Introduction

Welcome to the Global Digital Health Partnership’s (GDHP) International Insights on Individual Engagement (the I-E) which highlights global individual engagement experiences from around the world. Reviewing the I-E can help provide ideas that may work well for your country. The I-E is a tool to advance the GDHP vision to “facilitate global collaboration and knowledge-sharing in the design and delivery of digital health services to support high quality, sustainable health and care for all.” (1)

In 2023, the GDHP Secretariat, then led by the United States of America’s Assistant Secretary for Technology Policy/Office of the National Coordinator for Health IT (hereafter ASTP), worked with GDHP members to develop this resource focused on individual engagement through digital health. The I-E provides information to GDHP members and the public on efforts to advance global individual engagement. Health equity is incorporated by design throughout the I-E.

According to the World Health Organization (WHO), patient engagement “refers to the process of building the capacity of individuals, families, carers, as well as health care providers, to facilitate and support the active involvement of individuals in their own care, in order to enhance safety, quality and people-centeredness of health care service delivery.”

GDHP members providing information and feedback for the I-E include:

We use the term “individuals” throughout this resource which could also mean patients, humans, clients, users, or other terms in countries.

Audience

The I-E is written for GDHP members and the public to provide information on advancing individual engagement. The I-E may be helpful to a variety of individuals, including but not limited to:

  • Policy makers,
  • Healthcare organizations,
  • Clinicians,
  • Healthcare professionals,
  • Patient groups,
  • Researchers, and
  • Others who lead digital health initiatives to engage individuals in their health and care, including electronic health record (EHR) and individual portal initiatives.

Member Stories from Around the Globe

A distinctive feature of the I-E is its collection of real-world member stories submitted by GDHP members and included in From Around the Globe sections throughout this resource.

These member stories highlight individual patient engagement initiatives from GDHP members, including:

  • successful experiences,
  • lessons learned from efforts,
  • use cases,
  • plans, roadmaps, and frameworks, and
  • guiding principles and policies.

We note that terminology used by members in these sections may differ. We have included references to underlying documents, such as statutes, regulations, and web resources when available.

How is the I-E Organized?

The I-E is organized around broad topics contributing to individual engagement, and it includes links and examples for further exploration.

  1. Introduction
  2. Governance establishes the framework for individual engagement
  3. Digital Health Literacy increases individuals’ abilities to use technology for digital health
  4. Individual Enrollment allows individuals to register for digital health capabilities such as a portal to advance individual engagement
  5. Individual Access to Health Records allows individuals to view, download, and send their health records
  6. Health Records Integration allows individuals to share their records with others and integrate them with various systems and services
  7. Individual-to-Provider Communication allows individuals and providers to communicate with each other digitally
  8. Virtual Care delivers health services to individuals across distances, including telehealth and telemedicine
  9. Shared Decision Making enables health professionals and individuals to collaborate in health decisions
  10. Member Stories and Other References

You can read the I-E from beginning to end or review chapters of interest to you.

How Does Health Equity Relate to Individual Engagement?

According to the WHO, “Equity is the absence of unfair, avoidable, or remediable differences among groups of people, whether those groups are defined socially, economically, demographically, or geographically or by other dimensions of inequality[.]” For example, this may include inequality based on sex, gender, race, ethnicity, ability status, or sexual orientation. As the WHO notes, “Health is a fundamental human right. Health equity is achieved when everyone can attain their full potential for health and well-being.” (2)

Digital health may improve health equity considerations. However, as highlighted by McKinsey & Company, “rapidly advancing technology may also exacerbate exclusion, introduce unexpected biases, widen the digital divide, and continue to leave some populations behind.” (3) It is essential to ensure digital technologies do not advance unintentional health equity consequences.

Health equity is critical to build into individual engagement efforts by design, especially with digital inclusion. The United Kingdom’s National Health Service (NHS) noted that, “digital inclusion means having easy and affordable access to a suitable device with sufficient data and internet connectivity, and the digital skills and health literacy to use them safely and confidently.” (4) We encourage you to consider the diverse needs of everyone. Therefore, we discuss health equity throughout the I-E instead of in its own section. Even in technologically advanced societies, there are people who experience data poverty as they cannot afford to pay for connectivity. (5) A GDHP Evidence and Evaluation Work Stream white paper, Benefits Realisation: Sharing Insights, cites a case study from the United Kingdom describing “population groups who are at risk of digital exclusion.” (6) You can further review the study to learn about the digital inclusion strategies and links to health equity, individual engagement, and digital health literacy.

New Zealand is an example of a GDHP member building health equity into their digital health initiatives by identifying vulnerable populations. They recognize how populations live as families and community groupings more than as individuals, and New Zealand seeks to remove barriers they face.

New Zealand | From Around the Globe

Increase Attention to Family and Community Groupings

Ensuring equity requires meeting the unique needs of New Zealand’s communities (7) for whom the world of data and digital services is not a level playing field for many reasons, including high deprivation such as poverty, living conditions in remote and crowded urban areas, limited access to data and digital devices, lack of trust, and limited digital literacy skills.

Ensuring New Zealand’s most vulnerable communities and consumers’ lived experiences inform the design of data and digital products across Te Whatu Ora (Health New Zealand, the government’s website) is imperative to achieving equitable health outcomes.

New Zealand’s current models of care are based around individuals, but most of its vulnerable populations live as far and wide family and community groupings in multi-generational households where a few persons support many other persons. Working directly with these communities provides insights into their strengths and how data and digital products might bolster their unique health and wellbeing approaches and help meet obligations under the historical treaty, Te Tiriti (8).

This will help New Zealand focus effort and delivery on those most at risk of being left behind as health and wellbeing services increasingly transform with digital technology. If barriers to digital technology are removed for such groups to participate fully, everyone in New Zealand will experience improved health and disability services.

 

United States of America | From Around the Globe

Health Equity into Digital Health

The United States of America recognizes the importance of embedding health equity into digital health efforts. ASTP indicates “it is vital that we mobilize health IT to identify and mitigate disparities where applicable, and even more important, that we not allow health IT to perpetuate or even magnify health equity gaps endemic to our system today. With this in mind, we at ASTP are focusing on the concept of ‘health equity by design,’ in which equity is a core design feature of our collective health IT endeavors. This means that policies, projects, and technologies, among many other efforts, are looked at early on through the lens of equitable health care access, treatment, and outcomes.” (8) ASTP is ensuring its policies and projects advance equitable healthcare regardless of race, gender, gender expression, disability, sexual orientation, economic status, or location, in alignment with the priorities of the federal government.

The I-E is a tool to advance the GDHP vision to “facilitate global collaboration and knowledge-sharing in the design and delivery of digital health services to support high quality, sustainable health and care for all.” (1) By designing health equity into individual engagement and digital health, GDHP members can empower individuals, caregivers, advocates, individuals, and the care professionals who serve them.

Disclaimer
References or links in the I-E to any commercial product, process, service, organization, or company do not imply endorsement or recommendation by the GDHP. The GDHP is not responsible for the contents of any external website linked to this website.