on	and	
new	interven@on	technologies,	...
Ge?ng	Closer	to	the	Pa-ent		
New	digital	technologies	providing	tailored	advice	mean	that	healthcare	
systems	are	designed...
AI	Driving	Accuracy	
It	will	become	common	for	pa@ents	to	chat	with	ar@ficial	intelligence	health	
advisers	through	messagi...
mHealth	Regula-on	
Mobile	health	is	currently	a	fragmented	and	nascent	market	that	needs	
consolida@on	to	drive	real	chang...
An	Informa-on	Business	
Data	and	data	exchange	have	emerged	as	the	‘new	currency’	in	
	health	care,	and	will	become	a	majo...
Small	Data	
We	see	more	focus	on	improving	treatments	/	outcomes	through	“small	data”	
and	the	collec@on	and	processing	of...
Data	Gaps	
In	many	instances,	health	data	does	not	yet	follow	the	pa@ent,	crea@ng	gaps		
in	coverage	and	leading	to	fragme...
Individual	Custodians	
As	more	informa@on	is	available	to	the	individual,	many	people	are		
able	to	make	more	informed	dec...
New	Trust	Rela-onship	
The	adop@on	of	many	digital	technologies	within		
integrated	health	and	care	systems	will	require	t...
System	Change	
For	many,	implemen@ng	digital	health	technologies	requires	a		
whole	system	change.	Such	a	transforma@on	is...
Conserva-ve	Regulators	
As	legislators	and	funders	of	healthcare	tend	to	be	risk	averse,	there	is	a	
regulatory	desire	for...
Resistance	from	Healthcare	Professionals	
Change	from	clinicians	and	professionals	in	health	oen	have	the	least		
appe@te	...
Crea-ng	Pull	
One	of	the	most	effec@ve	leavers	to	encouraging	adop@on	of	digital	will	be		
the	‘fear	of	missing	out’	on	gai...
Personal	Data	Sharing	
The	sharing	of	personal	health	data	with	pa@ents	in	established	systems		
will	give	them	greater	co...
Combining	Data	Sets	
Picking	the	data	worth	sharing	and	matching	it	with	the	most	appropriate	
pla`orms	around	specific	iss...
Expanding	Set	of	Personal	Health	Data	
Data	used	to	measure	pa@ent	health	/	wellness	expands	beyond	clinical	indicators	to...
Predic-ve	Analysis	
As	we	move	to	real-@me	synthesis	of	mul@ple	data	pla`orms	we	will	gain	
improved	accuracy	and	speed.	P...
Public	Concerns	
Public	concerns	around	the	unregulated	of	use	of	data	are	growing	and,		
unless	controlled	successfully,	...
Proprietary	Data	
A	significant	challenge	to	progress	in	healthcare	resides	in	the	barriers		
and	restric@ons	that	derive	f...
Stewards	and	Security	
Despite	the	increased	enthusiasm	for	pa@ent	data	and	the	adop@on	of	EHR,	
insufficient	aben@on	is	bei...
Reaching	the	5%	
While	many	health	apps	are	used	by	the	healthy	and	the	worried	well,		
reaching	the	5%	of	pa@ents	that	in...
A	Public	Good	
Broader	use	of	healthcare	data	requires	not	only	fostering	data	system	
reliability	and	interoperability	bu...
Public	Benefit	vs.	Personal	Risk	
In	linking	and	sharing	more	data	we	will	increasingly	weigh	public	benefits	
against	perso...
Decentralized	Secure	Data	
We	need	to	decentralize	health	data	because	the	more	it’s	amassed,		
the	more	likely	it’s	going...
Global	Privacy	Standards	
Global	standards	will	eventually	be	created	for	each	country	to	sign	up	to		
and	use	as	a	basis	...
Informed	Consent	
Given	complex	data	flows,	informed	consent	is	increasingly	challenging	–		
so	an	alterna@ve	is	needed:	An...
Data	Marketplaces		
Data	is	a	currency,	it	has	a	value	and	a	price,	and	so	requires	a	marketplace.	
Ecosystems	for	trading...
Linkability	of	Open	Data	
No	data	will	be	truly	anonymous:	Current	open	data	prac@ce	assumes	that	
technology	will	be	not	...
Personal	Data	Stores	
Pa@ents	will	not	only	access	their	data,	but	also	own	it.	The	adop@on	of	
personal	data	stores	lead	...
Digital	Skills	Gaps	
As	healthcare	becomes	more	digital,	healthcare	professionals	struggle	to	keep	
up.	A	skills	gap	emerg...
A	Human	Right		
Having	access	to	your	own	health	data	will	be	seen	as	a	human	right.	
More	states	will	grant	ci@zens	legal...
Data	Ownership	
The	data	we	create	about	ourselves	should	be	owned	by	each	of	us,	not	by	the	
large	companies	that	harvest...
The	Privacy	Illusion	
There	is	a	rising	general	belief	in	the	right	to	data	privacy	and	the	right		
to	data	security.	Both...
Global	vs.	Local	
Technology	is	by	its	very	nature	global	and	data	does	not	respect	na@onal	
boundaries.	Na@on	states	try	...
Internet	of	Me	
The	combina@on	of	increasing	compu@ng	power	and	digital	health	leads	to	the	
Internet	of	Me:	Pa@ents	get	i...
Digital	Infrastructure	Gap	
With	many	hospitals	and	prac@@oners	working	across	a	mul@tude	of	IT	
pla`orms	of	very	different...
Too	Much	Informa-on	
As	more	data	is	available,	some	seek	to	restrict	the	total	informa@on	being	
shared	with	pa@ents.	Fea...
Humans	in	the	Network	
The	next	genera@on	of	implanted	devices	and	addi@onal	sensors	within	the	
body	increasingly	make	hu...
Diagnosing	Anxiety	
Facial	recogni@on	soware	has	the	capacity	to	iden@fy	stress	and	anxiety		
and,	alongside	other	digital...
Healthy	Smart	Ci-es	
The	poten@al	to	integrate	personal	health	data	with	more	‘Smart	City’		
sensing	technologies,	such	as...
More	Specialist	Healthcare	Professionals	
Beber	health	care	results	can	be	generated	by	more	focused	study	undertaken	
in	...
Augmented	Reality	
	The	applica@on	of	both	AR	and	VR	technologies	to	healthcare	will		
increase	effec@veness.	For	example,	...
In-body	Sensors	
Sensors	resident	inside	the	body	increasingly	enable	molecular	intelligence.	
Biosensors,	neural	dust,	im...
Ulterior	Mo-ves	
Some	organisa@ons	use	personal	pa@ent	data	to	screen	customers		
and	employees:	Employers	recruit	only	th...
Standardised	Measures	
The	shi	from	payment	for	interven@on	(e.g.	pills)	to	payment-on-results	is	
underway.	Many	want	agr...
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	...
Future	Agenda	
84	Brook	Street	
London	
W1K	5EH	
+44	203	0088	141	
futureagenda.org	
The	world’s	leading	open	foresight	pr...
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The Future of Patient Centric Data - initial perspective

