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Body knowledge in bytes: the health industry gears up for the 21st century

by Paul Bentley


Article originally published in Online Currents August 2013 and reprinted with kind permission of Thomson Reuters.


Imhoptep. Image:
As you get older the thought that the years are running out creates a compelling interest in health and medical matters. Asking after the wellbeing of friends and family becomes an extended part of any conversation. Too many acquaintances disappear as their body parts give out.

As you become more dependent on health and medical services, you begin to search for more information in the books on your shelf. The copy of an old St Johns Ambulance First Aid Book, with drawings of men with moustaches and broken arms in slings, and the medical section of a forty-year old Pears Encyclopaedia now no longer offer reliable answers.

Where do you go now for information on what’s wrong with you? How is the health field responding to new ways of doing things in the 21st century? How are health industry developments affecting those who provide dedicated service in this specialised field?


We have come a long way in learning how to deal with our bodies.[i]

Medical practice is said to have begun with the Egyptian polymath, Imhoptep, who offered diagnoses and treatments for 200 diseases in 2600 BC. His capabilities as a doctor were no doubt reinforced by his other roles as Chief Carpenter, Chief Sculptor, and Maker of Vases in Chief. Two thousand years later, the Greek physician Hippocrates introduced ethics by writing the Hippocratic Oath.

As civilisation emerged from the Middle Ages, the medical profession continued to evolve.  Women began to play a more influential role in the practice of medicine because of the acuteness of their observation. Dr Mary Walker changed views about senseless limb amputations during the American Civil War. Florence Nightingale was instrumental in reforming hospitals and the training of nurses. Some who set out to become doctors turned to other professions because they couldn’t stomach some of the things they needed to do. The French composer Hector Berlioz, for example, on his first encounter at carving up a dead body as a medical student, “leapt out of the window and fled as though Death and all his hideous crew were at [his] heels.”[ii]

After the first painless surgery with general anaesthetic on a live body was performed in 1846, new medical milestones appeared at breathtaking speed. Alexander Fleming discovered penicillin in 1928. In 1967, Christiaan Barnard successfully transplanted a human heart. Louise Brown, in 1978, became the first test tube baby. We have already witnessed in quick succession during the 21st century the development of robotic surgery, face transplanting and human cloning. In 2013, the first baby in the United States was cured of HIV. There is speculation that some visits to a doctor will in future be a thing of the past because your doctor will provide advice using Skype.

Today’s health and medical industry is a complex web of forces.

According to the World Health Organisation (WHO), countries spend more than US$4 trillion on health.[iii] International health programs attempt to increase longevity, eliminate inequities and persuade citizens to look after themselves. The WHO’s Millennium Development Goals aim to reduce child and maternal mortality, improve nutrition, reduce mortality due to HIV infection, tuberculosis and malaria, and increase access to improved drinking water sources.[iv] 

There are economic conundrums. Increased spending on health by some countries has put pressure on other national government programs. However, state and local governments depend on national government support to sustain local economies. Cutting health care costs is politically difficult.[v] These pressures are evident in Australia, where healthcare expenditure reached $134 billion in 2012. It is increasing at twice the growth rate of GDP.[vi] According to IBISWorld, the sector employs almost 780,000 people (6.8% of total employment). The growth in the demand for services is a response to an ageing population, lifestyle-related diseases, a free public health system, growing household incomes and new healthcare technologies.[vii] About 70% of health expenditure is in the public sector. There is a strong emphasis on primary care through general practice, supported by Medicare.

The federal government’s attempt to implement healthcare reforms is navigating the minefields of Australia’s federated system and adversarial politics. In June 2013, a series of articles in the Sydney Morning Herald reported tensions between the public and private health systems, the games being played between federal and state governments, hospital budget pressures and four-year waiting lists for elective surgery.

There is a medical underbelly. This year, the Global Mail has been investigating the murky relation between drug companies and doctors. It reports that, in a worldwide pharmaceutical industry of $942 million, pharmaceutical companies spend around $60 million a year in Australia “educating” doctors. To work around the bans on advertising prescription medications directly to the public in Australia, the process of duchessing doctors involves “ever-so-slight culinary conflicts of interest”, free overseas trips, lucrative consultancies and speaking gigs. Many doctors admit to an obligation to return favours.

