Industry AgendaUnlocking the Valueof Personal Data:From Collection to UsagePrepared in collaboration with The Boston Consu...
Section Title                                                             ‘‘                                              ...
Contents3	    Executive Summary7	    Chapter 1: The World Is Changing11	   Chapter 2: The Need for a		    New Approach15	 ...
Section Title2	     Unlocking the Value of Personal Data: From Collection to Usage
ExecutiveSummaryOur world is changing. It is complex, hyperconnected, and                                   The dialogue w...
Executive SummaryPrinciples can serve as a global foundation for creating aninteroperable, flexible and accountable framew...
Executive SummaryFigure 1: World Economic Forum dialogue on principles fortrusted flow of personal data San Jose          ...
Section Title6	     Unlocking the Value of Personal Data: From Collection to Usage
Chapter 1:The World IsChangingThe world is changing fast. A new computing and information-          More data is being col...
Chapter 1: The World Is Changinglocation information from phones and credit card purchases).            For example, using...
Chapter 1: The World Is ChangingFigure 3: Use of personal data in innovative ways in the health sector can yieldsignifican...
Section Title10	    Unlocking the Value of Personal Data: From Collection to Usage
Chapter 2:The Need fora New ApproachGiven the complexity of the personal data ecosystem, the rateof change, the potential ...
Chapter 2: The Need for a New ApproachBut a new approach cannot be one of “anything goes”. Thepotential for new value crea...
Chapter 2: The Need for a New ApproachFigure 4: Mechanisms to engage individuals and empower them arebeginning to emergeOn...
Section Title14	    Unlocking the Value of Personal Data: From Collection to Usage
Chapter 3:Principles for theTrusted Flowof Personal DataPrinciples have been and need to be a core part of the future     ...
Chapter 3: Principles for the Trusted Flow of Personal DataExisting principles associated with the collection, handling an...
Chapter 3: Principles for the Trusted Flow of Personal DataAccountability                                                 ...
Chapter 3: Principles for the Trusted Flow of Personal DataAlthough transparency is not a new principle, it warrants revis...
Chapter 3: Principles for the Trusted Flow of Personal DataFigure 7: Emergence of different tools that help individuals un...
Chapter 3: Principles for the Trusted Flow of Personal Datasingle-use collections reflect a decreasing percentage of overa...
Panel of executives addresses participants in Davos workshopGraphic summary of Davos workshop on personal dataRay Baxter, ...
Section Title22	    Unlocking the Value of Personal Data: From Collection to Usage
Chapter 4:Principles intoPracticePrinciples by themselves are not enough. To translate principlesinto practice, a number o...
Chapter 4: Principles into PracticeOrganizations of all types will be well served if they do notcontinue to try to “go it ...
AppendixRelevant UseCasesAs discussed in the report, personal data can create significanteconomic and social value for ind...
Appendix: Relevant Use CasesManaging chronic conditions through                                     Leveraging data to sol...
World economic forum unlocking value personal data From collection to usage report 2013
World economic forum unlocking value personal data From collection to usage report 2013
World economic forum unlocking value personal data From collection to usage report 2013
World economic forum unlocking value personal data From collection to usage report 2013
World economic forum unlocking value personal data From collection to usage report 2013
World economic forum unlocking value personal data From collection to usage report 2013
World economic forum unlocking value personal data From collection to usage report 2013
World economic forum unlocking value personal data From collection to usage report 2013
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World economic forum unlocking value personal data From collection to usage report 2013

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Unlocking the Value of Personal Data: From Collection to Usage, prepared in collaboration with the Boston Consulting Group, examines the need for new approaches in the policies which enable the managing of personal data in ways that are flexible, adaptive and contextually driven. The report highlights the need to shift to policy frameworks focused on the usage of data (rather than pre-emptively governing the data itself), the importance of context, and the need to find new ways to engage the individual. The report calls for the importance of establishing an updated set of principles and the means to uphold them in a hyperconnected world.

In creating this report, the World Economic Forum convened a global dialogue through a series of workshops across Asia, Europe and the US on the principles to unlock the value of personal data.

A general consensus emerged from this dialogue that the rules governing personal data need to be flexible enough to enable new business models, accommodate technology evolution, enable user trust and meet the requirements for user transparency.

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World economic forum unlocking value personal data From collection to usage report 2013

  1. 1. Industry AgendaUnlocking the Valueof Personal Data:From Collection to UsagePrepared in collaboration with The Boston Consulting GroupFebruary 2013
  2. 2. Section Title ‘‘ I’m convinced this longing to balance, this urge ‘‘to climb is ingrained in all of us. —Philippe Petit, High Wire Aerialist © World Economic Forum 2013 - All rights reserved. No part of this publication may be reproduced or transmitted in any form or by any means, including photocopying and recording, or by any information storage and retrieval system. The views expressed are those of certain participants in the discussion and do not necessarily reflect the views of all participants or of the World Economic Forum.ii Unlocking the Value of Personal Data: From Collection to Usage
  3. 3. Contents3 Executive Summary7 Chapter 1: The World Is Changing11 Chapter 2: The Need for a New Approach15 Chapter 3: Principles for the Trusted Flow of Personal Data23 Chapter 4: Principles into Practice25 Appendix - Relevant Use Cases33 Acknowledgments Unlocking the Value of Personal Data: From Collection to Usage 1
  4. 4. Section Title2 Unlocking the Value of Personal Data: From Collection to Usage
  5. 5. ExecutiveSummaryOur world is changing. It is complex, hyperconnected, and The dialogue was based primarily on three clusters buildingincreasingly driven by insights derived from big data.1 And the on the 1980 Organisation for Economic Co-operation andrate of change shows no sign of slowing. Nor does the volume Development (OECD) Privacy Principles:4of data show any sign of shrinking. But, the economic and social • Protection and securityvalue of big data does not come just from its quantity. It also • Accountabilitycomes from its quality – the ways in which individual bits of data • Rights and responsibilities for using personal datacan be interconnected to reveal new insights with the potentialto transform business and society. Fully tapping that potential This document captures some of the key outcomes of theholds much promise, and much risk. By themselves, technology dialogue. It highlights areas that need to be resolved in orderand data are neutral. It is their use that can both generate great to achieve a sustainable balance of growth and protection invalue and create significant harm, sometimes simultaneously. the use of personal data.This requires a rethink of traditional approaches to datagovernance, particularly a shift from focusing away from tryingto control the data itself to focusing on the uses of data. It is Protection and Securityup to the individuals and institutions of various societies to governand decide how to unlock the value – both economic and Issues of protection, security and the overall stewardship ofsocial – and ensure suitable protections. personal data remain central to the ecosystem. While the complexity of operating in a decentralized and distributedAs part of the multiyear initiative Rethinking Personal Data, the networked environment poses new challenges, ensuring dataWorld Economic Forum hosted an ongoing multistakeholder security remains crucial.dialogue on personal data throughout 2012 (See Figure 1 formore details). This dialogue invited perspectives from the US,Europe, Asia, and the Middle East and involved representatives Accountabilityof various social, commercial, governmental and technicalsectors, who shared their views on the changes occurring within Ensuring stakeholder accountability is a task that is increasinglythe personal data ecosystem and how these changes affect the challenging. Unlike the case 30 years ago, when the OECDcollective ability to uphold core