Delivery and Exchange of Information: Consumers, Managers and Administrators

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Contents

Learning Objectives

  • With completion of this section it is intended that the student will have a high level understanding of the ways health information can be accessed and more importantly exchanged, shared and used between other actors within the health system. The student will also have an appreciation of how an appropriate enabling infrastructure can be developed, sustained and governed.
  • If there is a key piece of information that should follow from reviewing this section it is that there are a large number of information flows of both clinical and non-clinical data within the health system and that many of these are not all that obvious. There are clearly issues of security and privacy that may be relevant depending on the information involved.
  • The last couple of areas discussed concern how the information flows both in the last and this section and managed and regulated and how we co-ordination and progress can hopefully be achieved. The complexities of a Federal / State system in Australia, the mixed private / public nature of the system and the number of stakeholders involved can make the overall governance of things quite challenging - to say the least.

Data Mining / Big Data In the Health Sector

  • To start a few observations to set the scene. First is the observation to digital information of all sorts is piling up and truly astonishing rates, with the amount of digital data being created and stored rising at exponential levels. Second the scope of the information that is being digitised is widening dramatically. Years ago most information had to be entered manually, but increasingly we are seeing automatic capture from sensors (think everything from mobile phones to the various scanners used in diagnostic imaging). Third there has been a dramatic improvement in the technologies that permit exploitation of very large data collections and lastly there is has been a recognition in the last few years that there can be great value in linking apparently unrelated data sets and that interesting meaning can be derived from doing so.
  • A very useful summary article that moves the broad discussion down to the health sector appeared in 2012.
  • Big data: opportunity and challenge

Posted on Jun 12, 2012 By Dan Riskin, Health Fidelity CEO Over the past two decades, America has experienced a societal revolution led by the Internet and the availability of “big data,” – defined by the Wall Street Journal as “the ability to collect, process and interpret massive amounts of information.” Although big data has transformed modern culture, massive information sharing and analysis has yet to generate significant benefits within healthcare. The promise of big data in healthcare is revolutionary. Use of big data will ease the transition to authentic data-driven healthcare, allowing healthcare professionals to improve the standard of care based on millions of cases, define needs for subpopulations, and identify and intervene for population groups at risk for poor outcomes. To date, few healthcare professionals would claim that the promise of big data has been fulfilled. To understand the growth and usage of big data, it makes sense to look at an industry with advanced use of big data: consumer information technology.

  • Big data in consumer IT

Consumer IT uses big data daily. Accessing the Internet via Google or reaching out to friends via Facebook relies on the massive collection and transformation of information. How did consumer IT gain the ability to deliver massive value from massive data? Three trends supported this transformation. 1. Data availability: Information availability grew in the 1990s as the Internet offered a source of content with formalized protocols and broad access. 2. Metadata and grouping: Collecting the information wasn’t enough; applications had to understand the information. Information coding and grouping accelerated in the 2000s thanks to algorithms and systems that incorporated keyword matching, social grouping, natural language processing (NLP) and search algorithms. Simple text became marked up content, indexed and annotated for use. 3. Applications to leverage big data: Once information was available and annotated, companies like Google, Facebook and LinkedIn capitalized on a wealth of usable data and enabling technologies to meet consumers’ emerging information needs.

  • Big data in healthcare

If consumer IT accomplished so much over the last two decades, can healthcare derive similar high value from its big data? Given the high stakes and serious concerns, the answer in the short term is “maybe.” Industry commitment is shaped by multiple concerns, including data security, de-identification, patient versus societal benefit, stakeholder profits and political swings. To balance these concerns and questions, healthcare professionals must understand their position in the trends of enabling big data usage. 1. Data availability: The goal is to make identified information available for care and de-identified information available for system improvement, but healthcare data rarely crosses institutional boundaries. Information hoarding, political conflict and lack of interoperability make even the most limited HIE initiatives a challenge. The challenges of detailed data sharing are laid out in “Sharing Data Electronically” in the April 25, 2012, issue of the Journal of the American Medical Association (JAMA). 2. Metadata and grouping: Information without structure is useless. While an individual physician might be able to read narrative text within an EMR, analytics applications cannot utilize unstructured data. Most industries produce and store roughly 80 percent of their data in unstructured form, according to the “80 percent rule” articulated by Merrill Lynch in the 1990s. Although Google helps solve this problem for consumers, clinical data, as captured in narrative notes, is most often stored as simple text within siloed medical records. The large majority of analytics is built solely off claims or administrative data, creating major limitations, according to “Finding Pure and Simple Truths with Administrative Data,” an editorial in the Journal of the American Medical Association. That problem must be solved to support big data in healthcare. 3. Applications to leverage big data: When access and metadata are addressed, healthcare must still address the challenge of modernizing application infrastructure. In other industries, applications are built as components, allowing the best components to be reused, improved, and scale. In healthcare, applications tend to be built vertically, starting from source data and recreating extraction, data mining, and user interface techniques in custom solutions. Unfortunately, constantly creating end-to-end software from scratch limits innovation, undermines application power, increases expense, and it fails to allow for the low cost, rapidly built, powerful applications seen in other industries. Despite healthcare’s limitations in dealing with data, the industry’s outlook on data is getting brighter. The full article is found here

