Pan American Health Organization

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Public health in the information society

Introduction

With a view to eliminating or narrowing the existing digital and information divide through massive expansion of Internet access, the adoption of new information and communications technologies (ICTs), and the production and dissemination of a wide variety of content, in 2003 the specialized telecommunications agency of the United Nations—the International Telecommunications Union (ITU)—held a global event known as the World Summit on the Information Society (WSIS) (). This summit marked a milestone in the relationship among governments, the private sector, civil society organizations, the United Nations and its specialized agencies, and the general public. WSIS focused on the social aspects of the so-called information society, and the Declaration of Principles adopted at the event called for promoting, strengthening, and protecting the flow of information and the production of knowledge resulting from the constant interaction among individuals, communities and institutions (). The fulfillment of this principle would help to foster the sustainable development of citizens and improve their quality of life, in keeping with the purposes and principles of the Charter of the United Nations ().

The information society is a concept encompassing various characteristics that highlights the existence of cultural, cognitive, technological, and generational points of convergence that interact among themselves with information and technologies as essential elements of human, social, and institutional relationships. Three fundamental characteristics have been defined:

  • Information is seen as an economic resource that makes it possible to increase efficiency and stimulate innovation at various levels of government and society;
  • Steady growth in the use of information by the general public, with citizens using it as a means of exercising their civil rights and responsibilities; and
  • The development of an information and knowledge management sector within various governmental, academic, and private spheres.

The 2030 Agenda for Sustainable Development includes provisions relating to access to information, education, Internet use, and the adoption of ICTs in 10 of its 17 Sustainable Development Goals (SDGs). In particular, Goal 16, “Promote peaceful and inclusive societies for sustainable development, provide access to justice for all and build effective, accountable and inclusive institutions at all levels,” underlines the importance of ensuring public access to information and protecting fundamental freedoms, in accordance with national legislation and international agreements ().

The Pan American Health Organization (PAHO) believes that public health activities carried out in the framework of the information society can contribute actively to the achievement of the SDGs. For that to happen, such activities should be underpinned by five guiding principles: (1) open science, (2) open data, (3) unstructured data, (4) new skills, and (5) e-government, as shown in Table 1.

Table 1. Guiding principles for public health in the information society

Guiding principles Strategic action lines
Open science Promote research
Promote policies and projects for knowledge translation
Strengthen knowledge-sharing
Promote open access to premier scientific publications
Open data Meet established criteria for data openness
Implement quality controls in data collection
Ensure confidentiality and privacy of people’s data and information
Promote the establishment of governance strategies for health data
Unstructured data Process data from social networks
Analyze people’s social behavior on the Web
Analyze free and specialized health information search engines
New skills Data management
Increased use of ICTs and methodologies for information management and knowledge-sharing
Flexibility and adaptability for working in networks in multilingual and multicultural environments
Informed health-related decision-making
E-government Implement e-government strategies in the framework of public health
Promote the adoption of interoperability standards
Develop a proposal for unique patient identification
Promote continuing education for health workers in the use of ICTs

Open science

This concept pursues the crucial objective of enhancing the transparency, integrity, and access to scientific research findings and of promoting policies and projects for knowledge translation, facilitating knowledge-sharing, and prioritizing open access to data and premier scientific and technical publications.

The Office of the Special Rapporteur for Freedom of Expression of the Inter-American Commission on Human Rights has acknowledged that access to information is an essential tool for combating corruption, realizing the principle of transparency in public management, and improving the quality of democracy (). The Open Government Partnership seeks to improve government performance, promote civic participation, and make governments more responsive to their citizens. Open science implies a change in standards and culture aimed at ensuring true dialogue and collaboration, which includes data openness and sharing of information and knowledge between science, government, and civil society ().

When applied in the sphere of public health, the concept and practice of the principles of open science yield numerous benefits for policy formulation and implementation. These benefits include open and free access to technical data and content, continuing education for health personnel and decision-makers on ICT-related topics, the formal establishment of mechanisms for evidence-based policy-making, and continuing education for health workers and decision-makers on information management (for example, specialized searches of large volumes of data).

Described below are four strategic actions related to the concept of open science, which could lead to other benefits for public health.

Promote research. In the policy sphere, analyses have been conducted to identify research resources, structures, and processes to support health systems; gaps have been recognized; and actions have been taken to meet needs (). National policies that will ensure convergence between research and health need to be further strengthened. To that end, it is necessary to move forward in the paradigm shift from research focused on the health sector to a broader, more innovative and inclusive approach to research for health. This new paradigm captures the wealth of contributions from various sectors, addresses health determinants, and includes issues relating to health in all policies; it also lays the groundwork for a cross-cutting, integrating approach that will help ensure that research contributes to the achievement of the SDGs ().