principles. The dialogue also principles were established, the questions of “Who has dataaddressed key regional legislative and policy approaches, about you?” and “Where is the data about you located?”particularly the proposed European Commission Data Protection are impossible to answer today. The challenge surroundingRegulation2 and the US Consumer Privacy Bill of Rights.3 accountability focuses both on which principles to support as well as how to effectively uphold and enforce them, particularlyThe global dialogue centred on a set of foundational principles given the lack of resolution on means of accountability. Thisthat are familiar across a broad range of cultures and jurisdictions. contributes to a lack of trust throughout the ecosystem. However, technology itself has the potential to be part of the solution in ensuring accountability at scale through appropriate controls and auditing functionality. Privacy by Design which has been widely adopted around the world is key to ensuring privacy is proactively embedded into the technology itself.51 Big data is a collection of data sets so large and complex that they become difficult to process using available database management tools or traditional data-processing applications.2 http://ec.europa.eu/justice/data-protection/index_en.htm 4 http://oecdprivacy.org/3 http://www.whitehouse.gov/sites/default/files/privacy-final.pdf 5 http://privacybydesign.ca/ Unlocking the Value of Personal Data: From Collection to Usage 3
  6. 6. Executive SummaryPrinciples can serve as a global foundation for creating aninteroperable, flexible and accountable framework for coordinatedmultistakeholder action. Codes of conduct, technological Key Messages from Global Dialoguesolutions and contract law can all help translate principles intotrustworthy practices that enable sustainable economic growth. • The world has changed, which creates new opportunities but also risksRights and Responsibilities for • A new approach to personal data is needed that is flexible and adaptive to encourage innovation, but also Using Personal Data protects the rights of individuals. Notice and consent need to be reconsidered to be equipped for thisParticipants from the public and private sectors shared a variety changing world.of perspectives on how the rights and responsibilities for usingpersonal data might evolve. One common concern was that • Key aspects of this new approach include:policy frameworks that constrain how data can be linked, shared – Shifting from governing the usage of data ratherand used (such as collection limitations, purpose specifications, than the data itselfand use limitations) are increasingly less effective and anachronistic – Context is key in a world of increasing shades ofin today’s hyperconnected world. grey. Black and white solutions won’t work – New ways to engage the individual, help themIt was also pointed out that as data moves through different understand and provide them the tools to make realphases from collection, to usage and disposal, the weighting of choices based on clear value exchangethe different principles may need to change. This approach issimilar to how incremental advancements in the study of the • A number of potential ways forward emerged fromhuman genome are being accomplished. Scientists explore the dialogue:and discover the human genome under one set of guidelines; – The importance of establishing an updated set ofa different set applies when those insights are put into action. principles and the means to uphold them in a hyperconnected worldThe dialogue also addressed the changing role of the individual. – Technology can be part of the solution – allowingThree subthemes emerged: permissions to flow with the data and ensuring accountability at scaleFrom transparency to understanding: There is a need for new – Need to demonstrate how a usage, contextual approaches that help individuals understand how and when model can work in specific real world applicationdata is being collected, how the data is being used and theimplications of those actions. Simplicity, efficient design andusability must lie at the heart of the relationship between individualsand the data generated by and about them.From passive consent to engaged individuals: Organizations needto engage and empower individuals more effectively and efficiently.Rather than merely providing a binary yes-or-no consent at theinitial point of collection, individuals need new ways to exercisechoice and control, especially where data uses most affect them.They need a better understanding of the overall value exchangeso that they can make truly informed choices.From black and white to shades of gray: Context matters. Giventhe complexity of applications, the idiosyncrasy of individualbehaviours and the speed of change, there is a need for flexibilityto allow different approaches to using data in different situations(See Appendix for a range of case studies of the use of personaldata in different contexts).To keep pace with the velocity of change, stakeholders need tomore effectively understand the dynamics of how the personaldata ecosystem operates. A better coordinated way to sharelearning, shorten feedback loops and improve evidence-basedpolicy-making must be established.4 Unlocking the Value of Personal Data: From Collection to Usage
  7. 7. Executive SummaryFigure 1: World Economic Forum dialogue on principles fortrusted flow of personal data San Jose London Tianjin (March 2012) (June 2012) (September 2012) — Individual rights to data — Duties by others to ensure — Reframing existing principles into — Usability, accountability individual rights new ones user control — Technology enabled policy — Importance of context solutions Brussels Dubai Davos (October 2012) (November 2012) (January 2013) — Revisit openness individual — Transparency — Shift focus from collection to participation — Empowered role for individual use of data — Redefine collection use — Respect for context — Engage individuals through real specification choice not binary consent — Importance of context in which data usedSource: World Economic Forum and The Boston Consulting Group Unlocking the Value of Personal Data: From Collection to Usage 5
  8. 8. Section Title6 Unlocking the Value of Personal Data: From Collection to Usage
  9. 9. Chapter 1:The World IsChangingThe world is changing fast. A new computing and information- More data is being collected, processed and transferred than eversharing architecture has emerged during the past 10 years. before. Data is collected by billions of connected devices, peopleThe policies, business models, social norms and technologies of and sensors that record trillions of transactions and behaviourstoday are simply different from what existed before. Analytics have each day. The unprecedented amount of data being generatedbecome the new engine of economic and social value creation. is created in multiple ways. Data is actively collected fromThe discovery and insights derived from linking previously individuals who provide it in traditional ways (by filling out forms,disparate bits of data have become essential for innovation surveys, registrations and so on). They are also passively collected(See Figure 2 for more details). as a by-product of other activities (for example Web browsing,Figure 2: New perspectives on the use of data TRADITIONAL APPROACH NEW PERSPECTIVE Data actively collected with user awareness Most data from machine to machine transactions and passive collection – difficult to notify individuals Definition of personal data is predetermined Definition of personal data is contextual and dependent and binary on social norms Economic value and innovation come from combining Data collected for specified use data sets and subsequent uses User can be the data subject, the data controller, User is the data subject and/or data processor Individual provides legal consent but is not Individuals engage and understand how data is used truly engaged and how value is created Policy framework focuses on minimizing risks Policy focuses on balancing protection with innovation to the individual and economic growthSource: World Economic Forum and The Boston Consulting Group Unlocking the Value of Personal Data: From Collection to Usage 7
