Altruism Trumping Privacy

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Henderson Page 1 of30

Douglas J. Henderson

Altruism Trumping Privacy

AWR DraftingAltruism Trumping Privacy .............................................................................................. 1

Thesis: ........................................................................................................................................................... 2

Privacy .......................................................................................................................................................... 2

Public Economics and Public Administration .............................................................................................. 5

Overview of Health Care Costs .................................................................................................................... 7

i. Table 1 .............................................................................................................................................. 9

ii. Chart 1 ............................................................................................................................................. 10

The Potential for Cost and Life Savings ..................................................................................................... 11

The Benefits of Big Data in the Health Care Industry ................................................................................ 14

What is an Altruistic Personal Health Information (PHI) Model? .............................................................. 16

Privacy Considerations and the Health Insurance Portability and Accountability Act (HIPAA) ............... 18

Health Information Technology and Big Data ............................................................................................ 21

Conclusion .................................................................................................................................................. 23

References ................................................................................................................................................... 26

Unreferenced Sources ................................................................................................................................. 29


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Thesis:

The United States Government must administer a publicly held cloud networked Big

Data Set of Private Health Information (PHI) in order to utilize Big Data Analytics and allow

free data mining of such PHI so that the health care industry can operate most cost effectively

while also meeting the health care needs of the aging United States populace with the highest

quality of care.

Privacy

Privacy bears many meanings depending on the context of use.1

The definition of privacy

often includes the right to be let alone,2 the ability to control the release of information about

ones self to others,3 and being free from intrusion or disturbance in ones personal life.

4

Privacy includes the ability to control information about ones personal beliefs, identifiable

characteristics, behaviors, dispositions, tendencies, lifestyle, and inherent natural born traits,

characteristics, or genetic structure.5 The definition of privacy includes the ability to control the

information about ones medical health information, history, and familial dispositions or

tendencies.

The health care industry by its very nature asks for, records, and collects data about

individuals and their families. This is because a person, or his or her representative, must give

information, data, tendencies, characteristics, beliefs, dispositions, lifestyles, natural born traits,

characteristics, or genetic structure(s) in order to be effectively treated. To be sure, this data and

1TED COOPER & JEFF COLLMAN,CHAPTER 4 - MANAGING INFORMATION SECURITY AND PRIVACYIN HEALTHCARE DATA MININGSTATE OF THE ART(Medical Informatics. ISIS CenterGeorgetown University School of Medicine & Stanford University Medical School 2005).

2 Samuel Warren & Louis D. Brandeis, The Right to Privacy. 4, HARVARD LAW REVIEW, 193 (1890).3COOPER & COLLMAN, supra note 1 at 99.

4Id at 99.5Jessica Litman,Information privacy/information property, Free Library1, May

(2000),http://www.thefreelibrary.com/Information privacy/information property.-a066894587.
http://www.thefreelibrary.com/Information%20privacy/information%20property.-a066894587http://www.thefreelibrary.com/Information%20privacy/information%20property.-a066894587


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information is not open to the public, no matter how many in the healthcare industry sees or

reads it. The concept of publicly displaying, saying, or writing something to the health care

industry for purposes of being treated, while such display, speech, or writing still remains

private, is known as a zone of privacy. The concept of a zone of privacy is very important in

the health care industry, and this concept simply refers to the fact that anything displayed to

medical professionals while utilizing their services, subject to a few legal exceptions, will not be

shared with the public.6

The health care industry would like to share the privacy data and information, otherwise

known as Private Health Information (PHI), amongst themselves in an effort to provide the best

possible care for patients.7Current privacy regulations limit the health care industrys ability to

freely share their received data and information. Sharing could occur if PHI were part of the

public domain, and the health care industry could operate most efficiently and cost effectively8 if

current technologies were utilized. One of the technologies that should be utilized is known as

Big Data and Big Data Analytics. Big Data is a large database of data and information obtained

from multiple sources. Big Data Analytics is a way of programming that allows for meaningful

information to be retrieved from Big Data. Herein The Big Data Set will refer to a current

technology called a cloud-networked (e.g. internet connected) publicly administered Big Data

Set that utilizes Big Data Analytics. If the health care industry also used Keynesian economic

theory principleswherein the federal government administered The Big Data Setthe health

6Stanford Encyclopedia of Philosophy, http://plato.stanford.edu/entries/privacy/(4/19/2012).

7HORVITZ, ERIC, FROM DATA TO PREDICTIONS AND DECISIONS: ENABLING EVIDENCE-BASEDHEALTHCARE,Computing Community Consortium. Microsoft ResearchComputing CommunityConsortium (CCC). Version 6: September 16, 2010, At 1.

8Policy Debate: Reforming the U.S. Health Care System, the Road Ahead, 267-284 ECONOMIC PERSPECTIVESON HEALTH INFORMATION TECHNOLOGY (Statement of David J. Brailer) (2004).
http://plato.stanford.edu/entries/privacy/http://plato.stanford.edu/entries/privacy/


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care industry would start to reverse its cost trends, be most cost effective, and provide the highest

quality of care.

Some individuals in todays society would have those that try to break down privacy

barriers get too caught up in individual boundaries and making sure that a person can keep

virtually anything private. The health care industry, though, has a historical basis for freely

sharing PHI in order to provide better quality of care. Individual boundaries and privacy

regulation in the health care industry have contributed to ballooning cost expenditure trends over

the past twenty years, though, and eventually no one will be able to sustain the cost.9 Because of

these ballooning costs, Personal Health information (PHI) must be held in the public arena for at

least 2 reasons. First, when PHI is held publicly, the accessibility will allow for the highest

quality of care because the industry will now have on-demand access to changing trends,

correlations, and possible diagnoses (not to mention decrease error). The Big Data Set will allow

better monitoring of internal processes within the entire health care industry instead of just

within one business or organization10. Second, when PHI is held publicly, the inefficiencies with

maintaining PHI privately will disappear and allow the health care industry and the information

technology industry to interoperate in the cost effective manner (at a $77 billion savings by one

estimate)11.