  • There is a great deal more information found in three other key references.
  • First we have:

The promise of big data Petabytes of raw information could provide clues for everything from preventing TB to shrinking health care costs—if we can figure out how to use them. Harvard School of Public Health microbiologist Sarah Fortune went to Camden, Maine in late 2010 to attend a small but widely revered conference on innovation called PopTech. Fortune had for more than a decade been trying to crack one of the tuberculosis bacterium’s most infuriating characteristics: its rising resistance to antibiotic drugs. Standing on the Camden Opera House stage, backlit by mammoth close-ups of fluorescent cells, Fortune shared with her fellow PopTech attendees TB’s grim annual statistics: 2 billion people—nearly one-third of the world’s population—are latent carriers. Every year, 15 million become sick and 1.4 million die. Unlike most bacteria, TB cells do not replicate as carbon copies but in random patterns, she told the audience. TB cells behave more like snowflakes than Xeroxes. Fortune believes it is this variety that gives TB its extraordinary ability to defy conventional antibiotics. Using silicon chips and a special camera, Fortune, the Melvin J. and Geraldine L. Glimcher Assistant Professor of Immunology and Infectious Diseases, and her fellow researchers had developed a way to capture 10,000 still images of this telltale growth every few days—exponentially more data than they had only a few years ago. The images are combined like old-fashioned flip books into what Fortune calls “movies.” But only the human eye can assess the moving pictures, one by one—a method so laborious that it inhibits scientific progress. The question troubling Fortune, and what had brought her to the conference, was the following: How could her lab swiftly analyze this unprecedented treasure trove? The new data could be a gold mine—one that could yield fundamental insights about potential diagnostic tools, treatments, even a vaccine—but not without ways to speed up analysis. Fortune needed help. There is much more here with a link to a .pdf of the full article at the bottom of the text.

  • Secondly there has been a recent McKinsey Consulting Report on the topic.

The big-data revolution in US health care: Accelerating value and innovation Big data could transform the health-care sector, but the industry must undergo fundamental changes before stakeholders can capture its full value. April 2013 | byBasel Kayyali, David Knott, and Steve Van Kuiken The article and an useful explanatory video are found here Download the full report, The ‘big data’ revolution in healthcare: Accelerating value and innovation (PDF–1.4MB) from this link (Free registration may be required).

  • Lastly there is a useful applied article that explains the potential.

6 Big Data Analytics Use Cases for Healthcare IT – Brian Eastwood, CIO April 23, 2013 BOSTON—The increasing digitization of healthcare data means that organizations often add terabytes' worth of patient records to data centers annually. At the moment, much of that unstructured data sits unused, having been retained largely (if not solely) for regulatory purposes. However, as speakers at the inaugural Medical Informatics World conference suggest, a little bit of data analytics know-how can go a long way. The article is found here Reading these resources will provide a good understanding of just how exciting and dynamic this area is and how over time it seems very likely to make a major positive difference to the way we deliver healthcare. All healthcare managers need to be aware of the possibilities this raises.

Last two very recently articles from the Wall St Journal have really shown the scale of the possible benefits. See here: [1] and here: [2] Must read material. The obvious concern is just how hard capturing these major advances will be for Australian organisations that do not have such well-developed IT infrastructure.

