E-QUALITY IN E-HEALTH Stakeholders' reflections on adressing e-health challenges at the European level
Improved Healthcare Through Innovative Solutions Health First Europe E-QUALITY IN E-HEALTH Table of Contents
04 I E-Quality in E-Health Foreword by John Bowis, Honorary President Health First Europe
06 I List of Contributing Organizations
08 I E-Health is About The Patient, Health First Europe (HFE) 1 I Citizens’ E-Health 2 I E-Health and 10 I The main aspects of the e-Health policy of the Health Services European Union and the challenges ahead Dr. Andrzej Jan Rys, 22 I E-Health: Delivering Better, Faster and More Efficient Director Public Health and Risk Assessment Unit, Health Services DG Sanco, European Commission Anna Lefevre Skjöldebrand, Chairwoman of Eucomed’s E-Health Task Force 14 I What Would E-Health Bring to Common Citizens? and Managing Director of Swedish Medtech, The Swedish Dr. Milan Cabrnoch, Medical Technology Industry Association Member of the European Parliament - European Conservatives and Reformists, Member of the Committee 26 I Improved Effectiveness; Implementation of E-Health; on Environment, Public Health and Food Safety Better, Faster and More Efficient Health Services David Lloyd Williams, 18 I Patient-Centred E-Health: Helping to Improve Representative European Health Telematics Association Quality of Care through E-Health (EHTEL) Rod Mitchell, International Alliance of Patients Organization (IAPO)
3 I E-Health in Practice 4 I E-Health and 30 I Future of Computer Modeling of Physiology Labor Challenges and Disease in the Virtual Physiological Human and its Application to Medicine 34 I E-quality for e-Safety: a Nurses’ View on e-Health Jos A.E. Spaan, Paul De Raeve, Representative of the European Alliance for Medical and Secretary General – European Federation of Nurses Biological Engineering and Science (EAMBES) Associations (EFN)
38 I Can E-Health Improve Quality of Care in an Ageing Europe? Bert Van Caelenberg, Secretary General - European Federation of Public Service Employees (EUROFEDOP)
40 I Health First Europe Recommendations
41 I List of Contributors
* All articles were written in September – November 2010 03 Health First Europe E-QUALITY IN E-HEALTH E-Quality in E-Health Foreword
services look like in 20 years? Will the The EU is moving fast on its Digital Agenda Strategy, which it recently adopted. Among IT revolution complete our healthcare the Commission’s proposed actions are: landscape? Will a simple mirror be able to send accurate information to a remote screening centre to give us an accurate
John Bowis, diagnosis? Will patients be able to cope Honorary President Health First Europe with the new challenges? How will professionals process all the information? How will personalised medicine and new 2020 technologies transform our lives? • Widespread 2015 deployment We are still at a preliminary stage in this of telemedicine Improved Healthcare Through Innovative Solutions by 2020 exciting path of reform and discovery. • Having secure online medical access by 2015 Health First Europe wants to put the 2012 emphasis on patient-centred healthcare and we welcome all initiatives that foster • Interoperability of electronic medical this goal. records by 2012
Some specialists confirm that e-health can E-Health help tackle some rising challenges facing Europe’s health sectors, such as an ageing population, healthcare inequalities and patient mobility. A framework for Health First Europe wants to put the people-centred health systems based on publication e-health can reduce costs to tackle rising emphasis on patient-centred healthcare demand for services and put patients As Europe moves forward through the 2020 strategy on sustainable economic and providers on a level playing field in and we welcome all initiatives that foster growth, it is imperative to remember that quality healthcare is a vital investment for terms of accessing healthcare, thereby reducing inequalities. this goal. the future of its citizens. Within the EU, the development of e-health Indeed, as Health First Europe’s Honorary So we can see many challenges ahead falls within the framework of the 2004 Despite these achievements, we are HFE recognizes these challenges and President, I strive to uphold one of our and the European Union, with its limited communication of an action plan for aware of the many challenges that lay through our actions, we seek to make the core messages: that “health equals health competencies, is looking into a European e-health area and more recent ahead. There is an urgent need for coming decade of healthcare in Europe wealth.” Health is a key productive factor those challenges. On one hand, they legislation on telemedicine, interoperability more member state coordination, better truly patient-centred. in terms of employment, innovation and are seeking to improve certainty on of electronic record systems and safe and security, streamlined regulation and economic growth. patients’ mobility and also into how efficient healthcare through e-health. greater leadership by health authorities in demographic challenges can impact on order for wider and faster implementation Yours Sincerely, As we look to the future of healthcare and the sustainability of our welfare systems. of a genuine European e-health area. the impact of the economic crisis on our On the other hand, they want to leverage John healthcare systems, our governments innovation and take leadership in the
are responding by analysing new ways IT sector as applied to the health sector. John Bowis of delivering healthcare services Honorary President Health First Europe from a cost-effective perspective while Politicians have started looking at future simultaneously respecting the principles solutions for the improvement of healthcare of quality and safety. systems. What will our health and care
05 Health First Europe E-QUALITY IN E-HEALTH List of Contributing Organizations
For further information on the contributing organizations to the e-Quality in e-Health publication see below:
European Alliance for Medical and Biological Engineering and Science (EAMBES)
www.eambes.org
European Federation of Nurses Associations (EFN)
www.efnweb.org
European Health Telematics Association
www.ehtel.org
Eucomed
www.eucomed.org
EUROPEAN European Federation of Public Service Employees Secretary General (EUROFEDOP) COMMISSION www.eurofedop.org
Dr. Andrzej Jan Rys, Public Health and Risk Assesment Director, DG Sanco, European Commission European Commission - DG SANCO, Public Health and Risk Assessment Unit ec.europa.eu
Dr. Milan Cabrnoch, Member of the European Parliament, European Conservatives and Reformists political group, Member of the Committee on the Environment, Public Health and Food Safety
www.europarl.europa.eu
International Alliance of Patients Organization (IAPO)
www.patientsorganizations.org
Health First Europe
www.healthfirsteurope.org
07 Health First Europe E-QUALITY IN E-HEALTH E-Health is About The Patient
E-health has the potential to promote a philosophy where patients are put first through innovation. E-health also bares a signature of solidarity, building Moreover, another feature of modern the technological bridge to reach its Improved Healthcare Through Innovative Solutions patients because it considers timing and technologies is technical interoperability, health information availability a must for a healthier Europe. which should be seen as a future ‘must Overall, e-health reduces the risk of error do’ so that information becomes not only in both prescription issue and processing, The European Union and, in particular, the European Commission have been very empowering patients and optimizing mobile but accessible. active especially since 2004 on e-health initiatives. services and continuity of care. However, when looking towards the future of This topic is very complex and should be defined as a tool that serves to improve the EU healthcare policy, usability and In this sense, the two major problems a success and that in spite of being an quality of patient care. When we talk about e-health, we talk about new innovative accessibility stand out as barriers of implementation which need to be tackled identified in Chapter 1, data protection advanced technological tool e-health is ways of delivering healthcare, enhancing prevention, diagnosis, monitoring and with more urgency as we are facing and interoperability raise a common set still in its infancy and has even greater managing health and lifestyle. many demographic and health-related of questions that need to be answered potential for innovation. Hence, this challenges. in the future: what type of legislation is chapter explains in specific terms what needed to ensure simultaneously data e-health does and most importantly what The complexity and the broadness of e-health (from prevention, to screening, to In Chapter 1 we understand why protection and interoperability, what it could do in practice. telemonitoring…) and the different stakeholders concerned by all its utilities, made health information should be made funding should be allocated for this and this publication necessary. Health First Europe is an alliance of multiple leading available directly to patients and why how can we bypass connectivity issues? Last but not least, Chapter 4 puts the topic health stakeholders that wants to take part in the ongoing discussions about electronic information is the best into perspective, telling of present and managing healthcare services. means of information sharing. A few Chapter 2 tries to answer just that, future challenges that affect the medical important aspects related to these issues explaining why we are so sure that profession and overall, the EU and its are laid down: trustworthiness and e-health is a tool that empowers patients. The two articles both recognize Our members have different views about e-health. These approaches reflect their comprehensibility. Information should be citizens. It will deliver key services such that under the pressure of an ageing different experiences in regards to e-health and some of their expectations. available to patients in all languages so as rapid access to medical records, population phenomenon, healthcare that when faced with such information, making it possible that a chronic disease services need the digitisation that could could even be remotely monitored or be brought by e-health investments. Ultimately, this contribution wants to serve as a sharing information point to look all patients can have the opportunity to understand it with the maximum level of that 5 million yearly prescription errors In this sense, the main points voiced into the future of e-health and its potential impact. responsibility and data security. could be avoided. Thus, it improves the refer to training professionals in the best management of healthcare and what is way possible, facilitating for them both Moreover, another feature of modern essential to remember is that we know hardware and software material. technologies is technical interoperability, it works. A similar program has already which should be seen as a future ‘must been implemented in Sweden and people Overall, e-health policies should be seen do’ so that information becomes not there could tangibly feel that it delivered from many angles – those of Europe only mobile but accessible. In light of this, on its promises. In addition, Malta, 2020 priorities with regard to innovation, e-health should bring with it the simplification Germany, Slovenia and Slovakia have the Barcelona Declaration on patients of administrative procedures and should developed ID cards where health and safety or in the frame of sustainable be a source of education and evaluation illness information is accessibly stored. development and harmonisation of for the medical profession, facilitating the EU27 healthcare policies. This should patient-doctor relationship. Chapter 3 then explains two aspects about offer governments and other stakeholders ICT technologies: that projects such alike an impetus to continue their efforts as the Virtual Physiological Human were in consolidating e-health policies.