According to the medical journal The Lancet this is creating a “moral decay”. Patients may be given drugs inappropriately. Expensive drugs are given precedence over equally effective cheaper drugs. Without access to transparent information, patients do not know the extent of drug company influence. Pharmaceutical promotional activities push up health care costs.  Efforts are underway to try to limit the corrupting influence of pharmaceutical payments on prescribing patterns.

Dr Ben Goldacre, a UK epidemiologist, says there is a problem with the information architecture of evidenced-based medicine. His book Bad Science tackles misinformation about science in the media. A companion polemic Bad Pharma examines the toxic results of decades of hidden clinical trials. Although governments wrestle with vested interests to tighten up dodgy pharmaceutical marketing practices, the process gets lost in the bureaucratic labyrinth. We have our heads in the sand about fixing the problem.[viii]


As countries combat expanding costs, moving into the electronic realm is not only unavoidable, it is an imperative. People now have ready online access to general information about health and medicine. But managing the information on which the industry operates will be a major test.

Online trends

The Pew Internet Project’s reports about online health information set the scene.[ix]

Just over 80% of US adults now use the internet, 87% own a mobile phone, and 45% own smartphones. A large number of adults (70%) use doctors and other health care professionals as their primary sources of information or support. But 60% also got information or support from friends and family.

Among internet users, 72% look online for health information and 77% of these began their search using Google, Bing, Yahoo or some other search engine. Another 13% started their search on a site specialising in health information, such as WebMD. The most commonly-researched topics are specific diseases or conditions and treatments or procedures. Nearly 30% of online health seekers said they had been asked to pay for access to something they wanted to see online, but – significantly - only 2% said they did so. 

Seekers of online health information fall into a number of categories.

  • Adults with a chronic condition - 45% of US adults who have at least one chronic condition such as high blood pressure or diabetes.

  • Adults with a disability - 27% of US adults live with a disability; 42% of these look online for health information.

  • Older adults - 75% of adults are aged 65 years or older; 54% of adults in this age group use the internet; but only 12% of this group own a smartphone. Around 30% of adults in this age bracket look online for health information.

  • Caregivers - 39% of US adults provide care for a loved one. 79% of caregivers have access to the internet. Of those, 88% look online for health information.
People turn to different sources for different kinds of information. When they have technical questions, professionals hold sway. When a situation involves more personal issues – such as how to cope or get quick relief -- non-professionals are preferred. A small number of adults use technology to track their health data, such as blood pressure, blood sugar, headaches, or sleep patterns.

General reference sources

People now have ready access to general information about health matters. As the Pew Internet Project outlined, Google and other popular search engines will be the first ports of call for most. Some will turn to government sites and other portals carrying the fingerprints of authority such as Healthinsite ( Some may have subscriptions to sites and mobile apps like WebMD ( and the Australian Mydoctor ( Some will dig deeper by turning to the US National  Library of Medicine’s PubMed ( and other digital resources. High quality medical research and plain English summaries are freely available from Wiley’s The Cochrane Library ( and its iPad app.

Your national, state, university or local library may have the ALA Guide to Medical & Health Sciences Reference and other printed sources and they will facilitate access to online sources available from specialist publishers and aggregators. For example, the National Library of Australia’s e-resource collection of freely available, licensed or onsite titles includes Australasian Medical Index, Australian Institute of Health and Welfare, Australian Medical Pioneers Index, Australian Public Affairs Information – Health, Australian Sport Database Medical Subset, EBSCO’s Consumer Health Complete, Drug Database, Encyclopedia of Australian Science, Encyclopedia of Bioethics, Encyclopedia of Science and Religion, Free Medical Journals, Gale Encyclopedia of Science, HealthInsite: Health Information for Australians, Health and Society Database, Health Source Nursing Academic Edition, Health and Wellness Resource Gentre, HIV/AIDS Database, Informit e-Library: Health,, MasterFILE Premier, Medlineplus Health Information, Merck Manuals, PubMed Central, and Rural and Remote Health Database.

Sector data and patient records

Managing industry data and patient records electronically is widely seen as a solution for responding to pressing needs. Better information will help governments decide where to spend their money. Better information may help improve productivity in a sector that attracts an increasing proportion of public expenditure. Solutions will involve the application of general principles of information engineering and data management on a grand scale and addressing major impediments.