Population Health Monitoring and Surveillance / Epidemic Detection

  • Crucial to the operation of all health systems is the ability to monitor the overall health of a population and to be able to alert policy makers when changes are emerging and also to be able to respond to such changes as appropriate. Traditionally this surveillance / monitoring function was carried out by laborious case-finding by public health units and by the monitoring of activity in hospitals and often a number of sentinel primary care practices. Additionally there was also patient discharge and death information which was gathered and analysed.
  • Clearly the important critical first step is surveillance as all action that might be taken flows from detection of the problem
  • The following abstract positions things very well:

Scientifica Volume 2012 (2012), Article ID 875253, 26 pages Review Article The Past, Present, and Future of Public Health Surveillance Bernard C. K. Choi Abstract This paper provides a review of the past, present, and future of public health surveillance—the ongoing systematic collection, analysis, interpretation, and dissemination of health data for the planning, implementation, and evaluation of public health action. Public health surveillance dates back to the first recorded epidemic in 3180 B.C. in Egypt. Hippocrates (460 B.C.–370 B.C.) coined the terms endemic and epidemic, John Graunt (1620–1674) introduced systematic data analysis, Samuel Pepys (1633–1703) started epidemic field investigation, William Farr (1807–1883) founded the modern concept of surveillance, John Snow (1813–1858) linked data to intervention, and Alexander Langmuir (1910–1993) gave the first comprehensive definition of surveillance. Current theories, principles, and practice of public health surveillance are summarized. A number of surveillance dichotomies, such as epidemiologic surveillance versus public health surveillance, are described. Some future scenarios are presented, while current activities that can affect the future are summarized: exploring new frontiers; enhancing computer technology; improving epidemic investigations; improving data collection, analysis, dissemination, and use; building on lessons from the past; building capacity; enhancing global surveillance. It is concluded that learning from the past, reflecting on the present, and planning for the future can further enhance public health surveillance.

  • Here is the link to the full paper:
  • It is very important to note just how much of the future approach to surveillance will be based on electronic means.

Innovations that have appeared of recent times include the use of analysis to electronic health care records in real time for epidemic detection, the use of geographically located counts of Google searches for flu symptoms to identify and track flu outbreaks as well as the use of secure electronic messaging to report real time laboratory identification of notifiable diseases.

  • It is important to realise just how many threats are out there. This from the conclusion of the paper cited above makes the point dramatically.

“5. Conclusion Emerging infectious diseases, such as human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS), severe acute respiratory syndrome (SARS), and pandemic influenza, and emerging chronic conditions, such as the global obesity epidemic, have demonstrated that we remain vulnerable to health threats . The importance of strengthening public health surveillance to provide early warning and develop actions has been a primary focus in public health. However, despite improvements in the past decades, public health surveillance capabilities remain limited and fragmented, with uneven global coverage.”

  • The full potential scope of Public Health Informatics is made clear in the following list.

“The informatics perspective can provide insights and opportunities to improve each of the seven ongoing elements of any public health surveillance system. *Examples include the following:

    • Planning and system design – Identifying information and sources that best address a surveillance goal; identifying who will access information, by what methods and under what conditions; and improving analysis or action by improving the surveillance system interaction with other information systems.
    • Data collection – Identifying potential bias associated with different collection methods (e.g., telephone use or cultural attitudes toward technology); identifying appropriate use of structured data compared with free text, most useful vocabulary, and data standards; and recommending technologies (e.g., global positioning systems and radio-frequency identification) to support easier, faster, and higher-quality data entry in the field.
    • Data management and collation – Identifying ways to share data across different computing/technology platforms; linking new data with data from legacy systems; and identifying and remedying data-quality problems while ensuring data privacy and security.
    • Analysis – Identifying appropriate statistical and visualization applications; generating algorithms to alert users to aberrations in health events; and leveraging high-performance computational resources for large data sets or complex analyses.
    • Interpretation – Determining usefulness of comparing information from one surveillance program with other data sets (related by time, place, person, or condition) for new perspectives and combining data of other sources and quality to provide a context for interpretation.
    • Dissemination – Recommending appropriate displays of information for users and the best methods to reach the intended audience; facilitating information finding; and identifying benefits for data providers.
    • Application to public health programs – Assessing the utility of having surveillance data directly flow into information systems that support public health interventions and information elements or standards that facilitate this linkage of surveillance to action and improving access to and use of information produced by a surveillance system for workers in the field and health-care providers.
  • The evolving field of surveillance informatics presents both challenges and opportunities. The challenges include finding efficient and effective ways of combining multiple sources of complex data and information into meaningful and actionable knowledge (e.g., for situational awareness). As these challenges are met, opportunities will arise for faster, better, and lower cost surveillance and interpretation of health events and trends. The domain of public health informatics designs and evaluates methods appropriate for this complex environment. “

