Nicola Mountford

The European Network for the Joint Evaluation of Connected Health Technologies (ENJECT) is a COST action that brings together an international consortium, including business and revenue modellers, clinicians, technologists, engineers, economists, ethnographers, and health researchers to help society to answer one question – how to connect therapies, patients, and care-givers to deliver optimum health results in an era of stretched resources and increasing demands. This report, which has grown out of an ENJECT survey of 19 European countries, examines the situation of Connected Health in Europe today. It focuses on creating a clear understanding of the current and developing presence of Connected Health throughout European healthcare systems under five headings: The Policy Environment, Education, Business and Health Models, Interoperability, and The Person.

Quality, privacy, and safety, major elements of Connected Health, were evident policy concerns in the Connected Health context. Attention is paid as to how the healthcare systems are evaluated. Evaluation methods and responsibilities range from macro state-level evaluation to more dispersed local evaluation. The constant evolution of European healthcare is reflected in the changing methods of evaluation in countries such as Norway, Greece, Malta, and Serbia.

The vast majority (almost 80%) of respondent countries have eHealth strategies in place or are working on implementing such strategies. In general, e-prescribing and Electronic Health Records are the most common forms of Connected Health activities throughout Europe. There is a clear distinction between patient and consultant usages of these forms of Connected Health. A major issue, especially with the creation of Electronic Health Records, has been ensuring that they are safe and secure and that privacy is attainable. Health Insurance companies also make use of electronic patient records for the storage of and quick access to patient records.

Privacy is recognised as an important factor in the development of accessible patient databases. While two thirds of respondent countries rely on national data protection legislation to protect such databases, others have been more proactive and generated eHealth-specific legislation. Croatia, Germany, Slovenia, the UK, and Macedonia have all begun to recognise the need to draw up legislation which prioritises the protection of patient information recorded through these types of technologies. Public statements and political instruments directly address the topic of Connected Health, helping to protect patients while increasing their awareness of the Connected Health options. Websites and manifestos dedicated to health related activities in various countries are at the centre of this public awareness. Additionally, political parties in some of the respondent countries identify eHealth and Connected Health as an area for improvement in their own manifestos.

Of the nineteen respondents to the survey, fifteen countries contributed specific information on university based programmes that help to ensure that healthcare professionals are aware of and in a position to utilise Connected Health. While few of the programmes focus solely on Connected Health, its inclusion in health and biomedical informatics courses ensures that it will be a part of these future healthcare providers’ understanding of the provision of healthcare. Awareness of Connected Health and the development of health literacy is not solely a concern at third level. Health literacy is a challenge across Europe as a whole. Ad hoc health literacy programmes have been proven to work in some countries, but the public’s infrequent exposure to these forms of literacy, such as television and poster campaigns, means that their benefit is often not fully felt in the long term. The role that Connected Health can play in the improving health literacy does not seem to have been realised, with most countries still relying on leaflets and information booklets to improve patients’ understanding of medical and health related issues. For those countries who actively and regularly promote health literacy, this is done through school systems and specific research communities.

Presenting the business and health models of the healthcare systems in each of the ENJECT respondent’s countries helps to develop an understanding of the level of priority placed upon Connected Health. The majority of European healthcare systems are organised through cooperation between private and public bodies. Their funding and finances primarily come from the public sector, with revenue created through direct and indirect taxes. eHealth models within these healthcare systems’ business models vary significantly across the region and are gradually becoming an accepted part of a healthcare system’s general business models.

To attain an understanding of its healthcare model and patient care pathways, each country has provided a case study of common illnesses. The difference in each country’s method of treatment of the same illness shows how each of the systems operate, with a clear focus on the funding of the treatment in each of the instances.

eHealth Records and digital prescriptions top the list of technically integrated systems at national and
regional levels enabling electronic systems to work across a variety of healthcare contexts. The unification of language and classification systems emerged as a major issue when considering the interoperability of eHealth.

Generally, the level of patient involvement in the design, delivery, and development of health related research programmes is on the increase. With 30% of the respondent countries having a system in place which encourages the inclusion of patients in the design and development of healthcare, this can be seen as a clear starting point for creating even more connected healthcare systems throughout Europe.

In summary, confusion abounds in the area of Connected Health – around wording, application, models, and systems. It involves a complete transformation of the healthcare system in a long-term play that requires dedicated resources and political will. Many of these elements are difficult to capture with data points being largely qualitative and non-comparable. Different countries are at different stages of readiness in terms of Connected Health – both in terms of its research and its implementation. The evaluation criteria employed in different circumstances and different geographies across Europe are neither clear nor standardised. The majority of states and regions are so engaged in the process of ensuring interoperability at a regional or national level that they have little time or attention left to focus on the thorny issue of international interoperability.

