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Data sharing can help to promote transparency and accountability, and can also help to increase collaboration and innovation within the country. Additionally, it can facilitate the validation of research findings and the development of new research questions, which can lead to greater understanding and insights about Myanmar.
it would be beneficial for data to be shared in a standardized format. Standardized formats make data more easily discoverable, understandable, and reusable for others. It also allows for easier integration of data from multiple sources, making it more useful for research and analysis.
Standardized format helps to reduce the time and effort required to prepare data for sharing, as well as reducing the costs and errors associated with data conversion. Additionally, it can also help to ensure that data is consistent and accurate, which can increase confidence in the results of research and analysis.
There are many different standardized formats for data, such as CSV, JSON, XML, and RDF, and the choice of format should be based on the type of data, the intended use of the data, and the needs of the intended audience. It is also important to use an open and non-proprietary format to allow for easy access and reuse of the data by the widest possible audience.
The question of whether data should be free or paid is complex and depends on various factors, such as the type of data, the cost of collecting and maintaining the data, and the intended use of the data.
In general, making data freely available to the public can have many benefits, such as promoting transparency, encouraging innovation, and increasing accessibility to information. It can also help to ensure that valuable data resources are not wasted and that they are used to their fullest potential.
However, there may be cases where it is appropriate to charge for data, such as when there are significant costs associated with collecting and maintaining the data, or when the data is intended for commercial use. In such cases, a fee can help to recover the costs of maintaining the data, and it can also encourage the development of data-driven businesses.
In any case, it’s important to have a clear data-sharing policy that outlines the terms of use and sets out any fees or charges associated with the data. This policy should be communicated clearly to potential users and should be easily accessible.
It’s also important to consider the data privacy and security concerns, and the data should be shared in a way that protects the privacy and security of individuals and organizations while ensuring the data is still useful.
Sharing data during an emergency or outbreak situation can be crucial for managing and responding to the crisis.
Having accurate and up-to-date information about the spread of a disease or the impact of a natural disaster can help public health officials, emergency responders, and other decision-makers to make informed decisions about how to respond to the crisis.
Data sharing can also help to coordinate the efforts of different organizations and agencies, and it can help to identify and target the areas and populations that are most in need of assistance.
However, it’s also important to consider the potential risks and ethical concerns related to data sharing during an emergency or outbreak situation, such as privacy and security. The data should be shared in a way that protects the privacy and security of individuals and organizations while ensuring the data is still useful.
Data sharing in an emergency or outbreak situation should follow the guidelines and regulations of the country or region. It’s also important to have a clear data-sharing policy that outlines the terms of use and sets out any fees or charges associated with the data. This policy should be communicated clearly to potential users and should be easily accessible.
However, it’s also important to consider the potential risks and ethical concerns related to data sharing, such as privacy and security. The person in charge would also need to ensure that appropriate measures are in place to protect sensitive data and personal information.
There may be certain circumstances under which it would be inappropriate to share data, such as when sharing the data would put individuals or organizations at risk, or when sharing the data would violate laws or regulations.
Privacy: Data should not be shared if it contains personal information that could be used to identify individuals and might put them at risk of harm, such as sensitive medical data or location data.
Security: Data should not be shared if it contains sensitive information that could be used to compromise the security of individuals or organizations, such as information about critical infrastructure or classified information.
Legal Restrictions: Data should not be shared if it would violate laws or regulations, such as laws that protect trade secrets or personal information.
Inaccurate Data: Data should not be shared if it is known to be inaccurate, out-of-date, or otherwise unreliable as it could lead to poor decision-making or false conclusions.
Confidentiality agreements: Data should not be shared if there are confidentiality agreements or contracts that prohibit sharing the data.
It’s important to have a clear data-sharing policy that outlines the types of data that will not be shared, and the reasons why. The policy should also outline the process for requesting data that has been withheld, and the criteria that will be used to evaluate such requests.
Finally, good governance mechanisms for data sharing can help to ensure that data is shared in a way that is responsible, ethical, and effective. Some examples of good governance mechanisms for data sharing include:
Clear data sharing policy: Having a clear data sharing policy that outlines the types of data that will be shared, the terms of use, and any fees or charges associated with the data can help to ensure that data is shared in a way that is fair and transparent.
Data protection and security: Implementing appropriate measures to protect the privacy and security of the data, such as encryption and access controls, can help to ensure that data is shared in a way that is safe and secure.
Data quality assurance: Implementing processes to ensure that the data is accurate, complete, and reliable, and that it is up-to-date can help to ensure that data is shared in a way that is useful and trustworthy.
Compliance with laws and regulations: Ensuring that data sharing complies with all relevant laws and regulations, such as data protection and privacy laws, can help to ensure that data is shared in a way that is legal and ethical.