Source: The Role of Public Health Informatics in Enhancing Public Health Surveillance July 27, 2012 / 61(03);20-24 Thomas G. Savel, MD ; Seth Foldy, MD Public Health Surveillance and Informatics Program Office (proposed), CDC here It seems very clear that in time the use of the approaches outlined here will only increase as will the use of data analysis and modelling to assist the public health practitioner with their policy, preventative and management interventions.

Consumer Information Access and Use (Portals etc.)

In this topic there are two aspects worth discussion.

Use of the Internet to access information on health conditions by patients / consumers

The Internet is widely used by consumers to access health information. This is made clear in the following relatively recent article from The Conversation.

  • Don’t rely on Dr Google for health information on the wild, wild web, Rachael Dunlop

If you typed “pins and needles” into Google, what kind of results would you expect to find? According to a recent study from Bupa Health, the search engine could diagnose you with anything from a completely reversible vitamin B12 deficiency, to sciatica, or worse, multiple sclerosis. Entering “stomach cramps” into Google returns indigestion, appendicitis, or something as serious as heart disease or angina. Even a condition as benign as a rash comes up with dermatitis, psoriasis, eczema, or much more serious diseases such as meningitis. No wonder there’s a dedicated term to describe patients who develop paranoia from googling their symptoms – cyberchondria.

  • The most recent statistics about Australians' computer use shows around 80% of us now have access to the internet at home and the use of mobile devices is on the rise, thus nearly all of us can access the world-wide-web 24/7. Google is the search engine of choice for 93% of us, so when it comes to sourcing information about our health and medications, Dr Google seems an obvious place to go.
  • The Bupa study also revealed that: approximately a third (34%) of us would like to have the ability to text an image of our problem to receive a diagnosis; 45% would like to have access to our doctor by email; half of us self-diagnose; and 70% research our medications online. But while there is a plethora of information available online, it remains largely unregulated.

The full article is here

  • Following this introduction the article goes on to discuss the dangers of the use of ‘Dr Google’ and identifies a range of trustworthy Australian health information sites aimed at consumers.

The US Food and Drug Administration also provides a good approach to sorting the true from the false.

  • A Quick Checklist

You can use the following checklist to help make sure that the health information you are reading online can be trusted. • Can you easily see who sponsors the Web site? • Is the sponsor a government agency, a medical school, or a reliable health-related organization, or is it related to one of these? • Is there contact information? • Can you tell when the information was written? • Is your privacy protected? • Does the Web site make claims that seem too good to be true? Are quick, miraculous cures promised? The full site is here: http://www.fda.gov/Drugs/ResourcesForYou/Consumers/BuyingUsingMedicineSafely/BuyingMedicinesOvertheInternet/ucm202863.htm

  • There are some interesting usage statistics from the US which confirm the level of usage.

Health Online 2013, by Susannah Fox, Maeve Duggan, Jan 15, 2013

    • Overview

81% of U.S. adults use the internet and 59% say they have looked online for health information in the past year. 35% of U.S. adults say they have gone online specifically to try to figure out what medical condition they or someone else might have. Online resources join the stream of information flowing in from people's interactions with clinicians, family, and fellow patients. When respondents were asked about the last time they had a serious health issue and to whom they turned for help, either online or offline: - 70% of U.S. adults got information, care, or support from a doctor or other health care professional. - 60% got information or support from friends and family. - 24% got information or support from others who have the same health condition.

  • This report also updates the Pew Internet Project's trends related to the social life of health information and peer-to-peer health care.

The full research is here

  • In summary many consumers use the internet to search for health information, there is a high risk of them being misled and all should be encouraged to discuss their findings from the Internet with an appropriate health professional if they are concerned.

Access to individual information

In both the UK and the US (it is a requirement under ‘Meaningful Use’ stage 2) there are increasing pressures emerging from Governments for patients to be given easy access to their individual health records as held by their primary care clinician on the belief that access to this information will improve a patient’s involvement in their care with the goal of making them a better educated and responsible patient and that this will lead to better clinical and financial outcomes over time.

