Roadmap to Successful Digital Health Ecosystems: A Global Perspective

By Evelyn Hovenga

Roadmap to Successful Digital Health Ecosystems: A Global Perspective presents evidence-based solutions found on adopting open platforms, standard information models, technology neutral data repositories, and computable clinical data and knowledge (ontologies, terminologies, content models, process models, and guidelines), resulting in improved patient, organizational, and global health outcomes. The book helps engaging countries and stakeholders take action and commit to a digital health strategy, create a global environment and processes that will facilitate and induce collaboration, develop processes for monitoring and evaluating national digital health strategies, and enable learnings to be shared in support of WHO’s global strategy for digital health.

The book explains different perspectives and local environments for digital health implementation, including data/information and technology governance, secondary data use, need for effective data interpretation, costly adverse events, models of care, HR management, workforce planning, system connectivity, data sharing and linking, small and big data, change management, and future vision. All proposed solutions are based on real-world scientific, social, and political evidence.

• Provides a roadmap, based on examples already in place, to develop and implement digital health systems on a large-scale that are easily reproducible in different environments
• Addresses World Health Organization (WHO)-identified research gaps associated with the feasibility and effectiveness of various digital health interventions
• Helps readers improve future decision-making within a digital environment by detailing insights into the complexities of the health system
• Presents evidence from real-world case studies from multiple countries to discuss new skills that suit new paradigms

• Language: English
• Publisher: Academic Press
• Release date: Feb 12, 2022
• ISBN: 9780128236390

Book preview

Chapter 1: Transforming health care

Evelyn Hovengaa,b,c    a Digital Health, Australian Catholic University, Melbourne, VIC, Australia

b eHealth Education Pty Ltd, Melbourne, VIC, Australia

c Global eHealth Collaborative (GeHCo), Melbourne, VIC, Australia

Abstract

Revolutionary changes are needed to reform healthcare delivery systems globally to realise the vision of healthcare access for everyone, no matter their location, facilitated and enabled by effective national digital health ecosystems. This chapter introduces the reader to widely recognised drivers and desired future outcomes. Foundational principles adopted as the focus for this text are identified. This includes the need for sustained leadership, committed investments, effective governance, a national technical framework, and a description of the digital health ecosystem characteristics. Innovation blind spots that have the potential to undermine digital health transformation need to be identified, considered, and included as roadmap components. Principles to be adopted, some examples of existing foundations, and value proposition drivers are introduced, followed by a description of a digitally enabling health environment. The chapter concludes with the identification of key requirements for global and national action to be incorporated in a digital health roadmap which needs to consider numerous fragmented influencing factors. Six foundational concepts representing desired outcomes are introduced.

Keywords

Value proposition; Ecosystem; Government leadership; Innovation; Roadmap; Infrastructure

Issues and challenges

Today’s global health systems consist of:

•multiple data silos,

•chaotic and fragmented data,

•poor data integrity,

•an inability to consistently and reliably share or link data,

•poor knowledge management strategies leading to operational inefficiencies,

•resource wastage, and

•significant delays regarding the widespread use of new knowledge.

All of the above are the result of continuing competition between large technology providers, insufficient collaboration, and business models promoting ‘vendor lock-in’. This makes healthcare service providers dependent on their technology providers to maintain their system’s currency whilst creating a perceived inability to change technology providers. The recent global pandemic has demonstrated the value of global collaboration.

Important challenges that need to be addressed include the realisation that the time has come for a major transformation to better engage with this new digital era to enjoy the significant benefits this offers. This requires global leadership and a lot of multidisciplinary collaboration. Another challenge is uniform standards adoption within and between different health-related entities to overcome incompatibility between different platforms and devices in use. Many digital healthcare support solutions in use, lack relevant legal norms to mitigate risks regarding personal information and privacy breaches associated with data transfer and data linkages. In addition, some users have difficulty using currently available technologies [1].

