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The first think about data sharing. Goals, purpose, possibility, expert, Stakeholder for respect the consent of the participants, System Planning systematically implemented, Database management in the same Standardize of data structure by Methods of data-sharing, process of Identify the way in which data will be transferred from the provider to the receiver and the data be encrypted before being transferred.
Data Integrity assure that data cannot be modified in an unauthorized manner. Ensure that information is in format that true and correct to original purpose.
Data Confidentiality, Privacy and security process, Individual patient information the information to be shared must be without compromising the privacy rights of patients because some data may contain information that can be linked to individuals, it is important to put safeguards in place to ensure that sensitive information (salaries, exam results) remains private. ensure that data remain confidential which What safeguards are in place to prevent sensitive information from becoming public.
Data availability to ensure that information should be ready and available for shared that related with hardware software network and manpower or expert support and maintenance. Constraints on use of the data such as can the receiver share, sell or distribute data findings or any part of the database to another agency, list any restrictions on how the data or data findings can be used.
Financial costs of data-sharing such as expenses related to sharing the data. -
For this question, I think it depends on the purpose of data sharing and the intention of the data’s owner.
As Arjarn said in the discussion VDO, I totally agree with some specific issues. Especially for data preparation before sharing and purpose of the use of data.
The first thing to consider is, before data sharing, deidentification of the data is crucial. The dataset that shared should not be traced back to identify the data’s owner. Neither by direct traceback or environmental traceback. Data preparation before sharing is also an important issue. The security, confidentiality, and integrity of shared data should be ensured before sharing. Finally, the correctness and completeness of the data set should be checked.
The second thing is the purpose of the use of data. If the user will use this dataset for a public purpose or an emergency situation, like in the pandemic spreading of COVID-19. I think it is reasonable to share some of the data such as the clinical manifestation of patients, age of patients and their characteristics like underlying disease, how they received organism and the result of treatment. For warning and prevention in all other areas. Unlike in normal situations or for research purposes, data sharing should be made under the patient’s consent to share their deidentification data with others. -
I don’t think we have any reason to hesitate about data sharing anymore. Data sharing drive our human community forward. Every time, when data/information is shared, the knowledge we have is enhanced, especially of scientific knowledge. The conventional of data sharing, for example, is in academic journals we are familiar with or traditional report in government unit. The two types are what makes healthcare practices has been improved. However, nowadays, some public data is no more in an ivory tower or requires authority or privilege to access as in the past. Anyone is and should be able to access useful public data to take part in the quality of life improvement. An example of public data sharing by government and public is https://healthdata.gov/. The data is managed to facilitate the re-using of data and result in a variety of data format. It enables data to be used for further research and collaborations.
What the in-charge should be thinking about is the privacy of data sources and security of data management. Apart from the public data as in the above example, in the age of the internet of things, personal data generated automatically through personal devices is to be concerned the most as it is till beyond control when data is transmitted through the devices. Data anonymization is challenging. Ownership of such data must be defined and discussed. For me, in the personal level, protection of personal data is still vulnerable, comparing to of level of the public or private organization.
In the case of Henrietta Lacks, it’s true that it’s on the basis of non-maleficence and beneficence but not on an autonomy. The “personal data” was taken without consent from herself or her family. The suffering was because of not being treated with respect the self-determination and human dignity.
Inevitably, we are heading to a digital society, sooner or later, where all personal and societal activity is driven by data. Society, where think about data sharing first, can frame how they can live and exploit with such future in advance and how to protect themselves and its people through conceptual knowledge and practices, laws and regulations and most importantly data literacy of citizen. Such self-awareness, both in personal and societal level will help strongly speed up data sharing after gaining trust from the public.
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As an in-charge of a data set, considering how to share and what objective to use the sharing data should be well organized and planned. During the data sharing process, the data which contain any identifiers must be de-identified to protect data privacy and confidentiality. Informed consent for all data owners must be done regularly and properly. Cleaning data to prevent any missing values and error of data must be completed before sharing. On the data transferring process, encryption and access restriction to prevent data fraud are essential. Who can access the data and whose purpose must be screened and evaluated ethically and legally by the committee. This process may be except due to an emergency situation like an outbreak to prevent the spreading of disease. We can analyze and use shared data to make more new drugs, treatments, policies, and ideas for the research.
