2. Open eGovernment in General Practice Health

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Open Government is a government with high levels of transparency and with an emphasis on government accountability. The concept of open government suggests that the public should have access to government-held information and that it is informed of government proceedings. It includes expectations for increased participation and collaboration of citizens, businesses, employees and other entities in government proceedings, through the use of modern, open technologies. The term Open in this context means that data has not only to be accessible but also to be understandable in order for citizens to know how the data can be relevant to them. At the same time, eGovernment refers to the use of computers and other devices to provide information and services to the public. In turn, eGovernance extends the scope of eGovernment to include citizen engagement and participation in governance.

This document focuses on open eGovernment services that are aimed for general practice healthcare. General practice provides person centred, continuing, comprehensive and coordinated whole person health care to individuals and families in their communities. As a sector, general practice healthcare, its practice teams, and their primary healthcare relationships comprise the foundations of an effective health care system. Health systems can greatly differ around the world in general and in the EU in particular, and public administrations play different roles in each of them. In some countries, health care is free and universal while in others, patients have to pay partially or completely for their health care. Moreover, practitioners can belong to the public sector and/or the private one.

Ultimately, open eGovernment services in this sector are twofold: on the one hand, there are health services provided to citizens and, on the other hand, there are services provided to the different practitioners involved in the general practice sector (such as doctors, nurses, care providers, pharmacists, etc.). Furthermore, service providers should also take into account the requirement of cross-border solutions, both at inter- and intra-national levels since differences in this sector are not only between Member States, but also between regional administrations from the same country.

The sensitive nature of health data makes data protection especially important in this sector. Openness in solutions must be developed carefully and must ensure that available open data are conveniently anonymised. Citizens also need to have full access to their own data.

3. Some available and emerging solutions

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This section discusses some of the emergent solutions that we have come across while doing desk research on existing eGovernment services in this sector. We have focused on those that are leading the way or show a high level of innovation, and provide examples for some implementations.

Solutions for citizens

• Electronic prescriptions. In some Member States, a doctor can issue prescriptions for medicines electronically, and pharmacies can dispense medicines according to them. Innovative applications in this area include medicine surplus reuse and control of the delivery of doses to a patient.

  Examples: In Finland, the national Prescription Centre contains all the electronic prescriptions and the corresponding dispensing records entered by pharmacies. Based on the information held in the Prescription Centre, any pharmacy can dispense medicines to citizens. Spain has also e-prescriptions, but there is no national repository and so far, only a few regions have interconnected their prescription systems.

• One-stop shop. In some countries, a single entry point to access open eGovernment services for general practice is available together with other health services.

  Example: Denmark has an entry point to a number of interactive and transactional services for citizens, including electronic booking of appointments with a general practitioner, viewing appointments with the healthcare services, receiving a reminder prior to visits, sending secure emails to healthcare authorities and renewing drug prescriptions.

• IoT applications. IoT applications for general practice include the use of sensors for different health-related measures such as heartbeat, blood pressure, temperature, insulin and glucose levels, etc. These applications may warn citizens themselves, doctors or emergency units when those measures reach alarming levels.
• Personalisation of websites and services. Personalisation of general practice websites and related services that are adaptive to the user profile and requirements.
• Chronic patient healthcare services. Applications for the empowerment of chronic patients by managing their healthcare on their own.
• Telemedicine. The use of ICT to provide general practice healthcare from a distance can be used to improve access to medical services when rural settings, lack of transport, lack of mobility (e.g., elderly or disabled citizens), decreased funding or lack of staffing make access difficult. It can also help in critical care and emergency situations. Telemedicine allows early diagnosis and adequate treatment of chronic patients.

Solutions for practitioners and caretakers

• Patient-data repositories. Repositories where healthcare units from public and private health systems can enter and look up patient records in a secure way and where patients themselves are also permitted access; additionally, patients can decide who else may access their medical data.

  Examples: In Malta, patients and their doctors can access the following health data: case summaries, medicines entitlement, lab results, and medical image reports, among others. Portugal’s health network, Rede Telemática da Saúde, allows access to clinical information and promotes the communication between certified health professionals, contributing to an improved access to medical care. Spain’s digital clinical history, Historia Clínica Digital of the National Health System allows citizens and their general practice doctors to look up their medical reports3.