  • As far as I can discover the evidence to support this line of reasoning is by no means certain. The following summarises the present state of play.

The Value of Personal Health Records and Web Portals to Engage Consumers and Improve Quality, LESSONS LEARNED, July 2012

  • Overall the conclusion would seem to be the evidence is that such strategies are all that successful, except with patients who are already highly engaged with their care, is pretty scant.
  • In Australia we have, of course the Personally Controlled Electronic Health Record (PCEHR) system which can be used by consumers to record their health information and also have clinician curated health summary records.

As of the time of writing (October 2013) the fate of this system is under review by a new incoming Federal Government. It is certain that some 16 months after initial implementation of the PCEHR there is no real evidence of value having been derived from the system. The following section reviews Personal Health Record portals and identifies the factors that have made some of them quite successful.

Personal Health Records

  • In essence the concept of a Personal Health Record (PHR) is a repository where the patient can store relevant personal health information to act as a help in managing their care. (Before the Internet, and even since, many patients kept their own notes of things that happened to them, diagnoses and so on as an aide-memoir when visiting their doctor.)
  • There are three types of PHRs recognised.

Here is how the Robert Wood Johnson Foundation defines and categorises them (see report cited above): Personal Health Record—a comprehensive health record where information within it (from EHRs, pharmacies, patient-entered data, etc.) is controlled by the patient; broadly, PHRs come in three forms:

    • free-standing—wholly owned by the patient and typically hosted on an Internet-based platform, it is not officially associated with any other record
    • tethered—a PHR that is hosted by one’s health care provider and linked to his or her EHR
    • sponsored—a PHR that is provided by a patient’s employer or health insurance plan and generally populated with information based upon claims data
  • The PCEHR could be seen as a sort of hybrid PHR as it uses Government payment information, and is essentially part of the Federal Government.
  • For PHRs to be of any real value they need to be used and maintained by the patient and for this to happen there needs to be real value provided by the system to the individual user. To date to achieve significant adoption and use with free-standing PHRs has not been at all easy. However quite the reverse has been observed in with tethered systems where the PHR functionality is augmented by a variety in interactive opportunities for the patient.
  • Most consumer value seems to be placed on the following additional functions.
    • 1. Secure e-mail contact with their primary care provider.
    • 2. Repeat prescription ordering.
    • 3. Access to diagnostic test results
    • 4. Appointment making
    • 5. Provision of a downloadable Health Summary - Blue Button (You can read about the Blue Button from this link
  • A combination of this function points and a well-designed and easy to use system accessible via a secure Internet Portal appears to be a winning combination. This is evidenced by the experience of Kaiser Permanente in the US where such a system has achieved utilisation by 60+ per cent of eligible individuals within their care environment. (Some 3+ million active uses of KP Connect as it is known are now users and rising)
  • Disappointingly the design of the Australian PCEHR makes most of this functionality very hard to implement.
  • The latest figures that are to hand for the PCHER are as follows:

The Week in Brief - With AIIA CEO Suzanne Campbell, 25th October, 2013

  • Personally Controlled Electronic Health Record (PCEHR) – this week a status update has been provided to the PCEHR Independent Advisory Council (IAC) confirming:
    • 3,500 new consumer registrations per day, with over 1 million people now registered
    • 5,582 healthcare provider organisations and 8,016 individual healthcare providers are now registered
    • 9,300 shared health summaries and over 2,000 discharge summaries are now recorded
    • 27,500 consumer entered health summaries, approximately 8,600 consumer entered notes and approximately 3,900 advance care directive custodian notices are now held
  • This is found here
  • Comments - It is important to note that at the time of writing, 16 months after go live, we have only 0.04% of the population with a record for a cost of roughly $100 each. Hardly a raving great or cheap success just yet.
  • The really telling statistic is that only 27,000 of the 1 million who have registered have actually added their own summary. The fact, at present, is the system is a hardly used white elephant.
  • Intuitively it seems obvious that such records should be very useful, especially in individuals with long complex medical histories or individuals who are travelling away from home etc. but to date clear evidence of that value has been hard to evince. Maybe over the next few years things will become clearer.