In order to control ballooning costs of health care, much of which is attributable to

privacy maintenance and implementation, individual privacy must heed to the greater good of

9Christopher J. Conover ,HEALTH CARE REGULATION A $169 BILLION HIDDEN TAX, Policy Analysis No. 527. October

4, 2004, at 5-23.10

ROBERT D. ATKINSON & ANDREW S. McKAY, DIGITAL PROSPERITY UNDERSTANDING THE ECONOMIC BENEFITS

OF THE INFORMATION TECHNOLOGY REVOLUTION 26-28, 39-41 (March 2007).11

Id at 270.


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society.12 The greater good of society demands a reigning in of health care cost expenditures,

but only while ensuring the health care industry is still able to provide the highest quality of care.

With public PHI, available to the health care industry as a whole, and through the utilization of a

controlled publicly administered cloud networked big data set, the health care industry can

specifically be most effective by allowing big data analytics to identify errors, trends,

correlations, indications, diagnoses, and causations.

Public Economics and Public Administration

At its most basic level, public economics is the study and thinking about whether or not

the government should participate in economic markets.13

Generally speaking publicly held

centralized systems have thus far in history not proven completely effective when being

administeredin the United States. It is also historically been thought by a large majority in the

United States that market efficiencies are most created without government intervention. In fact,

one of the negative attributes of a publicly held system of most anythinghas proven to be

that they are unreactive to local environments, and as a consequence any implementation of a

centrally held pronouncement of ideas, policies, and structures proves cumbersome and

unworkable even in the presence of what is thought should exist: efficiencies and cost

minimizations.1415

As is exhibited herein, the market as it exists for health care has created only

cost and profitability maximization (profitability maximization for those individuals and

companies that work within the industry). By taking the insights of John Maynard Keynes, and

applying to the health care industry and its technology in such a manner as laid out herein, the

12Yuhong Wu, HIPAA AND ITS PRIVACY REGULATIONS: IS THERE TOO MUCH PRIVACY REGULATION ON HEALTH

CARE INFORMATION, Citing Posner at 11 (June 2008).13

G.D. MYLES & J. HENDRIKS, INTERMEDIATE PUBLIC ECONOMICS 11 (2005).14

GERALD F. DAVIS, THE HANDBOOK OF ECONOMIC SOCIOLOGY (Neil J. Smelser& RichardSwedberg, Eds. 2nd

Edition, 2005). At 478-479.15

WILLIAM J. BAUMOL & ALAN S. BLINDER, MICROECONOMICS PRINCIPLES AND POLICY 28-34 (1998).


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health care industry can achieve the goals of cost efficiency and being able to provide the highest

quality of care.16

John Maynard Keynes believed that some individually-rational microeconomic-level

actionstaken collectively together - can lead to inefficient aggregate macroeconomic

outcomes, wherein the economy operates below its potential output and growth rate. 17 The

health care industry is an example of those inefficiencies. Keynesian Economics suggests that

government investment can stimulate the economy, and that the government should have some

intertwinement with what would otherwise be considered the private economy in order for it to

act most efficiently and with the most stability

18

. Unlike Adam Smiths theories that warned

against all economic activity by governmental agencies,19Keynes economic theory suggests

that one way that the United States government could control ballooning healthcare costs is by

stepping into the health care industry and creating a publicly held cloud networked big data set,

and thereafter released the health care industry from its obligation to maintain PHI privately.

The publicly administered cloud networked big data set of PHI would allow the health care

industry to operate most efficiently because The Big Data Set would provide them inherently.

Applying the maxims of Keynesian Economics to the health care industry to the health

care industry and creating a publicly-administered, centrally-held cloud networked big data set of

Personal Health Information (PHI) (hereafter referred to as The Big Data Set), wherein the

government does nothing more than administer and maintain The Big Data Set the health care

industry will be able to achieve the goals laid out herein. The Big Data Set will allow the

interoperability necessary to allow individual PHI to be shared across providers while also

16RUDOLPH W. TRENTON, BASIC ECONOMICS 209-211, 330 (Meredith Publishing COMPANY 1964).

17HENRY HAZLITT, THE FAILURE OF THE NEW ECONOMICS AN ANALYSIS OF THE KEYNESIAN FALLACIES (1959).

18Id.

19RUDOLPH W. TRENTON, BASIC ECONOMICS 211 (Meredith Publishing Company 1964).


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eliminating the need for all of the costs associated with medical record keeping compliancethe

record system would be maintained by the federal government. A publicly held Big Data Set

will allow health care industry to achieve the goals of a Keynesian economy:(a) Efficiency -

being administered from one point, at one level, pervasively throughout the health care system20

;

(b) Effectiveness - being available on-demand throughout the health care system; (c) Creating

optimal productivityby allowing health care professionals to focus on things not related to

maintaining privacy, records, and record keeping21

. Most economists argue is the single most-

important economic statistic and measure of economic performance,22 and studies have shown

positive correlations to productivity gains and output performance;

23

(d) Create the tools for

developing the best quality of care in the health care industrya useful, predictive, relationship

identifying (among illness, lifestyle, effects, pharmacological applications, and health care

techniques); and(e) With the elimination of errors.

