Open Data and Information Governance in Health (BR0090)

Lead government institution Ministry of Health Civil servant in charge for implementing at lead government institution Joaquim José Fernandes da Costa Junior Position - Department Director/ Unified Health System Monitoring and Evaluation Department (DEMAS/SE/MS) E-mail joaquim.costa@saude.gov.br Telephone 55 61 3315 3511 Other involved actors Government Ministry of Health Federal Prosecution Service Oswaldo Cruz Foundation Planning Company of the Federal District Secretary of Health of the Municipality of Manaus Civil society, private sector, group of workers and multilateral actors Brazilian Association of Public Health (Abrasco) Federal University of Minas Gerais (UFMG) University of Brasília Article 19 Brazilian Center for Studies on Health Institute of Social Economic Studies (INESC) Status quo or problem/issue to be addressed Greater active transparency level, related to health data Main objective To continuously increase open data availability for society, in order to fulfill open government directives and social requests Commitment short description To have a bigger set of open data related to health, and to improve this continuously OGP Challenge addressed by the Commitment Improvement of Public Services Increase of Public Integrity Commitment relevance It has a direct impact on identifying public health solvable or mitigable difficulties stemmed from an active governmental data supply. Goal To have more indicators and information for management and knowledge generation related to health.

7. Open Data and Information Governance in Health

Commitment Text:

Make available answers to requests for access to information, registered over the last 4 years, on an active transparency platform and increase the number of indicators and data of the Strategic Management Support Room (SAGE), being under civil society oversight

The commitment aims to continuously increase health open data availability for society, in order to fulfil open government directives and social requests, considering that it takes great effort for bettering data collection, validation and dissemination, besides the development of proper technologies. Not only will be increased the number of indicators and the pieces of information related with management and knowledge generation in the scope of the Strategic Management Support Room /SAGE/Ministry of Health, but also the answers to the requests for access to information from the last 4 years will be made available.

7.1 – Answered Information Request gathering (from 2012 to 2015)

7.2 – Analysis and categorization of Information Requests (when structured – SAGE; when non-structured – FAQ)

7.3 – System analysis, in order to check platform hosting

7.4 – Setting of data feeding flow at the platform

7.5 - Platform feeding (and/or SAGE)

7.6 – Platform launch

Responsible institution: Ministry of Health

Supporting institutions: Federal Prosecution Service, Oswaldo Cruz Foundation, Planning Company of the Federal District, Secretary of Health of the Municipality of Manaus, Brazilian Association of Public Health (Abrasco), Federal University of Minas Gerais (UFMG), University of Brasília, Article 19, Brazilian Center for Studies on Health, Institute of Social Economic Studies (INESC)

Start date: December 2016.. End date: October 2018

Context and Objectives

This commitment aims to expand the quantity of open data health records and to improve indicators for managing and planning health services. Specifically, the government proposes to publish responses to access-to-information requests over the last four years on an active transparency platform. It also proposes to increase the number of indicators and data on the Strategic Management Support Room (SAGE), with civil society collaboration. SAGE is a government-led initiative that collates online data, indicators, documents, and capacity-building tools for public health decision making.

Reflecting the importance of open data in the health sector, the Ministry of Health and the Health National Agency have published Institutional Open Data Plans. These are official strategic and operational plans to begin and sustain open data initiatives. A scientific institution run by the government, the Oswaldo Cruz Foundation produces research in this field and has introduced a quality seal (Selo Sergio Arouca) for high-quality open data releases.[1] In addition, KPMG released a global report stating that Brazil is increasingly releasing open data related to health. Such action closely relates to the institutionalization of ombudspersons systems in the health sector.[2]

This commitment looks to build on this past progress and address pending challenges. For example, open data related to health features low levels of use by the government, private sector, and civil society.[3] As Barbara Paes from Article 19 argued, the commitment has the potential to promote better government responses to citizen requests. She notes it could also enable the development and usage of more health indicators on service quality and openness.

Despite the importance of the topic, the commitment has a moderate potential impact. It focuses on opening and organizing public data, rather than using or incentivizing the use of data to solve a specific public problem. However, actively publishing responses to access-to-information requests, especially in a potentially sensitive area such as health, constitutes an important step forward.

