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WHO Forum on Health Data Standardization and Interoperability

3–4 December 2012Geneva, Switzerland

WHO Forum on Health Data Standardization and Interoperability3–4 December 2012 | Geneva, Switzerland

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© World Health Organization 2013

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Table of Contents

Acknowledgement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ii

Executive summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Rationale for convening the forum. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3

Preparations for the forum. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

Organization of the forum . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

Opening remarks . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

Panel sessions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6

Panel 1. Essentials of health data standards for health care delivery . . . . . . . . . . 6

Panel 2. Country perspectives on health data standards implementation . . . . . . . 7

Panel 3. Access to health data standards . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Panel 4. In-country policy and governance mechanisms for health data standards adoption . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9

Panel 5. Innovative funding models for health data standards access and adoption . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10

Panel 6. Human capacity for health data standards implementation and maintenance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Panel 7. Role of development partners in health data standards implementation . 11

Moving forward . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Annexes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

Annex A – Agenda . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

Annex B – List of Panels and corresponding questions . . . . . . . . . . . . . . . . . . 16

Annex C – List of participants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18

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Acknowledgement

The World Health Organization (WHO) Forum on Health Data Standardization and Interoperability was a historical landmark event, held in accordance with the World Health Assembly mandate on eHealth.

The forum was organized by the Knowledge Management and Sharing department of the Health Systems and Innovation cluster at the WHO Headquarters in Geneva, Switzerland. It was co-chaired by Najeeb Al Shorbaji and Ramesh Krishnamurthy. Special thanks are conveyed to Marie-Paule Kieny (Assistant Director-General), Ties Boerma, Xen Santas, Michael Gehron, Monika Kiwewesi, Jian Li and Diane De Claviere for their support.

The forum would not have been possible without the outstanding support, participation and contributions of over 200 individuals from 54 countries. We are especially indebted to the panellists, moderators and rapporteurs: Adebayo Wuraola, Alvin Marcelo, Amani Siyam, Anna Orlova, Antoine Geissbuhler, Beatriz de Faria Leao, Bedirhan Ustun, Bob Jolliffe, Bron Kisler, Charles Jaffe, Christopher Chute, Clayton Hamilton, Daniel Vreeman, David Hunter, David Novillo, Dennis Falzon, Djordje Gikic, Donald Mon, Don Newsham, Edward Rashba, Emma Veitch, Getachew Sahlu, Hani Farouk Mohamed, Hazim Timimi, James Ferguson, Joan Dzenowagis, Jyotsna Chikersal, Kimberly Parker, Lapo Bertini, Lincoln Moura, Mahran Hoseini, Marco Pardave, Marina Torre, Mark Landry, Masahiro Kuroda, Mead Walker, Nellie Keriri Kinyanjui, Nguyen Hoang Phuong, Nosa Orobaton, Paul Bouey, Paul Gerome, Peteris Zilgalvis, Robert Aseltine, Tong Xin, and Walter Suarez. A full list of participants is provided at the end of the current document. We are grateful for their active participation.

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Executive summary

As the United Nations (UN) agency for health, the World Health Organization (WHO) has recognized the importance of health data standardization and its relevance to ‘eHealth’ systems and services. With a view to supporting Member States in their efforts to implement health data standards, WHO convened the Forum on Health Data Standardization and Interoperability in Geneva from 3 to 4 December 2012.

The primary objective of the forum was to facilitate dialogue among health data standards development organizations (SDOs), standards maintenance organizations (SMOs), academic institutions, subject matter experts and Member States toward the ongoing efforts to develop a comprehensive roadmap for full implementation of health data standards for interoperability within countries. The outcomes of the forum also contribute to the implementation of eHealth standardization and interoperability being undertaken by WHO.

Participants included representatives from SDOs and SMOs, UN agencies, academic and research institutions, implementing partners, donor organizations, and subject matter experts, in addition to Member States and WHO technical programmes of both headquarters and WHO Regional Offices.

Over 200 individuals from 54 countries contributed to the dialogue on standardization and interoperability, which addressed 15 key questions (Annex B) related to seven thematic areas. Numerous other participants also followed the event through live webcasting.

The forum focussed on the following seven thematic areas:

• Contextualizing eHealth and health data; essential health data standards for health systems performance; common terminologies and minimum data sets.

• Country perspectives on health data standards implementation through discussion of critical issues in eHealth systems interoperability; implementation of health data standards at all levels.

• Impediments to access; making health data standards freely accessible and multilingualism and implementable standards.

• In-country policy and governance mechanisms for health data standards adoption through policy and legislation for enterprise architecture and interoperability; legal framework for multisectoral engagement; health-data protection, privacy, security and confidentiality.