A major impediment to progress is a poor understanding of the many scientific principles associated with the design, development, implementation, and use of health information systems, including electronic health records, and the importance of effectively managing our health data and knowledge assets. There is an abundance of ‘myths’ reflected in the scientific and a lot of ‘grey’ literature, including social media, due to a poor understanding of digital health complexities. The literature reveals ambiguity resulting from, for example, the non-differentiation of standards, specifications, criteria, and guidelines. We aim to bust popular myths.

Another major issue is the monitoring and evaluation processes adopted for digital health interventions. A poor understanding of computer science foundations and evolutions over time, and the scientific principles of software engineering, makes it difficult to assess the quality of the evidence presented, yet many high-level decision-makers are making use of questionable evidence with significant costly repercussions. There is an urgent need for clinical specialists to fully engage in digital health by governing their own knowledge domain in a manner that facilitates sharing and transparency, supporting evidence-based practice, timely adoption of new clinical advances, and patient-centred care.

Revolutionary changes are needed to reform healthcare delivery systems globally. There is a need to realise the vision of sustainable national health systems and healthcare access for everyone, no matter their location. This vision is best facilitated and enabled by effective national digital health ecosystems. Attaining effectiveness is likely to become more and more difficult over time without the facilitation of an effective, high-level foundational infrastructure supporting a global digital health ecosystem.

This text explores current limitations, barriers, interdependencies, and possible solutions for this to be achieved. We argue for the need to adopt an open knowledge-based ‘platform’, a public health enterprise system architecture that any health information technology developer can deploy. We would like to see the adoption of new healthcare solutions. This requires a new way of building healthcare IT systems. Healthcare systems’ architectures need to ensure that data can exist independently of any particular application so that data from different sources become comparable. This also encourages fast plug-and-play application developments, thus stimulating local development and economic growth.

Some may argue that we’re well along the way; others point to the many inconsistencies and the lack of obvious progress. As was demonstrated by the recent COVID-19 pandemic, there is a need to have the ability to make rapid changes. For example, data transfers and staff communication flow changes associated with new health service delivery methods, resource allocations, material and supplies logistics, and patient pathways. What does a digital healthcare ecosystem need to look like to be sustainable in meeting the healthcare delivery needs of any nation’s population?

The WHO/ITU toolkit provides three key criteria that collectively form the recipe for success [2]. These are as follows:

1.Sustained senior government leadership and committed financing for digital health. These are considered to be prerequisites for a successful digital health strategy.

2.Effective governance mechanisms at all levels, that engage stakeholders, who have clearly defined roles, to ensure efficient decision-making for a national digital health strategy.

3.A national ICT framework that facilitates alignment between health and ICT sectors, to promote connectivity and interoperability, establish common standards, and enable appropriate policies and regulations in digital health.

These criteria were adopted by its members. Several, current, internationally influential organisations were reviewed to assess the current global status. Findings regarding global and national leadership and their overall performance towards their ability to meet these criteria are presented across several of the following chapters.

What is an ecosystem and how does this apply to digital health?

The word ‘ecosystem’ has traditionally been used to describe a community of living interdependent autonomous organisms interacting with each other, within any physical or natural environment. Such ecosystems are sustained by conserving both energy and matter for a diverse range of organisms, each operating within their own niche or role and extensive recycling. Two characteristics tend to lead to greater resistance and resilience in the face of change:

(1)a high diversity of organisms, and

(2)autonomy, known as ‘low coupling’ in the IT world.

This resilience sustains the ecosystem in the face of disturbances or disruptive events, thus creating greater long-term stability and a balanced adaptive system. Ecosystems reflect constantly changing and evolving dynamic processes. These fundamental concepts are applicable to any type of ecosystem, where success is determined by how well the autonomy and adaptiveness of its diverse entities function within that domain and its physical environment. Relationships between diverse entities within an ecosystem determine their collective interdependencies.