  10. 10. Chapter 1: The World Is Changinglocation information from phones and credit card purchases). For example, using a robust database of 3.2 million individuals,The increasing use of machine-to-machine transactions, which Kaiser Permanente addressed the biologic factors linking parentaldo not involve human interaction, is generating significant antidepressant-drug use to childhood autism spectrum disordersamounts of data about individuals. All of this data is further (ASDs). Analysis of data taken from the personal medicalanalysed and commingled to create inferred data. records of related family members from 1995 through 2002 showed that children exposed prenatally to their mother’s use ofData-driven opportunities are not without risk and uncertainty. antidepressants had more than twice the risk of developing ASDs.The issue is how to gain new insights and make better decisions, The results of the study and this rate of impact may affect theand to do so in a manner that recognizes and protects consumers, care of children and parents drawn from a total of over 4 millionbusinesses and governments against growing concerns of births per year in the US, and over 5 million births per year insecurity, privacy and other harms. EU countries together.The forward transfer of data creates one class of uncertainties. Another example is Visa’s adaptation of its transactional data toThe commercial incentive to share data with secondary and protect consumers and merchants from fraud. The primarytertiary parties is strong and deeply embedded in existing Internet purpose of collecting these data is to ensure convenient, safebusiness models. While the transfer of data creates leverage with and reliable payment processing. Using the data to prevent fraudeach additional use, it also renders the challenges of accounting creates value for all participants in the payments ecosystem.for and monitoring the use of the data more complex. As more Scams and fraud trends are identified as they happen, not hoursand more data is combined and commingled, the insights, or days later. This results in approximately US$ 1.5 billion globaldiscoveries, value and potential risks increase, particularly if this fraud identified annually.activity is performed by parties not directly known or necessaryto the underlying transactors. These examples indicate that even data that is seen as particularly sensitive in some contexts can in other contexts be freed to yieldWith more than 6 billion people connected to mobile devices, important insights and value to all (See Figure 3 and Appendix foran increasing variety of data is also becoming capable of being further case studies).linked to individual identity. Smartphones are now able to captureand track an individual’s location patterns as well as help createnew levels of authentication.In addition, individuals are no longer merely the subjects of data –they are also being recognized as “producers” of data. Forexample, digital personal-health devices such as Fitbit6 and Nike+Fuelband7 measure daily physical activities. They provide a newway of capturing a rich data set about an individual. Thesedevices present an opportunity to combine and commingle intimate,high-resolution, activity-based health data with other data sets toprovide a daily health dashboard for individuals. It helps them setwellness targets, measure progress and more effectively engagein achieving healthier lifestyles.But such personal-health data also gives rise to new questionsand challenges for individuals and institutions. For example,can these data be combined with traditional medical records forresearch and treatment? Is the device reliable and accurate?Can the data be authenticated and linked to only one person?Can insurance companies use the data in their coverage decisions?Such concerns are valid and need to be addressed, butpreemptively fencing off certain data devices and types becauseof these concerns would reduce innovation, discovery, andvalue to individuals and businesses.Using data for purposes in addition to those originally identifiedcan raise privacy concerns if those uses are inconsistent with theinterests of the data subject. However, as always, contextmatters. Restrictions on the use of data may also put the discoveryof transformative innovations at risk. www.fitbit.com6 http://www.nike.com/us/en_us/lp/nikeplus-fuelband78 Unlocking the Value of Personal Data: From Collection to Usage
  11. 11. Chapter 1: The World Is ChangingFigure 3: Use of personal data in innovative ways in the health sector can yieldsignificant economic and social value for all stakeholdersEngaging the individual and leveraging health data to solve global health’s toughestproblem – tackling chronic disease IMPROVEMENTS IN HEALTH OUTCOMES DUE TO LEVERAGING PERSONAL DATA IN TRUSTED WAY 25% Engaging the individual and 20% undertaking personalised individual interventions based 24% 15% on health data has led to 20% significant improvements in 10% 18% health outcomes in Abu Dhabi 5% % increase in population % increase in population % increase in population with control of diabetes1 with control of cholesterol2 engaged with care3 Source: Health Authority – Abu Dhabi (2010 full-year data); See Appendix for more details 1: HbA1c7.5%; 2: LDL:HDL ratio 3.5; 3: At least one diabetes follow-up in the year (HbA1c measurement)Systematically collecting and making publicly available health outcome data drivesclinical improvement and reduces costs TRANSPARENCY OF OUTCOMES DATA IN SWEDEN LED TO IMPROVED QUALITY OF PATIENT CARE ESPECIALLY AT THE LOWEST PERFORMING HOSPITALS Quality Index1 6 Data on hospital performance was Data on individual hospital All hospitals collected but not published performance published Public disclosure of 5 Below-average +22% hospitals aggregated, anonymized patient outcome data 4 +40% x% can drive improved clinical Average +13% annual rate outcomes and address 3 healthcare costs +7% 2 2005 2006 2007 2008 2009 Source: RIK-HIA annual reports 2005-2009; BCG analysis; See Appendix for more details 1: The quality index is based on nine process interrventions recommended by the European Cardiology Society.Source: The Boston Consulting Group, December 2011, “Improving Health Care Value: The Case for Disease Registries”,https://www.bcgperspectives.com/content/articles/health_care_payers_providers_biopharma_improving_health_care_value_disease_registries/ Unlocking the Value of Personal Data: From Collection to Usage 9
  12. 12. Section Title10 Unlocking the Value of Personal Data: From Collection to Usage
  13. 13. Chapter 2:The Need fora New ApproachGiven the complexity of the personal data ecosystem, the rateof change, the potential for significant value from data and thechanging role of the individual, there is a need for a flexible, Putting Context into Contextadaptive and resilient approach that has at its heart the aim ofenabling the global trusted flow of data. One of the key buzzwords in the dialogue around personal data and privacy is context. Some of the phrases whichThe traditional data-protection approach, based on 1970s echoed throughout the global dialogue included:computing architectures in which governments and large • “Context matters”organizations operated in discrete silos, was that the individual • “Companies need to respect the context in which datais involved in consenting to data use at the time of collection. was collected”The organization that collected the data then used it for a specified • “We need different approaches depending on the context”use, based on user consent, and then deleted the data when itwas no longer needed for the specified purpose. That approach But what does context mean? The formal definition is “thewas appropriate when the data collection was often related to circumstances that form the setting for an event, statement,a specific service, a single organization or single use and when or idea, and in terms of which it can be fully understoodthe computer data systems were not highly interconnected. and assessed.” Like money left under a mattress, data is inert until it is used by someone for some purpose – creatingNow, however, the walls of enterprise computing have opened value or potentially harm for the individual, an organizationup along with the data flows across traditional silos. or society. The “context” is the description of the conditions of such use.Traditional approaches are no longer fit for the purposes for whichthey were designed, for several reasons: In terms of personal-data usage, context includes the type• They fail to account for the possibility that new and beneficial uses of data, the type of entity involved, the trust of the service for the data will be discovered, long after the time of collection. provider, the collection method, the device context, the usage• They do not account for networked data architectures that application, and the value exchange between parties.9 lower the cost of data collection, transfer and processing to nearly zero, and enable multiuser access to a single piece During the World Economic Forum dialogue series, this notion of data. came up time and time again. There was widespread• The torrent of data being generated from and about data agreement that a more flexible approach that takes into subjects imposes an undue cognitive burden on individual data account the data context was one of the big shifts required subjects. Overwhelming them with notices is ultimately in adapting existing approaches. disempowering and ineffective in terms of protection – it would take the average person about 250 working hours every year, or about 30 full working days – to actually read the privacy 9 Some research has shown that users take these elements into consideration in assessing what restrictions, consent and notification may or may not be required. policies of the websites they visit in a year.8 See for example International Institute of Communications. “Personal Data• In many instances (for example, while driving a car or when Management: The User’s Perspective”, http://iicom.org/resources/open-access- data is collected using many M2M methods), it is no longer resources/doc_details/264-personal-data-management-the-user-s-perspective- pdf-report practical or effective to gain the consent of individuals using traditional approaches. http://www.techdirt.com/articles/20120420/10560418585/to-read-all-privacy-policies-8 you-encounter-youd-need-to-take-month-off-work-each-year.shtml Unlocking the Value of Personal Data: From Collection to Usage 11
