Helen Bulbeck, member of Flatiron Health UK’s Patient Voices Panel and Co-Founder of brainstrust, who has experienced cancer as both a patient and a caregiver
Hearing the words ‘you have cancer’ is something no one can ever be prepared for. You are plunged into a state of shock and disbelief – regardless of who you are, your experiences and background. You’re then presented with a lot of information that you don’t really understand – the type of tumour, the symptoms to expect, the treatment recommended by the doctor, its benefits and side effects. And all the while you are experiencing a deluge of thoughts and feelings about how this will change your life. What matters to the person – the human being – receiving the diagnosis can often get lost.
I believe that health data and new technology can change this – giving us the opportunity to learn from the everyday experiences of people living with cancer to make sure we offer healthcare that’s tailored to patients’ needs. This is from the moment of diagnosis, through treatment and beyond.
More and more, healthcare professionals are trying to use ‘real-world data’ or ‘real-world evidence’ to help them make decisions. But what does this actually mean?
Real-world evidence can provide a range of information about the patient journey from diagnosis to treatment, such as how good a treatment is at killing cancer cells in people who share common characteristics – the stage of their cancer, the DNA in their tumour, or their age, sex or ethnicity. In other words, real world evidence can help clinicians make sure that the right treatment is given to the right patient at the right time.
Currently, the main data that is utilised is collected through clinical trials. However, clinical trial data is collected in a controlled environment generally limited to the treatment being tested and tends to only include certain groups in society who are more likely to have the opportunity to take part in clinical trials. This also means we have more data from common cancers, but know very little about rarer cancers or the presences of cancers in under-represented groups – where there are simply less treatments and less trials.
This is why the NHS wants and needs to partner with external organisations like Flatiron Health UK. They need the capabilities and expertise of health technology companies to help them get the right information they need to optimise patients' treatment and care. NHS Hospitals already have a wealth of data collected by doctors and nurses in the hospital, including written notes, scan results etc, but they need the help to be able to utilise this information and expand their knowledge about the individual patient but also the different groups of patients in order to improve the care they provide their patients.
Using real work evidence in this way also opens up the opportunity to include a variety of different types of information sources into care. Whether that is data from under-represented groups/sub-populations, under-represented cancers but also novel factors like biomarkers, or health-related quality of life measurements that are reported by patients showing how treatment impacts their life as normal. Getting a more holistic picture across the patient journey, including all facets and data points around each stage, treatment and outcome will help researchers and clinicians better understand the person living with the disease and what matters to them. Overall this will help move the needle from placing the emphasis on preserving life, to enhancing life
Collecting and sharing this data with patients could also help them understand their own disease and symptoms, and take more control over their own care.
Beyond this, real world evidence that is anonymised could be used in research for new treatments and better ways to care for people living with cancer. Again, for people living with brain cancer, where there aren’t a lot of treatment options, the importance of this research cannot be overstated, and I am incredibly excited about what new findings come out of this research in future.
From my experiences and work over the years, I know some people have reservations about sharing their data, and concerns about keeping their data safe. This is completely understandable, and the decision to have your personal journey with cancer shared must be entirely up to the individual. For me, the benefits outweigh the risks, but that is my choice.
I have worked with Flatiron Health UK to review their policies on choice, data security and anonymisation. These policies and applications have been approved by the corresponding regional authorities like the Health Research Authority. All patients will be given the choice to opt out. The data that is shared will be made non-identifiable to everyone apart from the frontline hospital where they were or are being treated, so it can be used to help doctors and nurses provide the best possible care to individual patients. The data is also held very securely, so that it can’t be accessed by anyone who doesn’t have permission.
Since co-founding brainstrust I have become immersed in the world of cancer. I’ve done a lot of research, I’ve spoken to a lot of doctors and scientists, and I’ve worked with a lot of patients. Through this experience, I believe we need to embrace the new world of data.
Advances in data collection, improvements in computer processing power, social change relating to the use of technology, and the introduction of artificial intelligence and machine learning in order to process raw data and turn it into insight, mean that we are on the cusp of a transformative period in healthcare.
Used with careful consideration, real world evidence that not only uses structured data (e.g. treatments, diagnostic tests, demographic information) but also deduced insights from unstructured data (e.g. pathology reports, clinical letters and scans) will help produce the high-quality data that is needed to optimise and accelerate cancer research. And in turn help to accelerate approvals and access to treatments and improve outcomes.
It is my belief that the routine and effective use of big data in healthcare will be as dramatic a change for the modern health sector as the introduction of penicillin during the 1940s.