09 Health First Europe E-QUALITY IN E-HEALTH 1 I Citizens' E-Health
So, what is eHealth? eHealth is used staff and providing support to help avoid mean quicker and safer ways of passing The main aspects interchangeably with the term ICT mistakes (by proper transfer of important information to colleagues when there is (information and communication medical data or scans). It can help prevent a changeover of staff. It can simply mean technologies) in the healthcare field. diseases or diagnose them at an early stage, spending less time dealing with red tape, More precisely, it can be defined as “an increase patient safety, ensure continuity but we also know that it will imply major emerging field of medical informatics, of care; it can help to improve access to changes in their working methods and of the eHealth policy referring to the organisation and delivery healthcare, through telemedicine marking organisation and therefore require trust of health services and information using services accessible even to remote from all sides. the Internet and related technologies. In regions and across Member States; a broader sense, the term characterizes and it can improve sustainability and These tremenduous future improvements not only a technical development, but also efficiency of health systems, by enabling in the healthcare field will however need of the European a new way of working, an attitude, and better collection of comparable health a specific focus on inter-operability and a commitment to networked, global thinking, data, which can then be used for medical compatibility of IT systems. eHealth to improve health care locally, regionally, research and the better management of applications should be able to “talk” at and worldwide by using information and health systems; improve sustainability of each level: across hospital services, local, communication technology” (Eysenbach, health systems by empowering patients national and European borders. Union and the 2001, adapted by Pagliari et al, 2005). and enhancing patient-centered and outcomes oriented healthcare. In 2004, the EU Action Plan on eHealth identified several technologies as For patients, eHealth means better and challenges ahead eHealth technologies. These examples safer care and more comfort as doctors include: “health information networks, have quick electronic access to their electronic health records, telemedicine medical details - such as any allergy they services, personal wearable and may have - without needing to carry out portable communicable systems, health additional tests. For health professionals, portals, and many other information and eHealth may translate into better access communication technology-based tools to the latest medical research. It can also assisting prevention, diagnosis, treatment, health monitoring, and lifestyle management”.
1) The added value of eHealth solutions In the European Commission, we think EHealth is a rather new policy field at European Union to reach Public Health objectives level and “despite the availability and proven benefits, In the European Commission, we think that eHealth is a powerful instrument to eHealth systems and services are not yet widely used that eHealth is a powerful instrument to implement general public health objectives, in real-life medical or health situations” (Commission implement general public health objectives, such as the safety of emergency care and 1 Action Plan, 2004 ). the continuity of non emergency care, such as the safety of emergency care especially in the context of cross-border Dr. Andrzej Jan Rys, So far, the eHealth deployment remains of the eHealth systems; market healthcare. and the continuity of non emergency care, Director Public Health and Risk Assessment Unit, limited, even at national level due to the fragmentation; lack of regulation; and of DG Sanco, European Commission extent of the transformations needed. course confidentiality and security issues. Thus, in a public health perspective, especially in the context of cross-border It includes: confidence-building of the However, all Member States now realise eHealth is a tool which can contribute users; cost of deployment (even more at that investing in eHealth is necessary and to these public health objectives and healthcare. a large scale); organisational changes of inevitable. They all face the same challenges improve the quality of care and patient the whole health systems; necessity to and they are all seeking a comprehensive safety. This can be achieved through develop new skills in users; interoperability model of development of eHealth systems. making knowledge available to health
1 Commission Communication, “e-Health - making healthcare better for European citizens: An action plan for a European e-Health Area”, 2004: http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=COM:2004:0356:FIN:EN:PDF 11 Health First Europe E-QUALITY IN E-HEALTH
2) Action at the EU level Virtual Physiological Human, Modelling/ and health systems’ management. It 2) effective methods for enabling the use action through partnerships between the simulation of diseases (€ 72 M in 2007, enables us to provide a good basis for of medical information for public health Commission and the Member States. In order to tackle these huge challenges, € 68 M in 2009); an EU evidence-based policy. and research purposes, supporting voluntary intergovernmental cooperation for instance the development of In this respect, two crucial tests for the EU’s at European level has been ongoing 3) The Structural Funds, with a total of On the policy side, the abovementioned personalised healthcare and assessing capacity to shape an answer to eHealth for some years. The Commission has € 5 billion planned for e –services, “action plan for a European eHealth Area”, the effectiveness of treatments on are expected in the near future: the financed projects in order to foster the including eHealth; which covers all aspects of eHealth and a large scale; and European eHealth Governance Initiative, developement of technological and non- sets out the steps needed for widespread 4) The Public Health Programme, which which may provide a mechanism for technological aspects of eHealth through: adoption of eHealth technologies across 3) common identification and authentication surveys the citizen’s use of internet European intergovernmental cooperation the EU by 2010. The plan calls on Member measures to facilitate transferability of 1) One of the three operational programmes for health purposes, summarizes the on eHealth, combining Member States’ States to develop tailored national and data in cross-border healthcare. of the Competitiveness and Innovation evidence of eHealth implementation political commitment and technical support regional eHealth strategies. EU’s role is to Framework Programme (CIP, 2007- cases, assesses the effects on health with the Commission funding; and the encourage each health authority to learn We are now at a crossroad. The proposed 2013): the Information Communication organizations of the introduction of proposed Directive. from the experiences of others. The action Directive is still currently discussed by Technologies Policy Support Programme Electronic Health Records; plan, an umbrella for policy development, the Members of the European Parliament (ICT-PSP), which aims at stimulating is due for revision in 2011. and Member States. They will need to a wider uptake of innovative ICT based 5) The European Public Health Portal, decide to what extent they are ready to services and the exploitation of digital which provide access to reliable health 3) The benefits of closer cooperation really engage in cooperation on eHealth content across Europe by citizens, information across the EU, in all the between Member States at EU level. After a decade of financing governments and businesses, in official languages. In the future, this intergovernmental voluntary projects, which particular SMEs (€ 730 million for can expand to health tutorials: tools to The EU projects conducted so far have were essential for the development of 2007-2013); empower patients, capable of guiding gathered evidence and knowledge on the evidence-based policy, a political decision and supporting them while they are benefits of closer cooperation on eHealth. 2) The Seventh Framework Programme should be taken on whether or not the learning about their health or navigating The current discussions on the proposed for Research (FP7), which spends eHealth field requires a higher level of the health systems. Directive on the application patients’ 100 M€/year in various fields: Personal ambition. rights in cross-border health care, which Health Systems (€ 72 M in 2007, All in all, to date, over 450 joint projects have includes an article on eHealth in its € 63 M in 2009), Patient Safety (Safer received a total of around a billion euros of Last March, the European Commission chapter on “Cooperation in healthcare”, surgery, detection of public health European funding. This has contributed to launched the “Europe 2020 Strategy for are particularly topical in this respect. events, clinical care and research a solid knowledge base on the potential smart, sustainable and inclusive growth” The Commission proposes to establish Highlights (€ 30 M in 2007, € 30 M in 2009), eHealth benefits for patients, professionals to exit the crisis and prepare the EU within an experts committee measures to economy for the next decade. In order achieve the interoperability (standards and • eHealth solutions help fulfilling public health objectives as well as improve to foster a “smart growth” in Europe, the terminologies) of ICT systems in the field the quality of care and patient safety. Commission proposes a Europe 2020 of healthcare. A constructive discussion agenda consisting of a series of flagship • eHealth means better and safer care for patients. between the Council and the Commission initiatives. One of these is called “A digital led to identify three concrete areas where agenda for Europe” and intends to deliver • Two main EU initiatives may help to shape the eHealth landscape. The For patients, eHealth means better cooperation could be formalised and for sustainable economic and social benefits European eHealth Governance Initiative, which may provide a mechanism which there is an added value to act at from a Digital Single Market based on an and safer care and more confort as EU level. As a result, the Council position for European intergovernmental cooperation on eHealth, combining ultra fast internet. One of the key actions (September 2010) now proposes to build Member States’ political commitment and technical support with foreseen under the Digital Agenda relates doctors have quick electronic access on existing EU projects (epSOS2) and to Commission funding, and the Commission proposed Directive on the to eHealth and the need to “undertake focus on: application of patients’ rights in cross-border health care, which includes to their medical details. pilot actions to equip Europeans with an article on eHealth. 1) a non-exhaustive list of data that is to secure online access to their medical be included in patients’ summaries health data by 2015 and to achieve and that can be shared between health by 2020 widespread deployment of professionals to enable continuity of telemedicine services”. Therefore, eHealth care and patient safety across borders; has been identified as a priority for future
2 http://www.epsos.eu/ 13 Health First Europe E-QUALITY IN E-HEALTH 1 I Citizens' E-Health
governments to guarantee the accuracy What would of sources in the health sector. The second substantial condition for information accessibility is language. The We came to the conclusion that the best majority of health information on the internet e-Health bring to is in English. However, information in other way is to provide the information directly languages, used by smaller nations, remains less accessible. If we want the wider public to patients. It is the patients who are most to have access to the information, we must offer such information in native languages often present in the place where decisions common citizens? and in simpler forms comprehensible even to those with a basic education. are made concerning their health.
