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I think sharing health data in Thailand could provide many benefits to the healthcare system as it provides a better solution for a medical practitioner to collect and analyze patient data set which will lead to better care for people. Data set such as demographics, symptoms, and laboratory results can be used for the research in future studies. However, we need to apply strict policies regarding sensitive data for privacy and security concerns.
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As discussed in the lecture videos, data sharing has many benefits, not only financially but also in reliability of research results. In this way, quality of care can be improved. If I were to share a data set which is under my responsibility, I would consider:
– data sharing policies of my country
– if data sharing has been consented during initial data collection
– the individual/organization which the requester represents
– types of data requested (sensitive data or not)
– the potential impacts of the research results on the community.
The decision will be made based on the above considerations, and also, I would ask for the opinion of other responsible persons if I am not the only one in charge of the data set. -
I think data sharing is the new normal for today. Now we use many type of data sharing in COVID control such as Thaichana application. The benefit of data sharing in public health are
1. Medical history of patient in anywhere that they visit for more accuracy of diagnosis and treatment.
2. Decrease same investigation in the other health care, then investigation cost was decreased.
3. If data sharing is real time the great of surveillance system will develop in data sharing system.
4. The rare diseases can be collected to study and many new knowledge that limited by sample size will occur.
5. Strategic plan in health will go to right direction from information from big data.But the privacy, confidentiality must be concerned then policy and security was established before data sharing.
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I strongly agree that confidentiality is crucial for data sharing. Nevertheless, an appropriate application or data sharing platform should be developed based on standards, confidentiality, and privacy. The wording ” please send me the data via email”. Is this a kind of data sharing? from your IT expertise, what do your opinion about this view?
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I don’t have expert IT skill. But in by opinion, The wording “please send me the data via email” is one kind of data share. Although the data will not be shared in publish of formal form, the data have been sent to others people. Depend on you policy, consent from etc. to consider that should you share your data by this type? are you ensure in the privacy and confidentiality are kept.
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Definitely, we usually send data which is not included identity or sensitive information, usually aggregate data. Sending the data via email is a kind of data sharing aspect but only a specific time or factor. People who need the information have to send a formal letter to request the data and we send it through an email because we don’t have the open data platform to people who need to use it. Thank you for responding krub.
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If I am a charge of a data set at the national level, I will seek opportunities to share data with neighboring countries especially surveillance data. The surveillance data should be shared and appropriate management to combat the communicable diseases between the country. The aggregate data which hasn’t content the identity information can be shared.
However, the concern aspects are the data standard and infrastructure of IT in each country. if each country sharing the unstructured data, it will hard to consolidate the data. Moreover, the policy of data sharing and management should be a deal between the country.
I think that sharing surveillance data should be the IT policies in the country and regional countries.-
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You have risen a very good example of data sharing! Surveillance data, especially the data of communication diseases is crucial to control the outbreaks and to prevent the pandemics. I think many countries have concerned about the issues of data sharing that you mentioned. They have been trying to set a standard on data collection and promote it to other countries. For example, in Europe, disease surveillance networks have been in operation since the 1980s and are currently integrated and managed under The European Surveillance System (TESSy), a web-based technical platform which collects and disseminates national surveillance data from all European Union (EU) and European Economic Area (EEA) countries using standardized formats.
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Thank you for your good example, as a national level, I had a chance to meeting with other countries who are trying to promote and develop their standard surveillance systems and i found that some of their applications don’t match our perspective and our circumstances so I think to develop a regional surveillance system, we need collaboration and co-shared in terms of resources management and quality control.
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I have hold a data set of mental health problem screening during the COVID-19 outbreak. Since the web-based application has launched in April last year, there are more than 1 million people across the country reach it. We have been trying to produce value added data and publicize it nationally on our dashboard aiming to rise awareness of mental health problems, and also use it as a data base or evidence base to advocate on mental health policy action. Importantly, we would like to share this data to local policy makers. So they can understand the mental health circumstance they are in and take an action to address their problems.
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Thank you for sharing your experience. I am curious to know that is there any guideline or procedure mention about what and how to share or manage the data? and how the data is protect.
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Such a good question! Personal data on this application though out processes have been protected following Personal Data Protection Act, 2019. Moreover, We set Personal Data Protection Policy of the Department of Mental Health and inform every one who access to this application that they have right to refuse or give us a consent form to use their data with our data protection protocol.
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Yes, I think sharing health information. To allow that information to be further utilized. Taking into account the sharing of health information at different levels such as
The level of personal information for treatment.