The scientific community should continue to advocate interventions to improve the use of and reduce waste in research (). Measures should be implemented to increase transparency as reflected in public records of research studies and to integrate administrative processes that will encourage the adoption of such measures. Standards should also be adopted with a view to facilitating the dissemination and use of scientific knowledge and promoting the study of public health topics of interest, such as the analysis of equity.

There is a growing volume of observational data generated systematically in the course of patient care in the form of medical records, databases, Web pages, and information published in the mass media. Access to and use of these data are the subject of a wide-ranging debate on the purpose of and the limitations and barriers to the production of such information. These data can be a source of new evidence that could be used for comparative studies of effectiveness, patient adherence to treatment regimens, drug development (for example, clinical feasibility studies or reports on the design of pivotal clinical trials), and reimbursement (assessment of relative effectiveness and market agreements) (). Bioinformatics and artificial intelligence are widely used in the area of health, with mass data acquisition, as in the case of the development of new drugs on the basis of genetic information databases ().

Promote policies and projects for knowledge translation. The scientific knowledge that is produced on health topics should not remain solely within the realm of scientific publishing; rather, it should be made available to the public and have a positive impact on policy design (). To that end, a regional strategy for knowledge translation and research on its implementation in health systems should be developed with a view to: (a) institutionalizing the use of research evidence in health-related decision-making; (b) creating formal integrated structures and mechanisms to strengthen the ability to incorporate the findings of health-related research in decision-making, including rapid-response mechanisms for decisions that require immediate action; (c) strengthening existing networks and partnerships (and creating new ones where necessary) in order to carry out and promote knowledge translation and applied research activities; (d) encouraging research on knowledge translation in the Region of the Americas; and (e) developing knowledge management platforms for decision-making on priority issues for health in the Region, particularly in relation to the 2030 Agenda, universal access to health and universal health coverage, and the SDGs. An example of the latter is the Regional Platform on Access and Innovation for Health Technologies (PRAIS), a regional initiative coordinated by PAHO ().

Strengthen knowledge-sharing. Barriers should be eliminated and opportunities for information- and knowledge-sharing among researchers, decision-makers, professionals, and the general public should be expanded. If that is to happen, the following are needed: (a) up-to-date policies that promote research and open science-especially when they are funded from public resources-and that include the use of open methodologies, technologies, and standards in order to facilitate sharing of data and research findings and enable their replication, derivation, and extension; (b) collaborative scientific production and communication within a network, with public access to the methods used and the data generated throughout the research cycle; (c) expansion of formal mechanisms of scientific communication; and (d) use of sources of unstructured data-such as social networks and open platforms-as well as technological tools for promoting and systematizing the sharing of knowledge, best practices and lessons learned; monitoring and disseminating scientific output; identifying interest groups; and managing research.

Promote open access to premier scientific publications. Open access can be regarded as one of the paradigms of knowledge management, since it has given rise to what had not been possible to achieve despite years devoted to theories and methodologies: the true sharing and reuse of scientific and technical information for the generation of new knowledge, which opens up a new era for the advancement of science. This has meant more than merely changing the ways in which information is published and recovered; it has also meant bringing about a transformation in order to guarantee the fundamental right of access to quality information. A change is also needed in the means of measuring progress in areas of traditional knowledge and reconciling it with the impact of the circulation of information on social networks, institutional networks, and Internet search engines.

It is imperative for States to adopt strategies to support and promote open access as the preferred means of publishing public health research findings. With that aim, they should (a) facilitate funding to cover the cost of publishing articles in open-access journals; (b) improve the intellectual production process and support for agencies that promote and facilitate access to knowledge; (c) create, maintain, and enhance infrastructure for ensuring open access to data and quality information for a broader segment of society, not just for a privileged group; and (d) uphold the fundamental right to access to quality information.

Open data

The principles enshrined in the Pan American Sanitary Code and the Constitution of PAHO affirm the importance of access to reliable data and quality information (). Since 1950, PAHO has worked with its Member States to collect official health data, in particular vital statistics. PAHO believes that public health will be more equitable for all societies once countries have revised their policies and processes on open health data and have ensured that such data are of high quality, reliable, and secure. WHO advocates promoting and protecting the right to education and the right to seek, receive and impart straightforward information and ideas concerning health issues. However, the right to information should not impair the right to privacy, which means that personal health data should be treated with confidentiality (). Ensuring free access to public health data and information from the government or the public sector through digital means can help improve health surveillance and increase capacity for analysis, in addition to facilitating innovation in data analysis ().