Since 2000, an increasing number of international guidelines and performance indicators have guided high level global action. In the United States, the recent release of database-generated information on charges in American hospitals revealed “an incoherent system in which prices for critical medical services vary seemingly at random -- from state to state, region to region and hospital to hospital.” Some commentators anticipate that making this information available is unlikely to bring swift and radical change to pricing, but they acknowledge that at least it is a good start.[x] A report by the Sax Institute for the NSW Mental Health Commission has found that more than $10 billion is being poured annually into mental health treatment despite an “information vacuum” about whether the treatments represent value.[xi]

Improved productivity depends to some extent on minimising errors. Most people you know will tell stories not only about the skill and dedication of health professionals, they will also complain about medical misadventures. The Institute of Medicine claims that 7,000 Americans die each year from preventable paper prescription errors.[xii] A few years ago the US Pharmacopeia MEDMARX database was found to have 176,409 medication error records, of which 25% involved some aspect of computer technology as one of the causes of the errors. A study in the Internal Medicine Journal showed that 10% of patients at Maroondah Hospital in Melbourne left hospital with the wrong diagnosis in their medical records and half of patient records were missing significant clinical information.[xiii] According to Sandra Boodman, the number of errors – through misdiagnoses, medication errors and surgery on the wrong patient or body parts – is high in America, but addressing the issue is a challenge because it is difficult for doctors to admit mistakes when their reputations are at stake.[xiv]

Costs are viewed as a major barrier to the widespread adoption of e-health systems. Even after the initial expenditure on implementation, there are ongoing maintenance and training costs. Local GPs in particular may experience difficulties in making the investment. Financial incentives are needed. Despite evidence of cost savings in some settings, doubts have been expressed about the return on investment. According to the New York Times, doctors and hospitals struggle to make new records systems workwhile major vendors of systems reap enormous rewards.[xv]

Connecting medical records involves sorting out complex privacy considerations. There have been some legitimate fears and examples of breaches of privacy and confidentiality. Some doctors have expressed concerns that increased use of electronic health records could expose them to an increased level of malpractice litigation. The US Government Accountability Office reported a few years ago that there is a "jumble of studies and vague policy statements but no overall strategy to ensure that privacy protections would be built into computer networks linking insurers, doctors, hospitals and other health care providers."[xvi] Making health information available will involve clarifying protocols for sharing data on a number of levels, from complete openness to fully controlled access.[xvii]

There have been suggestions that unintended adverse consequences have been caused by system design deficiencies. Improving the way the data is presented is seen as a major challenge. Health data standards, privacy laws, and the nature of health systems complicate the design process. In an effort to combat this problem, the US Department of Veterans Affairs recently embarked on a Health Design Challenge ( to assist in building open source design solutions for patient electronic records across the country. Suggestions are now being incorporated in Veterans Affairs hospital systems.[xviii]

The need for better information engineering comes at a time when the field of health informatics is in the formative stages of its development.  As a discipline that embraces information management, knowledge management, project management, ICT, clinical informatics, health records and other topics, the adoption of standards will be at the centre of its deliberations. Yet, according to John Kuranz and Barbara Gilles, purveyors of health systems “manoeuvre to occupy or invent the standards high ground and to capture the attention of the marketplace, but they often bring ambiguity to the discussion of process and confusion to the debate over performance.” They cite the International Statistical Classification of Diseases and Related Health Problems and the American Medical Association’s Current Medical Terminology among other language systems heavily used, but further work, they say, is needed.[xix] IT Applications in Healthcare Technology (ICS 35.240.80 IT) is one of a number of standards covering health informatics. Standards Australia has technical committees working locally on the issue.

Creating sector-wide commitment to government-led e-health systems is perhaps the major challenge. Glen Tullman, writing on the situation in the United States, says the process of getting doctors to move into the electronic realm has been arduous and there isn’t conclusive evidence that the use of electronic health records improves patient care quality. Quoting a report from President’s Council of Advisors on Science and Technology, he says the impact of IT on health care over the past decade has so far been modest. More physicians need to become part of the system. The records need to be connected to each other. And the systems that have already been installed need to work better before it will help doctors, patients and others improve health.[xx]

In Australia, a national e-health strategy, involving the development of a shared electronic health records system to address existing fragmentation, duplicate effort and data inconsistencies, is being rolled out. But the project is currently suffering from challenges around the level of computerisation, interoperability and the skills needed to make it work.[xxi] The National E-Health Transition Authority ( has been established to lead the uptake of e-health solutions and accelerate their adoption. Health Direct Australia ( has been set up to manage telephone health services, health information websites and clinical governance structures to streamline patient enquiries. The Centre for Health Record Linkage ( is indicative of efforts underway to assist in connecting researchers and policy makers to linked health data. The National Broadband Network and other technologies have the potential to revolutionise the health sector.


