International overview of digital health record systems

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Digital Health Evidence Review: This section provides comparisons of countries that have EHRs, PHRs and portals and examples of how these systems are implemented.

How have electronic health records (EHRs) and personal health records (PHRs) been implemented internationally?

Internationally, the core objectives for implementing information and communication technologies in healthcare are to [1]:

a. Increase the quality and efficiency of care
b. Reduce the operating costs of clinical services
c. Reduce the administrative costs of running the healthcare system; and
d. Enable new models of healthcare delivery

The implementation of shared digital health systems that link patient health care data across multiple sources has the potential to facilitate significant advancements in healthcare efficiency, quality and performance in countries where these systems are introduced. Shared information can also support clinical research, effective public health planning, and the evaluation of healthcare interventions. [1]

Despite different implementation approaches, there are similarities in the reported factors that are critical for success. These include the commitment and involvement of all stakeholders, good organisational management, and interdisciplinary teams with information technology (IT) experience. [2] For all countries, the implementation of EHRs and PHRs is an iterative process that evolves over time as population needs shift, and as technology evolves to meet those needs.

Moreover, there is international variation in policy amongst countries who have implemented PHRs, leading to variation in areas such as opt-in or opt-out approaches, consenting for the secondary use of personal data within systems and the ability to control various privacy features such as blocking access to records and documents, deleting documents and having a clearly visible audit trail of people who have accessed an individual’s record.

Australia’s My Health Record System

My Health Record Australia

Australia’s approach to the provision of a personal digital health record for all citizens is the My Health Record system. This secure online summary care record allows an individual to access their own health information, control its content and control who is able to view it with a range of privacy and access controls. The information in the My Health Record system flows from connected and conformant clinical information systems in hospitals, general practices, pharmacies, specialists’ rooms, and pathology and radiology providers. It can be securely shared between these providers depending upon the privacy settings of the individual My Health Record recipient. It also provides access to a patient's MBS and PBS data, the Australia Immunisation register and the Australian Organ Donor Registry.

Like Australia, a number of countries have now moved towards the provision of a digital health record that individuals can use to access, manage and share their health information, and that of others for whom they are authorised, in a private, secure and confidential environment. Countries with similar national PHRs to Australia’s My Health Record include, for example, Austria and Sweden. Examples of the adoption and use by individuals of similar PHRs are provided throughout this review to illustrate the experience of both consumers and healthcare providers.

Global Digital Health Partnership

An international collaboration of governments and government agencies responsible for the delivery of digital health systems as well as the World Health Organization (WHO) convened in February 2018. The purpose of the Global Digital Health Partnership (GDHP) is to facilitate global collaboration and co-operation in the implementation of digital health services. The GDHP shares insights, evidence and policy to support the delivery of digital health services including information around their national approach to shared health information and citizen access. [3] As of August 2018, participants include Argentina, Australia, Austria, Brazil, Canada, Hong Kong SAR, India, Indonesia, Italy, New Zealand, Kingdom of Saudi Arabia, Singapore, South Korea, Sweden, Ukraine, the United Kingdom, the United States and the World Health Organization. The GDHP provides an opportunity to compare international approaches to the use of personal health records and associated policy considerations such as standards and the secondary use of data.

Highlights in International Case Studies

The timelines below show examples of EHR and PHR development and implementation from Australia, Austria, Denmark, England, Estonia, Singapore, Sweden and the US. Each example highlights the changing nature of implementing digital health records.