The commitment’s level of specificity is high. The government has a clear and measurable deliverable: the publication of responses to access-to-information requests from the last four years. The commitment is relevant to the OGP values of access to information, and the use of technology and innovation, as it focuses on publishing responses to access-to-information requests through a digital platform.

Completion

The commitment has seen limited completion.

Implementation of the commitment’s milestones started in February 2017.[4] The government did not participate in the IRM interviews. (That is, it did not complete the online interview survey or respond to two email invitations for an in-depth interview.) From the civil society side, Article 19 completed a survey conducted by the IRM, confirming that meetings were being held. However, the organization provided no specific information to confirm the implementation of the milestones. The implementation meeting records from July 2017[5] suggest that several milestones have been substantially completed. But these relate to internal processes that could not be verified by the IRM.

For example, in terms of the collection of responses to information requests from 2012 to 2015 (milestone 7.1), the records from the July 2017 meeting state that the comptroller general had gathered the data for analysis. However, no record exists of the publication of this dataset.[6] The records also indicate that the analysis and categorization of information requests (milestone 7.2) were pre-conditions for the remaining milestones and have limited completion.[7]

The government’s published self-assessment report provides an explanation. It states that the milestones related to the collection of answered requests and the launch of the related platform were not carried out because of a change in the party responsible for managing the Electronic System of Information Services to the Citizen (e-SIC) within the Ministry of Health. This report acknowledges that less than 5 percent of the commitment was implemented by mid-2017.

It should be noted that during the implementation meetings, the government added new milestones to the commitment. One milestone includes a provision to open datasets related to two vulnerable populations (Quilombolas and indigenous populations). Another would create a collaborative platform with the data. These new activities could be important steps forward. Studies reveal that these two communities have lower access to health care than the rest of the country.[8] Further reflecting the gap addressed by these new milestones, civil society organizations have commented previously on the difficulty of finding precise data on these groups.[9]

By October 2017, milestones 7.1 and 7.3 were expected to be delivered, which puts the commitment behind schedule. It should be noted that the commitment is mentioned in the contextual information of the open data plan of the executive secretary of the Ministry of Health (2016-18). However, no detailed plan exists for the data mentioned in the commitment.[10]

Early Results (if any)

The main expected impact of the commitment is to achieve greater active transparency related to health data. Due to the limited completion of the commitment, it is too early to evaluate results.

Next Steps

Besides implementing the pending milestones, the government could focus on solving a particular public policy problem using the open dataset that is going to be released. This may include identifying specific uses for the indicators of health that will be generated with the dataset. In addition, beyond publishing responses to information requests, the government could explore how to increase the efficiency and effectiveness of information requests in the health sector. For example, it could explore reducing delays in responding to requests and publishing the data requested for all prior requests.

7. Open Data and Information Governance in Health

Commitment Text:

Make available answers to requests for access to information, registered over the last 4 years, on an active transparency platform and increase the number of indicators and data of the Strategic Management Support Room (SAGE), being under civil society oversight.

The commitment aims to continuously increase health open data availability for society, in order to fulfil open government directives and social requests, considering that it takes great effort for bettering data collection, validation and dissemination, besides the development of proper technologies. Not only will be increased the number of indicators and the pieces of information related with management and knowledge generation in the scope of the Strategic Management Support Room /SAGE/Ministry of Health, but also the answers to the requests for access to information from the last 4 years will be made available.

More specifically, the commitment was set out to achieve the following milestones:

7.1 – Answered Information Request gathering (from 2012 to 2015)

7.2 – Analysis and categorization of Information Requests (when structured – SAGE; when non-structured – FAQ)

7.3 – System analysis, in order to check platform hosting

7.4 – Setting of data feeding flow at the platform

7.5 – Platform feeding (and/or SAGE)

7.6 – Platform launch

Responsible institution: Ministry of Health

Supporting institutions: Federal Prosecution Service, Oswaldo Cruz Foundation, Planning Company of the Federal District, Secretary of Health of the Municipality of Manaus, Brazilian Association of Public Health (Abrasco), Federal University of Minas Gerais (UFMG), University of Brasília, Article 19, Brazilian Center for Studies on Health, Institute of Social Economic Studies (Inesc)

Start Date: December 2016...                                     End Date: October 2018

Commitment Aim:

The commitment aimed to expand the quantity of open data health records and to improve indicators for managing and planning health services. Specifically, the government planned to publish the responses to access-to-information requests over the past four years. This information would be published on a transparency platform. The government also planned to increase the number of indicators and the amount of data used for strategic decisions.