Overview of Health Care Costs

The Henry J. Kaiser Family Foundation reported in 2007 that [s]pending on health care,

which is a projected to be 16.2 percent of the U.S. gross domestic product, has consistently

grown faster than the economy overall since the 1960s. [health care expenditures were] 15.2

percent of GDP in 2004;Spending on prescription drugs accounts for about 10 percent of health

expenditures.24

The United States government, realizing that there is a great need to control health care

expenditures by way of technology and digitization, has created a mandate that requires health

20ATKINSON & MCKAY supra note 9 at 26-28; 39-41.

21HAZLITT, supra note 14.

22ATKINSON, & MCKAY, supra note 14, at 12.

23Id at 14.24 Henry Kaiser Family Foundation, The, Trends in Health Care Costs and Spending. YOUR RESOURCE FOR

HEALTH POLICY INFORMATION, RESEARCH, AND ANALYSIS. (September 2007).


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care coverage by 2014 [along with a complete health record digitization (Electronic Health

Record (EHR))].25

In fact, U.S. spending on health care grew at 3.9 percent in 2010, after a

slow growth of 3.8 percent in 2009, and total health expenditures reached $2.6 trillion dollars, or

$8,402 per person, 17.9 percent of the nations GDP.26

With the exception of 2008, Health

Care Expenditures have consistently been substantially higher than both population growth and

inflation, but this trend does not need to continue.

25 American Recovery and Reinvestment Act of 2009 (ARRA), Pub. L. No. 111-5, Title XIII, 3001(c)(3)(A)(ii),123 Stat. 115, 231 (2009). (to be codified at 42 U.S.C. 300jj-11(c)(3)(A)(ii)).

26Centers for Medicare & Medicaid Services, CMS.gov.NATIONAL HEALTH EXPENDITURES 2010HIGHLIGHTS.http://www.cms.gov/NationalHealthExpendData/downloads/highlights.pdf(3/7/2012).
http://www.cms.gov/NationalHealthExpendData/downloads/highlights.pdfhttp://www.cms.gov/NationalHealthExpendData/downloads/highlights.pdf


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i. Table 1

Note to Table 1: between 1998 and 2010 National Health Expenditures have consistently been

more than 5 times population growth and almost always been at least twice as high as inflation.

In addition, Health Care Expenditures have consistently been more than 12% of Gross Domestic

Product. In addition, National Health Expenditures as a percent of GDP have never decreased,and after 2001 these costs relative to GDP have ballooned to nearly 17% of the entire domestic

product of the United States of America. These statistics clearly exhibit inefficiencies and

troubling facts. For instance, why are Health Care Expenditures consistently so much higher

than population growth? It would seem that Health Care Expendituresyear to yearwould

only increase with the size increase of the population? In an efficient system, as the size grows

there should be a point where economies of scale are realized. Privacy conventions, though, add

to total health care expenditures without allowing for the industry to behave with what would

otherwise be inherent economies of scale (wherein as the size of something grows overlaps and

redundancies can be eliminated and therefore services could be provide at a lower per individual

cost).

Year 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 20

Population

Growth 1.08% 1.07% 0.71% 1.05% 1.04% 0.69% 1.02% 0.68% 1.01% 1.00% 0.99% 0.65% 0.97

Inflation 1.60% 2.20% 3.40% 2.80% 1.60% 2.30% 2.70% 3.40% 3.20% 2.80% 3.80% -0.40% 1.60

GDP Increase 5.25% 5.99% 6.01% 3.25% 3.35% 4.49% 6.00% 6.10% 5.64% 4.65% 1.84% -2.53% 4.05

National Health

Expenditure

Increase 5.49% 6.03% 6.58% 7.82% 8.70% 7.77% 10.84% 1.93% 6.16% 5.86% 4.44% 3.68% 3.77

NHE (X) Times

higher than PopGrowth 5.08 5.63 9.28 7.43 8.35 11.27 10.59 2.84 6.12 5.88 4.50 5.63 3

NHE (X) Times

higher thanInflation 3.43 2.74 1.93 2.79 5.43 3.38 4.01 0.57 1.93 2.09 1.17 ~4.08 2

Health CareExpenditures as a

Percent of GDP 5.21% 7.22% 9.18% 12.49% 13.82% 13.71% 13.75% 13.75% 13.84% 14.53% 15.38% 15.92% 16.79


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ii. Chart 1Footnote 27

Footnote28

, Footnote29

.

Note to Chart 1: Pictorial depiction of Table 1.

The Big Data Set can be used to help the health care industry take advantage of

economies of scale, thereby allowing it to be more cost effective while being able to most benefit

the United States population because The Big Data Set utilization would help the industry

provide the highest quality of care. The Big Data Set can provide on demand access to the health

27Combination of Footnote 4 and Footnote 6. Chart Created by Douglas J. Henderson. 3/12/2012.28 Historical Inflation Rates, calculated using Bureau of Labor Statistics Consumer Price Index. Retrieved on

3/12/2012 from: http://www.usinflationcalculator.com/inflation/historical-inflation-rates/.29Combination of Footnote 4 and Footnote 6. Chart Created by Douglas J. Henderson. 3/12/2012.
http://www.usinflationcalculator.com/inflation/historical-inflation-rates/http://www.usinflationcalculator.com/inflation/historical-inflation-rates/


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care industry on a least costly basis, allow for dynamic updating and systemic trend monitoring,

and use big data analytics to reveal previously unknown or uncorrelated relationships.30

The

Big Data Set would allow Doctors to computerized order entries that could not only prevent

dangerous drug co-reactivity, but also assess patient insurance for coverage, exclude drugs

because of allergies, and be delivered to pharmacists on demand.31 The Big Data Set would

allow the health care industry to be most beneficial to the United States populace, then, because

this type of use of technology would allow for the best quality of care, to the greatest number of

individuals, at the least costly price point possible.