Information processing is also a substantial part of health care. Modern medicine encompasses a huge quantity of information. One patient is being taken care of not by one doctor, but by several teams of specialists working in different departments, Firstly, electronic processing allows by pharmacists of generic substitute in various health-service institutions and for the simplification of administrative drugs. This information may be used for often in various cities or countries. procedures pertaining to prescriptions, educating doctors and pharmacists and Our society is constantly changing. However, modern drug dispensation at the pharmacy and as a supportive measure to the proper changes are influenced more than ever by new It is necessary to ensure that the subsequent reimbursement by health prescribing and dispensing of drugs. technologies, including those in information and available information is delivered to insurance companies. The electronic Information on prescribed and dispensed communication. the right place on time. Information must form reduces the risk of error during drugs could be extremely useful for be accessible where it is needed and in prescription preparation and during its decision making related to health and the a timely manner so that further health care processing. It is also reduces the risk of pharmaceutical politics of the country. We are in daily contact with these Health is of the highest value for each decisions can be made. forged prescriptions. Dr. Milan Cabrnoch, new technologies at home, at work of us. People are becoming more and The modern European health service is Member of the European Parliament - and when we entertain ourselves. Of more interested in health care especially The path to the best practice of Secondly, electronic processing provides focused on the citizen and the patient. European Conservatives and Reformists, course, we therefore cannot avoid with regards to general health information, processing of health information is significant support to the decision making If we want the patient to participate in Member of the Committee on Environment, these technological developments in how to care for their health and how to Public Health and Food Safety through electronic documentation. process. During electronic preparation of decision making in the health service and the health field. On the contrary, the prevent disease and maintain a healthy Electronic information can easily be prescriptions, both the doctor and pharmacist also to accept some share of responsibility health field is a domain where new lifestyle. stored, shared, transmitted and classified may access much needed information about for health behaviour, we should be technologies find their place rapidly and allows for specific detailed searches. the drugs, their characteristics and also providing access to patient information. and on a broad scale. Information technologies are the new Likewise, the accurate processing of health information on the various drugs the patient is Electronically processed information method of presenting health care information information is a prerequisite for providing currently taking in addition to their prescription should be more easily accessible for the When we say e-Health, we imagine the to citizens. For such types of information, high quality healthcare. history in order to better understand the patient than hard copies. use of information and communication trustworthiness and comprehensibility complete patient profile. technologies for health care and are extremely important. On the internet, an Also part of health documentation, It is patients who are most interested in throughout the health sector. Information immense quantity of health information can electronic processing of prescriptions and Thirdly, electronic prescription processing the quality and safety of provided health technologies are used by specialists as be found including information related to medical certificate information could also provides the data necessary for the care. It is therefore evident that the availability part of devices, surgery practises and healthy living, disease, treatment and drugs. bring a series of benefits. evaluation of doctoral behaviour by of information and its proper processing hospital equipment. Yet, what kind of However, not all the information is factual, providing a record of the drugs prescribed is one of the necessary conditions for the benefit does modern communication comprehensive and correlates to a scientific by doctors and the subsequent distribution provision of quality and safe health care. technology bring to patients and citizens? knowledge base. It is one of the tasks of
15 Health First Europe E-QUALITY IN E-HEALTH
should mirror the health documentation Most significant is quality of patient life, E-Health tools are changing reality where of the patient maintained by each health- much higher if they can live at home, in we live and work. It is not important service institution. addition to the benefits of cost efficiency. whether we agree with this reality or not. Sources are limited and there is no doubt What is important is how fast we are It is a challenge for the EU to quickly that home care is more economical than able to adapt to the changing world create standards on the basis of which institutional care. and use its benefits to ensure better At the same time it is patients who individual countries, individual health-service health for us all. are the absolute owner of confidential institutions and individual authors of health It is important that we discuss many other information systems may all contribute. The specific applications and new possibilities Dr. Milan Cabrnoch result must be interoperability. Individuals, deriving from modern technology. Even Member of the European Parliament personal data and only patients should patients and health-service staff must be more fundamental is that the use of the new easily identifiable across the whole EU. Data possibilities provided by communication decide whom they provide such sensitive stored in individual information systems and information technologies greatly benefit information to. must be stored in such a way as to allow health-service provisions in comparison their shared use by all information systems. to other options. Of great importance They must also be open to compatibility for effective use of such technologies is with information systems outside the EU. interoperability. In case that information can be transferred between individual Another topic for use of modern commu- information systems, between health- nication and information technologies service institutions and even between is the field of long-term care. Our countries, ensures an advantageous service We have spent considerable time looking society is getting older and more of our to both patients and the health sector. for the method of how to arrange existing citizens need long-term care. The number information in order to be available at the of persons living alone is increasing as Information and communication technologies right time in the right place, i.e. at the place well as the number dependant on daily or should, in principle, realign the position of where the further health care of the patient uninterrupted care of relatives. New the citizen in the health care system. Access Highlights is being decided. technologies allow the provision of to information gives opportunity to all to • e-Health is synonymous with the use of information and communication effective care at home as an alternative better care for their health. The patient may We came to the conclusion that the best to institutional care. become an informed partner of the doctor technologies for health care and throughout the health sector. way is to provide the information directly during decision making procedures about • e-Health cannot exist in isolation from the values of quality and safety to patients. It is the patients who are most Technologies also allow better com- their health and then may take on more often present in the place where decisions munication with the disabled. We are responsibility for such decisions. of health care provision - the core of patients’ interests. are made concerning their health. At the aware of the impact of loneliness and the • e-Health functions under conditions of information mobility, accessibility same time it is patients who are the need for contact with not only nurses and absolute owner of confidential personal doctors but also relatives is an imperative as well as interoperability. These are some of the means that grant patients data and only patients should decide need of the long-term ill. Besides simple the choice to become informed partners of the doctor and take part in whom they provide such sensitive communication, technologies may be the decision-making procedures which concern their health. information to. Therefore, we see the used for aid calling, locating the position future process as a combination of an of patients with limited orientation and for electronic health record - electronic health transmitting medical information such as documentation created and administered temperature, blood pressure, heartbeat by the health-service institution and and blood sugar levels. a personal health record of patients owned by the patient, which can be We understand the many good reasons distributed by patients at their discretion. for supporting the relocation of long-term It is clear that the personal health record care patients from institution to home.
17 Health First Europe E-QUALITY IN E-HEALTH 1 I Citizens' E-Health
legal, funding and connectivity issues Patient-centred that must be resolved. These uncertainties are hindering the introduction of new Europe-wide IT systems. Unfortunately, the wheels of negotiation grind slowly and when adding in the reluctance of ...until the major issues surrounding the e-health: helping to politicians, media and the end users to support the wider development of new interoperability of e-health systems are e-systems, many of our health providers and end users who do see the positive resolved, within and across the different benefits, often wait frustrated by the health related structures of each European improve quality of bureaucracy, which surrounds us all.