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WHO Forum on Health Data Standardization and Interoperability2

• Innovative funding models for health data standards access and adoption through free access to health data standards; innovative funding models for standards development and standards implementation; and increasing levels and efficiency of investments in health data standards.

• Human capacity for health data standards implementation and maintenance through discussion of core competencies required to oversee implementation activities; engagement of universities and academic institutions; and global roster of experts and institutions in standards implementation.

• Role of development partners in supporting Member States in their efforts to implement health data standards at national and sub-national levels.

This meeting report summarizes the proceedings and outcomes of the forum. Among the key outcomes, Panel 1 concluded that to achieve both semantic and syntactic interoperability, various categories of standards must be implemented as part of strengthening the overall eHealth systems and services at national and sub-national levels. Panel 2 noted that it is essential to have national policies for eHealth and health information technology (HIT) standardization. Through discussion in Panel 3, the forum recognized the need for a global support mechanism to assist Member States, especially low- and middle-income countries (LMICs) to adopt standards at all levels of eHealth systems and services. Panel 4 concluded that a competency-based workforce is essential for successful implementation of standards at national and sub-national levels. It was recognized in Panel 5 that funding needs to be part of a national eHealth strategy in order to sustain the implementation of standards. Panel 6 highlighted the importance of national governments engaging academic institutions and health-related nongovernmental organizations to formalize specialized training programmes for existing health care professionals on standardization and eHealth systems. Because donors demand considerable amounts of data from their recipients on a frequent basis, it was suggested in Panel 7 that funds currently provided to paper-based data collection be redirected to finance standards-based eHealth systems.

The entire unedited audio recording of the proceedings (containing approximately 13 hours of discussion), including the opening remarks and presentations from panellists and participants, is available at http://www.who.int/eHealth/en.

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Background

“The use of eHealth and mHealth should be strategic, integrated and support national health goals. In order to capitalize on the potential of ICTs [information and communication technologies], it will be critical to agree on standards and to ensure interoperability of systems. Health Information Systems must comply with these standards at all levels, including systems used to capture patient data at the point of care. Common terminologies and minimum data sets should be agreed on so that information can be collected consistently, easily and not misrepresented. In addition, national policies on health-data sharing should ensure that data protection, privacy, and consent are managed consistently.” 1

Rationale for convening the forum

Interoperability is widely recognized as essential to achieving the full potential of seamless data exchange using information and communication technologies (ICTs) and medical devices in support of health systems. Appropriate use of ICTs to deliver quality health services, reduce costs and achieve universal health coverage is integral to advancing health care. Transmitting personal or population data across ICT-driven health information systems requires adherence to health data standards and related technology standards for timely and accurate exchange of data for health care decisions. Whether it is counting of the health workforce by cadre and facilities, providing patient care through review of digital images, managing patient information through electronic medical records or conducting public health surveys and surveillance – all require interoperability of data within and between systems, based on a given set of standards.

As the United Nations (UN) agency for health, the World Health Organization (WHO) has recognized the importance of health data standardization. The organization recognizes that implementing health data standards to achieve interoperability at all levels of health care delivery is not an easy task, despite numerous efforts. With a view to supporting Member States in their efforts to implement health data standards, WHO convened the Forum on Health Data Standardization and Interoperability in Geneva from 3 to 4 December 2012.

1 Keeping promises, measuring results. Commission on Information and Accountability for Women’s and Children’s Health, WHO, 2011.


Preparations for the forum

A forum organizing committee was established to plan and organize the event. Inputs for the content of the forum were obtained from numerous stakeholders. A list of over 800 potential participants was prepared that included representatives from low and middle-income countries, health data standards development organizations (SDOs), standards maintenance organizations (SMOs), donors, and selected development partners.

The forum was planned to include seven panels. The first day included four panels, convening SDOs, SMOs and country representatives to discuss essential aspects of health data standards for health care delivery, country perspectives on eHealth standards implementation, access to standards, and in-country policy and governance mechanisms for standards adoption. The second day comprised three panels, discussing innovative funding models for standards access and adoption, human capacity for standards implementation and maintenance, and the role of development partners in standards implementation.

A draft agenda for the meeting with a set of 15 thematic questions was developed. These were reviewed during forum pre-planning sessions in November 2012, with technical experts and external partners in order to include wider perspectives and inputs.

Invited participants included representatives from health data SDOs, Member States, WHO technical programmes and the six WHO Regional Offices, academic and research institutions, implementing partners, donor organizations, and subject matter experts concerned with development, adoption and implementation of health data standards at national and sub-national level.

Organization of the forum

The WHO Secretariat assisted and facilitated discussion in the seven panels. Panel composition included one participant representing WHO, one or two participants representing Member States and one participant representing SDOs or SMOs (or in some cases a technical expert). Each panel was assigned a moderator and a rapporteur.