The Potential for Cost and Life Savings

Gilman & Cooper cite a report that describes substantial efficiency gains in both

administrative function and delivery of care across settings32 from implementing electronic

health records (EHR) alone. Horvitz states, [c]ollecting and analyzing data collected on health

and illness promises to enhance the quality and efficacy of health care, and to enhance the

quality and longevity of life. One of the ways to exponentially grow those benefits is with the

use of something known as Big Data Information Accumulation Data Mining. Big Data

Information and Accumulation Data Mining is a component of what is broadly known as Health

Information Technology (HIT)33

in the health care industry. With the analytics that exist in

30United States Government Accountability Office, GAO COST ESTIMATING AND ASSESSMENTGUIDE.(2009). GAO-09-3SP.

31Richard Winter, HEALTH CARE DATA WAREHOUSING IN THE GOVERNMENT(2007).32 Daniel J. Gilman & James C. Cooper,THERE IS A TIME TO KEEP SILENT AND A TIME TO SPEAK, THE

HARD PART IS KNOWING WHICH IS WHICH: STRIKING THE BALANCE BETWEEN PRIVACYPROTECTION AND THE FLOW OF HEALTH CARE INFORMATION,Michigan Telecomm and

Technology Law Review, Vol. 16, p. 279, (2010), Available at SSRN: http://ssrn.com/abstract=1470772.

At 292 citing: Govt Accountability Office. GAO-04-0224. INFORMATION TECHNOLOGY BENEFITS

FOR SELECTED HEALTH CARE FUNCTIONS. At 36.33 Id, at 286-287 stating: wherein HIT also comprises myriad products and services, such as (a) electronic medical

recordsincluding patient records, clinical decision support, laboratory records, health plan records,records exchange systems, and personal health records (b) clinical ancillaries d other kinds of clinicalinformation systems, such as labs, radiology, and image management systems, (c) biomedical devices,
http://ssrn.com/abstract=1470772http://ssrn.com/abstract=1470772


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todays big data technology, data can be transformed into predictive models, and [p]redictive

models can be used to generate forecasts with well-characterized accuracies about the futureor

diagnoses about states of a patient that we cannot inspect directly.34 This is The Big Data Set.

As the Federal EMR Electronic Medical Records of American Recovery and

Reinvestment Act (ARRA) of 2009 mandate that all medical records be digitized (by 2014)35

starts to be fully implemented, the United States health care industry will be immediately awash

in vast amounts of electronic health care related data. Once a persons EHR is digitized, the data

can be properly formatted and compiled with other available sources and it can be worked to

help form better outcomes and increase patient quality of care; such a usable format and

compilation is encapsulated in The Big Data Set.

The theory with big data and big data analytics is that health care information can be

amassed to such a point and with so many variables that more correct answers can be gleaned

quickly and efficiently, while removing some human error from the system. Relationships

among health care indicators and testing results that indicate particular diagnoses that were

previously unknown will start to be unmasked because big data analytics can do an infinitesimal

variable correlation and standard deviation analysis. With the proper big data analytics,

information can be gathered (queried) from the data and utilized to most expeditiously provide

high quality care and treatment to those in need. When discussing big data analytics, what

including medical device data systems, (d) population HIT, including not just public health reporting,

which is moving to an electronic basis, but also registries such as disease registries, immunizationregistries, and statistical analysis and reporting such as quality of process, quality of outcomes andhealth disparities analysis that would count in the population health area of health IT, and (e) applicationsserving the administration and financial sectors of medicine citing the FTC Workshop, Mr. Fergusonprovided roughly this overview of HIT applications, devices, and services. James Ferguson, Exec. Dir.,Health I.T. Strategy & Policy. Kaiser Permanente, Address at Federal Trade Commission Workshiop onInnovations in Health Care Delivery. 135-36. Apr. 24, 2008. Transcript athttp://www.ftc.gov/bc/healthcare/hcd/docs/hcdwksptranscript.pdf.

34HORVITZ, supra note 6.

35American Recovery and Reinvestment Act of 2009 (ARRA), supra note 20.


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makes this a genuinely revolutionary moment is that thanks to Moores Law (exponential

increase in computing transistor technology capability36

) we also have the computing power and

the ability to store, retrieve, and analyze such data, all at an affordable price.37

Hillestad, et al., cite RANDs study estimates that effective EHR implementation [alone]

could eventually save more than $81 billion annually.38 Frost & Sullivan note that [a]s more

and more data is being stored by health care organizations, more is being ignored as well.

[d]ata must be integrated into processes and drive actions.39

Non-public PHI only adds to these

complexities by creating additional data use restrictions and sharing. In fact, one of the most

important characteristics of effective Big Data usage is IT partnering and outsourcing to IT

specialists and independent contractors.

The great costs of health care expenditures necessitate the promotion of free use, sharing,

and maximization of the information that can be gleaned from a Big Data set. While public PHI

will create [e]xplosive data growth thanks to the proliferation of new computing and

communication devices such as smartphones, sensors, and RFIDs, there will be a simultaneous

need for continuously expanding business efficiency, innovation, and competitive advantage

through better information management and advanced analytics.40

This cost may cause some to

say that Big Data is prohibitive and this lends more credence to making the Big Data Set

public. Publicly available PHI can eliminate the great costs of data securitywhilst maintaining

36Atkinson & McKay, supra note 14 at 7.

37American Recovery and Reinvestment Act of 2009 (ARRA), supra note 20.38 Richard Hillestad; James Bigelow; Anthony Bower; Federico Girosi; Robin Meili; Richard Scoville; Roger

Taylor, CAN ELECTRONIC MEDICAL RECORD SYSTEMS TRANSFORM HEALTH CARE?POTENTIAL HEALTH BENEFITS, SAVINGS, AND COSTS. 24 Health AFF 5.