Many of us working within the patient Union (EU) member state, there is a fear that community to improve the quality of care many of the already... of people with rare, chronic and other care through e-health conditions believe that until the major issues surrounding the interoperability of e-health systems are resolved, within and across the different health related structures of each European Union (EU) member state, there is a fear that many offs, or costs substantially increased as So the co-ordinated stakeholder action of the already reported positive e-health a result of serious delays or very extended plans of the European Commission in initiatives being put in place by the EU and commissioning dates. This has led to collaboration with EU Member States others will have little impact in improving much criticism among European citizens should help us overcome many of the the e-health arena and consequently the and taxpayers, who have often funded remaining issues, most notably - as E-Health represents a significant avenue to empower lives of the European citizens affected by a good portion of what they see as previously mentioned - the interoperability ill health. waste and inefficiency. This is particularly issues. Therefore, we must ensure that patients and their carers as well as aid other healthcare abhorrent during this extended period of the end user - the patients and patient stakeholders in providing truly patient-centred It is important to remember that for many increasingly scare resources, longer life organisation(s) - together with the consumer/ healthcare. citizens across Europe and beyond the expectancy and, for many, the personal citizen group (s) - are represented early on security of e-health IT systems is a major difficulties caused by the ongoing in all multi-stakeholder structures, debates Many of the benefits of e-health have communication, assist in the day-to-day concern as they do not believe that their economic uncertainties. and discussions.
Rod Mitchell, been stated in this report, however it is management of long-term conditions, most personal (ill) health information/ International Alliance of Patients worth reiterating the opportunities that improve diagnostics and prevention, records will be secure when held within In the past, uncertain e-Health cost benefit Patients have both rights and responsibilities Organization (IAPO) innovation in information and health and connect people in remote areas a transportable/shared IT system. Many research outcomes have also impacted and while increasingly they better understand technologies can bring. to healthcare providers. These benefits are concerned that reported access negatively on purchasers decision-making their bodies, it is known that they can benefit cannot be underestimated, however there abuses of the health information systems so in the future we must better identify from sharing in their care, from interacting As Europe and the world face the double are challenges that need to be met such mean their records are seen by people not which systems can be of real benefit and with their healthcare professionals and from challenge of an ageing population and an as data security and interoperability authorised to have the information. So it is which are less efficient and in doing so being responsible citizens. Having a voice increase in non-communicable diseases before they can be realised. vital that the citizens are reassured now! can use them to improve the quality of in multi-stakeholder structures at EU level there is a growing need to adapt health care of European citizens. In time many and within the member states will also help systems in a cost-effective way that meets Much has been written about the new Adverse media reports concerning new of the positively evaluated systems can achieve these aims. the needs and preferences of patients. e-health technologies that are already e-systems found to be not fit for purpose also be made available to other parts of E-health systems can aid patient choice, available, but, among others, there are remind us that huge sums of money the world. improve patient-health professional outstanding national and cross border have been wasted whether through write
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The EU is based upon solidarity among While the majority of European citizens The EU is based upon solidarity among its its people and health is at the top of hold a bank account and trust their bank its agenda so we must encourage our to hold their personal financial information people and health is at the top of its agenda leaders and politicians at all levels to in a secure IT environment and increasing involve their citizens, as many will also numbers undertaking their transactions so we must encourage our leaders and ...reported positive e-health initiatives being have constructive ideas to share. via the web connected bank services, very many remain unwilling to accept that politicians at all levels to involve their citizens, put in place by the EU and others will have We know already that e-health systems the same level of high security systems can successfully provide us with are available for their health records. as many will also have constructive ideas little impact in improving the e-health arena opportunities for regular monitoring, on So it is essential that before we invest line contact with physicians allowing huge public sums in developing IT e-health to share. and consequently the lives of the European variation in treatment programmes for systems further we must overcome those with long-term conditions and this reluctance. citizens affected by ill health. a shared care facility and the collection of data. In scaling up these systems we This, I am sure, would be helped Rod Mitchell on behalf of the International should reduce costs. immensely if we could bring ourselves to Alliance of Patients’ Organizations trust one another and understand one Much has already been mentioned about another’s ways of working, cultures and Rod Mitchell, the importance of e-Health records customs. The community of patients’ International Alliance of Patients being highly secure and accessible. organisations like the members of Organization (IAPO) Widening the empowered patient Some EU countries are progressing their the International Alliance of Patients’ population through training and/or self- introduction and further development. Organizations – IAPO, the European education/self management should Patients Forum - EPF, EURORDIS - be further progressed – specifically We have learnt from projects like the WHO the European rare diseases “umbrella” providing simple well-constructed easily Patient Safety initiative with its Patient together with the myriad of different understandable information faster will Safety Champions and the consequent disease specific organisations, societies help this process. introduction of similar projects in Europe, and groups, whether at the EU level that the patient community has a role or across member states, have all What we now need is a Europe wide to play in reducing medical errors so demonstrated that people from different initiative involving citizens of all ages improving patient safety. Just moving from backgrounds and communities can work though first piloting the use of those illegible hand written records to easily together to achieve goals. “volunteers” who understand and use IT in understood electronic records shows their daily lives. This would actively involve what benefits can quickly follow when we Health is critical to all aspects of our lives Highlights European citizens and their friends across work together, most importantly building so let us use our skills, compassion, • e-Health works for the patient if major challenges such as data security, the world who already communicate trust among one another too! energies and our extra time to assist interoperability and other outstanding national and cross border legal, with one another in huge numbers using in improving the lives of our citizens mobile phones and the world wide web We know that European patients are through building trust and removing old funding and connectivity issues are overcome. who could then transfer their IT skills to seeking equitable and in most cases prejudices. Let us therefore work together • e-Health is a tool that enhances quality of care to the benefit of patients the accredited teaching about the benefits faster access to services and treatments to constructively harness the benefits of of e-Health and how they can assist in including provision of social/home care. e-Health to meet the health challenges but they still need to be reassured that health security systems exist and resolving the uncertainties that exist in There are very many areas ripe for the of the future and deliver patient-centred will protect their health records. As with a bank account, patients personal people’s minds. On-line toolkits also have introduction of e-health systems but we healthcare for all. health records can be safe. a role to play but we must not forget the must each have a willingness to better many people without access to the latest understand these benefits and to set • e-Health provides patients faster access to health and other services – technologies in their everyday lives. aside old dogmas. such as home care. Understanding as well as communicating the benefits of e-Health remains one of the essential tasks of stakeholders.
21 Health First Europe E-QUALITY IN E-HEALTH 2 I E-Health and Health Services
holds the keys to improving the e-Health: delivering effectiveness of healthcare systems and to delivering patient-centred care.