For each panel, the moderator was responsible for allocating approximately 20 minutes to the panellists, followed by 20 minutes to the participants. In sequence, questions were posed to all panellists and participants. This process ensured audience participation while facilitating dialogue. Panellists were requested to answer questions as precisely as possible, based on their area of expertise, experience and knowledge of the subject. To enrich the dialogue, panellists were not allowed to use slide presentations as part of their responses. Audience participation followed similar panel moderating procedures. Rapporteurs were provided with a note-taking template to draft common themes around discussions succinctly.

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Opening remarks

Remarks by Dr Marie-Paule Kieny, Assistant Director-General, Health Systems and Innovation Cluster, WHO

Dr Kieny welcomed the participants and emphasized the need for and importance of the forum to facilitate dialogue among various stakeholders on the subject of standardization and interoperability. She elaborated the organization’s core functions that include a normative and standard-setting mandate as part of health system strengthening and the WHO General Programme of Work for 2014–2019. Dr Kieny emphasized the meaningful adoption of health data standards and related information technology standards as essential for interoperability between systems. Interoperability can assist effective, consistent and accurate collection, exchange and processing of data between and within health information systems and related eHealth services.

Dr Kieny highlighted the vast and heterogeneous nature of standards development and implementation process and recognized that WHO cannot do this alone. She referred to on-going collaboration efforts in standards development and implementation with many WHO Collaborating Centres, SDOs, SMOs and national standardization bodies.

Dr Kieny stressed that strengthening eHealth efforts at the country level and implementing reliable eHealth systems and services depends on proper national planning for eHealth, country ownership, multisectoral engagement, appropriate use of ICTs, and adequate human capacity. She urged that meaningful and effective coordination be continued between various stakeholders to assist Member States in achieving interoperability of eHealth systems.

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Panel 1. Essentials of health data standards for health care delivery

Summary of dialogue

This panel discussed types of standards and debated if there are any “essential health data standards” that are necessary for effective health systems performance. In addition, the panellists and the participants discussed some examples of current standards and their importance in health systems performance.

The panellists and participants recognized that the primary goals of eHealth standardization are to achieve interoperability between independent systems; to ensure compatibility of data for comparative statistical purposes; and to reduce duplication of effort and redundancies.

Although there was no consensus on a specific set of essential health data standards, it was agreed that both the context and content are crucial to unambiguous interpretation of health data and the overall data management. To achieve both semantic and syntactic interoperability, it was recognized that various categories of standards must be implemented as part of the overall eHealth effort in a country. Thus, inclusion of vocabulary and terminology standards, health information content standards, health information exchange standards, identifier standards, privacy and security standards, as well as functional and business standards, are all necessary for full interoperability of eHealth systems and services. It was recognized that privacy and confidentiality standards, as well as provider and patient ID standards, are currently in various stages of development.

Specific examples were discussed to illustrate the utility of standards in the health systems performance and their relevance to eHealth services. These included the International Classification of Diseases (ICD), Systematized Nomenclature of Medicine Clinical Terms (SNOMED-CT), Logical Observation Identifiers Names and Codes (LOINC), Health Level 7 (HL 7), RxNorm, Digital Imaging and Communications in Medicine (DICOM), International Standard Codes of Occupations (ISCO), Clinical Document Architecture (CDA), standard-complaint electronic health record systems and medical records, and standards for medical devices and machine-to-machine service layer standards.

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Panel 2. Country perspectives on health data standards implementation

Summary of dialogue

This panel addressed issues that Member States are facing in implementation of eHealth systems and services. Through dialogue with participants, the panellists highlighted some examples of success stories.

Examples of various eHealth efforts from Austria, Brazil, Canada, China, Dominique and Eastern Caribbean, Italy, Mexico, Nigeria, the Philippines, Saudi Arabia, South Africa and Viet Nam were discussed. The discussions included both barriers as well as success stories in implementing eHealth systems and services.

Although numerous barriers were identified during the discussions, policy barriers for adoption of standards at national and sub-national level were the most notable. The need for national policies for eHealth and health information technology (HIT) standardization was noted as essential. When countries lack the appropriate legal frameworks, full implementation of eHealth systems cannot be realized. The forum noted that national eHealth strategies need to contain all relevant components, including policies on health data protection, privacy, security and confidentiality.

The second barrier identified was related to absence of sustainable national and international approaches to implementation of standards and funding to support the development, testing and certification of HIT standards and eHealth products. With limited health sector budget in LMICs, countries are facing challenges in implementing standards-conformed eHealth systems and services. Donors are urged to focus on providing dedicated funds for implementation of health data standards and eHealth standard-based systems.

