We welcome this book, which presents selected contributions to the pre-conference symposium on Personal Health Monitoring (PHM) and Ethics and future areas of Personal Health Monitoring, held in Rotterdam, prior to the 11th World Congress of Bioethics. The majority of papers present the outcomes of the European PHM-Ethics project. In addition, some further invited contributions deal with important issues strongly related to the project's primary objectives and outcomes. Therefore, the contributions in this book cover a broad spectrum, ranging from the technical set-up of PHM systems to ethical issues raised by PHM applications, and will be of interest to all those concerned with improving the provision of healthcare worldwide.
Towards Smart and Sustainable Healthcare in Europe
In Europe we are facing a paradox: while governments try to curb public spending, the demands on our healthcare systems continue to rise.
The smart use of technologies and innovation can help to address the challenges healthcare systems are facing today, such as an ageing population, a shortage of healthcare professionals and a lack of financial resources.
Information and Communication Technologies (ICT) have already made a strong contribution to these goals, but much more remains to be done. eHealth technologies such as personal health monitoring devices enable the delivery of higher quality and more efficient services to European citizens, irrespective of where they are, for the convenience of both patients and practitioners. This is made possible by granting online access to personal health information, by supporting personalised therapies and by implementing innovative telemedicine services.
The Digital Agenda for Europe, adopted by the European Commission in 2010, has defined a number of objectives, including the implementation of interoperable electronic patient records – which can be safely accessed and exchanged across the EU as well as the widespread deployment of telemedicine by 2020. To reach these objectives, the eHealth Network, which is composed of Member States' representatives, will cooperate to ensure wider use of eHealth including EU wide interoperability of electronic patient summaries.
Yet regardless of increasing evidence of the benefits technology can bring, the healthcare sector has been hesitant to embrace the digital revolution. Instead, it has stuck to its traditional methods and models.
A New eHealth Action Plan
In this context, the Commission launched a new eHealth Action Plan on 6 December 2012, which will provide a roadmap for 2012–2020 and is designed to bring the benefits of digital solutions into healthcare systems and lift the barriers that are preventing Europe from providing smarter, safer, patient-centred health services. It will also support Member States in bringing forward interoperable eHealth services within and between national healthcare systems.
In practical terms the eHealth Action Plan contains actions to give patients and key healthcare workers in the field, such as nurses, carers and doctors, the skills and confidence to use these new technologies, thus leading to more meaningful time between doctors and patients and less unnecessary appointments, thanks to the better use, among others, of ePrescription and telemonitoring. For patients, this means spending less time, effort and money on unnecessary hospital or GP visits while allowing them to take a more pro-active role in the management of their health. The plan also focuses on:
• Linking up the devices and technologies so that they can communicate with each other and spread the benefits of digital healthcare throughout the system, thus avoiding waste and repetition;
• Investing in research towards the personalised medicine of the future, so that future generations can benefit from even more patient-centric care;
• Giving small businesses a helping hand when starting up on this complex landscape by providing funding opportunities and visibility;
• Providing clarity where there is legal uncertainty: this is particularly the case for new technologies such as apps where issues such as safety, quality and transparency remain grey areas.
Health apps could prove to be an enormously important tool to promote consumer and patient empowerment and self-care. They represent an important technological tool to help inform and support patients and consumers in the self-management of their health. They bring valuable health information to our fingertips. The best of these apps enable us to act swiftly and decisively on self-care issues.
But as more and more citizens start to compile and to take control of their own health data using apps and other devices it is essential to ensure user confidence in these services and establish appropriate safeguards. Effective data protection is vital for building trust in eHealth, in particular in respect to the use of cloud computing infrastructures and services for health and wellbeing data processing.
Ethical issues need to be built into eHealth solutions, ranging from apps to remote monitoring, utilising a user-centric and user-driven innovation process. The ethical considerations that should be observed or taken into account in this domain can be deduced from binding instruments like the Charter of Fundamental Rights and the Convention on Human Rights and Biomedicine, as well as from opinions such as those of national ethics committees and the European Group on Ethics. The European Group on Ethics issued an Opinion in 1999 on the ethics of healthcare in the Information Society, emphasising the principles of privacy, confidentiality, “legitimate purpose”, consent, security, transparency, participation, and education. It is one of the points of guidance that has stood the test of time and is still relevant for those developing or deploying new technologies today. We intend to discuss issues in ethics, the law, data protection, and the internal market relevant to eHealth innovation at the eHealth Ministerial and Week in Dublin in 2013 and hope to engage with stakeholders.
The Action Plan provides a new focus on mobile health (mHealth). Building on the recommendations of the eHealth Task Force, the Commission will examine a range of issues, including quality and transparency, in this fast-moving and developing area.
To increase further legal clarity and support the wider deployment of eHealth, the plan is supported by a legal overview of how current EU legislation applies to cross border telemedicine. This overview takes the form of a Staff Working Paper, which provides responses to the main issues a healthcare practitioner would face when seeking to provide telemedicine services across-border:
• Does s/he also need to be licensed/registered in the Member State of the patient?
• What are the conditions for the legitimate processing of health data?
• Will the telemedicine act be reimbursed?
• What is the liability regime applicable in case damage arises as well as what are the relevant jurisdiction and law?
This Action Plan marks above all a commitment to change in order to better target the challenges Europe is increasingly facing. This need to change is already reflected in the European Innovation Partnership on Active and Healthy Ageing as 3000 stakeholders have committed to improve the quality of life of 4 million European senior citizens between now and 2015. This includes 20 regions of Europe which will deploy telemonitoring programmes for chronic disease management and integrated care that meet the needs of older persons and enhance system efficiency.
To do this, they are learning from the experience of others and adapting it to their own circumstances. This means that they can save time and money and avoid making expensive mistakes. As a result, thousands of people with chronic conditions and multimorbidity (but also their carers) will not have to travel back and forth between doctors, hospitals and care institutions and will be able to monitor and self-manage their own condition and health care choices.
This grass roots approach shows that even in a time of crisis, we can make smart investments towards a sustainable future. It is our responsibility to take the changes to the next level for the benefit of today's citizens and future generations.