In 2009, the Swedish Presidency of the EU commissioned a report in order to foster From a healthcare delivery perspective, better, faster and understanding of how improvements in healthcare can be supported by e-Health offers many attractive cost- technology and how these technologies can resonate with five key health policy reduction features and timesaving goals – availability of service; continuity measures. more efficient health of care; patient empowerment; patient safety; and quality of care. The findings emphasised in no uncertain terms that e-Health can deliver significantly better use of healthcare resources. services The market I know best, Sweden, has e-Health is also a great facilitator of patient- been an early adopter of e-Health services centred care. The technology is enabling For the six EU Member States covered and is among the EU’s leaders in terms patients to become more informed by the study it was found that: of the development of computerised partners in the healthcare decision- • 5 million yearly outpatient prescription patient records and the use of electronic making process. From telemedicine errors could be avoided by using prescriptions. to online patient portals, patients are electronic prescriptions; demonstrating a desire to take control • 100,000 yearly inpatient adverse drug If I had to draw some conclusions from of their health records and monitor events could be avoided through the Swedish experience to date, I would their medical conditions. Pilot studies computerisation – which would free up say that, firstly, e-Health is very effective in Sweden have found that patients Patients, clinicians and healthcare providers alike have 700,000 bed-days per year; and in facilitating the flow of information appreciate the ease of access to first and homogenising communication and line support that e-Health solutions can a stake in Europe being at the cutting edge of medical • 9 million bed-days yearly could be freed secondly, that it is a real driver of patient provide. Interestingly, clinicians report that innovation. After all, new technology enables the up through the use of electronic medical empowerment. patients do not abuse the new tools, such provision of better, faster and more efficient healthcare. records for patients - an opportunity as electronic appointment booking. On to increase throughput and decrease In healthcare, diagnostics and treatments the contrary, there has been a reduction in waiting times, equivalent to a value of Unfortunately, the speed we associate equally effective whether it is being used are often both complex and time- the number of unnecessary face-to-face nearly €3.7 billion. Anna Lefevre Skjöldebrand, with the online world is not always for clinical, administrative or educational sensitive. Medical information needs to consultations since introducing the new Chairwoman of Eucomed’s E-Health Task replicated offline and in reality the pace purposes. be accessible at the right place and at technology. Clearly, e-Health has the power to be Force and Managing Director of Swedish of e-Health uptake has been slower the right time - so any tool which can a game-changer for European healthcare Medtech, The Swedish Medical Technology than European healthcare stakeholders From a healthcare delivery perspective, instantaneously get relevant information to The Swedish experience of e-Health has Industry Association systems. It can significantly improve would wish. e-Health offers many attractive cost- the healthcare professional makes a real been that investment and commitment to workflows and day-to-day management reduction features and timesaving difference to the quality of care. Likewise, technology has improved the timeliness, of healthcare. Technologies such as The concept of e-Health encompasses measures. By leveraging information and e-Health benefits patient safety by efficiency and effectiveness of services. electronic medical records, computerised a vast number of services which apply to communication technology, e-Health also improving the quality of information in the Healthcare providers and patients have physician order entry, electronic transfer both clinical and non-clinical settings. It gives patients the opportunity to connect Swedish healthcare system through more seen real benefits from this commitment of prescriptions, image archiving and uses range from delivering rapid access with their caregivers and healthcare standardised reporting and by avoiding to making e-Health work. communications systems and Radio to medical records, to allowing remote systems as never before. misunderstandings due to illegible scripts Frequency Identification (RFID) are already monitoring of a chronic disease, through – which had been a considerable problem. being used to varying degrees across to allowing real-time tracking of medical As Europe grapples to find a financially Europe. supplies – e-Health is a technology that is sustainable healthcare model, e-Health
23 Health First Europe E-QUALITY IN E-HEALTH
doctors in different hospitals - and perhaps one day in different countries - can manage a patient’s care more efficiently. Some healthcare decision- makers may still consider e-Health as By leveraging information and being yet another cost to manage. But the bottom line is that investment in this new communication technology, e-Health also technology enables healthcare systems to become rapidly more effective. gives patients the opportunity to connect
with their caregivers and healthcare Anna Lefevre Skjöldebrand Anna Lefevre Skjöldebrand is the systems as never before. Chairwoman of Eucomed’s e-Health Task Force and the Managing Director of Swedish Medtech, the Swedish medical technology industry association
However, there are clearly many hurdles Aside from technical requirements, a range to overcome. For example, a national of aspects - legal, ethical, organisational, patient record project linking together etc - need to be addressed to attain hospitals, clinics and GPs – whereby e-Health interoperability. The national certain health-related metrics would patient record project also revealed the be accessible electronically no matter poor level of IT training of many healthcare where in Sweden the patient is being professionals. It is essential that healthcare treated - is due to be launched in 2011. providers invest more in educating their Although electronic health records are staff in the proper use of their e-Health the norm in Sweden, the challenge has systems. been to integrate diverse IT systems – in Stockholm alone there are over 400 It is also worth remembering that no different patient record systems in operation. e-Health system is without its problems. In Sweden, we have occasionally seen The solution to managing this heterogeneous issues with stability and response times. IT environment has been to agree on But overall, healthcare policymakers have Highlights a series of standards which each system found e-Health to be an instrument to has to attain. Standardisation is a driver of enhance quality, access and safety in • e-Health encompasses a vast number of services - the delivery of rapid interoperability, allowing new applications healthcare. access, the monitoring of a chronic disease through to allowing real time to run on top of more mature technologies. tracking of medical supplies - which apply to both clinical and non-clinical The new national system will act as a kind There really is a long way to go before settings. of ‘google’ which clinicians nationwide can reaching the full potential of e-Health. In use to search for and access the patient Europe, we are only beginning to appreciate • e-Health offers a series of attractive cost-reduction features. information they need to make appropriate the benefits of an interconnected healthcare healthcare decisions. system. When systems are interconnected, • e-Health offers time saving measures.
25 Health First Europe E-QUALITY IN E-HEALTH 2 I E-Health and Health Services
a number of e-Health activities and projects users are clinical professionals across Much of what we have learnt in the past Improved effectiveness; and this was underlined at the e-Health a range of specialties and functions decade is not new, but rather a pragmatic conference in Barcelona in March 2010. from paramedics and nurses to hospital reflection of the difference between The European Commission’s continuing consultants. In their own private lives, popular perception and prevailing reality. support for e-Health will be crucial, but most will be IT users at some level. Yet, at New business models and working we have learnt that the Commission work, corporate IT capabilities often do not relationships are now required where implementation of cannot do all of this on its own. Its key extend support to enable them to do their citizens are given both choice and responsibilities and priorities are declared, but e-Health is not just a top down affair. There are some components to be dealt with at European level but these are rather e-Health; better, faster restricted without a European market Much of what we have learnt in the for health care or for e-Health; other elements, in particular deployment, will be past decade is not new, but rather taken care of at national, regional or local level. The next key step is to increase the a pragmatic reflection of the difference and more efficient understanding of the importance and value of e-Health among all the stakeholders. between popular perception and
Over the last few years, much attention prevailing reality. health services has been paid to issues of healthcare transformation and to the role of e-Health. The results have been disappointing (with some notable local exceptions), jobs more effectively. There are also some responsibility; where this is encouraged particularly where centralist strategies concerns among clinicians and patients, and informed; where clinical professionals have tried to impose ‘one size fits all’ centred on the view that medicine is are supported and informed to be more solutions. Issues of scale and complexity a personal relationship between clinician effective, to work as part of broader care in healthcare are still little understood in and patient, which should be kept teams looking towards more personal relation to e-Health, Even now, it seems that way. and personalised care; where regions, evident that working with population national governments and politicians are groups above 5 million involves a major The work EHTEL has done with patients confident enough to apply the principles These were always the goals of what came to be called shift in complexity beyond the practical groups leading up to the publication of the of subsidiarity. e-Health. In the early days, the vehicle for achieving application of today’s IT technology in Patient’s Charter, highlights very real issues a health care environment. Experiences this was the European Commission’s Research & about quality, access, convenience, and Support at the European level will with the UK National Programme for IT, Technology Development programme. confidentiality but also about the sustainability need to be more focussed. The Lead with medical records in France and the of present prevailing models of care. Choice Market Initiative (LMI) and the recent demise of GIP-DMP, and the smart card There was much talk of “magic solutions”, together technology and health care, the and empowerment sound good, but do ICT Policy Support Programme are both programme in Germany, all serve to David Lloyd Williams, “silver bullets” and “paradigm shifts” with academic and technological emphasis they offer any practical help when you are examples moving the focus towards underline this issue. Representative European Health Telematics a somewhat impractical commitment to the would have to be rethought creating some seriously ill or coping with chronic disease? local deployment. There are many good Association (EHTEL) implementation of wide ranging standards. method of building bridges and securing Looking ahead for users, the prognosis initiatives under way, with projects such What about healthcare users – how do Like many similar new communities, it active collaboration between the various is good: they will be better informed and as Calliope (Call for Interoperability in they view e-Health? The simple answer is spent huge amounts of time and money stakeholders. The challenge now is to find more notice will be taken of their individual e-Health), epSOS (Smart Open Services that they are only now beginning to see talking to itself, with little direct connection ways of realising these goals. preferences. They are likely to be given for European Patients) and Renewing it as a priority. The prevailing perspective to health care professionals and the real more responsibility for their own health, but Health (Regions of Europe Working is rather limited and varies significantly world of clinical practice. For some The European Commission (DG INFSO) there is still a large gap in understanding Together for Health). The focus is now across different user categories. Many time now it has been clear that to bring has consistently worked to support between patients and other stakeholders. on interoperability, telemedicine, personal