Transparency: Being transparent about the data sharing process and making the data easily accessible can help to ensure that data is shared in a way that is open and accountable.
Stakeholder engagement: Engaging with stakeholders and listening to feedback can help to ensure that data is shared in a way that meets the needs of the intended audience and promotes collaboration and innovation.
Review and monitoring: Regularly reviewing and monitoring data sharing practices and making adjustments as needed can help to ensure that data is shared in a way that is effective and efficient.
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From my point of view, there are many factors that have to be considered to make a decision about data sharing. I would like to consider the following factors.
1. Data owners. Data that belong to the hospital or the government can be shared. Such data include epidemiological data, key performance indicators, financial reports, etc. However, data that belong to individuals have to be judged for benefits and risks of other factors before sharing.
2. Agreement on the use of data use. Before sharing, an agreement should be reached between data owners and end users. There should be punishment for those who break the agreement.
3. Accessibility to the data. Consideration on this topic depends on whether receivers can make use of such data for further knowledge or improvement of health care improvement. If such data are not benefits for generals, there have to be limited groups who can access them, for example, researchers who are doing the same research fields.
4. Purposes of use of data. It is easy to make a decision if the purpose of sharing data is for doing some research or improve patient care. However, if the shared data are going to be used for individual business, this brings us to very careful consideration.
5. Data to be shared. All data that can be inferred to individuals or sensitive data, such as anti-HIV results, cannot be shared. Only data that are going to be used in a project should be selected before sharing. We are not going to share all the sharable data with all colleges.
In conclusion, sharing data can make many benefits, for instance, doing research with large sample size, or low incident disease, enhancing patient care, etc. My trend is allow for sharing under specific agreement and conditions.
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Of course, important to be aware of the agreement to avoid misuse of data. I think it is indispensable particularly before the applicants ask for the specific datasets, they should be asked for this point. An application form to request data should attach clear information about do, don’t, and consequences.
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If I were the owner of data or metadata, perhaps data sharing is one of the imperative obligations I need to undertake as it is a public pretension in my own country where transparency should be mainstreamed. Even in the government sector, data and information disclosure has become the main parameter for bureaucratic reform. So, I absolutely would be thinking about it.
However, apart from the purpose of maintaining public trust and generating knowledge through research, two important aspects I have to consider are 1) what structure of data I need to disclose and 2) what is the aim of sharing process. I strongly agree that disclosable data should be fully and openly shared in a standardized format to simplify follow-up activities, and the most important thing is that the authenticity, quality, and integrity of the personal data must be preserved.
For me, good data-sharing practices should actualize a guiding principle what I called FAIR-CARE which is the abbreviation of findable, accessible, interoperable, reusable, collective benefit, authority to control, responsibility, and ethics. The next concern is, important for me as the owner of dataset to possess a mechanism to carefully share the dataset. This digital era strongly depends on online publishing. But I assume that the use of online platforms such as organizational websites, social media, and online messengers do not always become the safest and most appropriate channels for information sharing. For the general data that illustrates a certain situation on a broader scale (such as disease incidence in a district or province), we may disclose it through an online system. But the narrower the data scale, the stricter mechanism we have to share and that should be disclosed upon a request.
To answer the concern about pay or not to pay, it relies on the country’s regulation and institutional policy. Here as I work in a governmental office, making data commercially available is strictly prohibited in my institution. The cash of any public services have been regulated, but service related to sharing dataset has zero cost because the priority is focusing on how to consistently actualize the data-sharing procedure and mechanism.
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In my opinion, data sharing is a crucial aspect to consider for several reasons.
Firstly, it is important for data sharing to ensure the privacy and security of individuals whose health data is included in the dataset, through processes such as de-identifying the data or limiting access to authorized individuals.
Secondly, it is essential to weigh the potential risks and benefits of sharing health data, and to ensure that any sharing of the data is aligned with ethical principles such as informed consent.
Thirdly, health data sharing can facilitate the discovery of new insights and knowledge that can improve patient care and lead to new treatments and therapies. The data sharing may increase the overall efficiency and effectiveness of research by allowing others to build on existing findings and data.
Furthermore, ensuring the quality of data sharing is also critical. The data should be accurate, reliable, and kept up-to-date. This can be achieved by implementing policies for data standardization and ensuring the data is shared securely.
Considering if the data should be paid for, there are different perspectives as follows.
Some may argue that data should be considered a valuable resource and those who generate or collect it should be compensated for it. This may include hospitals or medical institutions that conduct clinical trials and collect data from patients or participants.
