by Deborah Cornwall, Cancer Advocate
Part 3: Cancer’s Global Reach and Efforts to Fight Back
Cancer isn’t just a North American problem, but a global one. According to the American Cancer Society (ACS), worldwide cancer incidence is rising from 14.1 million new diagnoses in 2012 to a projected 21.7 million in 2030 as a result of population aging. In addition, incidence and death rates could rise even faster in low- and middle-income countries that are adopting Western lifestyle habits (with their associated smoking, high-fat diets, reduced exercise, and infection problems); impacts are severe since many of those countries lack the medical resources and healthcare infrastructure to properly diagnose and treat the flood of diagnosed patients. The complexities of addressing such a cancer epidemic require multiple strategies, and many of them require research, collaboration, and information. They’re interconnected.
- Epidemiological research: To define the scope and nature of the problem and where it is. Geographic areas differ in their cancer incidence patterns and the prevalence of particular variants of the disease.
- Public education: To determine from that research what the public needs to know to prevent cancer or to detect it early enough to permit effective treatment.
- Scientific and clinical research: To make progress in cancer control and treatment.
- Infrastructure resources: To facilitate sharing of tissue samples, scientific progress and discoveries.
Subsequent short articles will address each of these for readers who want to learn more. This article deals with what’s happening globally in terms of providing researchers with the needed resources in four areas: Biobanks: Tissue Samples; Medical Records and Big Data; Financial Support.
What Resources do Researchers Need?
Biomedical researchers need access to tissues, samples, bio-fluids, and other types of medical specimens in order to carry out their work. Biological samples are often donated by cancer patients and their families in order to help advance the science on which their lives depend.
Research depends on empirical results, and analysis of tissue samples can yield rich insights if investigators can access large numbers of tissue samples with particular characteristics. Analysis of large numbers of tissue samples may require a researcher to gather samples from multiple locations, so common standards across biobanks are vital to the validity of their findings. Insights that emerge with strong correlations may fuel clinical trials for new treatments that can meet the unique needs of different regions of the world.
A nonprofit organization called SpecimenCentral.com maintains a directory of biobanks where investigators, academic laboratories, hospitals, and research institutions can access the kinds of specimens for a variety of cancers and neurodegenerative diseases as needed to support their research initiatives. Their directory provides information by region, including Europe, North America, Asia, Australia, Middle East, and Animal and Plant biobanks. SpecimenCentral is maintained by volunteer scientists drawn from pharmaceutical, biotechnology, biorepository, and life-science research fields. They describe the organization as focused on “matchmaking” and education in order to transfer specimens to researchers who need them and to provide a forum for exchange of information and insights among researchers. They are supported by donations from commercial customers that have budgets and can afford to contribute.
In-depth information about biobanks and how they work can also be found in a free article entitled “Biobanks: Transnational, European and Global Networks,” published by Oxford University Press in Briefings in Functional Genomics & Proteomics. The article describes The Central Research Infrastructure for Molecular Pathology (CRIP), the concept for a pan-European Biobanking and Biomolecular Resources Research Infrastructure (BBMRI), and the Organization for Economic Co-operation and Development (OECD) Global Biological Resources Centres Network are examples of the transnational, European and global biobank networks that are described in that article.
Medical Records and Big Data
De-identified medical records can provide a foundation for understanding the progression of various cancers and the characteristics of the biological environment in which those cancers thrive. The prevalence of interchangeable electronic medical records in the wealthier countries is an important factor in allowing access to patient histories that shed additional insights about the tissue samples.
Dr. Russ B. Altman, a physician and professor of bioengineering and genetics at Stanford, says that all major breakthroughs in cancer research stem from hunches, and that large-scale medical record analysis can achieve conclusions that have the empirical credibility of clinical trials. “You can deal with . . . noise [in the data] if the signal is strong enough.”
The largest medical systems in the United States track an enormous number of patients to learn about the progression of the disease, resistance to chemotherapy, and factors that contribute to both survival and high quality of life. For example, Kaiser Permanente has a data base of 9 million patients and stores a data volume more than three times the digitized storage capacity of the U.S. Library of Congress. The absence of such records in the developing economies poses particular challenges in tailoring diagnostic and treatment strategies to their unique cancer issues.
Once tissue samples and medical records are accessible to researchers, mining meaningful patterns from them requires enormous data processing capacity, known as “big data” or informatics. Rapidly increasing information processing technology allows investigators to cross-correlate large volumes of complex data quickly to identify statistically significant patterns that might lead to breakthroughs in cancer science and in public health programs worldwide.
A good example of how information is going to accelerate cancer care is a system under construction by the American Society of Clinical Oncology (ASCO). ASCO is building a patient record data base called CancerLinQ that will incorporate millions of patients. The system will accept cancer care records directly from electronic health records systems, lab data, genomic profiles, and physician notes. The outcomes will be real-world, timely insights about patients’ responsiveness to treatments, yielding clinical decision support for physicians, real-world trends and patterns of association for researchers, and accelerated physician performance against given quality measures.
Similar systems are in development at other American cancer centers. For example, Memorial Sloan Kettering’s cancer center in New York is drawing on IBM’s Watson supercomputer for such applications.
While these American systems do not yet incorporate worldwide patient data, they represent important tools and prototypes for systems that could be installed in major cancer centers in other parts of the world and could generate transferrable insights to both improve treatment and accelerate research breakthroughs.
In the end, each of the two other factors discussed above—biobanks and the assembly and big data analysis of patient medical records—is very costly. Not only is laboratory research costly, but so is storing biological samples, assembling large volumes of medical records, and purchasing and programming equipment to mine those samples and records for meaningful correlations.
Most of the websites for organizations engaged in these activities are nonprofits that depend on corporate, foundation, and individual philanthropic donations. Cross-border funding and cross-border collaborations will be essential to reducing the global cancer burden.
The final article in this series will be a short overview of global education and public policy initiatives that will be critical to reducing cancer incidence and mortality worldwide.
Read Part One: What and Where is the Problem?
Read Part Two: What Can Science Do to Stop Cancer?
Read Part Four: What Does the Public Need to Know?
A legislative advocate and speaker with the American Cancer Society’s Cancer Action Network, Deborah J. Cornwall is the author of Things I Wish I’d Known: Cancer Caregivers Speak Out and Things I Wish I’d Known: Cancer and Kids.