DOCSLIB.ORG

Future of Patient Data Patient of Future Insights from Discussions Multiple Around the Expert World

Total Page：16

File Type：pdf, Size：1020Kb

Download full-text PDF Read full-text
Future of Patient Data Patient of Future Insights from Discussions Multiple Around the Expert World Future of Patient Data Insights from Multiple Expert Discussions Around the World World Expert the Around Multiple Discussions from Insights FUTURE OF PATIENT DATA Insights from Multiple Expert Discussions Around the World 1 Future of Patient Data Insights from Multiple Expert Discussions Around the World World Expert the Around Multiple Discussions from Insights 2 Future of Patient Data Insights from Multiple Expert Discussions Around the World World Expert the Around Multiple Discussions from Insights FUTURE OF PATIENT DATA Insights from Multiple Expert Discussions Around the World 3 Contents Foreword 6 Acknowledgements 7 Introduction 8 Future of Patient Data Context 16 Shared Challenges 26 Integration 28 Ownership vs. Access 38 Trust 45 Insights from Multiple Expert Discussions Around the World World Expert the Around Multiple Discussions from Insights Security and Privacy 52 Future Opportunities 58 Personalisation 60 Data Marketplaces 68 The Impact of AI 73 New Models 86 Emerging Issues 96 Data Sovereignty 98 Digital Inequality 102 Privatisation of Health Information 111 The Value of Health Data 115 Conclusions 120 Questions 122 Appendix 124 4 Charts Project Summary 10 Healthcare Spend vs Life Expectancy 12 Growth In Healthcare Data 17 Doctors with EHR and Multifunctional Health IT Capacity 30 Consumers Willing To Share Health Data 46 Future of Patient Data Data Breach Cost Per Capita 53 Number of Personalised Medicines (US - 2008 to 2016) 63 Genetic Disorders with Diagnostic Tests Available 65 Number of Artifical-Intelligence Companies 76 Older Adults With Three Or More Chronic Conditions 104 Insights from Multiple Expert Discussions Around the World World Expert the Around Multiple Discussions from Insights Case studies Validic 35 Apple 36 Nebula Genomics 43 Digi.me 44 Flatiron 50 Deepmind 80 iCarbonX 82 Facebook 84 Verily 92 Amazon 94 Cityblock 109 Tricog 110 5 Foreword I am pleased to share this unique and wide-ranging We believe that the growing body of research insight on the Future of Patient Data as part of a on patient data and digital healthcare will help crowdsourced research initiative organized by our stakeholders make better-informed decisions. partner, Future Agenda. Accenture was fortunate Initiatives, like this workshop series with Future to be part of this project — hosting workshops in Agenda, help to advance complex discussions that Future of Patient Data Oslo, Singapore and London—as part of the larger impact society and humanity as a whole. effort that brought together some 300 attendees in eleven countries. We sincerely thank Future Agenda’s program directors, Dr. Tim Jones and Dr. Caroline Dewing, The report provides a synthesis of the main views for their collaboration, my colleagues involved, expressed and explored. As such, whilst not as well as the other partners and experts for representing the views of any single organisation, devoting their precious time and resources to this it is a provocative and highly valuable contribution. worthwhile project. Its geographic scope along with the range of contributors involved make it a unique undertaking Insights from Multiple Expert Discussions Around the World World Expert the Around Multiple Discussions from Insights at a time when health systems around the world are taking steps to guide the advancement of patient data and health records. The findings highlighted two diverging ideals: one focused on the need to “free” data, arguing that better research, intelligent applications and efficiency depends on data accessibility, with the other arguing for the privatization of data, giving ownership to the consumer or health organization. Ensuring data quality while protecting property, sovereignty, trust and security, seems to be the way forward. Kaveh T. Safavi MD JD Senior Managing Director, Global Health Accenture: Insight Driven Health 6 Acknowledgements The insights upon which this report is based were We hope that this report provides an accurate gained via multiple discussions with over 300 reflection of your views. In addition, we would like experts around the world. We would also like to to thank the generosity of the forward-looking thank all those who have spared their time to join in organisations that have supported the varied events. these events and share their perspectives. Future of Patient Data Insights from Multiple Expert Discussions Around the World World Expert the Around Multiple Discussions from Insights 7 Introduction The world’s healthcare systems are experiencing significant change. We are at a point, or more accurately multiple points, of major transition around the ways we can improve access, manage and transform how to control and treat disease. The expectation is that over the next few years we will see a sizeable shift in the Future of Patient Data effectiveness of healthcare. As the impact of