The forum identified insufficient country engagement in the standards development process as the third major barrier. To develop effective standards-based interoperable eHealth systems, standards developers have to understand the specific needs for electronic data communication between stakeholders in various countries and across countries. Lack of sufficient involvement of stakeholders from various sectors, and especially from LMICs, in the standards development processes – so they can address their specific needs – has been an impediment in the full adoption of standards at national and sub-national levels.

The forum recognized the need for informational and educational resources to enable stakeholders to navigate the technical aspects of HIT standards, standardization entities and standards development processes. In addition, there is a critical need for a competency-based health informatics workforce to implement eHealth systems at national and sub-national levels – capacity building was identified as essential.


The forum discussed several successful national eHealth activities. Among them are: functioning national level electronic human resources information systems (Canada); implementation of national eHealth architecture (Rwanda); data exchange links of eHealth systems to e-government; e-finance systems (Austria); functional models of national registries to track health care service providers (South Africa); successful implementation of national unique identifiers to track health services delivery (Brazil); and, telemedicine efforts to provide services to large remote populations (Mexico).

Panel 3. Access to health data standards

Summary of dialogue

In this panel, discussion focused on potential ways to improve access, dissemination and adoption of health data standards. While recognizing the existence of some language-related barriers to implement standards, the panel attempted to draw input from participants to overcome linguistic barriers.

To improve access, dissemination and adoption of health data standards by Member States, the forum identified four stakeholder groups: (a) health care providers and recipients; (b) donors, public and private institutions providing support; (c) SDOs and SMOs; and (d) health IT industry.

Working with these stakeholder groups, the forum recognized the need for a global support mechanism to assist Member States, especially LMICs, to adopt standards at all levels of eHealth systems and services. The support is needed to build capacity of trained health workforce involved in the development and implementation of standards, collaboration between SDOs for harmonization of standards, develop academic institutional capacity to enhance knowledge of standards in countries, and increase generation of standards competence-based human resources.

The forum participants also recognized the importance of innovation – the constant development of standards, through systematic research, should be encouraged and supported. Validation of full set of related standards must be conducted to ensure that implementation of standards will not fragment eHealth systems. A mechanism to facili-tate regular and ongoing dialogue and coordination between government, civil society, health IT software developers and related vendors and SDOs must be established.

In order to provide access to standards, the forum recognized the need for providing assistance to Member States for developing governance structures for eHealth standards that can help countries build and manage the health informatics workforce. Health informaticians can further assist in the sustainable implementation and management of standards within the country context.

The forum identified language barriers to accessing health data standards. It was emphasized that adoption of certain terminology standards in several countries depends on its availability in specific languages.

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Panel 4. In-country policy and governance mechanisms for health data standards adoption

Summary of dialogue

This panel addressed some of the best practices in policy and governance mechanisms for health data standards adoption, and use of policy and governance mechanisms to promote appropriate data sharing, while also ensuring health data protection, privacy, security and confidentiality.

The forum recognized the significant amount of work already undertaken by WHO, involving Member States in developing eHealth strategies, and highlighting eHealth standards as an important part of the country roadmap. A substantial component of the roadmap involves formal governance and accountability mechanisms, including monitoring and evaluation of standards implementation.

Two principles were highlighted during the deliberation on best practices for policy and governance mechanisms for health data standards adoption. The first principle must be to ensure that policy and governance mechanisms need to clearly focus on ‘health care delivery’ and ‘health systems strengthening’. The second principle is ‘to collaborate for coordination’ through a community-based approach.

Further, the forum discussed assigning importance to establishing four components of the policy framework:

• security and privacy principles;• requirements and expectations in the health sector and at the national level;• policies and procedures for information policy of content; and• policies and procedures on handling electronic identification for analysis and

further use.

While promoting best practices, the panellists drew attention to a number of challenges that Member States may encounter that need to be resolved. These include: special interest groups who may want to promote and exclusive set of standards to benefit a small number of entities; multiple SDOs participating in the discussion but not driven for a common purpose; continuation of duplication and gaps in the standards development leading to fragmentation.

The forum recognized the importance of Member States investing in capacity building through collaboration with, and participation of, nongovernmental organizations, academic institutions and industries since a competency-based workforce is essential for successful implementation of standards at national and sub-national levels.


Panel 5. Innovative funding models for health data standards access and adoption

Summary of dialogue

This panel addressed appropriate funding models for access standards by countries, and explored funding models to support adoption and use of health data standards in countries.

The forum identified that innovative financing for implementation of standards must take into account five major financial needs: (a) financing the development and validation of tools and ICTs that use those standards; (b) workforce capacity, education and outreach; (c) financing the changes in workflow and processes that will be incurred during the process of implementation of standards; (d) financing technical assistance for systems integration; and (e) financing the participation of Member States in the standards development process and to maintain in-country standards.