Research

  • A critical benefit that is perceived to flow from the digitisation of health information is the possibility that such information can be used to assist both with clinical research as well as the management, supervision and assessment of the way various areas of the system are performing.
  • There are two very well-known poster children for the use of technology to support these dual objectives.
    • First there is the Kaiser Permanente (KP) Health System which is based in California and which overall provides integrated care to well over 10 million people and has very advanced clinical and administrative systems. Internally KP has a well-developed clinical research capability which can exploit the longitudinal individual patient information they hold to assess, for example, the impact of new medicines on patient health and to provide early warning of side effects.

This extract from the history of the KP Division of Research really says it all. “The automated multiphasic health testing (AMHT) led to the creation of electronic patient medical records. In the late 1960s, the Division of Research’s Edmund (Ted) van Brunt, MD, (who later succeeded Collen as Division of Research director) piloted a computer-based patient medical record system with a database that supported both patient care and health services research. By 1973, a computer medical record existed for all health plan members. Those earliest records are still used in research today and they allowed the Division of Research to develop a data-based research agenda. For the first time, researchers could use computer-generated data to test their hypotheses, whether they were interested in adverse drug reactions, the efficacy of a medical treatment or other aspects of medical care. Today, the division’s rich clinical databases are unequalled and allow for population-based studies that cannot be done anyplace else in the world.” See their web-site for current information.

    • Second there is the Intermountain Healthcare which has established a global reputation for clinical quality improvement based on, among other things, comprehensive EHR systems.

Their website is found here

  • Others have, of course, gone down similar paths (Mayo Clinic and the Boston Hospitals) spring to mind as other exemplars of the approach above.

Another route, which provides equally powerful and useful clinical information is what is being done in the UK and to a lesser extent in Australia.

  • In the UK anonymised information from EMIS practice management systems is being extracted and used for some very valuable research and additionally for real time surveillance of patient population health.
  • Here is a brief description of what is being done - note the scale covering approximately 20 million people.
    • “QResearch® is one of the world’s largest GP research databases. It extracts anonymised patient data from contributing EMIS LV practices, and includes historical data stretching back more than 20 years.

The not for profit project was set up by EMIS and the University of Nottingham in 2002 with the aim of collecting rich primary care data for medical research projects that test or generate hypotheses, and which lead to new knowledge capable of publication in peer reviewed academic journals. All research arising from the database is made publicly available for maximum public benefit. This research is directly improving UK patient care and outcomes. Individual patients can opt out.

    • QSurveillance® is a near real-time data surveillance system that collects, analyses and reports on data daily from approximately 3,000 contributing EMIS LV practices, covering a population of more than 20 million patients.

It reports on a range of conditions such as infectious diseases, chronic diseases, vaccine uptake including flu, pneumococcal and MMR, as well as incidents that may have an adverse effect on health, such as the number of respiratory-related illnesses after a chemical fire.”

  • More information is available here
  • There is a similar project run by HCN for users of the Medical Director Practice Management Software in Australia.
  • Another valuable source of information for both administrative and clinical purposes are the databases held by governments where payments are made in fee for service environments. Both Australia (Medicare and the PBS) and the US (Medicare and Medicaid) have huge payment databases that contain significant coded clinical information which can be usefully mined - with the appropriate privacy and security controls - to undertake a great deal of valuable research.
  • The capabilities discussed here, if exploited appropriately, can be of enormous clinical and management benefit.

Standards and Standards Setting

  • A key requirement for successful deployment and use of Health Information Technology (HIT) is to have a set of agreed Standards which all actors within the health sector implement and use.
  • The purpose of HIT Standards is to enable electronic information flows within the health system and to have a range of developers of HIT systems to successfully transfer information between systems which is properly useable by the receiving system. Additionally Standards seek to ensure information integrity over time as well as reduce costs of data / information conversion as well as rework and redesign.
  • It goes without saying that the HIT Standards development and maintenance effort and processes are a minute part of the national and international Standardisation effort which covers everything by building standards to electrical safety and so on. Many finally approved and published Standards related to areas when human safety is potentially at risk are incorporated into legislation and compliance is not voluntary (e.g. many building standards, food safety standards, electrical standards etc.)
  • To achieve the desired outcomes in HIT there need to a range of different types of Standards as not only is it desired to enable information flows but also to enable effective and safe (i.e. unambiguous and trustworthy) use of the information at both ends of an information flow. It is also important that in any communication both parties know things like the source of the information and whether it has actually reached the receiving computer intact etc.
  • To this end in the broadest of terms Standards are needed that.
    • 1. Define the meaning and possible content of each information element.
    • 2. Define the coding that may be used in each element and what each code means.
    • 3. Define how each data element can be assembled into a partial or complete element of a useful record.
    • 4. Define how a set of elements can then be transferred securely to another system and then utilised and acknowledged.
  • To appreciate the range of Standards used in Australia at present the reader should visit the following website, the home for the Standards Australia IT-14 Committee which has responsibility for Health IT.
  • The scope of the work addressed is as follows.