rising public expectation around • Increasing automation across healthcare – from better wellness and health, the effect of increasingly chat-bots to surgery, sedentary lifestyles and progressively aging • The expansion of wearables, providing access to populations all converge, some fear that, in many new aspects of personal health data and Insights from Multiple Expert Discussions Around the World World Expert the Around Multiple Discussions from Insights nations, we will be unable to find the necessary funds for high quality healthcare. Others are more • A steady decrease in the cost of, and an increase hopeful that with the adoption of new technologies, in, the access to genetic profiling. particularly associated with a more patient-centric approach to both health and sick care, we are on the cusp of a significant step forward in the efficiency, Within this context, there are however many efficacy and effectiveness of how we diagnose, treat, differences of opinion and perspectives on how these manage and, ideally, prevent chronic and acute and other shifts will actually play out over the next disease. Indeed, a commonly shared ambition is decade. What will drive them? Who will pay? Who that a more information-rich, digital approach to will benefit the most? How quickly will transformation healthcare over the next decade will inherently be occur? What will be the catalysts for change? Where more effective and patient focussed. specifically will be the greatest impact and why? These are all key questions that many organisations around the world and across multiple sectors are Some key advances that are seen to have already asking. As many governments, companies and had substantial effect include: communities all seek to make the right moves and investments, a good number are keen to see the • Wider adoption of smartphones which are able to global, cross-functional context within which the sense as well as diagnose, possible change is occurring. In a sector where • More empowered patients equipped with a fragmentation is sometimes extreme, where funding burgeoning volume of information about their is often challenging and where local or regional condition, regulations can frequently influence the market, many are keen to gain the broader perspective and then • Tangible advances in machine learning, cognitive see how, where and why their individual areas of computing and wider AI, focus can have the greatest impact. 8 Approach In order to provide a global view of the patient data arena, over a six-month period the Future Agenda team undertook a major multi-country project to explore the key changes on the horizon. A series of 12 events took place around the world from September 2017 to the end of January 2018 providing the opportunity to Future of Patient Data discuss the major shifts with multiple experts from across a wide range of industries, providers, researchers, governments and start-ups. As with all Future Agenda programmes, each event identified the key issues that matter, added in brought together a rich mix of informed people who additional views and highlighted the pivotal areas for could challenge existing assumptions, share new future innovation and the most significant shifts - both perspectives and build insightful pragmatic views of globally and locally. Each event was supported and World Expert the Around Multiple Discussions from Insights how change will most likely occur. Starting with an hosted by different organisations from across the initial perspective drawn from existing research and healthcare arena keen to collaborate and build the previous discussions about the future of health, the informed global view. This report is a synthesis of the future of ageing, the future of data and the future insights gained from these discussions. of privacy, this series of workshops progressively 9 Project Summary London 14 DEC 2017 Oslo 30 OCT 2017 Mumbai 23 NOV 2017 C Combining Data Sets C Combining Data Sets C Data Quality Trust Getting Closer to the Patient Ulterior Motives Linkability of Open Data Expanding Set of Data Data Ownership O Embedded AI O Predictive Analysis O Data Marketplaces Getting Closer to the Patient Personalisation India Setting Standards Predictive Analysis Artificial Intelligence Artificial Intelligence Future of Patient Data E New Business Models E Standardised Measures E Informed Consent Standardised Measures Inequality New Models Inequality Global Data Sharing Inequality San Francisco 19 JAN 2018 Brussels 9 NOV 2017 Dubai 27 SEPT 2017 C Integration of Data C Ulterior Motives C Data Gaps Data Quality Resistance from HCPs Infrastructure Unstructured Data Trust Digital Skills O Individualized
Load more

Recommended publications
  • Alphabet Company 2021 Report