The forum recognized that Member States must explore existing financial mechanisms available for the health sector to use in implementing standards until a common source of funding is established. Participants explored numerous ideas for innovative financing to support Member States to acquire standards at no cost while supporting SDOs and SMOs for continuing their efforts to develop and maintaining standards. While funding is essential for the full adoption of standards, funding needs to be part of a national eHealth strategy in order to sustain the implementation of standards.

Among the proposals made was collaboration between national standards organizations and SDOs in order to acquire standards at no or substantially reduced cost, or development of a coalition, consortium or organization to facilitate the acquisition and distribution of standards to Member States.

The forum discussed the HINARI model, a public–private partnership that provides free or low cost access to numerous online journals and electronic books to over 5000 institutions in 116 eligible Member States. The cost for accessing online journals using HINARI is subsidized by content providers and is centrally administered by a secretariat, located at WHO. Similarly, establishment of a strong secretariat and ensuring access to standards to LMICs through a negotiated low-cost access from SDOs for all available standards was seen as a viable option.

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Panel 6. Human capacity for health data standards implementation and maintenance

Summary of dialogue

This panel addressed the ‘core competencies’ for individuals who deal with the area of health data standards implementation and maintenance at national and sub-national levels. It also discussed the ways to increase in-country capacity of the health workforce.

Some of the core competencies necessary for implementation of eHealth systems and services were considered in the following categories: (a) knowledge of global health and country-specific health systems to support standards-based eHealth system; (b) knowledge of health informatics, standards, terminology and interoperability; (c) knowledge of ICT implementation and management in the context of national eHealth strategies; (d) ability to monitor and evaluate eHealth systems and services; (e) ability to develop budgets and costing of eHealth systems and services; (f) knowledge of policy and programme planning; and, (g) leadership, communications and project management skills. The forum elaborated the aforementioned categories in greater detail.

Participants recognized the importance of national governments engaging academic institutions and health-related nongovernmental organizations to formalize specialized training programmes for existing health care professionals on standardization and eHealth systems. In-country technical capacity needs to be enhanced by providing specialized competency-based training to existing employees. Furthermore, policies need to be instituted to provide pre-service training for the emerging cadre of health workforce who are potential employees of the national and sub-national health workforce. The forum identified the need for establishing a global roster of experts and institutions, and making it available to Member States.

Panel 7. Role of development partners in health data standards implementation

Summary of dialogue

This panel discussed the ways in which health data standards help donor programmes and how donor programmes can promote the adoption and use of standards at the country level. It also discussed the need for more coordination among donor programmes, health data standards development communities, and Member States.

The forum recognized that standards-based eHealth solutions allow harmonization of reporting requirements and that donors have a vested interest in countries prioritizing standards to improve the quality, consistency and comparability of data.


Donors directly benefit when health data standards are implemented as it not only reduces the time required to generate indicators but also helps countries to have more reliable and timely data for better health care delivery. Since donors demand considerable amount of data from their recipients, and on a frequent basis, a large proportion of funds that are currently devoted to paper-based collection of data could be redirected to standards-based eHealth systems. This approach would directly benefit both countries and donors. For donors, data obtained from standards-based eHealth systems make it possible for longitudinal analysis and review, while supporting timely reporting of programme-specific indicators.

Reliability of standards-based eHealth systems were seen as crucial to global health initiatives, and a means for donors to compare their indicators across multiple countries, which is of strategic value. Since a number of donors now spend a considerable amount of funds on monitoring and evaluation of activities, the forum recognized that donors will be able to assist Member States if part of their routine grants is devoted to implementation of standards-based eHealth systems and solutions. The donors can promote the adoption of standards by dedicating investments in standards-based eHealth systems and services that can lead to overall strengthening of health systems.

Participants and panellists discussed donor responsibility to move away from funding parallel electronic information systems that are not interoperable. The forum recognized that donors can dedicate appropriate financial resources as part of their overall grant-making process, thereby actively encouraging national governments to adopt standards-based approaches to health information system (HIS) strengthening. In addition, donors can support enterprise architecture approaches for long-term support to HIS, which inherently includes blueprints for standards adoption and use. In addition, donors can support assessment, gap analysis and planning approaches in order to implement standards-based eHealth solutions in support of programmes. When announcing funding opportunities, donors are encouraged to include explicit requirements in their request for proposals and terms of reference documents to the effect that standards-based eHealth solutions for data collection and reporting are essential, in addition to providing advice to governments to include standards requirements in contracts when making local procurement decisions.

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Moving forward

During the two days of dialogue and deliberation forum participants identified important next steps in assisting Member States in their full implementation of standardized eHealth systems and solutions. Following is a set of suggested recommendations for WHO that arose during the forum.