Open data policies will facilitate the implementation or improvement of quality controls in the collection, storage, and security of data (structured and unstructured). They will also ensure the confidentiality and privacy of people’s data through the application of international criteria for data openness and promotion of the establishment of governance strategies, and they will foster the ethical reuse of data for the generation of new knowledge.

Described below are four proposed strategic actions for improving decision-making, care, and the formulation of national policies supported by other policies and plans for ensuring the openness of health data:

Meet established criteria for data openness. Enhancing the capacities of the State in the digital sphere through the provision of infrastructure and data in conditions of transparency, equity and uniformity is a means of eliminating access barriers to public health data and stimulating competitiveness, innovation and the reuse of content and avoidance of its duplication (). There is a need to develop strategies and policies on open data that promote the availability of official and primary health data and the electronic publication thereof on a timely basis for the broadest range of users and purposes, ensuring that the data are non-proprietary and not subject to registration or licensing requirements, except where restrictions are necessary for ethical reasons, especially regarding reasons of privacy, security, and confidentiality ().

Implement quality controls in the collection of data (structured and unstructured). For the surveillance of public health, authorities are empowered to obtain information that makes it possible for them to carry out the task of protecting the health of the population. Combining structured data with unstructured data as a means of applying an open-data strategy can provide invaluable information for analysis and research to guide decision-making in public health. Models are needed to standardize and ensure the uniformity of unstructured data that are adjusted to the regional reality and that are also beneficial and adaptable to local contexts. To that end, it is essential to fulfill the ethical obligation to ensure the only data collected are those that are truly necessary for the purpose of improving population health. Such data should be obtained in a respectful manner, and people should be duly informed of which data are being recorded and to what end, how they will be used, and how they will be stored.

In the case of medical products, it is the responsibility of governments to ensure that the use of results of public data analysis in the manufacture of health products or the delivery of health services is done in the interests of public health and that the benefits of the data use are maximized and the risks minimized.

Ensure the confidentiality and privacy of people’s data. States should take all necessary steps to establish legal mechanisms and instruments to ensure the privacy, confidentiality, and security of people’s data. They should set clear and rigorous rules for accessing and processing data and for its coding and anonymity for all possible uses. Ethical use requires that the data collected be obtained in an ethical manner and used for the benefit of population health. The use of data calls for transparent governance with clear oversight mechanisms that ensure strict accountability in order to bolster public trust. Agencies and mechanisms that represent the interests and perspective of the population should be put in place in order to strengthen the legitimacy of data use and of initiatives that use data.

In addition to ensuring people’s fundamental right to privacy, such action will contribute to decision- and policy-making that benefits population health and will reduce the chances of misuse of data and minimize the harm that such misuse can cause.

Promote the establishment of governance strategies for health data. Access to data has become a mass need, and this need continues to grow, a situation that requires health institutions to adopt strategies, policies, and standards for the management of open data that will enhance data quality, confidentiality, and security (). Strategies for data governance need to be developed and refined so that they will help to improve the quality of the health services that citizens receive. Such strategies include the following:

  • Providing better data for health decision-makers, researchers, and public health workers;
  • Ensuring that available data always comply with the principles for open data — i.e., they are complete, primary, timely, accessible, processable, non-discriminatory, non-proprietary, and license-free;
  • Facilitating innovation in order to create or improve applications and products that will help to enhance health;
  • Adding quality to the messages crafted and disseminated by communications media and social networks; and
  • Promoting an institutional and social culture that recognizes the importance of providing open data as a critical success factor for health-related actions.

Unstructured data

Data and information generated by society in an unstructured manner can be highly useful for health systems and for decision-making in general. Aspects of culture and social customs also come into play, as do people’s behavior with regard to their ailments and clinical recommendations, health behaviors that are outside the health care system, and community health assets, among others.

Described below are three proposed strategic actions for taking unstructured data into account in decision-making and in health information systems:

Process data from social networks. Social networks offer boundless opportunities to improve public health interventions (); however, the evidence is still fragmented. Further research is therefore needed to determine if unstructured data obtained from social networks can be relied upon to predict epidemics, for example, and how these nontraditional sources and tools can be better used to monitor future epidemiological emergencies, define scenarios, and quell the public’s fears about circulating information (). Arriving at an adequate understanding of social networks means also understanding people’s online social behavior.