    Alphabet Company 2021 Report 22 January 2021 ALPHABET ALPHABET COMPANY COMPANY OVERVIEW Alphabet, Inc. is a holding company, which engages in the business of acquisition and operation of different companies. It operates through the Google and Other Bets segments. The Google segment includes its main Internet products such as ads, Android, Chrome, hardware, Google Cloud, Google Maps, Google Play, Search, and YouTube. The Other Bets segment consists of businesses such as Access, Calico, CapitalG, GV, Verily, Waymo, and X. The company was founded by Lawrence E. Page and Sergey Mikhaylovich Brin on October 2, 2015 and is headquartered in Mountain View, CA. The company currently falls under ‘Mega-Cap’ category with current market capitalization of 1100 B. Market capitalization usually refers to the total value of a company’s stock within the entire market. Google’s namesake search engine and YouTube video service are gateways to the internet for billions of people and have become more essential as they transact and entertain online to avoid the virus. Advertisers have turned to Google’s ad system to let shoppers know about deals and adjusted service offerings as the economy chugs along again. ALPHABET FINANCIALS - Q3 2020 The company beat estimates across the board, following its first-ever revenue decline in Q2. The results showed a strong rebound in its core advertising business, which was hit hard by customer spending pullbacks amid the Covid-19 pandemic. Total revenues of $46.2 billion in the third quarter reflect broad based growth led by an increase in advertiser spend in Search and YouTube as well as continued strength in Google Cloud and Play $46.17 BILLION On the company’s earnings call, CEO Sundar Pichai said, “This year, including this REVENUE quarter, showed how valuable Google’s founding product, search, has been to people.” Pichai said starting next quarter, it will report operating income for its cloud $16.40 business, joining Amazon in giving investors EARNINGS PER SHARE more details.
    [Show full text]
  • 4. Google Health a Number of Companies Offer to Store Personal
    4. Google Health A number of companies offer to store personal health records on the Web. Companies in this business hope to capitalize on the huge market of interested consumers seeking online health information and controlled health spending. The newest entry is Google Health with its technical know-how, deep pockets, and familiarity to consumers. A trial of Google's program with Cleveland Clinic patients was quickly oversubscribed, quelling fears that patients would worry about the security of their records. Google Health users will create their own electronic medical record online, with the capability to enter and manage health information and access it online from anywhere. This portable medical record will be accessible regardless of doctor, moves, insurance changes, etc. The record can be set to send reminders to refill prescriptions and schedule return medical visits. Permission from the patient is required to access the patient's record; however, there are important exceptions noted in the Google Health Terms of Service and Sharing Authorization to which users must agree when they sign on for the service. Google Health is free to users. Experts have long touted electronic medical records as a way to overcome the lack of coordination among health care providers. In addition, electronic records provide patients and providers with search capability linking information in the patient's records with information about health care alternatives, thereby giving patients more control over their health care choices. Access is available to patients, and to providers with patient consent. Google Health allows the patient to determine what information is shared with medical providers and pharmacies.
    [Show full text]
  • Testimony of Marc Donner, Director of Engineering, Google Health
    Testimony of Marc Donner, Director of Engineering, Google Health National Committee on Vital and Health Statistics Executive Subcommittee on Privacy, Confidentiality & Security Hearing on Personal Health Records May 20, 2009 Good afternoon and thank you for the opportunity to testify before the subcommittee on the important issue of Personal Health Records (PHRs). My name is Marc Donner and I am the Engineering Director for Google Health™. I have over thirty years of experience in engineering of hardware, software, and complex systems, and I hold a Ph.D. in Computer Science from Carnegie-Mellon University. My role on the Google Health team is to supervise the infrastructure and product design of Google Health. The focus of my attention is on ensuring our ability to scale, receive standards-compliant data from as many sources as possible, protect the integrity and privacy of PHR information, and increase the usefulness of Google Health data for our users. In my testimony today, I would like to focus on three main points: First, I'd like to discuss PHRs and their role in the healthcare industry. Second, I'll describe Google's health-related initiatives including Google Health, our own PHR product. Finally, I will make a handful of policy recommendations based on the experience that Google™ has had to date with health information technology generally and PHRs specifically. PHRs and how they fit into the bigger picture Google Health launched its PHR in the spring of 2008. In 2006, it was estimated that were roughly 200 PHRs. 1 In the past three years, many more products have emerged, along with Google’s offering.