27 Health First Europe E-QUALITY IN E-HEALTH
health systems. But the real potential seen the beginnings of convergence with better value. Existing cost savings one enabler for healthcare transformation. Innovation has to be encouraged, rewarded for connecting to care episodes and between IT, telecoms, medical equipment models are too simplistic for e-Health and We are close to having the technology we and deployed, reducing not just ‘time to consultations, and then to patients and medical devices. we will still need to spend time and effort need, interoperability of information and the market’ for products and services but and citizens is still far from fulfilled. We finding answers, which are honest, and systems that share it, but not yet information also ‘time to generate value’ in successful have learnt that, despite considerable What we have still not seen is any truly clear but also effective in a practical local collected at the point of care, stakeholder user deployments. investment, industry does not yet have scalable collaboration model to overcome care environment. collaboration, the transformational change the capability to apply itself to health as it the silos and protective interests in in mentality and the flexibility of approach David Lloyd-Williams has done to most other industries; there healthcare. Nor have we seen clear and This will be a challenging decade for needed. e-Health is accepted as a concept EHTEL is no effective global market and still no unequivocal business cases for e-Health; healthcare. Cost will as ever be the but not yet as a practical, valuable and common solutions. But we have seen clear explanations of what e-Health can prime one – how will Europe and its essential support tool for facing many some progress here too, with Microsoft, do, for whom; how to go about using it; Member States cope with the rising cost of these challenges. Now we have Google and Intel taking major initiatives. how to present results and lessons learnt of healthcare. Demographic patterns a global financial crisis which for e-Health We have seen the rise of Open Source to a wider audience, so that people in across Europe clearly show an ageing underlines the challenge of investing to as an alternative model for reducing local communities can understand how population with more and more people keep our heads above water. the constraints of technology ‘lock in’. they can implement ideas and proposals in the age groups associated with higher Perhaps most importantly we have now to deliver better, effective, personal care proportional costs. Widespread increases The direction of travel is towards in the incidence of chronic disease are information-based care, built on evidence a testament to our growing ability to avoid and collaboration; more informed self- premature death – but also an economic management and responsibility for both and societal challenge that demands patient and citizen. The role of technology changes in delivery management. New will increasingly be to provide and support New business models and working drugs, new procedures, new equipment this information from the lowest level up, are emerging to help, but unit costs are deriving management, public health and relationships are now required where citizens rising rapidly and health infrastructures research information at the point of care struggle to cope with them. Beyond as an integral part of the care process. are given both choice and responsibility; this, there are new opportunities and We will progress by learning the lessons challenges – the concept of personalised of the last two decades, putting them where this is encouraged and informed; medicine, the use of stem cell technology, into practice wherever they are effective, genomics and many others will develop by understanding the complexity of where clinical professionals are supported and provide new ways of protecting and the healthcare process, following good preventing disease. It is a faint hope practice by decomposing complexity Highlights and informed to be more effective, to work indeed that the healthcare sector will into manageable components. We have become less complex, or that there will to work harder to bring stakeholders • e-Health is an enabler for healthcare transformation. as part of broader care teams looking be simple answers. While much can be together looking for synergies and towards more personal and personalised done by organisations like WHO and at common purpose, including and involving • e-Health is accepted as a concept but for it to deliver information needs European / national level, the hard reality industry, learning where best to invest, to be collected at the point of care, stakeholders need to collaborate and of improving the effective of healthcare with whom, in successful partnerships. there needs to be a transformation in mentality and more flexibility care; where regions, national governments services and the contribution of e-Health in approach. and politicians are confident enough to apply will increasingly be at personal, local and Our aspirations for this decade should community levels. include a much more common community • e-Health points towards a future of an information-based care, built on care model (irrespective of funding sources), the principles of subsidiarity. evidence and collaboration. Given these contexts and the current where information is an automatic by- economic crisis, where are we now product of the care process, e-Health with e-Health? We know there are no becomes an integral part of care, and simple answers or panaceas, no single where IT and medical technology converge immutable way forward. e-Health is just at the level of usefulness and value.
29 Health First Europe E-QUALITY IN E-HEALTH 3 I E-Health in Practice
provide in terms of healthcare are rapidly notably have to bring together excellence already exist. A perfect analogy is often Future of computer expanding. Although there is limited in disciplines such as physiology, biology, drawn with flight simulators. Seen as a toy knowledge about BME in some European mathematics and medicine. in the beginning of these developments Member States, recent projects are raising some 30 years ago, they have developed awareness of the potential of BME and its Physiology is the science about the into a training tool for pilots accounting for applications. One of the most promising functioning of the human bodies (various) more time of experience then real flights. modeling of physiology examples of ICT-based solutions, known components. It entails measuring the Nowadays, pilots are required to train for as the Virtual Physiological Human manifestation of an organ, a cell, a protein responses to rare events that may have (VPH), will finally take e-health into daily or subsystems of the body, as well as detrimental outcomes such as the failure clinical practice. This chapter provides an its interaction with other subsystems of a subsystem, an engine or even bad overview of the VPH, which is supported – rather than just watching their on/off weather. Similarly, biomedical engineering and disease in the by the European Union’s 7th Framework manifestation. Physiology is essential is developing model-based clinical tools Programme (FP7) in the ICT for Health to understanding the development of that will form the rational basis for clinical activities2. a disease, as most conditions are due to treatment in many, if not all, areas of the gradual disruption of a subsystem. healthcare. The VPH is intended to be a comprehensive Furthermore, such derailment often virtual physiological model of human physiology, which remains unnoticed, as compensation Throughout the past decades of human integrates knowledge about the various is provided by other bodily processes, genome research and development, there levels of body system organization – such a stronger stimulus or another organ. The has been a belief that for each disease as the body, organs, cells or proteins. body as a whole can appear to perform a molecule exists and many thought that human and its This comprehensive tool will allow normally, even if one of its parts is not unraveling the genome would bring cures a better understanding of the relationships functioning properly– but ignoring the for all diseases. However, it has become between processes across the different dysfunction would be like beating a tired increasingly apparent that the genome levels of physiological organization. horse to keep him running at the same only describes our molecular building pace. For example, if one kidney does not blocks and thereby, only represents application to medicine The VPH can be compared to popular function properly a person’s second kidney a small part of our complete system. applications such as Google Earth. The can provide compensation however, Such blocks interact with all other latter provides a complete view of the masking the problem at hand, which can systems necessitating understanding at world, a country, a city or specific streets. lead to permanent damage if not treated. both the cellular and organic levels. It is These are mapped, and images are The VPH will therefore integrate the obvious that something would go wrong incorporated at each level. Biomedical description of such functional interactions if an essential building block is missing. engineers and other basic and clinical between all the body’s subsystems. However, the lack of one building block scientists are developing the VPH by may be compensated for by others performing a similar mapping of the human The VPH itself is based on mathematical in many cases. The development of body and its components, but they are models that simulate a bodily process, a disease is not necessarily caused going even further. The level of precision which enables researchers to better by one single dysfunctional gene, but The theoretical debate on the definition of e-health of their work could be comparable to understand a normal physiological rather by a combination of multiple is far from being over – meanwhile, researchers are Google Earth adding individual houses, process and the development of dysfunctioning genes. Moreover, some bringing in new practical solutions to previously identifying individuals living in them as well a disease. The VPH has multiple genetic conditions may lead to diseases in unmet needs. as describing their social interactions and applications in the clinical arena: it can one person but not in another depending thus, showing how society is organized be used for diagnosis, for predicting the on the interaction with other factors such and functions at each level. The VPH is an outcome of a treatment or for training as lifestyle. Examples can be found in the By pooling the expertise of top level and highly innovative sectors. Today, undertaking of gigantic proportions that clinicians on delicate procedures without development of cancer and diabetes. Jos A.E. Spaan medical researchers, engineers and ICT “e-health” is often associated with data needs to be continuously updated, and it involving actual patients. Many model- European Alliance for Medical and Biological experts, Biomedical Engineering (BME) exchange, internet applications for will take more than a decade to complete it. based simulators, treatment robots and Let us go back to the essentials of Engineering and Science (EAMBES) is a discipline that is constantly searching self diagnosis and tele-monitoring. representative in HFE1 Biomedical Engineers behind this project diagnostic tools with clinical applications simulators and models: the mathematical for solutions to the needs of patients However, the opportunities that ICT could
1 http://eambes.org/ 2 http://ec.europa.eu/information_society/activities/health/research/fp7vph/index_en.htm 31 Health First Europe E-QUALITY IN E-HEALTH
