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Open medical data

Open data refers to data that is freely available and accessible to everyone, without restrictions on its use, reuse or distribution. The term “open” refers to the fact that the data can be used and shared by anyone, without restrictions on its availability or licensing.

Open data is often associated with government data, but it can also refer to data from other sources, such as research institutions, NGOs, and private companies. Open data can take many forms, including statistical data, geographic data, scientific research data, and more.

What is the aim of having open data?

The goal of open data is to promote transparency, accountability, and innovation, by providing citizens, researchers, and businesses with access to valuable information that can be used to drive social and economic progress. Open data can also help to improve government services, increase public participation in decision-making, and support the development of new products and services.

Moreover, the aim of open data is to make data accessible and available to everyone, without restrictions on its use, reuse, or distribution. Other specific aims might be:

1. Promote transparency and accountability

By making data available to the public, governments and other organizations can promote transparency and accountability in their operations, and enable citizens to hold them accountable.

2. Enable innovation

Open data can fuel innovation by providing entrepreneurs, researchers, and developers with valuable information that can be used to develop new products, services, and research. A good example is Human Genom Project.

3. Support evidence-based decision-making

Open data can provide decision-makers with valuable insights and information to inform policy and decision-making, which can lead to more effective and efficient outcomes.

3. Enhance public services

Open data can be used to improve public services by identifying areas for improvement, measuring progress, and identifying best practices.

4. Encourage collaboration

Open data can facilitate collaboration among different organizations and stakeholders, allowing them to work together to achieve common goals and address complex challenges.

Examples of open data:

1. Government data

Many governments around the world have opened up their data to the public. This includes data on demographics, public health, crime statistics, public transport schedules, and more. The Economist counted almost 200,000 datasets from 170 outfits have been posted on the data.gov website. Nearly 70 other countries have also made their data available (Nov 21st 2015).

2. Scientific research data

Scientific research data is often made available to the public to encourage collaboration and transparency. This includes data from disciplines such as astronomy, biology, climate science, and more.

3. Geospatial data

Geospatial data includes information about the Earth’s surface, such as maps, satellite imagery, and GPS data. This data can be used for a wide range of applications, from urban planning to disaster response.

4. Financial data

Financial data, such as stock prices and economic indicators, is often made available to the public to encourage investment and informed decision-making

5. Health data

Health data can include information on disease outbreaks, clinical trials, and healthcare services. Making this data open can help researchers and healthcare professionals identify trends, track outbreaks, and develop new treatments.

Centers for Disease Control and Prevention (CDC) Open Data

The CDC provides a wealth of data related to public health, including infectious disease outbreaks, environmental health hazards, and health behavior trends. This data can be accessed through the CDC’s Open Data

portal.Global Health Observatory (GHO) Data Repository:

The World Health Organization’s GHO Data Repository provides open data on a range of health indicators, including disease incidence and prevalence, mortality rates, and healthcare utilization.National Institutes of

Health (NIH) Data Sharing Repositories:

The NIH provides several data sharing repositories for researchers, including the National Library of Medicine’s PubMed Central and the

National Institute of Mental Health’s Data Archive.HealthData.gov:

This is a US government-sponsored open data platform that provides access to a range of health-related datasets, including hospital quality ratings, clinical trial data, and health insurance

coverage data.OpenFDA

This is an initiative by the US Food and Drug Administration (FDA) to make data related to drug safety and adverse events available to the public. This includes information on drug recalls, adverse event reports, and drug labeling information.

OpenMRS

OpenMRS is an open-source electronic medical record system that allows healthcare providers in low-resource settings to collect and manage patient data. The system is used in over 40 countries and has been instrumental in improving healthcare outcomes in these areas.

Environmental data

Environmental data includes information on air and water quality, weather patterns, and climate change. This data can be used to inform policy decisions and promote sustainable practices.

Social media data

Social media platforms often make user-generated data available to researchers and developers. This data can be used to study social trends, sentiment analysis, and other applications.

Open data in surgery

While surgical films or videos are not typically available as open data due to patient privacy concerns and the need to obtain consent from patients, there are some open-access resources that provide access to educational surgical videos. These resources are typically geared towards medical students, residents, and practicing surgeons to improve their knowledge and skills.

Here are a few examples of open-access surgical video resources:

1. The Surgical Video Atlas

This is an open-access surgical video library developed by the American College of Surgeons. The library includes a wide range of surgical procedures across multiple surgical specialties.

2. Cine-Med

Cine-Med is an educational media company that provides access to surgical videos for healthcare professionals. While not all of the videos are openly accessible, some are available for free on their website.

3. WeBSurg

WeBSurg is an online surgical video library that provides access to over 11,000 surgical videos across multiple surgical specialties. The videos are created by expert surgeons and are intended for educational purposes.

It’s important to note that these resources typically require registration or membership to access the videos, and may have some restrictions on use and distribution.