• Online registration of practitioners and patients. These kinds of services can be useful for practitioners both in order to register themselves and in order to register patients or insured people into the corresponding health system.

  Example: The Croatian Health Insurance Fund allows the electronic submission of applications for registration, deregistration, and change of information of an insured person.

• Services for caretakers. Applications and services that offer support to caretakers of citizens such as people with dementia.

  Example: In Norway, there is the Action project that stands for Assisting Carers using Telematic Interventions to meet Older Person’s Needs. The main aim is to enhance their quality of life via the use of user-friendly information and communication technology in their own homes.

• Services that apply big-data and artificial-intelligence technologies. The statistical analysis of (anonymised) health data can help practitioners learn about prevalence of a disease, drug (mis)use, etc. Emerging technologies such as data mining and deep learning can go further and provide insights to possible illness causes, help in diagnosis, and suggest treatments. Natural language processing of health records and drug specifications promotes the development of innovative applications for health practitioners.

• Services that exploit open data. Health open data is made available in a way that can be exploited through services that make it accessible to different stakeholders in this sector. For instance, a service to visualize data on general-practice centres (e.g. waiting time and other performance measures) could be developed.

  Example: The Danish government provides researchers access to anonymous open data (including health indicators and hospitalization data) on individual patients from the 1970s to the present day.

• Services that use shared vocabularies and linked data. Standardised terms and their relations to other terms and among different vocabularies can in general improve search and retrieval of healh-related information. Furthermore, open data published as linked data facilitate the connection of different information sources, e.g. medical records and information about diseases and drugs, and give rise to new and innovative applications that improve the search and relevance of retrieved information.

  Examples: The NHS in the UK currently uses SNOMED CT as the underlying vocabulary for annotating clinical health records and for browsing those records.The Observational Health Data Sciences and Informatics is a program that aims to integrate (with the support of shared vocabularies) and publish a large amount of observational data, and through large-scale analytics allow the evaluation and detection of diseases.

eIdentification

• eHealth (insurance) cards. Most Member States have particular identification schemes for the health sector. They issue cards for their residents, which, in many cases comprehend also the European Health Insurance Card (EHIC), and have different associated services depending on the country. With interoperable systems, health cards can be used across different health systems and employed for services like payment of medical costs.

  Examples: Austria’s Chipkarte e-card is a system that connects patients, providers, hospitals, and pharmacies’ through Europe. Belgium and France’s cards enable direct settlement of certain medical costs, while other costs are reimbursed through mandatory/complementary private social insurances.

• eID cards as health-data repositories.

  Example: Finnish citizens have the possibility to request having their health insurance data included in their electronic ID card in order to use a single card.

4. Some available and emerging business and data models

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This section presents business and data models that may contribute to the development and uptake of open eGovernment in the general practice sector, as well as models that open eGovernment may foster.

• Government and general practice healthcare stakeholders that initiate, design, or implement together open eGovernment services. This implies the provision of co-creation spaces and of the job positions required for this.
• Public employees and organisations that assist stakeholders in the access and use of open eGovernment services regarding general practice. This assistance includes in-person attention and call centres.
• Public employees and organisations that assist stakeholders regarding compliance with laws, directives, regulations, etc. regarding general practice.
• Personnel that support general practice services in eGovernment websites by doing tasks such as live chat, forum moderation, email communication, health alerts, and community management in general.
• Companies, organisations and public administrations that create (innovative) eGovernment solutions that exploit open data, not only health-related data, but also data in other related areas such as temperature and pollution levels.
• Companies that offer consulting services to public administrations on technology roadmaps, in order to enable open eGovernment.
• Companies whose products or services can contribute to health and illness prevention (e.g. sport centres) that establish agreements with health administrations.

6. Social considerations

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This section presents a list of social considerations that should be taken into account for open eGovernment in the general practice sector.