The level of Information for use in research and for providing academic information.
The level of information for use in health management. -
Data sharing is actually benefit at all. Some of most common diseases in Thailand might be very rare disease in other part of the world. They could use these data for research, education, or references. However, data sharing policy must be made for protect, provide confidentiality to data source itself, such as identifier concealment, encryption, specify data utilization policy, or selective data for sharing.
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If I am responsible of the data set of the country, before sharing any data I would consider about;
– Type of data: There are so many types of data which some may contain the important/ sensitive / value that must be concealed, or some may not and can share to anyone; privacy and confidentiality must be concerned.
– Size of data: How big of the data? If we want to share the data what method or technology should be selected.
– Approval/ Law/ policy/ Standard/ Protocol/ Instruction: Is there any protocol or written document that instruct of how to share the data? Is there any process must follow? And this should be mentioned that who we can share?If asking that “will you be thinking about data sharing”, I would say “Yes” or “Yes with permission” or “No”, because it depends on reasons that I have mentioned as above. As everyone know that there are so many benefits of sharing data especially in research area, such as; saving time and resources, ensuring long-term and secure data storage, meeting the data sharing requirements of funders and journals, and maximizing your research output and the visibility of your research. In addition to improving public health outputs, data sharing helps researchers to become part of a larger and richer scientific community.
May I share an example of procedure of data sharing that mentioned in the Clinical research,
“Data collection in data collection forms will be conducted by an interview by study personnel or self-administered with assistance from study personnel. During the study, personal identifiers (names, Clinic Number, and email address) will be stored in a subject identification code list along with subject number and kept separately from the data collection forms in a secured location which will only be accessible to study personnel related to the study and study investigators. Data collection forms without personal identifiers and laboratory results will be entered at XXX in a secured, password protected computer and will only be accessible to personnel related to the study and study investigators. After the completion of the study, the subject identification code list will be destroyed. Research records devoid of personal identifiers will be stored indefinitely at the XXX and will only be accessible to personnel related to the study or study investigators. Data management (maintaining and storing data) and analysis will be under the supervision of the study investigators. Representatives from the XXX may inspect the study records as part of their responsibility to protect human subjects participated in research studies.
Investigators will collect the data using only subject’s code number. No other identifiable information will be collected. Data will be analyzed and reported as findings from the study without any personal identifiable information of subject.” -
I think sharing that information is a good thing and it does more than harm. At present, there is a lot of information shared for compared, analyzed and diagnosed. However, if I am in charge of a data set from my country. I have to consider any factors before I share this information, such as:
– Policy and regulations for sharing information in the country: This is important before data is shared and those regulations should be followed (Privacy/Data Protection Law (Generic))
– Privacy and security of data and owner: Before sharing, the information sharing agreement that the informant has signed on the document must be reviewed.
– The Completeness and Reliability of the information before shared is accurate: Have reliable and accessible references.
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In point of view, data sharing has more benefit such as for data of vulnerable population or critical situation. However, as my responsible, I have to consider in others view before share the data. Type of the data, level of its sensitivity, effect of data sharing, privacy, and confidentiality have been concerned. One thing that I think it’s also important and should be clarified is the purpose of data sharing. If we comprehend the objectives, will help to plan and make decision about data sharing easier and effectively.
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Personally, I believe data sharing is necessary, and it can give rise to many benefits. If we look at the pros and cons of the data sharing in detail, we would see as below.
Pros:
1. The data collection process takes a lot of time, money, and manpower. If the sharing is done, more parties will be benefited from a single data collection.
2. The data sharing allows the researchers to get more comprehensive results that could benefit both parties.
3. It also plays a great role in big data analyses.
Cons:
1. There are possible potential risks of putting the participants’ data in the wrong hands.
2. The participants’ privacy and confidentiality might be at risk.The pros outweigh the cons. Anyway, there are standard measures that need to be followed to get the job done properly. The participants in the data should know how their data will be used, and only with their consent, the data should be shared. The quality of the data should also be good, and shared in a standardized format, and ensure the data have good analytical capacity.
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Data sharing has many advantages as well as disadvantages. However, there are many benefits by sharing data especially at the time of outbreak or pandemic. Data can be repeatedly used for research purpose and it is valuable thing for all. Thus, surveillance data should be openly shared with secure data structure both locally and internationally. If the data includes sensitive information which require high confidentiality, we must be careful to exclude patient’s identity such as name and address. We should not forget about data ownership too. We should have strong data sharing policy when sharing data of human subject. Study participant must be informed about how data will be used and get consent from each participant.
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