• Continue to host the Global Forum on eHealth Standardization and Interoperability on a regular basis with in-depth discussion on each of the thematic areas that formed the agenda of the first event.

• Facilitate more opportunities for participants from LMICs to actively engage in the standards development and maintenance process.

• Engage Member States, conduct a high-level policy dialogue and develop policy guidance for full implementation of standards-compliant eHealth systems and services.

• Facilitate a mechanism to periodically convene standards development and maintenance organizations to discuss the gaps in standards, and mechanisms to address them.

• Facilitate a mechanism to provide free and open access to existing standards to Member States through an innovative financing mechanism.

• Host a ‘gateway’ on eHealth standardization and interoperability to serve as a single source of information for Member States and other stakeholders.

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Annex A – AgendaWHO Forum on Health Data Standardization and Interoperability 3–4 December 2012, Geneva, Switzerland WHO Headquarters

Day 1: Monday, 03 December 2012

08:30–09:00 Coffee and registration

09:00–09:15 Opening remarks

• Welcome remarks Dr Marie-Paule Kieny, Assistant Director-General Health Systems and Innovation Cluster, World Health Organization

• Meeting objectives; Review of agenda

09:15–10:30 Panel 1: Essentials of health data standards for health care delivery

• Contextualizing eHealth data and data types

• Essential health data standards for health systems performance

• Common terminologies and minimum data sets

Plenary discussion

10:30–11:00 Coffee break

11:00–12:30 Panel 2: Country perspectives on health data standards implementation

Presentations from selected countries on progress, challenges, plans and priorities in health data standards implementation.

• Critical issues in health data systems interoperability• Implementation of health data standards at “all levels”

12:30–13:30 Lunch

13:30–15:00 Panel 3: Access to health data standards (with special reference to LMICs)

• Impediments to access

• Making health data standards freely accessible

• Multilingualism and “implementable standards”

Plenary discussion


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15:30–17:00 Panel 4: In-country policy and governance mechanisms for health data standards adoption

• Policy and legislation for enterprise architecture and interoperability

• Legal framework for multi-sectoral engagement

• Health-data protection, privacy, security and confidentiality

Plenary discussion

17:00–17:30 Conclusion of day 1

Day 2: Tuesday, 04 December 2012

09:00–10:30 Panel 5: Innovative funding models for health data standards access and adoption

• Free access to health data standards

• Innovative funding models for both standards development and standards implementation

• Increase levels and efficiency of investments in health data standards

Plenary discussion


11:00–12:30 Panel 6: Human capacity for health data standards implementation and maintenance

• Core competencies required to oversee implementation activities

• Engagement of universities and academic institutions

• Global roster of experts and institutions in standards implementation

Plenary discussion

12:30–13:30 Lunch

13:30–15:00 Panel 7: Role of development partners in health data standards implementation

• Supporting Member States in standards implementation

Plenary discussion

15:00–15.30 Coffee break

15.30–16.30 Country observations

Plenary discussion

16.30–17.30 Summary and conclusion

• Summary of discussions

• Conclusions and next steps


Annex B – List of Panels and corresponding questions

Note: Questions asked by Moderator to all panellists and participants.

Monday03 December 201209:15–10:30

Panel 1: Essentials of health data standards for health care delivery

Moderator: Najeeb Al Shorbaji

Panellists: Christopher Chute, David Hunter, Bedirhan Ustun, Adriana Velazquez, Daniel Vreeman, Peteris Zilgalvis

Rapporteur: Dennis Falzon

a) Are there “essential health data standards” that are necessary for effective health systems performance and if so why are they essential? (Note: Each panellist is requested to respond only from their areas of subject matter expertise).

b) What problems do these “specific standards” have that the panellists (as suggested in question “a”) would solve in health systems performance?


Panel 2: Country perspectives on health data standards implementation

Moderator: Robert Aseltine

Panellists: Marco Pardave, Alvin Marcelo, Adebayo Wuraola, Tong Xin, Nguyen Hoang Phuong

Rapporteur: Amani Siyam

a) Are there any issues you are facing in implementation of health data standards in your country? If so, what are they?

b) Can you talk about some success stories?


Panel 3: Access to health data standards

Moderator: Antoine Geissbuhler

Panellists: Anna Orlova, Charles Jaffe, Lapo Bertini, Beatriz de FariaLeao, James Ferguson

Rapporteur: Getachew Sahlu

a) How can we improve access, dissemination and adoption of health data standards?

b) We realize that there are some language-related barriers to implement standards. In this context, can you speak of some ways to overcome these barriers?