  14. 14. Chapter 2: The Need for a New ApproachBut a new approach cannot be one of “anything goes”. Thepotential for new value creation from allowing data to flow andcombine with other data needs to be balanced against the potential The Evolution of Personal Datarisks and intrusions this could cause. This requires a shift inthinking from focussing on data protection to enabling data The definition of personal data is evolving. Traditionally,empowerment. It will require a shift from controlling data collection that definition was pre-determined and governed throughto focusing on data usage. Lastly permissions, controls and the use of a binary approach: In most jurisdictions, thetrustworthy data practices need to be established that enable the use of personally identifiable information (PII) was subjectvalue-creating applications of data but prevent the intrusive and to strict restrictions whereas the use of non-PII wasdamaging ones. Data itself does not create value or cause often uncontrolled.problems; its use does. However, what is considered personal data is increasinglyThe new approach also requires a shift from focusing on protecting contextual; it changes with personal preferences, newindividuals from all possible risks to identifying risks and facilitating applications, context of uses, and changes in cultural andresponsible uses within those boundaries. In some cases, failure social norms.to use data (for example, to diagnose a medical condition) canlead to bad outcomes – not only at an individual or societal level, Traditionally, organizations have used a variety of techniquesbut also in economic terms, just as its use can create risks. It also to de-identify data and create value for society whilerequires acknowledging that not all data and situations are the protecting an individual’s privacy. Such data was notsame. As we have stated before, context matters, and one-size- subject to the same rules as PII, as an individual could notfits-all approaches will not work. be identified from it. But technological advances and the ability to associate data across multiple sources is shiftingThis new approach also needs to carefully distinguish between boundaries of what is or is not PII, including potentialusing data for discovery to generate insight and the subsequent re-identification of previously anonymized data.application of those insights to impact an individual. Often inthe process of discovery, when combining data and looking for This issue is the subject of significant debate with somepatterns and insights, possible applications are not always clear. arguing that this means that all data is effectively personallyAllowing data to be used for discovery more freely, but ensuring identifiable and should be treated as such. Others urgeappropriate controls over the applications of that discovery to caution, arguing that this would curtail many of the beneficialprotect the individual, is one way of striking the balance between uses of anonymous data with minimal gains in privacy.social and economic value creation and protection. A shift in approach to thinking less about the data andHowever, just as the discovery of new opportunities for growth more about the usage could offer a way forward. If theis unknown, so are the possibilities for unleashing unintended usage impacts an individual directly it would requireconsequences. Principled and flexible governance is required to different levels of governance than data which is used inassess the risk profile of actions taken in the use of data analytics. an aggregated and anonymized manner.Because future, yet-to-be-discovered uses of data cannot be fullyanticipated, a default policy of deleting data in all contexts canbe harmful. A better approach is to manage use in ways that canevolve over time, protecting both the rights and the future optionsof the individual, and the groups and institutions with which theindividual exchanges data. Principles can provide both thefoundations for such a shift and the flexibility for innovation.But managing such a flexible, dynamic system will not be easy.It will require action by all stakeholders coming together toagree on refreshed guiding principles and ways to implementthem including codes of conduct and technological solutions.There is also a need for better evidence of what works and whatdoes not to inform the behaviour of all. And there is a needfor an interoperable global policy framework that incorporatesthis new approach.12 Unlocking the Value of Personal Data: From Collection to Usage
  15. 15. Chapter 2: The Need for a New ApproachFigure 4: Mechanisms to engage individuals and empower them arebeginning to emergeOne of the missing elements of the dialogue around personal data has been how to effectively engage the individual andgive them a voice and tools to express choice and control over how data about them is used.Over the past twelve months there has been significant momentum in terms of personal data stores that provide individualsa place to store and control how a copy of their data is used and government initiatives to encourage organisations to giveindividuals a copy of data about them.Market based mechanisms like this have the potential to give the individuals a real voice and say in how personal datais governed though consumer take-up remains a challenge.Requesting party Personal data store1 Data handback2 Mechanic Purchase Energy Bank Real Estate Company Agent Government midata Home (UK Government Retailer Request Access initiative)3 Source of data Technology Smart Disclosure Company Agent (US Government initiative)4 Health Retailer Doctor Hospital Insurance Mobile Phone Company Credit Card Provider Bank Professional Financial CompanyCompanies who want to access data Several data stores are now up and Several governments are working with theabout individuals can request it through running allowing individuals to exercise private sector to give individuals accessdata agents control over how data about them to a copy of data about them in a usable is used format which can then be stored in their locker and shared with other providersSource: World Economic Forum and The Boston Consulting Group building on original graphic by Forrester Research1: Also known as vaults/lockers 2: Also referred to as data portability or smart disclosure 3: midata is a United Kingdom Government initiative working with the private sector which is assessinghow to give people their personal data in a format that is safe to pass onto third parties, such as price comparison sites – See https://www.gov.uk/government/news/better-choices-better-dealsfor more information 4: Smart Disclosure is a United States Government initiative giving consumers access to the information they need to make informed decisions in usable data formats, sothat innovators can create new interactive tools for consumers. See www.Consumer.Data.gov for more information Unlocking the Value of Personal Data: From Collection to Usage 13
  16. 16. Section Title14 Unlocking the Value of Personal Data: From Collection to Usage
  17. 17. Chapter 3:Principles for theTrusted Flowof Personal DataPrinciples have been and need to be a core part of the future required in a fast-moving connected world, but also enable thegovernance of the personal-data ecosystem. Principles can set accountability and enforceability needed to cultivate trust. Identifyingthe foundation for trustworthy data practice and help empower and refining the principles that reflect societal and cultural normsusers. But principles alone are not enough. Combined with and ensuring ways to uphold them will enable trustworthy datatechnological solutions and accompanied by underlying tools practices, persuading individuals to be more willing to share datasuch as codes of conduct, they can not only provide the flexibility about themselves.Figure 5: Areas to focus on to achieve trusted flow of data emerging from dialogue seriesAREAS TO ADDRESS ANCHORING OECD EMERGING ISSUES FROM PRINCIPLES (1980) GLOBAL DIALOGUE Protection and security Protection and security Protection and security Accountability and enforcement Accountability Accountability Individual partcipaton Empowered role of individual Data quality Rights and responsibilities Openness Transparency and understanding for using data Collection limitation Purpose specification Respect for context Use limitationSource: World Economic Forum and The Boston Consulting Group Unlocking the Value of Personal Data: From Collection to Usage 15