Health and well-being is a fundamental concern for everyone. Every living individual needs to function within their own ecosystem consisting of their genetic and biological make-up, physical location, family and social connections, local community, prevalent societal, political, commercial, and economic factors. The plethora of personal and environmental interdependent factors collectively determine any individual’s ability to meet their fundamental human needs and contribute to their society’s economic productivity.

Any national healthcare ecosystem is made up of a diverse range of stakeholders, each with a unique role to play. Many of these stakeholders are also part of a diverse range of global ecosystems, such as international professional organisations, the World Health Organization, or other global entities associated with the health industry. This ecosystem is also constantly changing and evolving with an information or knowledge sharing focus. There are numerous interdependencies between these stakeholders. A vast number of interactions (complex systems) collectively make up this ecosystem.

Digital transformation is about making use of digital technologies to facilitate and optimise all supporting infrastructures and types of interactions within any healthcare ecosystem.

There is a need to, for example, enable existing healthcare delivery system silos to link with each other’s healthcare delivery system silos within a region. Primary care delivery services need to be able to digitally link with systems managed by their secondary and tertiary care service providers. Its purpose is to facilitate integrated care via networks across professions and organisations where care responsibilities are distributed amongst members of multidisciplinary teams. Achieving such integration requires different management competences from those promoted as requirements for traditional management [3]. It requires strong non-hierarchical leadership supporting innovation.

Primary and community care services are best placed to provide patient-centred, preventative, holistic, well-coordinated care within a community, with a focus on achieving care continuity for individuals managing multiple co-morbidities requiring any number of support services [4]. Continuity of care requires relational (patient and one or more care providers), management, and informational continuity to be effective. Integrated care models require coordination between policy-makers and managers at regional and local levels; single entry to social and healthcare services; case management; an individual care plan; an autonomous functional assessment instrument; and a shared electronic health record [5]. Primary health and social care needs to be accessible to any citizen in order to optimise population health which in turn supports national productivity. As has been demonstrated by the management of the COVID-19 pandemic, telehealth delivery strategies have a significant role to play.

Digital health roadmap development process

Developing a roadmap to achieve thriving national digital health ecosystems requires both a top-down approach and a bottom-up approach, simultaneously but within an agreed national framework. There is a need to identify agreed high-level value propositions as these apply to all contributing stakeholders from a global or jurisdictional perspective, and to consider individual healthcare provider roadmaps. These need to be explored and documented to identify current foundational infrastructure gaps. We are well aware that a plethora of bureaucratic, supportive, or obstructing overarching infrastructures exist at all levels of health care—many of these need to be transformed. We need to consider the place of individual stakeholders within existing local, regional, and global communities of various types, as well as infrastructures that collectively make up a digital health ecosystem.

A roadmap details how best to fill identified gaps or transform current practices. We have the skills, the know-how, and the technical capability. Their collective use is dependent not only upon their adoption but also on the workforce capacity. All digital transformations need to build on actual, and be in tune with desired, global digital ecosystem infrastructures. The WHO and OECD have reported requirements, based on terminology standards; others have identified research collaboration needs and/or the need to enable greater use of standard clinical trial protocols. We need to examine if the many current arrangements continue to be fit for purpose. In addition, decisions need to be made regarding investments and their continuing support for requiring the use of any set of existing standards, guidelines, and catalogues, many of which are likely to be unfit for purpose within the current technology landscape in this digital era.

Such a global context provides valuable information and knowledge. We need to explore, consider, and recommend innovative and transformative solutions to stimulate new investments and overcome known barriers and limitations. Before we develop a roadmap to enable a digital health ecosystem to emerge, we need to consider what a comprehensive health services landscape would look like. An agreed vision of a successful outcome can be used as a guide to implement the many roadmap components. Widespread global adoption of a knowledge-driven platform requires software developers to think differently. Traditional database schema will no longer matter. In such an environment, application data will be committed and accessed via relevant service APIs rather than any direct access to a database.