Analyze people’s social behavior on the Web. The preconceptions of health information systems are rooted mainly in vital statistics and structured data. In most cases, unstructured data generated automatically through the online social behavior of people surfing the Internet are not taken into account. These preconceptions do not take into account the current information overload, either. Both the Internet and social networks and ICT tools are increasing the amount of structured and unstructured content available online, which creates unprecedented opportunities to improve public health actions and inform and transform societies and governments. Hence, if new methods are adopted that make it possible to analyze people’s social behavior on the Web, governments, researchers, and academic institutions will have broader, more open, and faster access to new data, which could give rise to, among other advantages, more effective and innovative responses than ever before in the history of humankind.

Analyze free and specialized health information search engines. Processing and understanding the searches that people conduct for information on the Web can facilitate the construction of hypotheses on how people and institutions behave in response to public health events. In the case of epidemics, social behaviors related to fear in the communities involved may be closely linked to the type and frequency of the words used in searches. The strategies used by health organizations to communicate and disseminate information should therefore be adapted dynamically and rapidly to the type of panic occurring and to its increase as observed through the volume of data resulting from processing of searches conducted on free or specialized search engines in the health sciences. Accordingly, it is important to ensure that health-related content found by people and institutions is adequately monitored.

New skills

The information society imposes a constant need to update professional skills and abilities. Increasingly, health workers must become specialists in the management of structured and unstructured data, the increased use of ICTs, and the routine use of tools and methodologies for information management and knowledge-sharing. They must also have the flexibility and adaptability needed to work in networks in multilingual and multicultural environments.

Described below are four proposed strategic actions for updating health workers’ skills:

Data management. Health workers should, individually and collectively, have a thorough understanding of systems for the collection of quality structured data and of how to access and process the unstructured data generated through the online social behavior of people surfing the Web. They also need skills and abilities related to ethical issues that arise in the processing of large volumes of data, known as “big data,” which will enable new analyses and greater and better information-sharing among health professionals and institutions.

Increased use of ICTs and methods and techniques for information management and knowledge-sharing. If organizations, countries, and societies are to function effectively in the information society, they cannot ignore the key role of digital literacy. Member States should be capable of establishing digital literacy programs aimed at:

  • Continually updating knowledge in the use of ICTs;
  • Developing capacity for the application of new knowledge;
  • Strengthening the ability of individuals and institutions to use methodologies for accessing information and managing knowledge;
  • Acquiring new work habits in response to the changes brought about by the information society; and
  • Achieving full mastery of basic concepts for the use of technological and methodological resources.

People should have the skills needed to find innovative solutions that will enable them to deal with new, emerging, or unknown situations through the application of ICTs. They should also be capable of applying such technologies effectively and efficiently for the continuous improvement of systematic activities. ICTs should be a means of acquiring new work habits, with particular emphasis on capacity for analysis in the face of complex situations ().

Flexibility and adaptability for working in networks in multilingual and multicultural environments. We live in a world of digital, cognitive, cultural, generational, and multilingual convergence. All these factors can affect, positively or negatively, the work of communities of practice and production networks and the sharing of scientific and technical information and knowledge in the health sciences. With the expansion of the Internet and the development of Web-based applications, it is possible to find immense amounts of information in every imaginable language. At the same time, as a result of globalization, health workers will face more and more language and cultural barriers that represent obstacles in their daily work and in their professional training activities. Facilitating the production of and access to multilingual information and communication between people—especially between patients and health workers—should be one of the principal skills of health personnel in order to function effectively in the information society.

Informed health-related decision-making. Strengthening the capacity of health workers to make assertive decisions through the collective building of organizational knowledge and intelligence means ensuring that they know how to:

  • Delimit the issue or problem that needs to be solved with the information collected;
  • Critically select effective experiences arising from practice;
  • Filter and select response options;
  • Establish parameters for focusing the search for evidence;
  • Define the characteristics of the population that will benefit;
  • Thoughtfully review the information obtained and consider the specific features of the issue or problems to be solved;
  • Analyze options and systematize the results supported by recommendations; and
  • Assess and track the impact of the results.

E-government

The massive expansion of the Internet, which operates on the basis of open standards, has generated a new approach known as e-government. This approach consists of the continual adoption of ICTs in the managerial processes of governments with a view to making them more effective, efficient, and transparent. According to the 2014 United Nations E-Government Survey, despite rapid improvement, South America, Central America, and the Caribbean still face some challenges with regard to online service delivery. The infrastructure gap and broadband quality are the principal constraints that need to be overcome in order to achieve a sustainable improvement ().

It is essential to understand that ICTs are no longer mere tools in public health. They have become instruments that set the standards for and strongly influence policy-making with regard to mass and risk communication strategies, epidemiological surveillance, emergency and disaster response, planning and innovation, and prioritization of investments, among other areas.