How can open data promote research?

Open data can also facilitate the sharing and replication of research results, which is essential for building on existing knowledge and advancing scientific progress. When data is open, researchers can easily share their data with others, which can lead to collaborations and new research projects. This can result in the development of new insights, ideas, and innovations that would not have been possible without open data.

Furthermore, open data can increase the transparency and accountability of research, by making it easier to verify the validity and reproducibility of research results. This can help to improve the overall quality of research and ensure that it is conducted ethically and responsibly.

Overall, open data can be a powerful tool for promoting research, innovation, and scientific progress, by enabling researchers to access and analyze large and diverse datasets, share their findings with others, and increase the transparency and accountability of research.

Examples of how open data has promoted research across various fields:

1. Astronomy

The Sloan Digital Sky Survey (SDSS) is an open data project that has provided researchers with access to a massive database of astronomical data. This has enabled researchers to conduct a wide range of studies, from mapping the large-scale structure of the universe to discovering new types of celestial objects.

2. Medicine

The Human Genome Project, which was completed in 2003, is an example of how open data has promoted research in the field of genomics. By making the genetic sequence of the human genome publicly available, researchers were able to conduct a wide range of studies, from identifying disease-causing genes to developing new treatments for genetic disorders.

3. Social Science

The General Social Survey (GSS) is a long-running survey of American society that has been conducted by the National Opinion Research Center (NORC) at the University of Chicago. The data from the GSS is made publicly available to researchers, and has been used to study a wide range of social phenomena, from political attitudes to social inequality.

4.Environmental Science

The Global Biodiversity Information Facility (GBIF) is an open data initiative that provides access to biodiversity data from around the world. This has enabled researchers to study the distribution and diversity of species, as well as the impacts of climate change and other environmental factors on ecosystems.

Challenges in making data open

While open data has many potential benefits, there are also several challenges associated with making data open. Here are a few examples:

1. Privacy and security concerns

One of the primary challenges of making data open is ensuring that sensitive or confidential information is not made public. This can be especially challenging when dealing with personal data, such as health records or financial information. It is important to ensure that appropriate measures are in place to protect the privacy and security of individuals and organizations whose data is being made open.

2. Legal and ethical considerations

There may be legal or ethical considerations that need to be taken into account when making data open. For example, there may be intellectual property rights or contractual obligations that prevent data from being made public. Researchers and organizations need to ensure that they have the necessary permissions and agreements in place before making data open.

3. Technical infrastructure and standards

Making data open requires the development of appropriate technical infrastructure and standards to ensure that data can be accessed and used by others. This can be challenging, especially if the data is stored in a variety of formats or locations.

4. Cost and resources

Making data open can be costly and resource-intensive, especially if there is a large amount of data to be processed and made available. There may be costs associated with data cleaning, formatting, and storage, as well as ongoing costs associated with maintaining and updating the data.

4. Lack of incentives

Finally, there may be a lack of incentives for organizations and individuals to make data open. This can be especially true for commercial organizations, which may be reluctant to make data open if they believe it could undermine their competitive advantage. It is important to develop policies and incentives that encourage the sharing of data, while also respecting the rights and interests of those who own or produce the data.

Tackling the challenges

But convincing healthcare professionals to share data can be challenging, as there are often concerns about patient privacy, data security, and potential legal or ethical issues. However, there are several strategies that can be used to encourage healthcare professionals to share data:

Highlight the potential benefits: It is important to emphasize the potential benefits of sharing data, such as improving patient outcomes, advancing medical research, and reducing healthcare costs. By showing healthcare professionals how sharing data can contribute to these goals, they may be more willing to participate.

1. Ensure data security and privacy

One of the main concerns of healthcare professionals when it comes to sharing data is maintaining patient privacy and data security. It is important to ensure that appropriate safeguards are in place to protect patient confidentiality and prevent data breaches. This can include anonymizing data, using secure data storage and transmission methods, and ensuring that all relevant regulations and guidelines are followed.

2. Provide incentives

Incentives can be an effective way to encourage healthcare professionals to share data. This can include financial incentives, such as grants or funding opportunities, as well as professional incentives, such as recognition or career advancement opportunities.

3. Foster a culture of data sharing

Creating a culture of data sharing within the healthcare community can also be effective in encouraging healthcare professionals to participate. This can involve promoting the sharing of data as a professional norm, creating communities of practice around data sharing, and providing opportunities for networking and collaboration.

4. Engage with stakeholders

Finally, it is important to engage with stakeholders, including patients, healthcare organizations, and regulatory bodies, to ensure that their concerns and perspectives are taken into account. By involving stakeholders in the data sharing process, healthcare professionals can build trust and credibility, and ensure that data sharing practices are seen as legitimate and beneficial.

These might be difficult tasks but the scientific as well as the economic benefits of open data worth it.