May Mallahzadeh ⏤ 2024
May Mallahzadeh ⏤ 2024
Public access to data
Public access to data
During my research, all the people living with Long Covid and Diabetes I spoke to mentioned that they would go on PubMed to look up answers to their health-related questions. Let me provide some background. Before PubMed, if individuals wanted to read medical articles, they had to visit a library and request the paper version. Access was often restricted to providers or those affiliated with the organization that conducted the research.
In the 1990s, there was a story about a person who desperately needed access to a medical paper. He had to impersonate his doctor to obtain a research paper about a promising medical procedure his doctor had recommended. This individual wanted to understand how the research was conducted and what risks were involved to make an informed decision, but they simply did not have access to the necessary data. The only option left was to impersonate a doctor to obtain a copy. (Ferguson, 2007) This shows how difficult it was not that long ago to access any information related to your health.
Around that time, a librarian named Donald A.B. Lindberg and his team made the first effort to create a search engine for the National Institutes of Health, enabling public access to medical journal papers. They called the search engine GRATEFUL MED. Ten years later, during its development, it was renamed PubMed.(Funk et al., 2017)
During my research, all the people living with Long Covid and Diabetes I spoke to mentioned that they would go on PubMed to look up answers to their health-related questions. Let me provide some background. Before PubMed, if individuals wanted to read medical articles, they had to visit a library and request the paper version. Access was often restricted to providers or those affiliated with the organization that conducted the research.
In the 1990s, there was a story about a person who desperately needed access to a medical paper. He had to impersonate his doctor to obtain a research paper about a promising medical procedure his doctor had recommended. This individual wanted to understand how the research was conducted and what risks were involved to make an informed decision, but they simply did not have access to the necessary data. The only option left was to impersonate a doctor to obtain a copy. (Ferguson, 2007) This shows how difficult it was not that long ago to access any information related to your health.
Around that time, a librarian named Donald A.B. Lindberg and his team made the first effort to create a search engine for the National Institutes of Health, enabling public access to medical journal papers. They called the search engine GRATEFUL MED. Ten years later, during its development, it was renamed PubMed.(Funk et al., 2017)
That was a huge step toward providing people with the information they needed to be more active and engaged in their health. Over the years, around 30,000 medical journals have been indexed by the US National Library of Medicine, addressing various health challenges. However, most of these journals remain inaccessible to patients, and there's no guarantee that providers will give them copies of relevant research or clinical trials they suggest participating in.
The COVID-19 pandemic highlighted the consequences of limited access to reliable health information. Misinformation spread rapidly, partly because people lacked access to accurate research and data when they needed answers the most. During that time, organizations like Johns Hopkins emphasized "the need for effective management of public health misinformation and disinformation by increasing access to correct information and reducing the spread of false information.” (Burns et al, 2021)
There is still a long way to go in ensuring that lived experiences and patient voices are heard within the healthcare system. Patients struggle to access publications and research intended to improve their health and lives, yet these resources remain out of reach. This is a consequence of the silos within the system that fail to collaborate and learn from each other, each pursuing its own goals without adequately considering the benefits to individuals within the system.
Ensuring access to research findings and high-quality information is crucial for advancing health outcomes. Making this data readily available empowers individuals to make informed decisions about their health and that's the least we could do for a better healthcare future.
That was a huge step toward providing people with the information they needed to be more active and engaged in their health. Over the years, around 30,000 medical journals have been indexed by the US National Library of Medicine, addressing various health challenges. However, most of these journals remain inaccessible to patients, and there's no guarantee that providers will give them copies of relevant research or clinical trials they suggest participating in.
The COVID-19 pandemic highlighted the consequences of limited access to reliable health information. Misinformation spread rapidly, partly because people lacked access to accurate research and data when they needed answers the most. During that time, organizations like Johns Hopkins emphasized "the need for effective management of public health misinformation and disinformation by increasing access to correct information and reducing the spread of false information.” (Burns et al, 2021)
There is still a long way to go in ensuring that lived experiences and patient voices are heard within the healthcare system. Patients struggle to access publications and research intended to improve their health and lives, yet these resources remain out of reach. This is a consequence of the silos within the system that fail to collaborate and learn from each other, each pursuing its own goals without adequately considering the benefits to individuals within the system.
Ensuring access to research findings and high-quality information is crucial for advancing health outcomes. Making this data readily available empowers individuals to make informed decisions about their health and that's the least we could do for a better healthcare future.