  18. 18. Chapter 3: Principles for the Trusted Flow of Personal DataExisting principles associated with the collection, handling and This dialogue started from the broadly cited OECD principles anduse of personal data have formed the basis of most privacy and focused on the question, “What elements of these principles needdata-protection legislation around the world. A version of these to change to address current and anticipated future challenges?”principles was agreed to internationally in 1980 in the form of the There was broad consensus that change is needed to these principlesOECD Privacy Principles.10 to ensure they are relevant for this changing world.However, as discussed previously, principles need to be periodically The World Economic Forum’s dialogue clustered existing OECDrevisited and updated to reflect current practices and to address principles into three broad categories. This initial clusteringchanged circumstances in technology and society. The world exercise enabled insight into a current view of the overall purposehas changed dramatically in the last five years, let alone the three of the individual principles, which served to inform how a givendecades since the OECD principles were agreed upon. It is principle might appropriately be updated, while still maintainingtherefore important to reconsider how these principles can maximum “backward compatibility” with the original aims of thebe upheld and updated in a way that is appropriate for a principles (See Figure 5).hyperconnected world. Figure 6: The World Economic Forum dialogue grouping of existing principles THREE AREAS TO DISCUSS CHALLENGES Protection and security Remains foundational but challenging given decentralised system Remains critical but need new ways to ensure Accountability and enforcement effective implementation Needs rethinking to ensure relevant in Rights and responsibilities for using data today’s big data worldSource: World Economic Forum and The Boston Consulting GroupTo support this process, the World Economic Forum held a global, The OECD principles were very carefully thought out. This fact ismultistakeholder dialogue on personal data throughout 2012 in reflected in the observation that a number of the OECD principlesthe US, Europe, Asia and the Middle East (See Figure 1 for more remain relevant today. The issue is that they need updating indetails). This dialogue has involved extensive participation from terms of the way in which they are applied and upheld in today’sthe private and public sectors involving more than 40 companies hyperconnected worldfrom IT, telecommunications, health, financial services, logistics,aviation and professional services as well as policy-makers,advocacy groups, and others from the US, the EU and beyond. Protection and SecurityResults from primary research by leading academics were alsoincorporated into this series of discussions.11 The unique perspective Security figures prominently in the original principles and continuesof representatives from international organizations such as the to be foundational. However, approaches to security need toWorld Bank and the United Nations added additional perspective reflect today’s decentralized world. Securing personal data ison the challenges they face and the increasing need for trusted increasingly difficult in a distributed network system with multipleinformation flows. parties involved in storage and management – no one party can do it alone. Dependent on the behaviour of others, all stake- holders collect, hold and use personal data. They must all take In some jurisdictions these principles are known as Fair Information Practice Principles, or FIPPs.10 appropriate steps to secure data from accidental release, theft, unauthorized access, and misuse.11 See for example International Institute of Communications. “Personal Data Management: The User’s Perspective”, http://iicom.org/resources/open-access-resources/doc_ details/264-personal-data-management-the-user-s-perspective-pdf-report ; Rubinstein, Ira. “Big Data: The End of Privacy or a New Beginning?” October 2012. http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2157659 ; Tene, Omer and Jules Polonetsky. “Big Data for All: Privacy and User Control in the Age of Analytics”. Northwestern Journal of Technology and Intellectual Property, Forthcoming. http://ssrn.com/abstract=2149364.16 Unlocking the Value of Personal Data: From Collection to Usage
  19. 19. Chapter 3: Principles for the Trusted Flow of Personal DataAccountability individuals have to understand every detail of every data flow, but they do need to have a broad understanding and a greaterAccountability remains critical, but we need new ways to ensure sense of control of what is happening to data about them toeffective implementation in a hyperconnected world. For the trusted ensure trust.flow of data, all stakeholders should be accountable for how theycollect, store, secure, use and share data. But accountability The current approach to providing transparency through lengthyalone is not sufficient. There is also a need for effective enforcement and complex legalistic privacy policies overwhelms individualsto ensure systemic trust. Yet creating accountability and rather than informs them. The challenges are compounded asenforcement in a rapidly changing, hyperconnected world is more data is being collected by more and more devices, many ofincreasingly difficult given the external pressure for increased which are not within the direct control of the subject of the data.flexibility in design of rules. There are numerous ongoing efforts Simplicity, efficient design and usability must lie at the heart offocused on how to build such accountability working with data transparency. As one participant in Davos noted, effective designprotection regulators and companies, including exploring should be applied to engaging the individual not just to make theco-regulatory approaches as a way to develop a more flexible, website look better.contextually relevant, and efficient approach.12 While it may be impossible to completely move away from legally derived privacy policies, there are many potential ways to help foster this shift to real understanding. There are indications that aRights and Responsibilities for Using data literacy movement is beginning to emerge in North AmericaPersonal Data and Europe to help cultivate real understanding (See Figure 7).However, other principles, particularly those that establish rights Some companies are aiming to develop simple language explanationsand responsibility for using data, need significant rethinking to of their approach to data use so that the individual can morereflect the changes in the world. These changes include the quickly understand the main elements of how data is being usedincreasing recognition of the role of individuals as both producers without having to wade through the legal privacy policy. Intuit,13and consumers of data, the number of new beneficial uses of for example, has established “Data Stewardship Principles” thatdata discovered long after the point of collection, and the sheer are at the heart of how the company deals with personal data.volume of data being created. Other emerging concepts that This sets out in clear simple language what Intuit stands for, whatwere not anticipated at the time of the original drafting of the it will do, and what it will not do. For example, the principles makeOECD principles include the recognition that all data is “dual use” clear that Intuit will not sell, publish or share data that identifies(it can be used for good or bad purposes), and the understanding any person. But the company will use data to help customersthat there is a direct correlation between the value of data and improve their financial lives and to operate its business. Andthe potential intrusiveness of its use. it will give customers a choice about how Intuit uses data that identify them.In particular, reliance on mechanisms of “notice and consent”to ensure individual participation are seen as increasingly A challenge for companies in preparing these “simplified”anachronistic. The current manifestation of the principles through approaches is whether the new approaches will be sufficientlynotice and consent as a binary, one-time only involvement of detailed to pass muster from a “full and conspicuous disclosure”the individual at the point of data collection was identified in the perspective. That problem can be mitigated through thedialogue as an area ripe for reconsideration to better empower adoption by companies of more standardized language for partindividuals, build trust in the system, and encourage the reliable, or all of their policies. This would allow all parties (businessespredictable and more valuable flow of data into and within the system. and consumers) to