This text explores the impact of international and national drivers on digital health adoption, population health, and patient safety, within the context of national healthcare systems and service delivery performance. In so doing, there is a need to consider how these outcomes are influenced by international or national political, cultural, financial, technical, structural, social, industrial, academic, global value propositions and economic factors. Another key factor is the individual egos and life philosophies of those with positions of power or in leadership positions. Any one of these factors can inhibit progress and may influence interdependencies between those who need to work collaboratively in any number of various kinds of partnerships.

We intend to expose innovation blind spots that have the potential to undermine successful digital health transformation. As noted by Adner [6] p. 3

Even the most brilliant innovation cannot succeed when its value creation depends on other innovations.

Successful digital transformation is very much dependent upon numerous innovation ecosystems where ‘success of a value proposition depends on creating an alignment of partners who must work together in order to transform a winning idea to a market success’ [6]. Establishing such alignments within a global health context is extremely challenging.

Our proposed roadmap aims to describe how best to deliver a successful national digital health ecosystem able to realise a well-defined vision. This ecosystem needs to be structured as an enabler to meet desired value propositions and the global health industry needs as a whole. A successful digital health ecosystem needs to be of benefit to the world’s population. Health issues we need to resolve include [7]:

•An increasing demand for services, including mental health and community care, that is overwhelming healthcare providers—most notably nurses and midwives;

•Patients who are desperate to take control of their own health decisions;

•Payers struggling to keep healthcare costs down;

•Ability to mine the information available with confidence as to quality and meaning transmission of that data.

The issues identified above can best be addressed by well-connected healthcare systems, enabled by a digital health ecosystem, capable of meeting the information needs of all decision-makers, with the intent to ensure better health outcomes for all. Resolving these issues requires all data users to know how to assess the quality and utility of available data and information.

Value-based health care

There is a growing interest in value-based health care where patient health outcomes determine financial rewards for providers. Value-based health care requires an ability to measure meaningful outcomes against the cost of delivering healthcare services. Digital health ecosystems enabling the collection, management, sharing, linking, and processing of clinical and health data, information, and knowledge are essential to successfully realise desired value propositions. These data-related activities require digital assistance that facilitates the coordination of all events associated with individual patient journeys and best practice progress support. This digital assistance is dependent upon access to an Internet-connected platform able to provide all required e-services. The delivery of healthcare-related e-services, along with supporting intercommunication amongst authorised healthcare professionals and the sharing of virtual healthcare records, is in turn dependent upon the technical connectivity and system interoperability at every level.

With the rapidly increasing amount of new clinical knowledge, it is impossible for individual health professionals to rely on memory and past experience when making decisions about recommending the use of specific treatment or care protocols [8]. Many practice guidelines are made available in PDF formats, some many pages long. Such guidelines need to be presented in computable formats enabling system integration, to support care pathway engineering and decision support systems. Algorithms used for such purposes need to be able to use up-to-date knowledge services, be governed, and be openly available. Clinical knowledge needs to be curated, stored, and disseminated in computable formats, made available where and when required, and be usefully presented to those who need to make clinical decisions.

The electronic collection of data and the use of digitally supported health data processing, able to support task and information flows determine how well our many and varied value propositions are able to be realised. We need to consider how the use of any combination of digital technologies can best support patient-centred healthcare service delivery and guide individual patient journeys, based on an individual’s unique characteristics in their primary location. This requires personalised healthcare assistance, improved preventative care, timely interventions, the collection and evaluation of practice-based outcomes that inform future practice and provide new knowledge. All of these functions are dependent on the choices made regarding technology support.

Key research findings following a review of current evidence and ways forward [9] indicate that the creation of sustainable and effective health data ecosystems requires the adoption of the following principles:

•Value propositions to be represented by health data in the context of interdependencies and interactions between stakeholders (actors) and sectors based on their relationships and resource availability;

•Building on existing efforts and momentum to address data quality and technical requirements;

•Making the most of recent data protection advancements and the sharing of data models and frameworks;

•Workforce capacity building so that health service professionals are in the best possible position to get the most out of health data;

•Increasing public awareness, acceptability, and engagement with health data.