39Frost & Sullivan.DROWNING IN BIG DATA? REDUCING INFORMATION TECHNOLOGYCOMPLEXITIES AND COSTS FOR HEALTHCARE ORGANIZATIONS (2012), At 8.

40Richard L. Villars& Lucinda Borovick,BIG DATA AND THE NETWORK. IDCANALYZE THE FUTURE.(2011), At2.


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data integrityand more quickly return non-security overhead data to medical professionals

most instantaneously.

The Benefits of Big Data in the Health Care Industry

Early disease detection, predicted outbreaks of disease, and problems such as ineffective

pharmacological applications and pharmacological application overlap can be identified within

The Big Data Set, and eliminated. In addition, a publicly held big data set of EHRs can make

PHI available not only within the diagnosing and prescribing stage, but also available across

industry and double checked at the prescription filling stage with greater accuracy and with more

information as to why certain drugs are being prescribed whilst eliminating some of the

overdosing and needless outlay of expensive pharmacological applications.41

Big data and big data analytics not only reduce health care costs by reducing error,

negligence, misdiagnosis, and application of inapplicable pharmacological treatments, but they

can also cause a reallocation of health care and medical resources to appropriate geographic

locales. With the proper health care industry professionals in the necessary geographic locales

armed with the predicted preventative health medicines, treatment, and therapies - the populace

can be provided the additional benefit of eliminating lost dollars for needless health care

expenditures in unnecessary geographic locals, and also minimize lost productivity and

efficiency. In order to do this, though, the United States government must start to maintain

public PHI and The Big Data Set while also convincing the populace to perceive their PHI in an

altruistic sense. One barrier to achieving a publicly held big data set is what one might initially

perceive as lost privacy because health care consumers would worry that public PHI would

leave them vulnerable to unwanted exposure, stigma, discrimination and serious economic

41 National Association of Chain Drug Stores (NACDS),PHARMACIES: IMPROVING HEALTH, REDUCINGCOSTS (2011), At 9 & 13.


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losses.42 However, by regulating the users of public PHI, and how they can use it, rather than

by regulating those that merely obtain PHI data, these worries can subside. The fact of the

matter is the tradeoff between private PHI regulation and a public PHI system would be better

health care, reduced costs, and better treatment outcomes.

Norman Nie cites McKinsey as [estimating] [if] the U.S. could use big data creatively

and effectively to drive efficiency and quality, it could help the U.S. health care industry

generate $300 billion in value every year, resulting in an 8-percent reduction in national

spending on health care (~.7 percent annual productivity growth).43 Horvitz believes that a

roadblock to being able to realize the savings from a big data set and system is a critical

standing bottleneck [as] the lack of data [being abundantly available in the health care industry]

based both in inadequate capture and in difficult challenges with sharing clinical data for

research and development.44 The revolutionary idea of holding PHI in the public domain as a

publicly administered big data set would eliminate the bottlenecks in the health care industry and

allow big data analytics to realize and generate the projected savings. Using Keynesian

economics rationale, The Big Data Set can be maintained centrally and publicly administered

and therefore be more accurate and allow the health care industry to realize greater savings and

extrapolate usable information that will allow better quality of care.

The Institute of Medicine (IOM) reported in 2006 that at least 1.5 million preventable

adverse drug events occur each year in the United States,45

and The Big Data Set, publicly

42 Pew Internet & American Life Project, Institute for Healthcare Research and Policy, Georgetown University,Exposed Online: WHY THE NEW FEDERAL HEALTH PRIVACY REGULATION DOESNT OFFERMUCH PROTECTION TO INTERNET USERS (11/2001), At 6-8.http://www.pewinternet.org/Reports/2001/Exposed-Online-The-federal-health-privacy-regulation-and-Internet-user-impacts/Part-1/Public-Opinion.aspx.

43Norman H. Nie,THE RISE OF BIG DATA SPURS A REVOLUTION IN BIG ANALYTICS. RevolutionAnalytics Executive Briefing(2011),At 2; At 8.

44 HORVITZ, supra note 6 at 2-3.45Inst. Of Med. PREVENTING MEDICATION ERRORS (Philip Aspden et al. eds.) (2006), At 5.


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administered in a virtual cloud environment could reduce and eliminate this. Lisa Suennen, a

venture capitalist, managing member with Corte Madera, and big believer in big data, stated [i]f

the health care system is going to overcome the financial crisis it currently faces, it must adopt

methods to customize and personalize care, improve quality of care and significantly reduce

inflationary trends by making it possible to measure and deliver true value,46 which is what big

data and big data analytics can deliver. Better outcomes using the altruistic PHI model have

already been proven and realized in the diabetic community,47

and in many other areas of the

health care industry. As these benefits are recognized and realized, more information comes

together to make treatments more directed and more effective with more data (such as the

utilization of social media platforms).48

What is an Altruistic Personal Health Information (PHI) Model?

To be altruistic is to have a genuine concern for the welfare of others. Gintis, et al, have

cited long-standing research theories that altruism is ultimately self-interest.49 When altruism

intersects PHI, a model emerges that says individuals, be it self-interested individuals or those

that are genuinely concerned for the welfare of others, should give up their privacy rights to PHI

in order for health care to be cost effective and simultaneously provide the greatest quality of

care (long-run self-interest to get health care at the lowest cost and with the best quality of care).