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I think a data set of my country have to Interoperability and health information standards order to communicate health data between health care unit and health care center. At first Health Information Systems (HIS) from health care center or hospital essential have to used same standard data set of health data systems, and force to used the same standard data set in country. Standard data is very useful for research, data analytics for health information.
Value of big health information data from HIS can get better to care patient and reduce spreading of disease. Standard data help to sharing information and exchange data between health care sector and hospital easier and corrected.
In charge of me. The standard data consis of terminology standards, document standards, conceptual standards, application standards, architecture standards, and security and privacy standards. All components of standard data in health data have to one system in country.
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I consider sharing the information rather than keeping it alone. The advantage of data sharing is to contribute the update knowledge or situation to others. For example in this COVID-19 outbreak, we could follow the current number of cases start from China through many countries, thus we could assess the risk for our own country. That benefit the pandemic preparedness. On the other hand, the disadvantage of data sharing includes privacy and security. Patients themselves might not intensionally reveal their medical history and the private information might be invaded. For that reason, information technology could not only extend the benefit of data sharing, but also minimize the risk from using it.
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Before thinking about sharing data, we should aware that why we need to share, and what the pros and cons of data sharing in this situation will have occurred. I want to give you an example of a data sharing plan, in my organization, we have got the pharmacogenetics profile of the patient who received an allopurinol drug. The data is about allele HLA-B*58:01 Genotype, if the patients have the mutation in that gene they will have an adverse drug reaction. Therefore, for protecting them to the risk when they change the hospital, the data should be shared between the hospital. Now we are at the beginning of the process and we should give a consent form back to previous patients and the prospective patients should consent before receiving the service. Moreover, we need to think about how to share data over the hospitals about security, deidentification, avoid stigmatized individual data, interoperability, for example. I think this project will be a good example and then we can share other important data later.
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The big issue we have in healthcare, unlike in other industries is healthcare privacy. There is something called “trade secrets.” One hospital competes with another, even though they are not-for-profit. But behave very much like for-profits in their competitive landscape.
Patients are ultimately the owners of their own data but who owns the aggregate of information? We will hopefully see is that we are in this temporary period, or in a transition period. “Over time, I think we will see new information systems come about that put patients more in the driver’s seat of actually holding on to data and being able to provide it to different providers that are taking care of them. And government does have a role in setting regulations to protect patient privacy” said Rena M. Conti,PhD.
If I’m in charge of a data set from my country, only important matter is healthcare privacy. If the data is DE-identified we can share for many purposes (e.g., to improve individual and population health outcomes, to increased transparency and efficiency, to improve ability to study and improve care delivery). And government has responsibility to set up the framework to facilitate those solutions whether updating the certain laws. -
If I have to pay for data set in my country, data sharing is one choice for me to get data that I need. “Data Sharing” is a data exchange process where open, freely available data formats and process patterns are known and standard. Thus, any organization or individual can use any counterparty’s data and metadata.
Although data sharing is given a benefit, it’s still hard to ensure that data generated from the source are collected, curated, managed and shared in a way that maximizes their benefit. On the other hand, data that is shared will be protected or not? Should to have a “Data Sharing Agreement” for data sharing? Fro data sharing, to prepare data with high quality, security protection, legitimate are important factors.
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If I am an in-charge of a data set in my country. Before these data will be shared, my team and I have to make sure that the data set that we have is the good quality of data within the standardized format that easy to be used for those who want to use that data. And the most important thing before sharing data is we have to respect the consent of the participants. All the data must be de-identified and all of the confidential parts of the participants should not be shared. If I and my team can make sure all of the criteria above, the data is ready to be shared
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Of course, not just sharing, but also letting the public knows that the data exists. Perhaps via a website. Just like open data sources to Machine Learning (ML)
But before that I have a lot to discuss with perhaps a lawyer??? There is always a possibility of rights breaching… Even after the consent is given, we have to consider if one wants to revoke the consent (or one forgot about the consent and gotten harm.)
After sharing, I still have to ensure that the data is well maintaining, with an accessible format. Perhaps something like HL7.
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