enjoy the benefits of more familiar and predictable systems, including the legal and rules portion ofOther areas identified as candidates for reconsideration include networked systems.requirements to specify, in detail, the purpose of usage at the timeof collection and to restrict future uses to that purpose. In the Recognizing the benefits of standard legal language in helpingpast, this was a viable solution when collected data was much to normalize the user experience and in reducing risk for bothmore isolated and was not subject to the correlations that can users and businesses in existing markets, others are aimingreveal valuable new information. Given that much of the innovation to standardize and score protection approaches by differentand therefore economic and social value come from subsequent companies. Privacyscore,14 for example, analyses the privacyuses of data, there is work to be done in balancing the rights of policies of companies along four clear criteria and gives eachindividuals yet recognizing that notions of the “single use” of data website a colour-coded rating and score. In this way, Privacyscoreare increasingly difficult to embrace. is able to help translate legalese into a clear and easy-to-under- stand guide (See Figure 7).In addition to identifying areas where existing principles need tobe refined, the dialogue pinpointed three key areas in establishing Mozilla has proposed a symbols-based approach to presentationthe rights and responsibilities for using personal data that could of legal terms that features a number of icons that signal, forform the basis for the evolution of existing principles. (See Figure 6) example, how long data is retained, whether data is used by third parties, if and how data is shared with advertisers, and whetherFrom transparency to understanding: New ways to inform law enforcement can access the data (see Figure 7).15individuals and help them understand how data about them isbeing collected and used are needed. This does not mean that 13 http://security.intuit.com/privacy/data-stewardship.html For example the CIPL project on Accountability, -12 14 http://privacyscore.com/ http://www.informationpolicycentre.com/accountability-based_privacy_governance. 15 https://wiki.mozilla.org/Privacy_Icons Unlocking the Value of Personal Data: From Collection to Usage 17
  20. 20. Chapter 3: Principles for the Trusted Flow of Personal DataAlthough transparency is not a new principle, it warrants revisiting make better use of metadata and leverage existing contractin light of the complexity inherent in a hyperconnected world. law to create simpler and more engaging ways to empower theA refined principle that focuses less on whether information is individual.disclosed and more on truly seeking to help individuals understandhow data about them is being collected and used is foundational Finally, enabling and encouraging forms of “peer support” becomesto the accomplishment of other fair principles of usage. If the increasingly possible in social-network settings, as evidencedindividual does not understand a system, he or she cannot by the multiple rating sites, blogs, FAQs and so on that areeffectively engage with it. When it comes to transparency, less increasingly available to enable consumer choice. In this lattercan sometimes be more. case, businesses that encourage the formation of community around their customers can leverage those relationships to helpFrom passive consent to engaged individuals: Organizations solve business problems. As is often the case in networked(the operations of which depend on a relationship of positive information systems, the source of the problem can also be theengagement with their customers) need to understand and source of the solution.accommodate the changing role of the individual by engaging withand empowering them. The individual was historically seen as a Potentially, markets can encourage a “race to the top” in which“data subject” – a passive consumer of products and services user control and understanding of how data is used andwho was tracked for customer relationship management leveraged become competitive differentiators. Various trust markspurposes only and needed to be notified about how data about and independent scoring systems will help stimulate this kindthem is being used and consent to that use. However, increasingly of response.individuals are being understood to act as both producers andconsumers of data. The current model of notice and consent at Given the complexity of choices, there is also potential for thethe point of collection has not led to a level of engagement by development of “agency type” services to be offered to helpindividuals in terms of how data about them is used; nor is it individuals. In such a scenario, parties would assist others (oftennecessarily commensurate with the value that the assets provide. for a commission or other fee) in a variety of complex settings. Financial advisers, real estate agents, bankers, insurance brokersGiven the sheer volume of data and the various ways that data and other similar “agency” roles are familiar examples of situationsis collected and used today, it is, as a practical matter, physically when one party exercises choice and control for another party viaimpossible for an individual to consent to all the different data intermediary arrangements. Just as individuals have banks anduses. Rather than relying on yes-or-no consent at the point of financial advisers to leverage their financial assets and take carecollection, individuals need new ways to exercise more effective of their interests for them, the same type of “on behalf of” serviceschoice and control when data is being used in a way that impacts are already starting to be offered with respect to data.them. As part of this, organizations must be clear to individualsabout the value exchange that is taking place for data, in terms From black and white to shades of gray: Given the complexityof monetary and other benefits, so that those individuals can and speed of change, flexibility is needed to enable themake truly informed choices between different options based simultaneous deployment of different but complementary approacheson what they consider fair. depending on the context in which data is used. For example, an appropriate data-usage practice for treating an individualConsider how BT implemented the recent update to the EU as a patient in a medical emergency situation may not bee-privacy directive, often referred to as the “cookie law”, which appropriate for that individual in financial services settings or forrequires companies to obtain the consent of their website users targeted advertising.before using cookies to track behaviour online and to personalizeservices. Whereas most companies put in place a pop-up box The challenges of contextual complexity have at least twoasking users to click to consent (a standard but relatively opaque implications. First, there is a clear need to avoid a one-size-fits-allprocess), BT implemented an easy-to-understand practice for approach to issues including consent, notice, what is and isvisitors to its website. A simple pop-up screen allows users to not personal data, and more, given that the context of the datadiscern the strictly necessary cookies required for the site to use is crucial to determining what is and isn’t appropriate.operate properly (from which customers do not have the right For example, permissions to use data within a company to fulfilto opt out) and the functional and targeting cookies that enable a customer order will differ from those associated with using thispotentially “intrusive” social sharing and behavioural tracking, but data for a completely unrelated purpose that may have beenthat also enable the best experience for site users. The company created through subsequent analysis. This is not to say that allclearly explained what customers get for the information they potential uses of data need to be mapped out in detail for everygive, helping individuals to make an informed and engaged choice data collection, but clearly there is work to be done in improving(See Figure 7). the information flow between data subjects and data collectors so that individuals can form reasonable expectations, and haveTechnology and new approaches can clearly help. Organizations those expectations met.need to build simple-to-use tools that encourage individuals tobecome engaged in setting the policy governing use of data and Second, the importance of context strengthens the need toto be able to change those settings over time without being shift the focus of engagement for the individual from the point ofoverwhelmed. Usability and simplicity are key to effectively collection to the point of usage. In the past, when data was notengaging the individual and enabling users to see and understand networked and was used only once, it was possible to declareequitable benefits, keeping in mind that the benefits may specifically why a particular set of data was being collected. Theresometimes be shared between the organization and the individual may still be situations where data is appropriately collected forand even with society in general. In addition, organizations can only a single purpose and a single use, but in the era of big data,18 Unlocking the Value of Personal Data: From Collection to Usage