Libraries, archives and museums have in the past been good places for finding out what makes you tick. For more than two centuries they have rendered valuable services to the medical profession and the public at large. In the age of ubiquitous computing, how are their services being affected by online imperatives? 

International libraries, archives and museums

The largest biomedical library in the world is the National Library of Medicine in the United States (NLM, It traces its origins back to 1818, when Dr Joseph Lovell, the first Surgeon General of the Army, began building a reference collection in his office. The library flowered in the second half of the 19th century under John Shaw Billings, a surgeon who transformed himself into a librarian. The library now has numerous databases, including Medline, which is freely available on the Internet and searchable via PubMed (, other information, images and tutorials.  

The NLM works with the National Network of Libraries of Medicine to provide regional support throughout the United States. During the early 1990s, it provided funding for the Manual for Cataloguing Historical Medical Artifacts Using OCLC and the MARC Format, prepared by the Ohio Network of Medical History Collections. It hosts the History of Medicine Finding Aids Consortium, a union catalogue of primary source materials found in special collections and archives throughout the country.

Other major medical libraries and archives in the United States, include the Countway Library of Medicine ( at Harvard University and the Medical History Library at Yale University ( The US National Museum of Health and Medicine ( was founded as the Army Medical Museum in 1862 during the Civil War and has achieved accolades for its research on infectious diseases and other health problems. Its library and cataloguing system formed the basis for the National Library of Medicine and its collection today consists of about 25 million artefacts, including skeletal specimens, preserved organs, medical equipment, and historic medical documents. Other notable museums include the Mütter Museum at the College of Physicians (  and the Dittrick Museum at Case Western Reserve University in Cleveland, Ohio (

The largest medical library in Europe is the German National Library of Medicine (, which operates as the official European agent for the US National Library of Medicine. One of the oldest medical collections in Europe can be found at the Museum of History of Medicine at the University Rene Descartes, Paris.[xxii] It opened in 1954 but traces its origins back to 1769, when two rooms were devoted to “ancient collections” at the Academy and College of Surgery. A new book on medical museumsexplores the collections of 15 leading museums in Europe and the United States.[xxiii] And a list of London health and medical museums and archives can be found at

Recent exhibitions in London have drawn attention to the value of museums as places of education and research. The popularity of the exhibition, Death: A Self-Portrait, presented by the Welcome Collection ( stimulated plans for a £17 million expansion. At the Museum of London Archaeology, the exhibition Doctors, Dissection and Resurrection Men explored scientific endeavours in the search for knowledge about anatomy in the 19th century and lifted the lid on the associated shadowy trade of bodysnatching. Old bodies excited the public imagination when the bones of Richard III were dug up from a Leicester council car park and the British Museum presented one of its oldest mummies, the Gebelein Man, on a digital autopsy table.

The interests of libraries, archives and museums are served by a large number of professional associations and networks. Prominent among these is the Medical Library Association (, with more than 4,000 members and partners worldwide. Other groups of librarians include the Biomedical and Life Science Division and Pharmaceutical and Health Technology Division of the Special Libraries Association (, Archivists and Libraries in the History of Health Sciences (, the Science, Technology and Health Care Roundtable of the Society of American Archivists (, and the Canadian Health Libraries Association (

Among European bodies are the Health Libraries Group of the Chartered Institute of Libraries and Information Professionals,[xxiv] a library group associated with the National Health Service in the England (, the German Association for Medical Librarianship (AGMB) ( and the Medical Museums Association

International bodies include the International Federation of Library Associations’ Health and Biosciences Libraries Section (, the European Association for Health Information and Libraries (, and  the European Association of Museums of the History of Medical Sciences (