    [Show full text]
  • Google's 'Project Nightingale' Gathers Personal Health Data
    Google's 'Project Nightingale' Gathers Personal Health Data on Millions of Americans; Search giant is amassing health records from Ascension facilities in 21 states; patients not yet informed Copeland, Rob . Wall Street Journal (Online) ; New York, N.Y. [New York, N.Y]11 Nov 2019. ProQuest document link FULL TEXT Google is engaged with one of the U.S.'s largest health-care systems on a project to collect and crunch the detailed personal-health information of millions of people across 21 states. The initiative, code-named "Project Nightingale," appears to be the biggest effort yet by a Silicon Valley giant to gain a toehold in the health-care industry through the handling of patients' medical data. Amazon.com Inc., Apple Inc. and Microsoft Corp. are also aggressively pushing into health care, though they haven't yet struck deals of this scope. Share Your Thoughts Do you trust Google with your personal health data? Why or why not? Join the conversation below. Google began Project Nightingale in secret last year with St. Louis-based Ascension, a Catholic chain of 2,600 hospitals, doctors' offices and other facilities, with the data sharing accelerating since summer, according to internal documents. The data involved in the initiative encompasses lab results, doctor diagnoses and hospitalization records, among other categories, and amounts to a complete health history, including patient names and dates of birth. Neither patients nor doctors have been notified. At least 150 Google employees already have access to much of the data on tens of millions of patients, according to a person familiar with the matter and the documents.
    [Show full text]
  • All Cap Equity Portfolio
    All Cap Equity Portfolio John Spicciatie Brian Mark Portfolio Manager Assistant Portfolio Manager (800) 966-9343 EXT. 204 (800) 966-9343 EXT. 205 [email protected] [email protected] MARGIN OF SAFETY ST. JAMES INVESTMENT ADVISORS “Confronted with the challenge to distill the secret of sound investment into three words, we venture the motto, MARGIN OF SAFETY.” — Benjamin Graham, The Intelligent Investor Page 2 St. James All Cap Equity Portfolio ST. JAMES INVESTMENT ADVISORS The St. James Equity Portfolio seeks long-term capital appreciation through an actively managed portfolio of companies with sustainable competitive advantages and consistent strong business performance. The portfolio will consist of approximately 30 to 35 holdings and is balanced amongst market capitalizations, sectors, and industries. We emphasize “All-Weather Businesses.” St. James employs a disciplined investment strategy by identifying high quality companies at what it believes to be attractive prices. We focus on essential companies in today’s economy but notably on companies we believe will be just as relevant in five to seven years. Exceptional business performance combined with endurance! Page 3 Objective and Why Consider ST. JAMES INVESTMENT ADVISORS ◆ We invest in quality companies with strong cash flow above operating needs. Maintain competitive advantages over the long-term by reinvesting back into their business to maintain and improve their competitive advantages! ◆ Exceptional Return on Shareholder Equity Measures how many dollars of profit generated for each dollar of shareholder equity. How well is a company utilizing its equity to generate profits? We target companies that have an ROE of greater than 15% and we believe will maintain or grow during the next five to seven years ◆ Under normal circumstances, at least 95% of the portfolio assets will be invested in equity securities selected through a thoughtful value-oriented approach.
    [Show full text]
  • THE DIGITAL HEALTH DEBATE Ci C
    THE DIGITAL i C C NOV 2015 HEALTH DEBATE i A REPORT ON HOW DOCTORS ENGAGE WITH DIGITAL TECHNOLOGY IN THE WORKPLACE THE DIGITAL HEALTH DEBATE 2015 | ©CELLO HEALTH INSIGHT FOREWORD i C C i PAUL MANNU Master Practitioner, Behavioural Insights [email protected] Advances in digital technology have The research explores doctors’ perceptions Online interviews with become ubiquitous within healthcare, of how smart technology such as apps bringing about breakthroughs in diagnosis, and wearables can be used by patients to new treatment options and at the same better manage their health. time heralding the expansion of companies usually associated with technology into the The appendix section also includes our market place. findings on doctors’ preferences when 1,040 participating in research via a mobile app. certified doctors Enter Google Health, Apple Health, and Microsoft HealthVault. These major players Throughout this report, consideration has are accompanied by IBM with ‘Watson’, been given as to what the survey findings a new cognitive system that processes mean for pharmaceutical marketing information more like a human than a strategies. If you would like to know computer. IBM claim Watson will be able more about the specific relevance of this to ‘see’ medical images once its advanced research to marketing, sales and business image analytics and cognitive capabilities intelligence please get in touch. are merged with a newly acquired medical imaging management platform. For more information about the full extent of the survey research, please do not 8 The potential for these new and symbiotic hesitate to contact us. Markets relationships is vast and doctors are at the heart of it.