muscle. The width of the hearts in the left Translation of the VPH approach to daily and middle panel is about 7 cm. The right medical care in combination with a wealth of top demonstrates the branching patterns micro and nano sensors that are presently This comprehensive tool will allow a better within a tissue area of a few millimeters being developed will provide improved with the smallest visible vessels 0.03 mm. health care accessible across boundaries understanding of the relationships between In the panel right bottom demonstrate within the European Community. The VPH the capillaries which have a diameter project shows the benefit of promoting processes across the different levels of of 0.007 mm. In the VPH approach the interdisciplinary research and Biomedical biophysical and biochemical events at Engineering, and we can hope that the physiological organization. all these different levels are integrated European Union will continue to support mathematically since these are mutual collaborations between the ICT community, dependent. Such models can then be physiology, biology and medicine. The VPH used to analyze ischemia, contraction is strongly supported by EAMBES which Figure 1: VPH approach illustrated for understanding the blood supply to the heart1 description of functions of subsystems In cases where the heart muscle or parts abnormalities, blood distribution problems aims at improving the health, wealth and at all levels. There are several types of of it, have to function mechanically at too and so on by coupling the relationships well-being of the people by the application models and the most important ones high a level, or on the verge of a failing between critical phenomena. of medical and biological engineering and include descriptive and predictive models. oxygen supply, its structure will adapt and sciences. The boundary between these two models cope with these situations by altering the Hence, a comprehensive understanding is difficult to clearly delineate, but both are organization of muscle fibers and cellular of all these mechanisms, and especially Jos A.E. Spaan useful to the VPH. In a predictive model, function. These structural changes have their interactions, are a prerequisite for EAMBES representative in HFE the mathematical relationships describing an effect on the electrical conduction an appropriate clinical response to any the processes of a system are based on of the pulse that the heart needs for an disease of the heart. Deviations of the biophysical or biochemical processes organized contraction. Age and function body systems at every level circulate essential to the system. In a descriptive of the heart’s atria effect the organization through the heart and eventually through model, the subsystem is considered of cells and fibers which may result in the body. a “black box” and the input-output atrial fibrillation- though not deadly since relations are based on heuristic analysis the heart has compensation mechanisms Biomedical engineers developing the of a large dataset related to function and for atrial dysfunction. However, this type VPH models process all physiological and mal-function of the system. of fibrillation allows blood clots to form in diagnostic information, in order to simulate the atrium - which may cause a stroke. the likely reaction of an individual patient to A good example of how both types The instances that can make these possible treatments or interventions. Such of models are integrally applied is the effects cause death are based on the tools will not only improve the quality of Highlights functioning of the heart, which is currently predisposition of the molecular machinery treatment of ill or injured patients. They could being studied in a FP7 project: euHeart3. of the heart4. also be used in preventive medicine, as to • e-Health is most often associated with data exchange, internet Although the heart has the simple task predict occurrence or worsening of specific applications, self diagnosis and tele-monitoring. of providing blood flow to all organs, it For example, the images in Figure 1 are diseases in people at risk e.g. through family • e-Health represents an ICT based solution to healthcare quality is a complicated system, which can fail reconstructed by using a self developed history. The VPH clearly has the potential to in many different ways. For example, cryo-microtome at the department of enable clinicians to better understand and enhancement. a heart valve may become leaky or lose Biomedical Engineering and Physics at diagnose some of the most misunderstood • The Virtual Physiological Human will finally take e-health into daily its flexibility due to calcification. In both the AMC, Amsterdam the Netherlands. body processes. Through the use of cases, the heart’s pump function becomes At the left the whole heart has been internet technologies, the VPH could clinical practice. less efficient. The wall of a coronary artery reconstructed from about 4000 images likely revolutionize the healthcare sector may become damaged and thickened in which resemble the middle panel. The as a whole. VPH-derived technologies will response, thereby obstructing the blood larger arteries run over the surface of the integrate, as we have seen, in all kind of flow through the microcirculation where heart. The middle panel demonstrates healthcare-related technologies. oxygen is needed for the cells to function. how arteries penetrate into the heart
3 http://www.euheart.eu/ 1 **With acknowledgements to Jeroen van de Wijngaard PhD and Pepijn van Horssen MSc at the 4 Bezzina CR et al. Genome-wide association study identifies a susceptibility locus at 21q21 for ventricular fibrillation in acute myocardial infarction. Nat Genet. 2010, 42(8):688-91. department of Biomedical Engineering and Physics at the AMC, Amsterdam the Netherlands. 33 Health First Europe E-QUALITY IN E-HEALTH 4 I E-Health and Labor Challenges
• the expected benefits of thee-Health E-quality for e-safety: movement such as optimization of services and continuity of care;
• National e-Health advancements like EFN members perceive that developments electronic documentation, patient and health professional cards, and in e-Health should focus on patient safety a nurses’ view on telenursing; and patient empowerment and support • the barriers faced towards implementation such as accessibility continuity of care throughout the patient’s and usability; and e-Health • concerns regarding future e-Health journey. developments including privacy and patient contact.
EFN members perceive that developments particularly useful in advancing the work users, which requires better marshalling of in e-Health should focus on patient safety of community nurses via enabling direct existing evidence to show that it works. and patient empowerment and support communication with patients in remote Finally, a critical assessment of financial The issue of e-Health has been in the limelight for continuity of care throughout the patient’s areas via webcam conferencing, exchanging flows in health systems to determine if some time in EU health policy as part of the e-Europe journey. Equally important, the nursing advice between community nurses and they act as incentives or disincentives for initiative. More recently, the European Commission in profession believes that ICT should more specialized nurses in hospitals, e-Health provision should be undertaken. safeguard citizens’ privacy with mandatory participating in discussions on various its Europe 2020 strategy and particularly in its flagship standards for managing confidential patient cases, and even transmitting Nevertheless, from a nursing profession initiative Digital Agenda for Europe, has put forth information. EFN Members support many patient data like x-ray, test results, or perspective, and in setting clear priorities, a strategy for smart, sustainable and inclusive growth, developments in their respective Member wound images. For example, in Croatia the three policy priority areas of e-health to develop an economy based on knowledge and States with the most notable being such technologies enable patients on could focus on Workforce, Education, and innovation. electronic health records and patient the various islands to have follow-up care Quality and Safety. cards. Electronic Health Records are while in Denmark telenursing has been Paul De Raeve currently in place in many MS such as instrumental in supporting individuals with Secretary General – European Federation Within this agenda e-Health is highlighted The European Federation of nurses Policy priority Spain, Lithuania and Finland with diabetes or chronic pulmonary diseases. of Nurses Associations (EFN) as a means of fostering quality of care and associations (EFN) welcomes and Workforce success. This is seen as enabling quicker independent living particularly for older supports actively the e-Health movement Nurses as the single largest professional access to vital patient information. In Currently, there are numerous projects, people and those suffering from long- and acknowledges in its Position and group in healthcare are asked to play countries like Malta, Germany, Slovenia policies and proposals on the matter term conditions. Similarly, the Council Policy Statements that nurses must a lead role in ensuring the provision of and Slovakia patients are provided with of e-Health from different stakeholders. of the European Union in its Meeting remain a part of this initiative as emerging effective, efficient and quality services. a “health ID card” which allows storing A combination of trend, strong political will, Conclusions in December 2009 call for health care challenges such as the Considering the continuous global of their health and illness information. and financial support from the industry has the Member States to commit politically ageing population, workforce shortages, shortage of nurses and the rising Moreover, e-Health services are seen as resulted in a mayhem of initiatives, widely and strategically to e-Health as one of increasing health care expectations and demands for efficiency, proper e-Health having enormous potential in facilitating dispersed and with overall coordination or the main instruments to enhance quality, rising health care costs are driving the solutions can act to support nurses’ information exchange between hospitals self-interest focus. Therefore, EFN calls access and safety in healthcare, particularly demands for a more efficient, accessible, work processes. Rapid access to patient and communities, streamline the delivery on putting in place mechanisms to foster by building confidence in and acceptance high-quality and affordable healthcare. information and prompt communication of nursing services, and reach out to dialogue, instil a sense of ownership of of e-Health services, bringing legal clarity During EFN 91st General Assembly, with other healthcare professionals can remote areas. EFN members have been reform and reduce resistance to change and ensuring protection of health data, October 2009, EFN Members reported on save valuable time which nurses can innovating in some cases taking best prior to e-Health design. Furthermore, and solving technical issues and facilitating the actions, initiatives, and concerns that redistribute to direct bedside care. The advantage of current technological advances national governments should make market development. the Nursing community faces on the topic nursing workforce is frequently asked to like internet enabled communications. the case for investment in e-Health of e-Health throughout the EU Member engage in numerous data collection or e-Health in this context has been applications together with the users, all States reporting on:
35 Health First Europe E-QUALITY IN E-HEALTH
data input activities for purposes of quality such data communication and analysis Policy priority Quality and improve quality of care across the Policy priority assurance and statistical estimations of thus relinquishing even more time for and Safety health care delivery system. Electronic Education indicators to healthcare effectiveness patient contact. We need to bring the Nurses need to review and share patient records can therefore act to strengthen EFN concurs with the Norwegian Nurses such as patients’ length of stay, infection nurse closer to the bed-side and e-health information in a standard and secure communication, and standardisation Organisation e-Health strategy 2009- rates, mortality etc. Properly developed can support this process. way. This is meant to ensure safety by in information exchange. The development 2013, arguing that if nurses are to practice ICT systems can potentially automate reducing care omissions and errors, of e-Health systems can also contribute knowledge-based nursing, they must greatly to prevention of disease and to have access to updated research and improving patient access to information quality assured knowledge. Electronic and health literacy. With the internet remote access to sources of knowledge being used increasingly as a source of such as nursing procedures, guidelines, information, nurses have an important role or research in digital databases would Equally important, the nursing profession to play in guiding and helping patients and act as a great facilitator to this while at their next of kin to handle the vast flows the same time keep nurses in the clinical believes that ICT should safeguard citizens’ of information they could potentially be area close to the patients. e-Health is met with. rarely included or described in nursing privacy with mandatory standards for curriculum and it is therefore a challenge to ensure that nurses receive knowledge managing confidential information. to utilise the opportunities offered by e-Health. Therefore, it could be explored how e-Health can be supported to be included in nurses’ Continues Professional Development to better prepare them for clinical practice.