Allied health and medical information groups overseas include the International Medical Informatics Association (, the Healthcare Information and Management Systems Society (, the American Society of Health Informatics Managers (, and the American Health Information Management Association (

Australian libraries, archives and museums

Professional bodies in Australia have recently explored issues facing their members. Health Libraries Inc (, in partnership with the Australian Library and Information Association, has published Questions of Life and Death, a report on the value of health library and information services in Australia. It reports that, despite a significant increase in users and high levels of satisfaction in services, the budgets of services, their staffing levels and floor areas have declined. Reductions in staff hours have had a detrimental effect on services. There is uncertainty about the future.[xxv]

ALIA’s own group, Health Libraries Australia (, has published Health Librarianship Workforce and Education: Research to Plan the Future, drawing on similar reports on the changing circumstances of health librarians overseas, to describe the situation here. The expectations and habits of consumers of health information have changed. Traditional library work is diminishing. Professional boundaries are blurring. Emerging areas of work are being claimed by other professional groups.[xxvi] Health Libraries Australia is developing a framework of competency-based standards in the quest for continued credibility.

Allied professional groups include the Chief Health Librarians Forum Australia (, Health Informatics Society of Australia (, Health Information Management Association of Australia (, Australian and New Zealand Society of the History of Medicine (, the Asia Pacific Association for Medical Informatics (, and the Australasian College of Health Informatics ( It has proved difficult to sustain a viable professional association in the museum sector after the Health and Medicine Museums group within Museums Australia folded up in 2006.

Health Libraries Australia, based on listings in the Australian Libraries Gateway, has estimated that there are 427 health and medical libraries in Australia. They include facilities in hospitals, universities, research institutes, pharmaceutical companies, government departments, regional health services, professional colleges, not-for-profit and community organisations, and parts of public library services. The Guide to Health and Medicine Collections, Museums and Archives in Australia, published by Museum Australia’s Health and Medicine Museums division in 1999, listed 185 specialist collections and  more than 200 other collections with  health and medical material.

Australian health and medical museums were recently explored in Museums Australia Magazine.[xxvii] Their rich variety are exemplified in the Medical Heritage Trail at the University of Sydney, where 19 museums, buildings, libraries, monuments and artworks are located on campus, including the Pathology Museum’s Interactive Centre for Human Diseases ( At Museums Australia’s national conference in May 2013, Jacqueline Healy outlined exciting building plans and collection management strategies that tie together a number of notable collections managed by the University of Melbourne (

Museum, library and archival services in hospitals include the Royal Prince Alfred Hospital ( and Sydney Hospital, the oldest in Australia, where the Lucy Osborn-Nightingale Museum, operating with volunteers, has a morbid anatomy collection and historical material.

Collections and services that have been developed by professional bodies include the Harry Daley Museum and the Richard Bailey Library of the Australian Society of Anaesthetists in Edgecliff, Sydney (, and its counterpart in Melbourne, the Geoffrey Kaye Museum of Anaesthetic History at the Australian and New Zealand College of Anaesthetics ( ). The Royal Australian College of Physicians’ History of Medicine Library, with approximately 40,000 items and a collection of antique medical instruments (, is promoted as Australia's most significant collection of medical history.

Substantial collections of diverse material are also found in national and state institutions, For example, Museum Victoria ( has general medical and surgical equipment used by Sir Edward "Weary" Dunlop, research equipment and medicinal samples from the Commonwealth Serum Laboratories, 1918-1984, and other formed collections of Melbourne medical and dental practices. The National Museum of Australia (http://www/ has Fred Hollows’ personal collection and objects from his trachoma program, as well as Australian Institute of Anatomy collections, comprising Aboriginal human ancestral remains once housed in the building that is now home to the National Film and Sound Archives. Asylum patient records and other documentation are held by State Records NSW.[xxviii]

Pulling data together to make the richness of these collections more accessible has some way to travel. Research Data Australia (RDA, lists nearly 800 data sets and collections in the area of health and medical science. Trove (, already populated with relevant information from RDA, libraries and commercial databases, is keen to improve its coverage and welcomes discussions about exposing specialist collections to the national discovery service.