In the Region of the Americas, there continue to be inequalities in access to health services as a consequence of various factors that limit opportunities for receiving early medical care of high quality. These factors include low income; lack of human resources; deficiencies in infrastructure, equipment, and health technologies; and physical and cultural distance between the supply of services and the population that needs them. The application of ICTs in public health can yield benefits in terms of innovation, in the social and health areas, and in the economy of any country in the Region ().

The implementation of public health strategies in the framework of e-government fosters innovation, promotes transparency, and strengthens accountability in civil service and in democratic processes. It is also conducive to improvements in efficiency and in relations and communication with citizens.

The following four strategic actions can help to enhance health systems through the adoption and use of ICTs in the framework of e-government strategies.

Implement e-government strategies in the framework of public health. In order to achieve this objective, it is essential, first and foremost, to establish priorities for the adoption of ICTs that will be sufficiently cost-effective in the context of health systems. An understanding of the progress made in eHealth in the countries of the Region is needed in order to improve the effectiveness and efficiency of public and private health systems (). The methodological recommendations for the measurement of access to and use of eHealth should therefore be implemented and the generation of evidence and the development of guidelines in this area should be encouraged in order to facilitate decision-making and the implementation of projects in a strategic and sustained manner.

Promote the adoption of interoperability standards. Promoting compliance with standards for health data and related technologies helps to ensure the compatibility and sharing of health-related information. To that end, guidelines should be developed to regulate the unique interoperability of patient data, including data related to patients’ electronic health records and to electronic prescription. The result should be a common framework for the development of a standard or minimum data set to facilitate the exchange of information between systems ().

Develop a proposal for unique patient identification. With the advent of electronic citizen profiles in the information society, unique identification of patients is one of the principal components for fostering the sustainable, expandable, and interoperable development of eHealth programs and initiatives. If the health sector is seen as citizens’ gateway into the e-government system of a country, registries of live births in the countries of the Region have the opportunity to become the point of integration that incorporates all electronic services, not just those related to the health sector ().

Promote continuing education for health workers in the use of ICTs. The main concepts that all health workers should master include the following: mass, open, and unstructured data; data analysis, including mining of data and texts; automatic learning; data visualization; health data dictionary; open and electronic government; social network; taxonomy; and ontology. They also include the concept of eHealth, which in turn includes components such as electronic medical records, standards and interoperability, telehealth, and mHealth, among others.

Conclusions

The trend towards convergence of public health with the information society will strengthen the achievement of the SDGs, in particular through promotion of the sustainable development of citizens and improvement of their quality of life. In order to achieve this objective, is important to bear in mind the guiding principles and the strategies for action described in this chapter and summarized in the table.

Access to health-related scientific and technical content for health care, research, evidence-based policy-making, medical instruction, and the development of individuals and communities should be as open and free as possible and access should be timely, with data provided in suitable formats. It is also essential to take into consideration the multilingualism and the cultural and religious diversity that exist in the Region of the Americas and in the rest of the world as critical success factors for the circulation of knowledge and the functioning of networks of experts and institutions.

Open access to reliable, high-quality data and information and sharing of knowledge have the power to help improve the health of the peoples of the Americas, regardless of their socioeconomic level, by complying with PAHO’s resolution to “share helpful information and data” (). It is important to formulate more inclusive differentiated policies, especially in relation to strengthening the production and sharing of knowledge in indigenous communities, with an emphasis on the recovery and dissemination of traditional knowledge.

Access to information also entails important challenges for its application. One of them is easy access to open project files for medical devices that can be reproduced without major constraints. Some examples are 3D printers, fitted mechanical limbs, mobile phone-connected microscopes, and syringe pumps (). This, in turn, represents a new challenge with respect to the traditional regulation of health products.

The progressive transformation of research governance and knowledge translation in the Americas is occurring in a context of political and technical changes at the global and regional levels. These changes reflect an approach and a perception of the use of research that highlight the need to apply the findings of scientific research and other forms of knowledge (for example, economic studies) in policy development, health care, and prevention. There is also evidence of an integrating approach in which different disciplines contribute to the improvement of health and health systems through health-related solutions and research from various sectors ().

Finally, a public health future that benefits from the phenomenon known as “the Internet of things” should be envisaged, as the number of Internet-connected devices continues to grow steadily, and this trend is becoming one of the principal drivers of the global economy. Technological advances associated with the use of open data applied to medical products should be accompanied by regulation, monitoring, and oversight of companies and providers of services and products in order to ensure their efficacy and safety for patients and users.

If we act collectively as a region that promotes, protects, and strengthens equity, solidarity, and Pan-Americanism as fundamental values, the task of integrating public health with the principles established by the information society will help to ensure that the joint efforts of Member States contribute to the achievement of agreed common goals.

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