Sharing cancer data can save lives.
Sharing clinical and genomic data on cancer is crucial to improving patient outcomes.
In the New England Journal of Medicine, a coalition of leading cancer experts under the Global Alliance for Genomics and Health urged the need to create a more collaborative culture that works together and shares data to benefit cancer patients worldwide.
“Current restrictions on data sharing across borders limit the data that can be used by researchers to carry out a comprehensive analysis of cancer,” said lead author Professor Mark Lawler. “This is particularly pertinent when research rare types of cancer. If data is limited to a particular region or country, low patient numbers can make clinical research impossible. But it can also pose challenges with common cancers such as breast cancer, which is made up of different subtypes. We need as much information as possible to help develop new diagnostic tests and treatments for these different subtypes.”
Cancer knows no borders, which means that global strategies are needed to share all cancer-related data; however, there are challenges that need to be overcome to achieve this, according to the study.
Although the use of electronic health records (EHRs) have grown in prominence across the health care landscape, there is still a lack of effective methods to extract data from them, making it difficult to obtain relevant clinical information for data amalgamation.
“Incompatible data formats and a shortage of interoperable data-harmonizing informatics tools also compromise researchers’ ability to mine multiple data sets,” the authors wrote.
Furthermore, not having a single standardized cancer ontology limits scientists’ ability to capture clinical data and delay cross-study data analysis.
Legal, regulatory, and ethical barriers also dampen effective data sharing, especially across borders. The General Data Protection Regulation in the European Union has raised concerns among cancer researchers because it has the potential to undermine patient-oriented collaborative research, international data-sharing efforts, and the clinical applications of new treatments, according to the authors. However, lobbying by the biomedical research community has resulted in more research-friendly regulation, according to the authors.
“Ethical considerations related to cross-border data sharing sometimes require asking patients to complete additional consent forms because of concerns about individual patient identification,” the authors wrote. “The lack of consistent regulatory policies further compromises the ability to share data among countries.”
Financial barriers also pose a challenge. In a survey that included more than 100 cancer-seeking initiatives worldwide, investigators found that lack of affordability was the largest barrier to effective data sharing. Unfortunately, annotation and validation of clinical and epidemiologic data is time consuming and expensive.
The Global Alliance for Genomics and Health is an international coalition that consists of more than 470 stakeholder organizations from more than 60 countries. The coalition aims to develop interoperable solutions that promote sharing of high-quality genomic and clinical data. The authors developed the Framework for Responsible Sharing of Genomic and Health-Related Data to reflect the rights of all people to benefit from scientific advances. Currently, the framework is translated into 12 languages.
“Such an aspiration depends on both effective collaboration as well as dedicated resources,” said co-author Charles Sawyers. “We hope that our call for a ‘global cancer knowledge network’ energizes the community to act decisively and provide the resources to embed data sharing for the benefit of cancer patients globally. If we do, then big data really can save lives.
“Our experience shows that patients want to get involved to make a positive difference so we need to help them to do that.”
After growing frustrated over the lack of progress in treatment, a group of more than 130 patients from 11 different countries with the rare gene mutation ROS 1 came together online to approach a disease foundation. Currently, they are involved in the first steps of developing a clinical trial that targets the gene mutation that causes their disease.
“We are working with the disease foundation to help make this clinical trial a reality,” Lawler said. “This exemplifies why accessing data is so vital to enable researchers to carry out their work and ultimately help patients.”
Margaret Grayson, a breast cancer survivor and chair of the patient group called the Northern Ireland Cancer Research Consumer Forum, agreed saying, “Research is vital to improve the quality of life as well as life expectancy for cancer patients. Many patients will be more than willing to get involved and share their clinical information to bring us one step closer to tackling this global health issue.”