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Panel 4: In-country policy and governance mechanisms for health data standards adoption

Moderator: Clayton Hamilton

Panellists: Don Newsham, Walter Suarez, Khadbaatar Khurelbaatar, Nellie Keriri Kinyanjui

Rapporteur: Hani Farouk Mohamed

a) What are the best practices in policy and governance mechanisms for health data standards adoption and use?

b) What kinds of policy and governance mechanisms promote appropriate data sharing while also ensuring health-data protection, privacy, security and confidentiality?

Tuesday04 December 201209:00–10:30

Panel 5: Innovative funding models for health data standards access and adoption

Moderator: Najeeb Al Shorbaji

Panellists: Nosa Orobaton, Masahiro Kuroda, Bob Jolliffe, Paul Gerome, Kimberly Parker

Rapporteur: Joan Dzenowagis

a) What would be some of the appropriate funding models to access standards by countries?

b) What are some of the appropriate funding models to support adoption and use of health data standards in countries?


Panel 6: Human capacity for health data standards implementation and maintenance

Moderator: Emma Veitch

Panellists: Lincoln Moura, Edward Rashba, David Novillo, Bron Kisler, Marina Torre

Rapporteur: Jyotsna Chikersal

a) What do you think are some of the “core competencies” for people who deal with the area of health data standards implementation and maintenance at national and subnational-levels?

b) How do we increase in-country capacity of health workforce to manage issues related to health data standardization and interoperability?


Panel 7: Role of development partners in health data standards implementation

Moderator: Ramesh Krishnamurthy

Panellists: Paul Bouey, Mehran Hosseini, Djordje Gikic, Mead Walker

Rapporteur: Mark Landry

a) How can health data standards help donor programmes?

b) How can donor programmes promote the adoption and use of standards at country level?

c) How can there be more coordination among donor programmes, health data standards development communities, and Member States?


Annex C – List of participantsNote: The corresponding country name associated with each participant is for geographic identification purposes only and does not represent the views of the Member State.