  21. 21. Chapter 3: Principles for the Trusted Flow of Personal DataFigure 7: Emergence of different tools that help individuals understandhow personal data is usedPrivacyscore helps individuals understand how different WolframAlpha helps individuals visualize vast quantitieswebsites use data of social data about themSource: www.privacyscore.com Source: http://www.wolframalpha.com/facebook/Mozilla has proposed icons which would create a common BT offers users a sliding scale of choices with a clearset of symbols for how websites use data explanation of the value exchange taking placeSource: https://wiki.mozilla.org/Privacy_Icons Source: http://www.bt.com/; https://github.com/BTplc/Cookies Unlocking the Value of Personal Data: From Collection to Usage 19
  22. 22. Chapter 3: Principles for the Trusted Flow of Personal Datasingle-use collections reflect a decreasing percentage of overalldata collection. This point is fundamental to the design of futuredata systems that can harness the value of multiple instances Global Momentum to Establishof data leverage while still protecting stakeholder rights. New Norms for Personal DataThe advent of systems to enable the replication of this type of In addition to the World Economic Forum’s efforts toleverage on a large scale would have potentially dramatic convene a multistakeholder dialogue, various other groupseconomic benefits. If data is deleted after its first use then the are exhibiting increasing momentum to establish newpotential future economic and social value that could be created and evolving norms to guide how personal data can befrom subsequent uses is lost. Yet, this potential leverage is not used to create value.without potential future risks of misuse of the data. For example, the OECD and its member governments haveThere are legitimate reasons why individuals and organizations been discussing how to refresh the OECD principles formay want to delete data. Retention of data involves both costs a hyperconnected world. Other groups such as the Centreand risks including of it being breached or misused. The current for Information Policy Leadership (CIPL) have been focusingapproach to data does not effectively ensure the security of data, on accountability, one of the key aspects of the principles.does not ensure accountable trustworthy data practices by data In addition, different sector groupings and regionalhandlers nor does it give individuals an effective understanding authorities have been considering how these principlesand control for how data can and cannot be used. Under such apply to their particular applications. The GSMA hascircumstances, it is only natural that many people see data developed principles for mobile privacy, and the Digitaldeletion as the only tool an individual has to combat misuse. Advertising Alliance has developed principles for the useWithout clearly established trustworthy data practices, many of data in online behavioural advertising. In addition, theorganizations too are increasingly seeing that data is a potential Asia-Pacific Economic Cooperation (APEC) forum isliability as well as an asset and are choosing to delete data to establishing a cross-border privacy rules system to harmonizeprevent the downside risks. approaches throughout the region.It is also important to distinguish between data being used to Privacy by Design was adopted, in October 2010, as thegenerate insights and discover new patterns and how they are global privacy standard in a resolution by the Internationalapplied to the individual. One way of dealing with this ambiguity Data Protection and Privacy Commissioners in Jerusalemis to more clearly identify specific risks and intrusions of concern. at their annual conference. It has since been incorporatedOnce these are known, actions to manage and prevent them in various regulations around the world and is a real and recentcan be addressed. evolution to privacy principles on an international level.The approach of “reasonableness” has also been advanced as The proposed European Commission Data Protectionone possible way to help manage the risk of harms. Establishing Regulation currently under discussion by the Europeaneasily understood and reasonable expectations could help Council and Parliament is the most comprehensive attemptincrease trust and reliability. to establish new norms for the flow of personal data. While differing views were expressed throughout the dialogue onAlthough a contextual approach is more flexible and able to strike these proposals and the underlying principles, it was clearthe balance between using data to create value and protecting that these rules when agreed will have a significant impactthe individual, it is difficult to implement. The challenge is defining on the global governance of personal data.data permissions and allowable use contexts.To address this challenge, it is critical to be able to answer anumber of questions. What is the provenance of the data?What are the associated permissions for accessing and using it?And what are the allowable circumstances of use?20 Unlocking the Value of Personal Data: From Collection to Usage
  23. 23. Panel of executives addresses participants in Davos workshopGraphic summary of Davos workshop on personal dataRay Baxter, Kaiser Permanente (left); Ellen Richey, Visa Inc.; Lynn St Amour, Internet Society, leads a breakout Hamadoun Touré, International Telecommunication Union (left);Craig Mundie, Microsoft Corporation discussion in Tianjin, China Viviane Reding, European Commission Unlocking the Value of Personal Data: From Collection to Usage 21
  24. 24. Section Title22 Unlocking the Value of Personal Data: From Collection to Usage
  25. 25. Chapter 4:Principles intoPracticePrinciples by themselves are not enough. To translate principlesinto practice, a number of steps must be taken. Technology Can Support andIt is important to build a better evidence base that informs allstakeholders about how the managed use of data can create Uphold Policy Aimssocioeconomic value, and to better understand user attitudes One potentially promising way to use technology to helpand behaviours regarding the use of data in different contexts. address policy goals is to use data system functionalityThe achievement of sustainable economic growth requires clear to provide information about the data itself. The generationinsights on both fronts. This evidence will help make the case of so-called metadata is an example of this approach.for the value of a trusted flow of personal data. In the absence Metadata is the term used for “data about data”. Theof such evidence, public debate will continue to be dominated generation of metadata can enable the system to answerby speculation, uninformed fear, uncertainty and doubt. such questions about collection history, uses, and more. Such a system would be structured so that each bit of dataAn evidence base can help facilitate an informed dialogue among actually carries (or is virtually linked to) information aboutstakeholders in the personal data ecosystem with the aim of its provenance, permissions, and so on. This approachdeveloping an appropriate policy framework. However, given enables real-time, periodic verification of usage consistentthe pace of change in technologies, society and institutional with established restrictions and the maintenance ofstructures, this evidence will need to be updated constantly, contextual integrity in the use of the data as they flowsrather than just periodically. An ongoing feedback loop indicating through the value chain. However, governance of metadatawhat is working and not working is needed to guide better needs to be carefully managed as its use can also createdecision-making and actions by all stakeholders. One of the most potential risks and misuse.broadly shared data system needs across cultures, jurisdictionsand contexts is a transparent, simple, responsive and empoweringrule-making processes and system operations.Also needed is an agreed upon set of rights and duties based The “law” can have effects on data systems both through publicon principles for trusted flow of data. With a shift in the focus law (such as legislation and regulation) and private law (such asto frameworks focused on the use of data, additional work is through contracts and self-regulatory organization structures).needed to design, define and come to agreement on the specifics Both types of laws must be flexible.of “duties of care” associated with data actions such as collection,use, processing, transfer and the like. These can form the basis Government legislation and regulation have a crucial role to playof industry codes of conduct. in establishing trusted flow of data, but given the speed of change and complexity, it can never be relied upon to cover everything.Technology can play a role in the crafting of solutions that will As noted above, there is a strong role for co-regulation, includinghelp to enable and facilitate policy alternatives. For example, the enforceable industry codes of conduct.metadata-based infrastructure (see sidebar), in which descriptionsof actual usage practices are captured, could support increasedtransparency, predictability and trust and could help establish astrong foundation for trustworthy data practices. Unlocking the Value of Personal Data: From Collection to Usage 23