IT-014 Subject Areas

  • Health Concept Representation
  • Information Security
  • Messaging and Communication
    • Patient Administration Messaging
    • Prescription Messaging
    • Diagnostic Messaging
    • Collaborative Care Communications
  • Electronic Health Records Interoperability
  • Telehealth
  • Clinical Decision Support

Each link above points to a short description of the area addressed by the Standards and in the publications section from the home page it is possible to review all the currently active Standards, Technical Bulletins and Technical Reports.

  • Australian Standards are all developed by specialist committees of volunteers who have specific skills related to the scope being addressed.

In addition to work undertaken in Australia many Australian experts contribute to two international HIT standards groups. First is the International Standards Organisation’s Technical Committee Number 215 (ISO/TC 215) and the second is HL7. There is coverage of this work here In summary it is as follows - from the web-site above.

  • International Engagement and Participation

Standards Australia is the Australian member of the International Organization for Standardization (ISO), the International Electrotechnical Commission (IEC), and the Pacific Area Standards Congress (PASC). It also supports the Australian Government through the Asia-Pacific Economic Co-operation (APEC), Sub-Committee on Standards and Conformance. To the maximum extent possible, Standards Australia seeks to align our Standards with relevant international Standards. The ISO defines the processes by which Standards are seen to be needed, are worked on and then consulted on widely so when finalised they are as technically as sound as possible, as well thought through as possible, will have a positive effect on the discipline and are as reflective of the international Standards as is possible. (In passing it is important to note that the number of acronyms and the level of jargon that seems to be created by all committees of this sort is really a worry has it has the effect of intimidating anyone who may want to get involved in these processes.)

  • Overall standardisation is an important aspect of Health IT and is an absolutely fundamental requirement if a properly joined up and clinically useful e-Health ecosystem is to emerge and be sustainable.

Note: The HIT Standards area is addressed in considerable detail in Chapter 9 of the recommended textbook.

Governance and Leadership

  • Australia has a complex health system with a complex mix of stakeholders including Federal and State Governments, private and public hospitals, practitioners and the various technology providers to the health sector. This mix of stakeholders means that centralised direction is essentially not possible and to align the directions that Australian e-health proceeds requires competent credible leadership as well as a governance framework that is appropriately open, consultative and transparent.
  • To date such leadership has not really emerged and the leadership within the Departments of Health and entities such as the National E-Health Transition Authority (NEHTA) has been unable to reach a satisfactory relationship with many of the other stakeholders - especially the Medical Software Industry and private clinical practitioners.
  • That virtually all the Clinical Advisors to NEHTA resigned in frustration in Sept, 2013 with the way DoHA and NEHTA were undertaking their work is a very clear symptom of very poor leadership and governance being in place at that point in time.
  • Since 2000 there have been a range of centralised government initiatives as both a federal and state level which have really struggled to deliver the expected outcomes and benefits and at least three reviews have identified the need to improve the approaches adopted to governance, consultation and transparency.
  • The question for the future is what should happen next in order to have an ideal situation into the future. While I am not sure of the specifics of what it seems clear that appropriate real consultation, genuine transparency and quality information flows between stakeholders - as well as a sensible, uncomplicated and responsive governance framework will be critical.
  • If appropriate governance and leadership is not achieved it seems to me, and many other experts, that progress over the next few years is likely to be very slow and stuttering.

Review Questions

  • 1. How do Health IT Standards assist in enabling progress in Health IT and what do you believe might be the costs of not having a suitable Standards base to the hoped for progressive implementation of a richer and more clinically useful Health IT environment?
  • 2. What do you believe is the impact of the quality of leadership and governance on the possible success of major Health IT initiatives?
  • 3. What are the key technological innovations that have improved and will improve patient engagement with their health care over the next few years?

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Questions & Comments to Geoff McDonnell
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