46MedCity News,http://www.medcitynews.com/2011/11/5-companies-using-big-data-to-solve-healthcare-

problems.com/(3/6/2012).47Elissa R. Weitzman; Ben Adida; SkylerKelemen; Kenneth D. Mandl,SHARING DATA FOR PUBLIC HEALTHRESEARCH BY MEMBERS OF INTERNATIONAL ONLINE DIABETES SOCIAL NETWORK. PLoSONE 6(4): e19256. Doi: 10.1371/journal.pone.0019256. Vol. 6, Issue 4. April 2011.

48Paul Wicks; Timothy E. Vaughan; Michael P. Massagli; James Heywood,Accelerated Clinical Discovery UsingSelf-Reported Patient Data Collected Online and a Patient-Matching Algorithm,NATUREBIOTECHNOLOGY, Vol. 29, No. 5. May 2011.

49Herbert Gintis; Samuel Bowles;Robert Boyd; Ernst Fehr,Explaining Altruistic Behavior In Humans,EVOLUTION

AND HUMAN BEHAVIOR 24 (2003) 153-172, At 154.
http://www.medcitynews.com/2011/11/5-companies-using-big-data-to-solve-healthcare-problems.com/http://www.medcitynews.com/2011/11/5-companies-using-big-data-to-solve-healthcare-problems.com/http://www.medcitynews.com/2011/11/5-companies-using-big-data-to-solve-healthcare-problems.com/http://www.medcitynews.com/2011/11/5-companies-using-big-data-to-solve-healthcare-problems.com/


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An altruistic PHI model holds PHI in the public domain, and PHI in the public domain would

allow for a cloud networked national, publicly administered, big data set.

The Big Data Set as administered herein, no matter how beneficial it would be, would

undoubtedly be perceived by the health care industry as an attack on their profitability and

profitability potential. But, the health care cost expenditures cannot be maintained. For the

health care industry, one way to maintain profitability is through exclusion and exclusionary

measures, such as regulatory schemes (HIPAA, and others), which create cost and help create

governmental barriers to entry (through lobbyists) and decrease dynamism, development, and

invention in the name of superficial labels called privacy and the publics well-being. In fact

the publics wellbeing is in polar opposition to todays privacy laws, and todays technology has

given rise to optimization of care and cost reduction if the inputs exist for such (public PHI).

The inputs can exist, and Gintis, et al., have cited studies showing that it is in fact industry that is

the only truly self-interested entity; people are genuinely concerned about each other and willing

to contribute to anothers well-being (lest under the guise of industry)50 and probably willing to

give up PHI.

Using a public PHI altruistic model would still allow for cost differentiation and price tier

systems based on actuary table data predictions and cost allocationwhere pricing differences

can still exist as a predefined structured systembut the now public PHI data could not be used

to price tier someone in any way than is not presently the case in todays health care industry.

An altruistic big data analytic PHI model would take what today seems private as it relates to a

persons health, and therefore more valuable to profitable companies, and remove such inherent

value because that information is necessarily only public domain.

50Id. At 155-160


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An altruistic publicly held PHI system would make profitability give way to cost

reductions while simultaneously improving quality of care through Big Data Analytics

predictions and diagnoses assistance. Technology and drug development would be more cost

effective and quicker to market with greater information availability (which further reduces

health care expenditure research and overall costs). Capitalism can still exist, available for any

and all to reap and sow, but without PHI access differentiation. Economically speaking, the

entire health care industry market would have ready access to all information, which would

promote greater competition and market domination through cost efficiency rather than

expenditure-ability (having the money to fund research studies, etc., would no longer be

important because any qualified health care company would have access to the public Big Data

set).

Privacy Considerations and the Health Insurance Portability and Accountability Act

(HIPAA)

The Health Insurance Portability and Accountability Act (HIPAA) of 1996 sets forth as

its purpose to improve the Medicare program of the Social Security Act and to encourage

the development of a health information system through the establishment ofstandards and

requirements for the electronic transmission of certain health information.51 The HIPAA

Privacy Standard (Department of Health and Human Services, 2002) requires health care

providers, health plans and health plan clearinghouses to establish appropriate administrative,

technical, and physical safeguards to protect the use and disclosure of individually identifiable

health information.52 Basically, HIPAA attempts to directly govern the use of what is known in

51 United States of America, 104th Congress. Pub. L. 104-191. 1996.52 Supra note 1 at 99.


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todays world as Private Health Information (PHI) as it is exchanged among Health Information

Organizations (HIOs).

In its attempt to set forth a regulatory scheme as it relates to electronic PHI, HIPAAs

complicated privacy rules have turned out to actually have exactly the opposite effect53

of its

set forth goal of efficiency and effectiveness, which HIPAA characterizes as cost minimization

and increased quality of care [HIPAA. Sec. 1172(b)])54, because it requires companies to hold

PHI private, internal, and compliant with HIPAA and its consent requirements and sharing

possibilities. HIPAA, except as enumerated in HIPAA Sec. 1173(2)Standards to Enable

Electronic Exchange

55

, eliminates free data sharing and it increases costs to obtain and hold PHI,

and as such inherently requires a proprietary-like nature. HIPAA forecloses access to the

meaningful information that can be extrapolated using current technologies because it creates

decreased sharing effects, potential, and possibilities.

HIPAAand other laws - creates an increased cost to holding PHI in compliance with it

(in addition to adding penalization costs for non-compliance with HIPAA guidelines and

standards, which further increases the costs of PHI utilization). But, in order for the United

States health care industry to be cost effective, as well as in order to provide the best quality of

care, PHI must become publicly available and fully disclosed to the general public. In a publicly

administered big data set, regulation and penalty could be set to only apply where a company or

entity is attempting to use public PHI in an only proprietary sense (or withholds PHI from the

public domain). In a similar type of regulation, President Bush signed the Genetic Information

Nondiscrimination Act (GINA), which prohibits U.S. insurance companies and employers from

53Gonzalo VecinaNeto, ELECTRONIC HEALTH RECORDS: DELIVERING THE RIGHT INFORMATION TOTHE RIGHT HEALTH CARE PROVIDERS AT THE RIGHT TIME, Brazilian National HealthRegulatory Agency. At 10.