We recommend an agenda for future research in Connected Health for Europe that creates a shared language around health records and a database that would facilitate the development of a Connected Health or eHealth scorecard. We would support a common evaluation framework for Connected Health implementations that is multi-faceted, ranging from technology robustness to regulatory compliance, from economic sustainability to user acceptance, and including both qualitative and quantitative measures. There is evident confusion as to the application of existing rights in the context of Connected Health. We recommend an approach specific to eHealth that helps citizens, researchers, companies, and healthcare providers to understand how we live safely and privately in an era of healthcare data. We suggest that studying how some of the ENJECT countries have done this and distilling learnings and best practice from their experience could help to better design future guidelines and interpretations.

Coordinated, integrated care requires connected " inputs, delivery, management and organization of services related to diagnosis, treatment, care, rehabilitation and health promotion " (Grone & Barbero, 2002). Connected health (CH) offers a key building block as a " paradigm shift, looking after the individual and community health in a process that speaks to the health journey of the person, through the entire lifespan, leveraging a variety of technologies to do so " (ENJECT, 2016). However, CH is failing to reach its full potential – and therefore failing in its contribution to the realization of integrated care. We conducted a multidisciplinary literature review across business, technology and healthcare journals, triangulated with a survey of CH experts from academia, industry and clinical settings representing 19 European countries (ENJECT, COST Action TD1405). We hereby identify key vectors for CH and related drivers of change: Policy and regulation There is a gap between national policy/strategy statements and local or regional implementation, despite 80% of European countries having a national CH strategy and political support of CH. Currently, 2/3 of European countries rely on generic privacy, security or other legislation whereas customised regulation would better recognise the uniqueness of health-related data and its need to flow within specified channels. Technology and interoperability Interoperability is an ongoing process in healthcare across Europe with ePrescription and Electronic Health Records leading the field while personal health systems adoption varies. Again privacy and security concerns come to the fore, as well as usability and ease-of-adoption related issues. Training and education Training programmes are beginning to incorporate CH elements to equip future healthcare leaders to fully exploit CH's potential, however this is neither widespread nor in-depth. An emerging topic is education of health professionals in skills needed to participate in the design and adoption of CH solutions. Health literacy programmes targeting the general public are largely ad hoc and rely on unconnected methods such as leaflets and booklets. Business and revenue models Europe's healthcare business models typically involve public and private providers while relying largely on public funding. CH reimbursement and revenue models are limited and non-standard. Innovation at both service and process levels is slow to diffuse and reimbursement models stymied due to a lack of standardised evaluation methodologies or agreement on what constitutes value. Value creation models in health are primarily built to address medical conditions, rather than prevention and self-care. Citizen and Clinician engagement Actors considered across both academic papers and survey vary – from industry giants, start-ups, researchers and social entrepreneurs, to government and regulatory agencies. Academic authors speak of users, patients, customers, funders and payers, highlighting the complex nature of CH markets. On the practice side, inclusion of patients in the design and development of connected health solutions relies on voluntary methods in 2/3 of European countries. We lack methods-to include a wider range of citizens, and to develop skills for both care professionals and citizens to fully participate in design and development of CH solutions. Conclusion Key enablers for CH span multiple directions and scales.

As markets become increasingly complex it is more and more important that we understand their underlying market networks. While much research has been conducted into the interrelationships and impacts between the firm and the network, less attention has been paid to the study of the whole network itself. Understanding the origins, structures, and potential futures of whole market networks is vital to the understanding of whole markets. This is particularly the case in light of the multiplicity of societal and institutional conditions attached to an increasingly globalized economy. The insertion of technology into incumbent markets such as finance or healthcare causes market and network evolutions that firms must understand if they are to navigate them safely. Traditional business research methods are, however, often locked to the firm perspective through case study approaches, or quantitative network analyses. Despite some recent methods that take a more situated, biographical approach, a bird's eye view of the whole network remains elusive. Anthropological methods offer assistance-both in making sense of the evolution of the network within the market context, and in understanding the intricacies of such networks. Unfortunately, the concept of network analysis remains disconnected across disciplines apart from some exceptions such as Berthod, Grothe-Hammer and Sydow's (2016) combining of social network analysis with ethnographic research methods to produce 'Network Ethnographies.' We build on that approach, combining market network research methods with ethnographic research methods, illustrated through case examples from our research in the connected health domain. We illustrate ethnography's potential for in-depth capture of network detail, showing how ethnographic methods can be used to understand each player's position and function within that system, as well as reflecting the life and culture of the whole network.