Status

Midterm: Limited

The commitment saw limited completion and was behind schedule. Milestones 7.1 and 7.3 were initiated. They involve data collected for analysis of information requests from 2012 to 2015 (7.1). Besides the collection of information, the government made no progress. The delay on these milestones also delayed the completion of the analysis and categorization of information requests (7.2). Thus, Milestone 7.2 also showed limited completion. The government did not start Milestones 7.4–7.6.

End of term: Limited

The government reported it has completed Milestones 7.1 and 7.2. However, limited public information exists to validate the milestones’ completion. Milestones 7.3–7.5 are underway, with limited implementation. Milestone 7.6 was not completed. Therefore, the commitment has a limited completion status.

Milestone 7.1 involved the collection of responses to information requests from 2012 to 2015, and the government states it has completed the task. The database is not published, but there is evidence from implementation meetings that almost 200,000 information requests were included in the database. [46]

Milestone 7.2 involved the analysis and categorization of information requests. The government has argued that no methodology was available in-house to complete the task. It also stated that an agreement term was established with a public university (Federal University of Minas Gerais) to perform the task, which was carried out. The IRM researcher could not independently verify the term of agreement’s content. However, the government mentions the activity in implementation monitoring meeting notes. [47]

Milestones 7.3 to 7.5 involved the upgrade of one major government health platform (digiSUS) [48] to replace the strategic and operational activities developed in another portal (Strategic Management Support Room, SAGE) [49]. The new digiSUS Gestor portal [50] was designed to make use of data to promote the planning, analysis, and monitoring of health system indicators. Milestone 7.3 involved a pre-analysis of requirements needed to launch the portal. The government states that this stage was completed, [51] but there is no public source to validate that completion. Milestones 7.4 and 7.5 involve a data feed to insert information in the platform, and the government said that those milestones are partially complete. [52] The IRM researcher accessed the portal. It has three main tasks: planning, analysis, and monitoring. The monitoring section is still inactive. The planning section has several indicators with outdated data (e.g., the last available information is from 2015). The analysis section has one thematic area (i.e., mortality). There is no method to download the data or analyze it. However, the platform provides graphics.

Milestone 7.6 involves the platform launch. There is evidence of the promotion of the new platform at a municipal public health conference [53] and at government meetings. [54] However, the IRM researcher found no evidence of a major platform launch.

In the mid-term report, the government mentioned it had updated the milestones of the commitment. Because the milestones were not submitted to OGP as updates, they are not being evaluated in this report. The milestones that were to be updated involved (a) provision to open datasets related to two vulnerable populations (Quilombolas and indigenous populations) and (b) the launch of a collaborative platform with the data. The last implementation monitoring report of the commitment also included a third goal: to associate these data with the United Nations Sustainable Development Goals. [55] The IRM researcher notes that some advances on the commitment was made. They were either included in the SAGE system or mentioned as government-led achievements that could not, independently, be verified.

Did It Open Government?

Access to Information: Did Not Change

The commitment aimed to expand the quantity of open data health records and to improve indicators for managing and planning health services. The milestones of the commitment related to planning could not be independently verified. The platform launched as part of the commitment has no updated data. Similar data was already included in the previous Strategic Management Support Room website. Thus, the commitment did not change government practices. Moreover, no contribution from civil society was received, or could be found, to evaluate the contributions of the commitment.

Carried Forward?

This commitment was not included in the fourth national action plan. The overall area of the commitment (i.e., health open data and transparency) was not included as one of the top areas for consultation in the next action plan. [56] Regarding the implementation of the incomplete milestones, the government has stated that the digiSUS Gestor portal will be completed. It also stated that the analysis of freedom of information requests will be completed in partnership with a public university. [57]