54COOPER & COLLMAN, supra note 1 at101.55 Id.


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discriminating on the basis of information derive from genetic tests,56 and this could be carried

over to an anti-discrimination type of legislation for information derived from The Big Data Set.

Gilman, et al., cite excessive regulation, or a poorly integrated patchwork of federal and state

regulations as [impeding] innovation[s] that would be beneficial to health care consumers,

public health, and the national treasury57 If regulation only impacted those companies that

misused PHIdefined as use of PHI for profitability and gain rather than to improve health care

quality and reduce health care costs - then such regulatory endeavor would be much more

meaningful and beneficial than the current HIPAA regulatory scheme because it would

inherently cost the health care industry less.

Within this system of publicly disclosed PHI, the Bill of Rights would still be generally

applicable for any misapplication or misuse of PHI by any entity; such misuse could be

monetarily compensable (that is PHI should not be taken from the public domain, lest financial

repercussions would ensue). As HIPAA currently stands, holding PHI requires covered entities

to reasonably safeguard PHI from any intentional or unintentional use or disclosure in violation

of the privacy rule [of HIPAA],58 and the costs associated with this omnipresent HIPAA

requirement across all covered entities (as defined by 45 C.F.R. 164.502(e), 164.504(e), and

160.103) only works to preclude the efficiencies and benefits that a public Big Data PHI system

could have. If the health care industry is allowed to freely contribute PHI to The Big Data Set

without regard to complex definitions of who or what a business associate or covered entity

56Human Genome Project Information,BREAKING NEWS: GINA BECOMES LAW MAY 2008.

Genomics.energy.gov(4/12/2012).57Amlia Miller,Address at Federal Trade Commission Workshop on Innovations in Health Care Delivery, At 225-

32, 251-52, Apr. 24, 2008. (transcript available athttp://www.ftc.gov/bc/healthcare/hcd/docs/hcdwksptranscript.pdf).

58 Office for Civil Rights (OCR),THE HIPPA PRIVACY RULE AND ELECTRONIC HEALTH INFORMATION

EXCHANGE IN A NETWORKED ENVIRONMENT(3/6/2012). At 1.
http://www.ftc.gov/bc/healthcare/hcd/docs/hcdwksptranscript.pdfhttp://www.ftc.gov/bc/healthcare/hcd/docs/hcdwksptranscript.pdf


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is then compliance with these restrictive, superfluous, clouded, complex definitions will

immediately lessen these gaps between the aforementioned costs and measures.59

Health Information Technology and Big Data

A national system of public PHI can create a sort of a social study of wellnessinclusive

of pinpoint exactness of treatment methodologiesand such could exist on a national level and

benefit the entire populace at all levels. The first step in the health care industry is to ensure that

Health Information Technology (HIT) is fully implemented at all levels and fully interoperable

and contributing to what is known as The Big Data Set. In fact, the government has already

realized the costs savings in HIT alone, and the American Recovery and Reinvestment Act of

2009 (Recovery Act or ARA) comprises numerous provisions related to HIT and commits tens

of billions of dollars to its development and adoption.60 Richard Hillestad, et al, has noted that

the growth of HIT is critical to improving quality and efficiency in health care delivery.61 It

appears that HIT has the potential to reduce medical errors,62 duplicative testing and

procedures,63 and substantial administrative costs now attributed to incomplete, hard-to-find, or

otherwise faulty paper records.64

Public PHI will allow a holistic approach to treating individuals, and the data relating to

each individual patient as a person - rather than treating a disease in a personwill lead to

intelligent case management, which today includes targeting, recruiting, retention and

5945 C.F.R. 164.502(e), 164.504(e), and 160.103.60GILMAN & COOPER, supra note 27.61Richard Hillestad,Et. al. supra note 33 at 1103.62BD. On Health Care Servs., Inst. Of Med. Preventing Medication Errors.5 (Philip Aspden et al. eds. 2006.

(estimating a minimum of 1.5 million preventable mediation errors per year in hospitals, nursing homes,and ambultry care settings in the U.S.) The Institute of Medicine has also identified HIT as a promisingmeans of reducing the frequency of such errors.At 223-36.Also, see Id At 6.

63 Id. At 13-14.64 Id. At 6, 13-14, 223-36.


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compliance and [driving] smarter predictive models65). As The Big Data Set is defined and

implemented, over time the data set could be designed so that organizations across many

different industries and sectors can economically extract value from very large volumes of a

wide variety of data by enabling high-velocity capture, discovery, and analysis (aka be publicly

available in a networked cloud environment).66 Universal capture of data would make The Big

Data Set grow exponentially, thereby allowing individual situations and scenarios to have

instantaneous and up-to-date information about possible health resolutions. Information and

diagnoses on-demand will improve well-being and provide economic and personal benefits to

all. On-demand information and diagnoses will make individual treatment and therapy most

acute and responsive to ailments as predicted by a national populations inferences and

predictive input as would be available in an on-demand publicly held big data predictive

database. Richard Villars asserts that IDC believes the organizations that are best able to make

real-time business decisions using big data streams will thrive, while those that are unable to

embrace and make use of this shift will increasingly find themselves at a competitive

disadvantage in the market and face potential failure,67 and this can be extended to the industry

level; the United States cannot afford for the health care industry to fail to take advantage of and

embrace big data analytics.