Others may argue that it is a public good and should be freely available for the benefit of society as a whole. This may include government-collected data or data generated through publicly funded research. Additionally, there could be a point of view that health data is personal and sensitive information, and should not be paid or used for profit.In conclusion, sharing data can be a valuable tool for scientific and technological advancement, but it is important to ensure that the privacy and security of individuals are protected when data is shared. Whether the data should be paid or compensated for may depend on the type of data. To make a decision, it’s important to weigh the value of the data, the costs of collecting and maintaining it, and any ethical and social implications.
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if I am the administrator of a large national database, my primary goal is to ensure that information is accessible to all citizens. In particular, government information that does not pose a security risk should be made available to the public for verification and honest criticism.
In the business aspect, data is often referred to as the “new oil.” Sharing of data in the business sector should be based on demand and supply, with access restricted to those with sufficient funds. However, if state leaders believe that certain information would promote free competition and benefit the country, it may be necessary to use government resources to acquire it. This can also be achieved through laws that require businesses to disclose certain information to the public.
In Thailand, efforts are being made to develop open government databases that are accessible to all citizens. For example, the website https://data.go.th/ has a robust management system in place to ensure the quality and safety of information before it is published.
In conclusion, I believe that information sharing is vital for promoting the development of research and for maintaining transparency. However, to share information safely and effectively, it is crucial to educate those who share data and to implement proper auditing procedures.
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I would consider sharing datasets because there are many advantages. Re-validating previous study results, generating new results from the same data set or larger population, increasing the value of data accumulated and reducing redundant experiments, especially with valuable groups are some advantages received toward the knowledge discovery and resource management. Moreover, transparency could be illustrated from openly shared data sets which strengthens the trust in the research and organization.
However, there are several concerns toward the accumulated data and data violation of participants which should be considered from data collected to data applied.
Data has to be accurate and integrity sustained for effective use throughout the data interchange. For example, ensuring that there are accurate copies from the source document to maintain the original. Unauthorized access and modifications should be prevented. Sponsors controlling data shouldn’t be accepted and transparency of data captured should be provided by data sharing platform.
Privacy and security of data should be maintained to reduce the physical and mental threats to participants. For example, data has to be de-identified especially with stigmatized topics before dissemination. Agreement or consent have to be used to inform participants and show the scope the data shared. Moreover, Data sharing platforms should provide methods to secure data from the threats.Overall, I support data shared with the understanding of risk management from the storing platforms to the research investigators.
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Thank you for sharing.
I really like your idea of data sharing platform and the way to maintain it.
I agree with the data privacy and security perspective in data sharing as well. -
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If I were in charge for the data sharing authorization. I would consider data sharing. In my opinion, the data sharing is beneficial to the scientific field, public health field and so on.
Each country possesses unique characteristic and perhaps owning the pools for priceless data to be contributed to others. For example, Thailand is the one of countries in Tropical zone. Therefore, the data collection related to tropical zone diseases (malaria, dengue, melioidosis) would be fruitful. Apart from the geographical characteristic, the genetic inherited disease is one of the data that is unique. In Thailand, the incidence of Thalassemia is quite high comparing to other countries. Therefore, here is the suitable site to study the clinical features of this disease.
Sharing data not only reduce the redundancy of the data collection, especially in the human. Sometimes, data could only be obtained in only specific country. Without the data sharing awareness, scientist and/or stakeholders in other country could not study on this topic at all
Although data sharing is beneficial in many perspectives, there are many concerns of to be considered prior to initiate data sharing process
1) Data format and standardization: In Thailand, most of the data and/or document were recorded in Thai language which might not be able to understand for foreigner.
2) Data anonymization: In Thailand, we need to accept that the awareness of privacy is not quite high. The sensitive information including medical history, ID card number, HN number, financial status, address was recorded and easily accessible. The process of data anonymization needs to be strict and ensure that there are no personal identifiers in the data to be shared.
3) Data sharing responsible department: The data should not be published as open access. We should appoint the responsible department to review the data request and approve the request in case-by-case basis.In conclusion, the data sharing is not one-time job. The authorizer needs to consider risk and benefits as a whole picture. Sometimes, we need to invest time, money, staff for processing of data and maintaining data sharing process which is the one of important step to be considered as well.
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If I were in charge of sharing data set of my country, I would consider sharing data set. By looking from the above, data sharing has pros over cons. However, there are my factors that needed to consider and ensure that data is safe to be shared.
My first concern is data security, including privacy and confidentiality, which could lead to right violation. We have to make sure that when we collected data, subjects acknowledged or consented that some of their data will be shared. Yet, prior to share data, personal identifiable must be de-identified first. Especially for an emergency or outbreak situation that needs data to be analyzed for a specific outcome.
Data security is another aspect that we have to count for data sharing. If everybody is able access into the data set, there are also chances of data leak and breaching. Therefore, limited access for some dataset must be implemented. For example, data that will be use among hospitals in the country, only those authorized from hospital will have access into dataset. However, we also have to concern of standardized format among hospital so that we can make sure interoperability between systems.