Timeline Australia
  • Personally Controlled Electronic Health Record (PCEHR) launched in July 2012 and was opt-in registration process for individuals who wished to use the system. [4]
  • The system was relaunched as My Health Record in March 2016.
  • My Health Record trials were held in 2016 that tested both an opt-in and opt-out participation model in four large trial sites. Support for the opt-out participation model amongst clinicians and consumers was strong, and an opt-out rate of approximately 2%.
  • The Australian Digital Health Agency was established in 2016 and appointed as the System Operator for the My Health Record system.
  • A move to national expansion of the My Health Record to every Australian was announced in the 2017 Federal Budget. In 2018, the 3 month national opt-out period was confirmed to commence from mid-July 2018. [5]
Timeline Austria
    • ELGA Act which is the legal basis for the national eHealth infrastructure, regulating aspects such as:
      • Participation in ELGA for citizens is voluntary (opt-out)
      • Participation in ELGA for healthcare service providers is mandatory
      • Data protection and security
      • Timeline for stepwise implementation
    • Patient portal went live one year before the first clinical data was stored in ELGA to allow patients to opt-out. It allows patients to access their health information stored within ELGA. [6] Patients can hide or delete documents from their record or opt-out of the system. [7]
    • The next phase of rollout includes the connection of GPs, outpatient radiology and laboratory departments and pharmacies to the e-Medication application. [8]
    • The next ELGA application will be ‘e-Immunisation’ for all Austrian citizens, targeted for rollout from 2020 and allowing for:
      • Electronic recording of vaccines administered to a patient
      • Providing immunisation status of patients
      • Notifications to patients about pending or upcoming vaccinations
      • Analysis of the data for public health
Timeline Denmark
  • National portal launched [9] that serves the purpose of facilitating electronic communication between other care practitioners and patients. [10]
  • In 2007, E-Journal was launched which contains information from hospitals. [11] GPs and citizens can access information through the national portal. [10]
  • In 2010, there were 15 different EHR systems across the 5 regions of Denmark. By 2014, this was reduced to 6 systems across the 5 regions. [12]
  • In 2018, a new digital health strategy was launched with a focus on areas such as engaging citizens as active partners, ensuring timely knowledge exchange and high data security and trust. [13] Moreover, nearly 1.8 million citizens are visiting the portal each month. [14]
Timeline England
  • In England, the Summary Care Record (SCR) was introduced in 2008 and led by the National Health Service (NHS). It is a summary of GP record information that is intended for use in emergency or out-of-hours care. [15]
  • A 2010 report [16] highlighted significant shortfalls of the SCR implementation and because of this the ongoing implementation of additional EHRs was assigned to primary care trusts.
  • A locally led approach was also implemented for patient online access to GP records. The NHS launched resources and provided support but each GP clinic was responsible for implementation. Patients need to go via their GPs to receive access to these online systems.
  • In 2018, the scope of the SCR was enhanced [17] to also include information about long term health conditions, relevant medical history and personal preferences about care. [18] The Spine supports the IT infrastructure for health and social care in England and joins together over 23,000 healthcare IT systems in 20,500 organisations. [19]
  • Moreover, the upcoming NHS App (to be launched in December 2018) will give patients access to their health record as well as the ability to book appointments, order repeat prescriptions and manage long-term conditions.
Timeline Estonia
  • In 2008, Estonia implemented a comprehensive, country-wide record sharing system. [20]
  • The patient portal was opened in late 2009 [21] with information about the portal and use driven by healthcare providers speaking with patients. [22]
  • E-Prescriptions launched 2010. [23]
  • As of July 2018, the integrity of electronic medical data is assured by digital signing and stamping with blockchain technology being used to assure the integrity of system access logs. [24] The next phase will be adding another layer of blockchain integrity assurance to medical records.
Timeline Singapore
  • National Electronic Health Record (NEHR) launched in 2011 and was voluntary for patients and for healthcare providers. [25]
  • High levels of adoption occurred amongst public healthcare providers but uptake in the private sector was limited. [26]
  • The government announced in 2017 its intention to introduce new legislation that would make it mandatory for healthcare providers to use the NEHR. [27]
  • Other countries such as Estonia, Finland and Romania already have this legislation in place.
Timeline Sweden
  • Patient Data Act developed in 2008 which allowed individuals to have online direct access to their medical records. [28]
  • Patient accessible electronic health records were developed locally in counties in Sweden. [29]
  • National information exchange platform implemented to enable a single point of connectivity for client applications. [30]
  • All regions in Sweden have provided their citizens with access to their record across five different EHR providers. [31]
Timeline United States
  • The passage of Health Information Technology for Economic and Clinical Health (HITECH) Act in 2009 promoted meaningful use of EHRs throughout the US as a national goal. [32]
  • HITECH established what was later named the Medicare and Medicaid Electronic Health Records Incentive Programs (also referred to as the Meaningful Use program). [33] The programs offer incentive payments to eligible healthcare providers and hospitals that adopt and demonstrate meaningful use of EHRs.
  • The key objectives for the three stages of this program are data capture and sharing, advance clinical processes and improved outcomes. [34]
  • Additional programs created by the HITECH Act included workforce training programs to support education of health information technology professionals, funding to support the creation of demonstration communities of clinicians, hospitals and consumers on how meaningful use of EHRs can achieve measurable improvement.
  • Canada and Australia [35] also provide incentives to healthcare providers who adopt and use EHRs.