    [Show full text]
  • Accessible Telehealth - Leveraging Consumer-Level Technologies and Social Networking Functionalities for Senior Care
    Accessible Telehealth - Leveraging Consumer-level Technologies and Social Networking Functionalities for Senior Care Jaspaljeet Singh Dhillon and Burkhard C. Wunsche¨ and Christof Lutteroth Department of Computer Science, University of Auckland, New Zealand [email protected], [email protected], [email protected] Abstract— The increasing cost of healthcare represents a our framework for a novel telehealth system and Section V serious challenge to most developed countries. Telehealth has and VI explain its design and implementation, respectively. been widely promoted as a technology to make healthcare more We evaluate our prototype in Section VII and conclude the effective and affordable. However, current telehealth systems suffer from vendor lock-in and high cost, and are designed paper in Section VIII with a summary of our contributions for managing chronic diseases, rather than preventing them. and future work. In this paper we evaluate technologies for supporting senior health consumers. Based on this we propose a framework for a II. CONSUMER-LEVEL HEALTH INFORMATICS novel telehealth system overcoming many of the shortcomings APPLICATIONS of existing technologies. The new system is web-based, has a Facebook-like plug-in architecture for adding new health The most common consumer-level health informatics ap- applications, and incorporates social networking functionalities. plications are telehealth systems, health record management We discuss the challenges in implementing the system, and systems, health information websites, and exergames. summarize a user study evaluating the system. Our results Telehealth systems consist of vital signs measurement de- demonstrate that health consumers have a positive view of this vices and a patient station, which allows interaction between new telehealth technology, and that it can positively change the attitude of users towards their health.
    [Show full text]
  • Is Your Company Googling It's Security and Privacy Away? Raj
    Is Your Company Googling It’s Security and Privacy Away? Raj Goel investigates. It’s no secret that Google retains search data and metadata regarding searches—in fact, they’re quite open about it. What’s unsure though is the long-term threat to information security and privacy. Most consumers regard privacy as a basic right. They do not expect their private transactional details—whether it’s what they purchased or complained about, or how they paid for the purchase—to be part of the public record. As long as companies have retained consumer data, there have been privacy breaches. Stone tablets, paper ledgers, data warehouses—it doesn’t matter how you store it, eventually, some of it will leak out. Here are some examples of the ways that data has been leaked: • Criminal acts: theft of data; insiders selling data • Carelessness: putting unshredded paper records in the trash bin; shipping unencrypted backup tapes • Lack of privacy awareness: prior to legislation such as the Healthcare Insurance Portability and Accountability Act, it was legally acceptable to place records in the trash; using personally identifiable numbers such as Social Security numbers as primary keys even though the various amendments to the Social Security Act reserved the use of SSNs to the US Treasury • Going out of business: once a company ceases operations, all privacy policies are null and void. What’s Google Role? So far, Google hasn’t lost information, other institutions have. However, Google plays an ever-increasing role in our consumer and business lives. It has built a substantial business and reputation, which could pose a serious threat to consumer privacy worldwide.
    [Show full text]
  • Changing the Game: Tech Briefs August 2007
    the way we see it Changing The Game: Monthly Technology Briefs January 2009 Google Health: A Business Technology & Web 2.0 Use Case Read the Capgemini Chief Technology Officers’ Blog at www.capgemini.com/ctoblog Google Health: A Business Technology & Web 2.0 Use Case The UK government got the wrong type of headlines for its attempt to provide shared access to health records across hospitals, doctors, and other health professionals when its NHS Connecting for Health program ran into difficulties. At the same time, Google was successfully delivering an almost identical program called Google Health in North America. The difference was that the techniques used by the UK NHS (National Health Service) program were based on conventional database driven management. It attempted to build a huge master database that would combine all the necessary data and was then surrounded by various user applications. The questions of scale and governance were only outweighed by those of security and authorization. Google Health takes an entirely different approach and is a good example of a Business Technology (BT) solution that is built using Web based technology. The solution is also powered by the Cloud as an ‘Invisible infostructure’. Web Services are deployed to provide ‘Interactions rather than Transactions’. Users have a high degree of freedom in how they choose to personalize their use of the health records: the ‘You Experience’. This combination, with many other sources of information, is a prime example of how to ‘thrive on data’. The whole system is built upon a ‘Standards based’ approach and allows the invocation of flexible ‘Process on the Fly’ between participants that can connect to existing IT applications when necessary.