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We are delighted to announce another major Future Agenda project – exploring the potential for more and better patient data to transform healthcare.

During the second half of 2017 a series of events are taking place around the world to bring together different views on how evolutions in data creation, availability and sharing are providing greater autonomy, control and access to patient information while simultaneously ensuring safety and security. Following the well-regarded Future Agenda format, these will be discussions between experts in health, data and adjacent areas exploring how the emerging shifts may evolve, play out and with what implications.

This is the emerging view of some of the key issues that different organisations believe will have impact how we access, share and make better use of patient data. This is the starting point for a wider global discussion that will highlight the most important shifts taking place, their likely effect and implications – as well as the associated security and safety concerns.

Investigating the topic from the perspectives of hospitals, insurance companies, pharmaceuticals, health-care providers, technology firms, advisors, researchers, medical device manufacturers, data managers and regulators, this initiative will not only highlight the global issues but also focus on regional differences and implications.

As with other recent Future Agenda projects on the Future of Trade, Cities and Philanthropy, the Future of Patient Data will produce a comprehensive view of what many different organisations and experts around the world see as the likely direction over the next decade. The resulting report will identify the key benefits, enablers and constraints and where are the major areas for further research, innovation and collaboration.

For this project we have assembled a superb combination of events with hosts including leading companies, universities and governments. The current schedule of events is:

Dubai (27th September) hosted by Herman Miller
Johannesburg (10th October) hosted by Discovery Health
Oslo (30th October) hosted by Accenture
Brussels (9th November) hosted by UCB
Sydney (15th November) co-hosted by TAL, Telstra and Pfizer
Singapore (13th or 20th November) hosted by Accenture
Mumbai (23rd November) co-hosted by Tata Consulting Services
Toronto (early December) co-hosted by Cisco and York University
San Francisco (early December) host TBC
Boston (early December) host TBC
London (14th December) hosted by Accenture

We are also looking at adding extra events as diaries allow in Copenhagen, Munich, Sao Paulo and Tel-Aviv.

As usual, throughout out the project we will share new insights gained from these discussions on Linked-In, SlideShare, Flickr and twitter so that others can comment, add to and challenge the views as they develop. Once the workshops are complete, we will compile a final report similar in format to the recent Future of Cities.

Published in: Health & Medicine
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The Future of Patient Centric Data - initial perspective

  1. 1. The Future of Pa-ent Data An Emerging View to be Challenged July 2017 The world’s leading open foresight program
  2. 2. 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.
  3. 3. 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.
  4. 4. 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.
  5. 5. 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.
  6. 6. 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.
  7. 7. 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.
  8. 8. 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.
  9. 9. 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.
  10. 10. 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.
  11. 11. 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.
  12. 12. 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.
  13. 13. 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.
  14. 14. 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.
  15. 15. 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.
  16. 16. 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.
  17. 17. 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.
  18. 18. 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.
  19. 19. 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.
  20. 20. 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.
  21. 21. 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.
  22. 22. 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.
  23. 23. 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.
  24. 24. 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
  25. 25. 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.
  26. 26. 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.
  27. 27. 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.
  28. 28. 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
  29. 29. 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.
  30. 30. 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.
  31. 31. 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.
  32. 32. 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.
  33. 33. 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.
  34. 34. 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.
  35. 35. 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.
  36. 36. 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.
  37. 37. 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.
  38. 38. 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.
  39. 39. 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.
  40. 40. 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.
  41. 41. 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.
  42. 42. 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.
  43. 43. 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.
  44. 44. 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.
  45. 45. 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.
  46. 46. 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.
  47. 47. 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.
  48. 48. 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.
  49. 49. 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
  50. 50. 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.
  51. 51. 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.
  52. 52. 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.
  53. 53. 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.
  54. 54. 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 @futureagenda

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