Success measurements

Success needs to be measured within the context of suitable high-level supportive infrastructures. It can be measured by:

(1)The degree to which common desired short- and long-term beneficial outcomes are being realised following the digital transformation, such as [10]:

(a)Citizen access to national and local data and technology services that enable them to see and manage their own records; undertake a wide range of transactions with care providers; and increasingly manage their own health, care, and well-being.

(b)Care professionals’ timely access to the information, data, analysis, and decision-support systems they need to deliver safe and effective care.

(2)The availability and use of workforce capacity and enablement to meet ongoing changing requirements.

(3)Strong managerial leadership within individual organisations and at all levels within the health system hierarchy, building upon established foundations, enabling them to progressively move forward and make continuous improvements.

Existing foundations

There are numerous international and regional eHealth, digital health, health professional, health research and standards development networks. Collectively, the organisations making up these networks contribute greatly to a plethora of ever-increasing developments and innovations, forming part of our current global digital health ecosystem. These network initiatives have a 60- to 70-year history. The International Medical Informatics Association began as a new Technical Committee (TC) of the International Federation for Information processing on Medical Information Processing during the 1960s under the leadership of Dr Francois Gremy [11].

Dr Lindberg, who became the Director of the US National Library of Medicine in 1984, published the first text on the computer and medical care in 1968 [12]. Early hospital information systems focused on the provision of departmental administrative support. Their growth in the United States resulted in the promotion of patient-centred, bedside terminals and system integration approaches during the 1980s [13, 14]. This early work has greatly influenced current large proprietary US enterprise EMR systems, who acquired multiple systems from smaller companies over the years, and whose large systems are now extensively in use in many countries.

One of the earliest research topics of the European Commission’s Research and Development, Advanced Informatics in Medicine (AIM) Framework, included electronic health record systems. One of its 1989 funded projects, the Good Electronic Health Record (GEHR) project, was a precursor for the development of, what is now known as, the openEHR specifications as governed and managed by the not-for-profit (NfP) openEHR Foundation and its large global community of interest, openEHR International [15].

This early initiative was followed by the European Union’s adoption of an eHealth action plan in 2004 when all member states were called upon to develop tailored national and regional eHealth strategies to primarily meet their own needs with the intent for all to develop and use the same standard of health care and support patient and healthcare provider mobility [16]. Considerable progress has been made by many around the globe, with similar research and development initiatives and incentives, to establish the many prerequisite requirements for the establishment of a global digital health ecosystem [17, 18].

Many of these research outcomes have been implemented, have been built on, and are in constant use. We continue to learn from each other’s real-world experiences, whilst developing various solutions towards improving our data sharing and linkage capacity. We now know that the adoption of semantic data exchange protocols is essential. A key finding from one systematic review is that semantic data exchange can only be successful using a common platform or a common system architecture of which the Reference Model (RM) is fundamental [19].

Gartner believes that truly effective and sustainable open architectures will need a capability for vendor-neutral data persistence, such as utilizing a common schema or set of archetypes and rules for managing structured and unstructured data. Providing open messaging standards (for example, FHIR®, HL7) for data exchange in specific use cases will only go so far in meeting the architectural challenges of digital citizen-centric care delivery [20].

One component example in use in the health industry is the openEHR Foundation’s reference architecture [21–26] that has adopted a two-level modelling approach making use of its archetypes (formalisms) freely accessible via its clinical knowledge manager [27]. Its open platform establishes the totality of technical conformance points used for the development of purchasing tender documents and internal development. This also enables local entities to develop niche applications to adhere to this platform’s technical requirement, and in the process enable their content to be accessible by other applications and retain its meaning.

Most independent commercial research efforts have been directed towards a variety of devices and applications commonly referred to as the Internet of things (IoT), big data, data analytics, and artificial intelligence. For example, heart rate measures, sleep tracking, ECG, and blood oxygen level monitoring can be provided from patients to physicians through the latest Apple