• People can object to the openness of health data:
  • Some people have concerns on the misuse of the data, e.g. insurance companies can overcharge people living in certain areas.
  • Some people do not want to give their data for free when private companies can profit from them. Will selling one’s own data become another way of making money? Will people pay for health services with their data?
• Patients expect an in-person relationship with their doctors and may think that digital services will make this more difficult.
• The digitalisation of government services for general practice will change the labor force requirements in this sector. For instance, with online appointments less staff will be needed at health centres for this task whereas other jobs will be generated to support the online services. Governments need to plan on this and implement policies regarding education and new job profiles for their staff.
• By addressing such an important aspect as health, open eGovernment services for general practice can help to improve the quality of life in general.
• The development of open eGovernment services for general practice healthcare should not contribute to increase the digital divide.

7. Recommendations

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This section presents the list of recommendations for the provision and take-up of open eGovernment applications to enhance accountability, transparency and trust in the general practice sector.

• User-centered design

  In order to create valuable and useful open eGovernment services for the general practice sector, developers should attend the needs and expectations of all stakeholders. These services should be developed around how users can, want, or need to use those services, rather than forcing people to use a service that does not meet their expectations.

• Universal accessibility of services

  Considerations for universal accessibility of services are fundamental for open eGovernment services in general, but when it comes to health they are even more so. Moreover, many people with disability issues need health services on a more frequent basis than the average citizen.

• Ubiquitous services (mobiles, tablets and other devices)

  As mobiles are fast becoming the main device through which people access the internet, it is imperative that more services are provided through mobile friendly websites or apps that would open access to a greater number of citizens and businesses.
  Moreover, public administrations should be up to date on new developments of devices and eGovernment services should be responsive.

• Meeting the once-only principle

  The once-only principle states that a user should not have to supply the same information more than once to public administrations. Open eGovernment services should offer this option to users whenever possible. However, people should not be forced to apply it.
  The use of open source software, open standards and open API will result in more open and scalable ICT systems for public service delivery. This will pave the way for the integration of systems and the implementation of the once-only principle for general practice.

• Service personalisation

  Personalisation is a way to improve user satisfaction by tailoring a service to specific individuals or segments of individuals’ needs. Open eGovernment services should be customisable and adapt to the user or group of users’ profile. Both citizens and practitioners would benefit from personalised open eGovernment services’ interfaces. When it comes to citizens, these services could be proactive and, for instance, advise a person of preventive checkups for certain diseases.

• Services in multiple languages

  Language support should include not only the translation of website content but should also include the translation of forms and documents. This is under-developed and it is hindering access to services by non-native speakers.
  When it comes to health, understanding the service is critical. The possibility of using it in the person’s native language would be very helpful. The lack of this option in general-practice services does not only hinder access to services by non-native speakers, but can also have severe public health consequences.

• Cross-border services

  Cross-border provision of services is based on the freedom of movement of services, so that nationals of a EU Member State are able to pursue their activities as citizens or businesses in another EU Member State.
  In general practice healthcare it is important to guarantee cross-border health services and to implement a secure electronic interchange of health information. Interoperability is a precondition for implementing cross-border services.
  The existence of specific identification for health services in many Member States can, on the one hand, facilitate the once-only principle in general practice services in those countries, but, on the other hand, make it more difficult for other open eGovernment services in those countries and across borders to comply with the principle.

• People’s access to their own data

  Allowing citizens to "own", use and amend their data could go a long way to make them more invested in the services they use and more trusting of government. In health care services, user’s access to their own data is very important, especially for patients regarding their health data.
  This recommendation is especially relevant for the once-only principle. Control on one’s own data should go beyond all or nothing; people should be able to decide what data can be shared and with whom.

• Openness of data and services

  Data and algorithms transparency is essential for digital trust and appropriation of emerging technologies. An important shift deals with control of the data used and the intelligibility of algorithms.

  Openness of data implies the use of standards for data management, digital services and metadata, as well as shared concepts and terms (when available). Openness of services implies the use of open source software where there is no risk of vendor lock-in and code may be reviewed and maintained by the parties involved in the development of solutions.

  Public administrators and other stakeholders have to be especially careful when dealing with health data, the use and processing of these data have to be clearly stated, consent has to be specifically asked for, and data have to be anonymised when provided to others. eDemocracy services

• General practice healthcare

  is a field that public administrations can use to engage users’ participation. For instance, citizens and practitioners’ opinions can be very important when deciding on a new general practice centre because they are the ones that will benefit (or not) from it. This participation can help governments decide, and citizens and practitioners increase their trust in the public sector.