Frost & Sullivan state, [a]nalytics today are retrospective, but in the not-too-distant

future, will drive care decisions more dynamically, requiring analysis of larger data sets and

requiring analysis of structured and unstructured data. Diverse data sources will be pulled

together to create a cohort large enough to find patient situations, which mirror the patient in

65Bill Fox,Leveraging data and analytics,http://www.healthmgttech.com/index.php/online-only-features/online-only-features/predictive-modeling-using-big-data-for-big-impact.html (3/2/2012).

66Supra note 35.67Id.
http://www.healthmgttech.com/index.php/online-only-features/online-only-features/predictive-modeling-using-big-data-for-big-impact.htmlhttp://www.healthmgttech.com/index.php/online-only-features/online-only-features/predictive-modeling-using-big-data-for-big-impact.htmlhttp://www.healthmgttech.com/index.php/online-only-features/online-only-features/predictive-modeling-using-big-data-for-big-impact.htmlhttp://www.healthmgttech.com/index.php/online-only-features/online-only-features/predictive-modeling-using-big-data-for-big-impact.htmlhttp://www.healthmgttech.com/index.php/online-only-features/online-only-features/predictive-modeling-using-big-data-for-big-impact.html


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front of a provider in an emergency department waiting for diagnosis and treatment.68 With

The Big Data Set, larger sample sizes equate to greater accuracy with greater frequency. As the

health care I\industry is regulated today, HIPAA requires covered entities to control the flow of

PHI, either directly or through agreementsand eliminating this regulation and making PHI

public domain would not only eliminate HIPAAs waste, but also allow The Big Data Set to

achieve the goal of true cost reduction and actual well-being advantages the United States and

the health care industry. In fact,

2012 is the defining moment for new standards that will enable big data analyticsin a distributed environment. An ONC sponsored open government initiative,

Query Health, is defining the standards and specifications for distributedpopulation queries. Researchers will be able to leverage these standards to besend questions to the data. Questions can be sent to data sources includingEHRs, HIEs, PHRs, payers clinical record or any other clinical record. Aggregateresponses leave patient level information secure behind the data sources firewall.Aggregate responses support questions related to disease outbreak, quality, CER,post-market surveillance, performance, utilization, public health, prevention,resource optimization and many others.

The path for these new standards will dramatically cut cycle time for deploymentof new questions from years to daysmaking possible support for a learninghealth system.

The focus of 2012 should be laying the foundation for success: defining thestandards and services for distributed population health queries. This is oneextremely impactful way to leverage the potential of big data for research.69

The aforementioned will further lend credence to the fact that 2012 is most ripe to eliminate

HIPAA waste.

Conclusion

Going back at least twenty years, year to year health care industry expenditures

have consistently been almost five times the year to year growth rates of the population.

68 Frost & Sullivan, supra note 34 at 7.69Rich Elmore,Standards for Distributed Population Health Queries. Harnessing Big Data for Drug Development

A FasterCuresBloggersation, http://fastercures.blogspot.com/2012/02/harnessing-big-data-for-drug.html(2/23/2012).
http://fastercures.blogspot.com/2012/02/harnessing-big-data-for-drug.htmlhttp://fastercures.blogspot.com/2012/02/harnessing-big-data-for-drug.html


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Within the 20 year look-back period, total yearly health care expenditures have never

decreased. Study after study has consistently concluded that this trend is alarming.

Researcher after researcher has consistently concluded the health care industry must

change in this way or another. The government continually implements changes in an

attempt to control burgeoning health care cost expenditures. Thus far, nothing has been

able to reign in health care cost expenditures, nor has the multiplicative growth rate been

decreased or reversed. A time for action has comeand the action being called for is a

change in thinking and a utilization of the cutting edge techniques available in technology

so that a change can be effectuated.

Todays technological innovations are complex and a global perspective must be

taken in order to see what the future can hold. It is true that Big Data, in its volume,

velocity, and variety, creates two major problems for healthcare organizations: potentially

overwhelming complexity and increased IT expenditures,70 but these technologies can

easily be utilized and administered by the federal government. With a centrally

administered cloud networked big data set, the government can leverage efficiency and

clarity with precision previously thought inconceivable.71

The clarity and insight about

correlations, diseases, trends that the health care industry can achieve will not only

reduce health care expenditure costs (inherently in becoming publicly held PHI), it can

also reduce error, eliminate redundancies (ironically enough by capturing and recording

redundancy), and provide better quality of care.72

Horvitz believes, [t]he data to

prediction to action pipeline promises to catalyze transformation changes in the cost-

effective delivery of quality and personalized healthcarespanning applications with the

70 Frost & Sullivan, supra note 34 at 5.71Supra note 38 at 3.72HORVITZ, supra note 6 at2-3.


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handling of acute illnesses, longer-term disease management, and the promotion of health

and preventative care.

What must happen in order for these technological capabilities to be fully utilized,

though, is that the data must exist to provide inputs to the system. Private Health

Information (PHI) must become public domain and HIPAA-like governance and cost

additions must give way to altruistic interests and how to most cost-effectively implement

the United States health care policies especially in times of infinite debt accumulation

(because one day, no one will even want to buy United States debt instruments). Privacy

standards and consent requirements must work to make technology more rather than less

likely to be adopted, because [i]f consent requirements reduce HIT benefits, providers

also will be less likely to adopt HIT in the first place73 and this greatly reduces the

potential of big data technologies and continues the cycle of cost exorbitance. Because

the health care system depends on information, and big data sets and analytics provide

information in a way that that information creates quality, efficiency, and effectiveness, a

centrally administered cloud networked and distributed big data set can reverse the trends

of increasing heath care expenditure costs.

73Supra note 27.


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Altruism Trumping Privacy

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