FAMILY NAME GIVEN NAME COUNTRY

ADEBAYO Wuraola Nigeria

AKAOKA Yasunobu Japan

ANNOR Joseph Ghana

ASARO Mauro Italy

ASELTINE Rob USA

ATWEAM Dominic Kobinah Ghana

BALKHAIR Ahmed M. Saudi Arabia

BALTIERRIC Javier Mexico

BARBOUR Virginia USA

BERTINI Lapo Netherlands

BLANCHI Christophe USA

BOADI Ebenezer Nyamaa Ghana

BOONE David Unknown

BOUEY Paul USA

BRANDSTÄTTER Jürgen Austria

BUTTAR Alistair Switzerland

CARRANI Eugenio Italy

CARUGI Marco France

CHUTE Christopher G. USA

CONNORS Jerry USA

COX Paul Switzerland

CURRY Jane Canada

DANAE Fernanda Mexico

DE FARIA LEAO Beatriz Brazil

EL-SHALAKANI Amr Egypt

ENDEL Gottfried Austria

ERVIK Morten France

ESKANDAR Hani Switzerland

EUCHNER Martin Switzerland

FERGUSON Jamie USA

FISCHER Urs Switzerland

FLEMING Julian South Africa

FLEURY Reynald Unknown

FOSTER Rosemary South Africa

GEISSBUHLER Antoine Switzerland

GHIMIRE Pawan Kumar Nepal

GEROME Paul Switzerland

GIKIC Djordje Rwanda

GRANT Andrew Canada


GUESSAN BI Gouzan Bernard Côte d’Ivoire

HAY Christian Portugal

HEIDENREICH Georg Germany

HOSSEINI Mehran Unknown

HUGHES Richard Dixon J. Australia

HUNTER David Switzerland

ISTEPANIAN Robert United Kingdom

JAFFE Charles USA

JESUNG HEE Kim Switzerland

JOLLIFFE Bob Norway

KAPITANSKI Ann USA

KAPITANSKI Boris USA

KEENAN Gail USA

KELLER Elizabeth Canada

KENYOSHI Kaoru United Kingdom

KERIRI Nellie Kenya

KHADBAATAR Khurelbaatar Mongolia

KISLER Bron USA

KOTZE Paula South Africa

KURODA Masahiro Japan

LAFLAMME Lucie Sweden

LAMIRI Goli Nigeria

LASTIC Pierre-Yves France

LEHTOVIRTA Jukka Finland

LEMAIRE Jean-Paul France

LI Ming China

LIPSKIY Nikolay USA

LUNDIN Johan Sweden

MANSET David France

MARCELO Alvin B. Philippines

MARWA Fadhili Chacha Kenya

MEAD Walker USA

MEDEIROS Donna USA

MENONI Pablo Uruguay

MICETIC Steve Rwanda

MIDIWO George Jalango Kenya

MOHAMED Amizan Malaysia

MOIDU K. India

MONTANDON Lydia Spain

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MOSER Heike Germany

MOURA Lincoln A Jr. Brazil

NETELER Markus Italy

NEWSHAM Don Canada

NGUYEN Hoang Phuong Viet Nam

NJOKA Eliud Karingo Kenya

O’DONNELL Kevin USA

OGUNDIMU Modupe Nigeria

ORLOVA Anna USA

OROBATON Nosa Nigeria

PARDAVE Marco Mexico

PELAPRAT Mary Lou Switzerland

PURNAT Tina Dannemann Germany

QUARSHIE Samuel Ghana

QUINN John USA

RICKETTS Paul USA

RITZ Derek Canada

RODRIGUEZ Michael USA

SABA Virginia K. USA

SAFARNEJAD Ali Switzerland

SANTAQUILANI Mariano Italy

SEIN Aye Aye Myanmar

SHAH Prashant prakash USA

SHALEV Ziva Israel

SLOT Jan-Eric USA

SPAHNI Stephane Switzerland

SPELLMAN Lisa USA

STARING Knut Norway

SUAREZ Raul Argentina

SUMARSONO Surahyo Netherlands

TABUNGA Teanibuaka Kiribati

TORRE Marina Italy

VEITCH Emma United Kingdom

VIGNOUD Stéphane Switzerland

VREEMAN Daniel J. USA

WALTER John Canada

WIMALARATNE S.R.U. Sri Lanka

XIN Tong China

ZARY Nabil USA

ZORIC Milan France

SAFARNEJAD Ali Switzerland

JONES Greg Switzerland

RASHBA Edward USA

HAMMOND William USA

KLEIN Gunnar Norway


DE CAMPOS Simao Switzerland

LEE Donna Switzerland

WHO SECRETARIAT

AL-SHORBAJI Najeeb Switzerland

KRISHNAMURTHY Ramesh Switzerland

KIWIWESI Monika Switzerland

DE CLAVIÈRE Diane Switzerland

ABAZA Haitham Switzerland

AGBAYANI Marion Switzerland

APPIAH Marina Switzerland

BARTOLOMEOS Kidist Switzerland

BOERMA Ties Switzerland

BONJOUR Sophie Switzerland

BOUCHER Philippe Switzerland

CHOU Doris Switzerland

COLTART Ian David Switzerland

CUZIN-KIHL Asa Switzerland

DE REGIL Luz Switzerland

DUMOLARD Laure Switzerland

DYE Christopher M. Switzerland

DZENOWAGIS Joan Helen Switzerland

FALZON Dennis Switzerland

FLECK Fiona Melissa Switzerland

FUJII Mai Switzerland

GARNIER Sandra Switzerland

GIGLI Simone Switzerland

HOSSEINPOOR Ahmadreza Switzerland

KAY Michael George Switzerland

KIENY Marie-Paule Switzerland

LARAGH Gollogly Switzerland

LARIZGOITIA Iciar Switzerland

LIÈVRE Maja Switzerland

MAGGI Richard Joseph Switzerland

MARKOFF Jered Switzerland

MOLLER Ann-Beth Switzerland

NAIDOO Nirmala Switzerland

PARKER Kimberly Switzerland

PETRAGALLO Samuel Switzerland

PIEVAROLI Liliana Marcela Switzerland

PRASAD Vinayak Switzerland

PRUSS-USTUN Annette Martine Switzerland

ROBINSON Molly Switzerland

SAVIC Sanja Switzerland

SCHNITZLER Johannes Christof Switzerland



SEPULVEDA BERMEDO

Maria Cecilia Switzerland

SHAPOVALOVA Natasha Switzerland

SINGH Simarjit Switzerland

SIYAM Amani Switzerland

SURI Sameera Switzerland

TANGERMANN Rudolf Switzerland

THOMASON Jane Switzerland

TIMIMI Hazim Bakir Switzerland

TURSAN D’ESPAIGNET

Edouard Switzerland

UNGERER Regina Switzerland

USTUN Bedirhan Switzerland

VELAZQUEZ Adriana Switzerland

ZANDI Diana Switzerland

ZHAO Hongwen Switzerland

ZICKER Fabio Switzerland


WHO REGIONAL AND COUNTRY OFFICES

CHIKERSAL Jyotsna India

EL-MOAWEN Wallaa Egypt

GOEL Ajay Kumar Denmark

HAMILTON Clayton Denmark

LANDRY Mark S. Philippines

MOHAMED Hani Farouk Egypt

NOVILLO David USA

PEIXOTO Miguel DR Congo

PRIOTTO Gerardo France

RAKOVAC Ivo Denmark

SAHLU Getachew Ethiopia

WHO Forum on Health Data Standardization and Interoperability

3–4 December 2012Geneva, Switzerland

who forum on health data standardization and interoperability · efforts to implement health data...

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