  26. 26. Chapter 4: Principles into PracticeOrganizations of all types will be well served if they do notcontinue to try to “go it alone”, but instead move to agree on,adopt and ensure compliance with uniform, consensus-based Key areas for further worktrustworthy data practices. In particular, institutions will benefitif they rethink how they engage with individuals so that those • Establishing an updated set of shared principles, and theindividuals both trust how data about them is being used and means to uphold them in a hyperconnected worldhave a real stake in those uses. • Need to demonstrate how a usage-based contextual model can work in specific real world applications.It is clear that there is a role for simplification of complex systems This will require further thinking on how to establishto engender trust and adoption. Individuals should be provided which uses should be permitted and which should bewith access to simple tools that enable them to either understand constrained especially given new uses of data are beingor set the policy to be applied to the use of data, and be able to discovered so quicklychange that selection over time. It should be possible for them to • Developing usage-based codes of conduct that establish delegate the detailed specification of their policy choices to third clear norms for trustworthy data practicesparties, perhaps through agency arrangements with organizations • Establishing how technology can be part of the solution –that can further their values and norms. allowing permissions to flow with the data and ensuring accountability at scaleBut care must be taken. The growth of data collection, transfer • The space to test and learn to work out what works andand processing is proceeding at exponential rates worldwide, what does not given the speed of change and complexityand data uses are also growing at a nonlinear pace. However, in the personal data ecosystempeople’s attention span and cognitive capacity are not keeping • Examine how the most current evolution of privacypace. Organizations need to avoid overwhelming individuals with principles, Privacy by Design, has already assisted ininformation and choice in the name of engagement. The amount finding privacy protective features for the personalof information and choice must also be driven by context. data ecosystemMaking these changes will not be easy, but nor is it optional.Change is never neutral and can often create “winners” and “losers”.Such an approach will require changes by all stakeholders totheir traditional approaches and a willingness to work togetherto unlock the value of personal data and to balance growthwith protection.24 Unlocking the Value of Personal Data: From Collection to Usage
  27. 27. AppendixRelevant UseCasesAs discussed in the report, personal data can create significanteconomic and social value for individuals, companies,government and society at large. However such uses can alsoraise significant risks of harm to individuals. They also raisechallenges that need to be overcome to allow this value tobe created.By considering the issues discussed in this paper in the contextof a range of case studies, it is possible to start to see thedifficulties of one-size fits all approaches and the importance ofa contextual, usage approach to personal data. All of the casesaim to create a trusted flow of data to strike a balance betweengrowth and protection.The following set of case studies have been produced bymembers of the World Economic Forum’s Working Groupon personal data. They cover a range of sectors including health,financial services, telecoms, marketing, automotive, globaldevelopment, government and more. Unlocking the Value of Personal Data: From Collection to Usage 25
  28. 28. Appendix: Relevant Use CasesManaging chronic conditions through Leveraging data to solve globalbetter access to and sharing of data – health’s toughest problem – tacklingcollaborative cardiac care service chronic diseaseWhat is it? What is it?• Physicians, nurses and pharmacists collaborate with coronary • Public health initiative launched 2008 aimed at addressing artery disease (CAD) patients to coordinate care Abu Dhabi’s high chronic disease burden• Lifestyle modification, medication management, patient education, • Comprises tailored whole-population screening then targeted lab results monitoring and adverse events are coordinated interventions in well-stratified groups delivered at scale, enabled across diverse virtual teams by eHealth technology• Patients have an 88% reduced risk of dying compared to those • Personalized individual interventions plus group and population not in the programme interventions driven from hard data (attributable individual-level• Patients at a cholesterol goal went from 26% to 73% screening)• Cholesterol screening went from 55% to 97% • Consent at time of screening and data guardianship model • In absence of Data Protection Law, voluntary adoption ofHow was personal data used to create value? international standards (Health Authority is Data Guardian)• Immediate access to reliable, evidence-based information at all points of care How was personal data used to create value?• This enables each care team member to support a given • Weqaya data used to determine impact of different interventions, patient’s care plan, encourage treatment adherence and allow generating a unique, scalable health feedback loop to identify disparate care teams – from primary care to pharmacy to the most effective interventions rehabilitation centres – to coordinate care, regardless of setting • Weqaya data (with the consent of screened individuals) can• Integrated uses of data aggregated from different entities, also be used for a range of secondary uses, for example, caregivers and patient touch points were all used together academic research, pharmaceutical RD and the refinement in coordinated workflows of risk prediction methods • Data enables proactive management of health riskScale of the impact • Opens up game-changing model for outsourcing contingent• Clear Results – better survival rates and reduced need for liability of worsening health to Disease Management entities, emergency interventions: The results were impressive enabling governments/payers to directly “Pay for Health”• Nationwide, research indicates that fewer than 20% of CAD patients are expected to survive 10 years after their first Scale of the impact heart attack. The coordinated, evidence-based care, enabled • 200,000 adults screened through the programme at least every by Kaiser Permanente HealthConnect (an electronic care registry), three years (more frequently if higher risk) and cross-functional coordination increased that survival • ~70% of this population has increased cardiovascular disease risk rate dramatically • 1/3 with diabetes, 1/2 with high blood pressure and 2/3 with high cholesterol were unaware before screeningConstraints/issues this raises • Programme participants show better control of diabetes and• Privacy and security: Individual consent and authorization for dyslipidaemia the use of confidential medical records data for purposes • Since Weqaya compliance with care standards far higher for other than treatment, and the security of those data systems diabetes than for other chronic disease – interest in expanding• Ability to accurately, reliably and consistently match individuals scope to cover other chronic diseases to their data from different sources over time Constraints/ issues this raises • Determining which data may be shared with whom • Need to strengthen mechanisms and rules for: - Data protection, including rights and responsibilities for - data use (primary and secondary) - Accountability and enforcement - Gain share from data use • Building a cadre of qualified data counsellors to explain complex risk-benefit • Exploration of dynamic consent beyond original use case • Opportunities to serve other health markets that have expressed an interest in the model Weqaya, Abu Dhabi Health Authority Source: “eHealth as foundation for tackling NCDs” (2012); “Measuring health dataKaiser Permanente management in Abu Dhabi”,’ http://www.weqaya.ae/en/index.php; www.shafafiya.org;Source: www.kaiserpermanente.org http://www.haad.ae/haad/tabid/819/Default.aspx26 Unlocking the Value of Personal Data: From Collection to Usage

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