What is the legislation that guides EHRs and PHRs?

The legislation that established the My Health Record system, initially named the Personally Controlled Electronic Health Record, passed into Australian Federal Parliament in 2012. [36] It provides a legislative framework that describes the roles and functions of the System Operator; a registration framework for individuals and entities such as healthcare provider organisations to participate in the system and a privacy framework specifying which entities can collect, use and disclose certain information in the system.

In 2015, the Australian Government conducted an independent review of the system, which found there were strong benefits for a national shared electronic summary care record. This finding is supported by all the key health care peak bodies and consumer groups. Participation trials were run in 2016 which provided My Health Record on an opt-out basis to approximately 1 million Australians in NSW and QLD to evaluate this model, compared to the opt-in trials being conducted in WA and VIC.

In 2017, based on the independent evaluation of these trials and the evidence that providing My Health Record to all Australians would greatly accelerate the safety and clinical benefits of the system for patients’, the Australian Government announced that the My Health Record system would expand by switching to an opt-out model of participation by the end of 2018.

Many countries have either implemented or taken significant steps towards implementing EHR or PHR systems. One resource that aims to summarise this information is the Atlas of eHealth. [37] There is wide variation globally in the legislation that governs digital health and many aspects are not specific to EHRs. Some countries that have EHRs do not implement new legislation specific to the electronic records but rely on existing general health records and data protection legislation to govern EHRs. [38] Some key examples of specific EHR legislation are:

  • Mandatory use of EHR by healthcare providers: countries with this legislation in place typically require healthcare professionals to update or share health information in EHRs. This policy is recommended only if all other obstacles for participation have been addressed. [38]
  • The content of EHRs: this legislation is typically specifically applicable to shared EHR systems. [38] This type of legislation is often in addition to general rules around the content of health records that do not distinguish between electronic and paper-based versions.
  • The use of common terminology: countries with this legislation require the use of standard terminology and clinical coding systems in their EHRs. However, it is important to note that in practice some countries apply terminology and clinical coding systems in the absence of specific legislation. [38]
  • Patient’s consent to create EHRs: there are two different types of participation models for consent from patient’s to create records. First, an opt-in approach where patients must actively give consent for creation of the record or an opt-out approach where a record is created by default, unless a patient objects. Outside of these participation models, many countries apply data protection laws that do not require the patient’s consent to process health data. [38]
  • Patient’s right to know who accessed their EHR: countries with this legislation in place enable patients to view information that shows which healthcare providers and organisations have accessed their record. Similar to the above legislation, many countries directly provide this information to patients on an online platform in the absence of specific legislation. [38]

Summary

For all countries, the implementation of EHRs and PHRs is an iterative process that evolves over time as the population’s needs shift and as technology evolves to meet those needs. The policy and legislation that guides EHRs and PHRs varies internationally. This means that in each country the implementation journey is unique. It is important to acknowledge these differences when comparing digital health services internationally.


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