    [Show full text]
  • Using Google to Search for Articles in the Health Sciences
    Using Google to search for articles in the Health Sciences You may have had a professor who said, “Don’t use Google to do your research.” Or you may have heard, “Only use the library databases.” Well, I’m going to let you in on a little secret. Google can actually be a great tool for searching for articles in the Health Sciences. Google is a very powerful search engine, and you can use it to find lots of good material. The problem is it’s a double edged sword. Along with the good stuff, you can also get a lot of junk in the form of bogus websites, advertisements, mindless blogs, and so on. So this tutorial is designed to show you a few tips on how to use Google to find credible sources of information. First, if you’re looking for peer-reviewed articles, I’d recommend switching from Google to Google Scholar. If you’re not familiar with it, Google Scholar is a module of Google that searches the scholarly literature and locates articles, theses, books, abstracts, court opinions, and patents, thus eliminating the junk you’d get searching in regular Google. To get to Google Scholar, simply enter the url scholar.google.com. You’ll see the landing page is similar to regular Google, but the results will be different. Let’s try the search high blood pressure diet exercise vitamin c. There is a date filter on the left side of the results page. Sometimes you are asked to only use articles from the last 5 years, or some similar date restriction.
    [Show full text]
  • April 5, 2012 Isabelle Falque-Pierrotin Presidente CNIL 8, Rue
    April 5, 2012 Isabelle Falque-Pierrotin Presidente CNIL 8, rue Vivienne 75002 Paris, FR Re: Google Dear Madame la Presidente, Thank you for your letter and questionnaire of March 16, 2012, responding to our letter to you of February 28, 2012. We are happy to provide the additional information you request. Your questionnaire is wide ranging, covering a number of technical and legal areas in detail. Only some of the 69 questions you ask relate to our new Privacy Policy changes specifically, with many of the questions exploring broader privacy matters. While we are committed to providing the CNIL and all European data protection authorities with answers to the questions asked, we will, as agreed with your staff, need slightly longer than the time you have suggested to respond. As an interim step, we attach our responses to questions 1 to 24. The rest will follow as soon as complete. In addition to our written responses, Google would, as noted in our letter of February 28, 2012, also welcome the chance to meet with the CNIL to explain and discuss Google’s approach to providing information to users. This is an important issue for us. We have taken a great deal of time and care in designing our approach. In our very first letter to the CNIL on this topic, we emphasised that while we did not feel able to pause the implementation of our Privacy Policy, we would welcome the opportunity to discuss how and where Google provides information to our users. We have reached out many times to the CNIL asking for a meeting to discuss this, and we make that offer again now.
    [Show full text]
  • Annual Report Annual 2016 2016
    2016 Annual Report 2016 G O O G L E N D S L C N V E R I L Y I A C A Y X C D D D D B A W L J Y A N E E S P A E I Z X L E W Z I Y D G C E N P A F T M U S N O D M L I A O S A E G V I K B L Z R W S O K N Y E G G W G T L B D E R 2016 Annual Report Founders’ Letter A is for Alphabet Larry Page, CEO, Alphabet Hard to believe we are about a quarter short of two years of announcing Alphabet. It’s been busy! I certainly feel Alphabet is working well, and as intended (see the original “G is for Google” announcement). At the time, I wrote that “Alphabet is about businesses prospering through strong leaders and independence.” The new structure has helped entrepreneurs build and run companies with the autonomy and speed they need. Sergey and I are working well together on the overall Alphabet direction and providing guidance to the companies. Sundar is doing great as Google CEO. It’s certainly a big job and we are very lucky to have him. He’ll probably write this letter again in the future as he has in the past, so I won’t speak too much for him on the Google related topics in this one. But, I’m excited about how he is leading the company with a focus on machine learning and AI.
    [Show full text]