Big Data seems to be the solution to many of the world’s problems, if you believe the media stories that abound asserting its potential to address just about any problem out there. So, as our interest at the Focal Therapy Clinic is prostate cancer, we wanted to know if it is helping scientists and clinicians to better understand and treat prostate cancer, and if so how?
And before we even go there, we wanted to know what exactly is big data?
Google tells us that Big Data is a term that describes the large volume of data – both structured and unstructured – that inundates a business on a day-to-day basis. But it’s not the amount of data that’s important. It’s what organizations do with the data that matters.
So what kind of large datasets do healthcare organisations generate, and what do they do with them?
Big data in healthcare describes massive volumes of information created by the adoption of digital technologies that collect patient information and help in managing hospital performance. Sources for big data include hospital records, medical records of patients, and results of medical tests. Clinical trials and biomedical research also generate a significant portion of big data relevant to public healthcare. Combined with large datasets on demography, for example, these health datasets can be analysed to give deep and evidence-based insight into a multitude of health-related questions.
In terms of questions related to prostate cancer, big data is helping to identify aggressive cancer, match the right treatment to the right man, and understand how cancer cells develop, leading to better diagnosis, better treatment and better prevention.
Prostate Cancer UK, with funding from the Movember Foundation is supporting research using big data – some examples of its application are:
- Building a database of genetic data from biopsy and blood samples
- Predict how gene activity is affected by prostate cancer treatments
- Develop computer models to understand why multiple prostate cancers appear together
Another organisation dedicated to using big data in prostate cancer research is Prostate Pioneer.
PIONEER is a European Network for Big Data in Prostate Cancer, consisting of 32 partners across 9 countries. Its goal is to ensure the optimal care for all European men living with prostate cancer by unlocking the potential of Big Data and Big Data analytics.
By applying advanced data analytics, and developing a data-driven platform of unparalleled scale, quality and diversity, PIONEER aims to deliver meaningful improvement in clinical practice, prostate cancer disease-related outcomes, and health-economic outcomes across the European healthcare landscape.
PIONEER will assemble, standardise, harmonise and analyse high-quality big data from diverse populations of prostate cancer patients across different stages of the disease, aiming to provide evidence-based data for improved decision-making to clinicians, healthcare providers and policy makers.
According to Pioneer, there are a number of critical questions that remain unresolved regarding the screening, diagnosis and treatment of prostate cancer patients, which big data can help to investigate. these questions relate to:
- Disparities in the incidence of prostate cancer between different countries as well as unacceptable inequalities in prostate cancer survival rates across the EU. There is insufficient knowledge on risk factors for prostate cancer and on patient characteristics. This lack of knowledge means that prediction of which patients will have the best outcomes with specific treatments remains poor.
- A lack of meaningful engagement of all key stakeholders (including patients) in the processes which define the most important prostate cancer research questions that urgently need answering.
- Lack of effective implementation of knowledge gained in clinical practice (including knowledge informed by real-life data), with variability within and across European countries. This results in inequality in prostate cancer care, increased risk of short- and long-term harms to patients, as well as excess costs related to inappropriate management.
PIONEER’s approach is to firstly identify critical evidence gaps in prostate cancer care and then standardise and integrate existing big data from high quality, multidisciplinary data sources from prostate cancer patients across different stages of the disease into a single innovative data platform. Based on a unique set of methodologies and advanced analytical methods, PIONEER will attempt to transform the field of prostate cancer care with particular focus on improving prostate cancer-related outcomes, health system efficiency and the quality of health and social care delivered to all prostate cancer patients and their families. In addition, PIONEER will aim to provide standardised care pathways for all clinical centres across Europe.
An excellent video on Pioneer’s work is here.
Pioneer’s clinical coordinator, who is responsible for assembling the datasets for research, joined OnFocus for an interview here.
Next time you are asked to give consent for your health data to be used in research, think about the work of these organisations and the many others that are using your data in combination with millions of other patients to investigate, and hopefully resolve, the gaps in knowledge about prostate cancer.