In conclusion, the EFN believes that including the Continuous Professional The EFN is convinced that eQuality and in order for the e-Health movement to Development (CPD) programs. Social eSafety will mark the way to e-Health for succeed nurses and nursing practice must Cohesion policy would go a long way the benefit of the EU citizen as well as be involved in all stages of development in this respect particularly by providing for the profession of Nursing. Although Highlights and implementation of electronic the requisite resources. Also, integration e-Health has enormous potential for solutions. Moreover, it is crucial to ensure of international terminologies (such as Nursing – particularly in supporting nurses • e-Health represents knowledge based nursing and that requires from medical professionals to have access that developments are health-driven International Classification for Nursing deliver more efficient, safe, and quality to updated research. One example would be electronic remote access to sources of knowledge. and not market-driven, while e-Health Practice) in the electronic health record care – EFN Members are cautious of the devices should take into consideration would serve to achieve continuity, increase excessive use of e-Health in order not to • e-Health systems development contributes to overall health literacy rates and most of all to the preventive side both usability and user-friendliness communication and secure relevant and endanger personal contact with patients. of illnesses. and reflect multi-professional practice. reliable data about nursing practice and Nurses must be supported in their aim to Furthermore, healthcare professionals outcomes. Finally, it is seen as necessary remain close to the patients’ side. • e-Health can help in bringing the nurse closer to the bed side as it could automate data communication and and support staff require education and to develop EU quality and safety standards analysis. training for all aspects of e-Health. Nurses’ regarding new e-Health applications and Paul De Raeve IT skills must be identified as important and nursing information systems. Secretary General – European Federation integrated into all levels of education, of Nurses Associations (EFN)
37 Health First Europe E-QUALITY IN E-HEALTH 4 I E-Health and Labor Challenges
themselves. They will always remain the Elements of which Eurofedop thinks should be taken into account with the Can e-Health improve most important element in the provision implementation of e-Health, are : of healthcare services, which include the 1. e-Health is an instrument and offers many opportunities. diagnosis, care and treatment of patients. e-Health is there to facilitate their job and to 2. Trade unions must not adopt a conservative attitude in the discussion about the improve the overall efficiency of healthcare implementation of e-Health. They must be aware of the opportunities that reside quality of care in systems. In order to gain the full benefits in this field and see what can be realistically achieved. of e-Health, it is therefore necessary to 3. Nevertheless, the human and social aspect should be essential. train healthcare professionals in the use of the relevant e-Health tools and increase 4. Also, the ethical values that go with the development of e-Health need to be given the patients’ acceptance of these new attention. In spite of the openness of the new media, there are certain limits to an ageing europe? modes of healthcare. connectivity e.g. privacy. 5. Lifelong learning is a requirement for further implementation and it goes without The Recommendation on interoperability saying that workers must have a say in their training. Moreover, training says is a hot talking point amongst healthcare something about the worker and a flexible attitude towardse-Health can be professionals. expected from him or her. For now, e-Health development is weakened 6. Workers must have at their disposal all means, software and hardware, by which by a lack of harmonised standards and they can do their work in a modern way. by legal uncertainties. 7. Moreover, there is a danger of a new/further dualism in our society. The gap Eurofedop indicates the following points between knowledge and ignorance, between the haves and have nots, increases Europe’s ageing population risks overwhelming the to be investigated by the European in the information society. Not only at national levels, but also between the countries, national healthcare systems in the years ahead, and Commission: the differences are still too great and, in this context, especially the future member states of the European Union, need to be given more attention. Indeed, the ‘e-chain’ the financial pressures on our medical infrastructures • How many people in the EU are can only be as strong as the weakest link. will be further intensified by the deepening economic ‘technology literate’? 8. With the application of e-Health, social dialogue should offer an essential, more crisis. • Is there enough confidence in the suitable platform for discussion. technology? 9. e-Health can also create new health risks. Therefore, more attention needs to be Bert Van Caelenberg But although caring for the post-war What contribution can e-Health, and • Directly linked to the accessibility of Secretary General - European Federation given to these new health risks. ‘baby boom’ generation now entering associated novel telehealth services, e-health services is a possible digital of Public Service Employees (EUROFEDOP) retirement will be expensive, the digital including diagnosis, treatment and divide. Could this lead to a new form revolution in medical technology and monitoring at home make to cutting the of social injustice? patient information is set to change our costs of the chronically ill, who although healthcare economy. comparatively few in number already • What about the service providers and account for four fifths of Europe’s those working with the e-health tools? spending on healthcare? And what role • How are the personnel affected by the can and should the EU play in fostering use of more technological services? e-Health offers promising perspectives the spread of e-Health? for both patients and healthcare We clearly state that e-Health development necessitates further investment in the professionals but it cannot develop training of healthcare professionals. e-Health offers promising perspectives for both without further investment in healthcare patients and healthcare professionals but it cannot develop without further professionals themselves investment in healthcare professionals
39 Health First Europe E-QUALITY IN E-HEALTH Health First Europe Recommendations List of Contributors
Health First Europe believes that the ~ In alphabetical order ~
European institutions, in partnership 1. John Bowis, Honorary President Health First Europe with stakeholders, should: 2. Dr. Milan Cabrnoch, Member of the European Parliament, European Conservatives and Reformists political group, Member of the Committee on the Environment, Public Health and Food Safety Patients’ needs should remain at the centre of e-health policies. These 3. Bert Van Caelenberg, Secretary General, European Federation of Public Service Employees (EUROFEDOP) needs are primarily access and quality of care. 4. Dr. Rod Mitchell, International Alliance of Patients Organization (IAPO) Patients’ trust in e-health solutions will accelerate uptake of these new methods of healthcare delivery. To encourage patient uptake, the EU 5. Paul De Raeve, Secretary General, European Federation of Nurses Associations (EFN). institutions should support efforts aimed at awareness-raising, sharing 6. Dr. Andrzej Jan Rys, Public Health and Risk Assesment Director, DG Sanco, European Commission of information amongst patient groups as well as defining a proper
architecture for data protection specifically for health and ensuring 7. Anna Lefevre Skjöldebrand, Chairwoman of Eucomed’s E-Health Task Force and Managing Director of Swedish Medtech, a health-driven purpose in all developments. The Swedish Medical Technology Industry Association
Involve healthcare providers such as nurses, doctors, hospitals 8. Prof. Dr. Jos A.E. Spaan, European Alliance for Medical and Biological Engineering and Science Representative (EAMBES) and other carrers so to take a broader view of the needs of these groups in increasing e-health uptake. In particular how to underpin training 9. Dr. David Lloyd Williams, European Health Telematics Association (EHTEL) in e-health solutions so that it adds value to health professionals and 10. Patricia Lamas Sanchez, Alexandra Pedzinski, Anamaria Corca and Kei Ito – Health First Europe Secretariat (HFE) workers’ careers.
Market issues such as interoperability, standardisation and ICT definitions are critical in reaching solutions for patient needs. HFE supports the efforts of the EU institutions to resolve these issues based on the needs of the patient. The EU institutions must explore every possible competence granted under the Lisbon Treaty to investigate the barriers to e-health posed by inadequate reimbursement and funding systems in Member States and local health systems. These should help identify best practices and highlight innovations in funding - such as systems which provide that health professionals are properly paid while working with e-health technologies and remote services.
Demand that all Member States have an e-health ROADMAP/strategy which looks at the e-health uptake, resource optimization, reimbursement opportunities and overall architecture for e-health delivery.
The EU should allocate funds for e-health proportional to current needs and continue to assess the need for greater e-health funding based on current and projected trends in areas such as the ageing population, growing proportion of chronic, elderly and immobile patients and the prevalence of denied access to e-health solutions. Improved Healthcare Through Innovative Solutions
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Tel: +32 (0)2 62 61 999 Fax:+32 (0)2 62 69 501 www.healthfirsteurope.org Email: [email protected] Improved Healthcare Through Innovative Solutions