As reported in Online Currents in 2012, the National Broadband Network has led to regional digital hubs that offer potential for new relationships between local libraries and health services.[xxix]


Medicine is a speculative art that relies on scientific information. Good health and the mitigation of diseases are in the hands of patients as well as doctors. Some doctors think patients are an essential member of the clinical care team.[xxx] The decision by Hollywood star Angelina Jolie illustrates the point. In deciding to have a double mastectomy to minimise the risk of future cancer evident in her family history, she underscored the need for clear information, good communication, shared responsibility and a dose of courage.

Governments around the world have initiated e-health strategies to help doctors to diagnose ailments and give patients a better understanding of what’s going on with their bodies. There have been teething problems in implementing e-health systems and there are barriers that need to be overcome to sort out underlying problems.

Those working in libraries, archives and museums in the health and medical field, like their colleagues in other fields, face ongoing challenges. Myriad professional groups search for greater unity of purpose. In a world where the services of intermediaries are being reshaped, there are fresh opportunities for those involved in constructing systems and services that lead governments, doctors and patients to online resources.


Bronia Renison, Director Library Services, Townsville Health Library, provided a number of useful suggestions on sources and style.

[i] Medical history sources include: Pickover CA, The Medical Book: From Witch doctors to Robot Surgeons - 250 Milestones in the History of Medicine (NY: Sterling Pub, c2012) and “Timeline of Medicine and Medical Technology”, Wikipedia,

[ii] Fitzharris L, “Mangling the Dead: Dissection, Past and Present,” The Lancet, 12 January 2012.

[iii] World Health Organisation. Spending on Health: a Global Overview,

[iv] World Health Organisation, World Health Report 2000 - Health Systems: Improving Performance, 2000.

[vi] “Budget Threat to Aussie eHealth Revolution” Image and Data Manager, 30 April 2013

[viii] The Global Mail series Drug Money, February-July 2013

[ix] Fox S,. Highlights of the Pew Internet Project’s Research Relating to Health and Health Care, 23 April 2013

[x] Young J and Kirkham C, “Hospital Prices No Longer Secret As New Data Reveals Bewildering System, Staggering Cost Differences” Huffington Post 8 May 2013

[xi] Corderoy A, “Assessment of Mental Heath Treatment Hurt by Lack of Data”, Sydney Morning Herald, 13 June 2013

[xiii] Medew J, “Patients Urged to Check Medical Records After Errors Havoc”, The Age, 1 February 2013

[xiv] Boodman S G, “Doctors’ Diagnostic Errors Are Often Not Mentioned But Can Take A Serious Toll”, Kaiser Health News, 6 May 2013

[xv] Creswell J, “Digital Shift on Health Data Swells Profits in an Industry”, New York Times, 19 February 2013 .

[xvii] Speyer, “Open Data and the Four Tiers of Health Data”, Health Data Innovation, 23 February 2013

[xviii] Flaherty J, “How Restyling the Mundane Medical Record Could Improve Health Care” Wired, 18 January 2013; “The White House Reveals a Redesigned Electronic Medical Record”,; and Olanoff D, “Share Practice Aims To Give Doctors Treatment Information And Feedback From Colleagues On The Fly”, Techcrunch 29 April 2013

[xix] Kuranz J and Gilles B, “Indexing Electronic Medical Records Using a Taxonomy”, ASIST Bulletin December 2012/January 2013

[xx] Tullman G, “Why Haven’t Electronic Records Made Us Healthier”, Forbes, 4 March 2013,

[xxi] “Budget Threat to Aussie eHealth Revolution”, Image and Data Manager, 30 April 2013

[xxiii] Medical Museums: Past, Present, Future; edited by S J M M Alberti and E Hallam, The Royal College of Surgeons of England, 2013

[xxv] Health Libraries Inc. Questions of Life and Death: An Investigation Into the Value of Health Library and Information Services in Australia, 2012

[xxvi] ALIA. Health Libraries Australia. Health Librarianship Workforce and Education: Research to Plan the future. Final Report, May 2011,

[xxvii] Bentley P, “Australia’s First Hospital and the Landscape of Health and Medical Museums Today.” (2012) vol 21 no 2 Museums Australia Magazine: 34-36

[xxix] Bentley P, “Reinventing Libraries for the Mobile Flaneurs: The Odyssey Continues” (2012) 26 OLC 295

[xxx] Gray, JAM. The Resourceful Patient (eRosetta Press, Oxford 2002

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