In addition, we must have data control mechanisms. This means that some data is available, but for some people that need to use it. For example, researchers send request form electronically for dataset A, when they meet criteria for dataset A. The dataset A then can be shared to researchers. Nevertheless, it has to be agreement and commitment not to forward data to others or use it for other purposes.
Furthermore, to maintain quality and integrity of data, we should perform data validation periodically to make sure that the data is kept originally and has not modified by someone else.
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“If you are in charge of a data set from your country, will you be thinking about data sharing and why?” (10 marks)
This is a very interesting question. As of today, we are living in the world driven by data and they are undoubtedly invaluable whether in any form or format. In other professions, data can help them make a decision, research purposes, prediction and so on. There are data which can be shared publicly and some can not be disclosed. Health care data is one of the sensitive data and can not be freely shared without rules or regulations. There is a regulation which regulates us on how to share health care data for educational purposes and research with respect to data privacy and security.
The Health Insurance Portability and Accountability Act (HIPAA) is a federal law that required the creation of national standards to protect sensitive patient health information from being disclosed without the patient’s consent or knowledge.
So, to answer the first question, I will definitely thinking about sharing health care data set WITH REGARD TO THE REGULATION. Like I have mentioned earlier, data plays a crucial role in knowledge advancement and if there is a lack of data, you won’t have a research study or any decision making tools.
Unlike other data sets, health care data sets are very tricky because we need to deidentify and anonymise the patients’ detail so that the specific person for that data can not be reidentified by the published data set. This way, we can publicly share the data set for educational, research use. -
“If you are in charge of a data set from your country, will you be thinking about data sharing and why?” Share or not to share….
In my opinion, data sharing has pros more than cons. So I will go with sharing but with condition, considering what, when, where, to whom, to minimize the cons side.
1. Under the consensus Policy :There should be the same rule and regulation in general about data sharing in governance level, such as PDPA Law in Thailand. And also in particular organization, a research society, we have ethic committee or IRB that regulate and monitor part of participant consent.
2. Respect the consent and confidentiality : Besides the law, we talk about the consent, because every data has its owner, the importance of de-identification to minimize harms at individual level or community level.
3. Data Standardization : To be able to make the data the most usefulness, Data should be in the standard format, general variables, not too complicated software.
4. Commercializing of data : As I watch the panel discussion, this issue got my interest, I think if the dataset is reused for another project to profit any business, they should pay for it. But note that the content is under de-identified and structured data format. I agree that we should have mechanism for cost recovery and formula for charging data.-
I agree with data standardisation. If it is possible to enforce data structure and data standard, that would be ideal. However, HIS for each hospital are designed separately and they often implement their own database structure. Thankfully we have a FHIR HL7 for this purpose. Hope that one day it will be implemented in a large scale!
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In my opinion, Data sharing, exchanging, and utilizing health data would be important for many reasons and has several key benefits that make it a crucial aspect of modern healthcare.
1- Improved public health outcomes
It is one of the most important benefits. Health data sharing enables healthcare organizations to access and utilize a larger pool of health information, which can lead to a better understanding of diseases, the development of new treatments, and the discovery of new cures. On a global level, countries and different research organizations can access information from a wider range of patients, allowing for more accurate diagnoses and treatments based on real-world data.2- Better research
Data sharing will enable researchers to work with data from multiple sources, leading to a more comprehensive understanding of diseases and accessing larger and more diverse sample sizes, researchers can conduct more robust and reliable studies.3- Transparency and trust
It is another key benefit of data sharing. By sharing data, healthcare organizations can demonstrate the steps they take to protect the privacy and security of sensitive information and build trust with the public and show the commitment of healthcare organizations to the responsible use of health information.4- Collaboration and information exchange
Data sharing enables collaboration and information exchange between healthcare organizations and researchers. This leads to more efficient use of resources and helps to avoid duplication of effort. leading to a more effective approach to healthcare delivery and research.However, we should consider many risks of data sharing. Data often contain sensitive and confidential information about individuals, including their medical history, personal information, and genetic data which leads to the risk of privacy and security breaches. Sharing this information with other organizations increases the risk of unauthorized access and potential misuse of this information. Also, data sharing is the potential for discrimination and unequal treatment. Health data can contain information that can be used to discriminate against individuals, including information about pre-existing conditions, genetic predispositions, and other sensitive health information.
In conclusion, while health data sharing has many benefits, there are also significant disadvantages that need to be carefully considered. It is important to minimize these risks, Healthcare organizations and researchers to develop and implement robust policies and procedures for the collection, storage, and sharing of health data, which balance the benefits of data sharing with the need to protect privacy and ensure ethical and equitable treatment of individuals.
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