The South and East Scotland Cancer Database (SESCD) launched on its new SQL Server platform in November 2019. As a significant step forward from our old Microsoft Access database, the new database, hosted by NHS Lothian eHealth, now provides a capable basis for wide ranging uses of cancer data, from simple clinical audit to advanced predictive modelling projects.
You can read about the database and view it’s data dictionary on our wiki pages.
During one of the user workshops that we organised in collaboration with Maggie’s Centres, Sarah said, ”It has been quite a revelation. Using OWise I found out that my breast cancer is Stage 2. This helps me to much better understand what my situation is and deal with it.”
Sarah also highlighted other benefits of OWise breast cancer, the mobile patient app and website supporting patients during treatment, such as the symptom and side effect tracking function and the personalised list of suggested questions to help her prepare for doctor’s visits. She liked the fact that OWise gave her much more control over her situation.
When the Cancer Innovation Challenge (CIC) was launched back in March 2017, we knew that OWise and its existing “How Do I Feel Right Now?” function would be a perfect fit for the initiative’s objective to incorporate electronic Patient Reported Outcome (PRO) data into NHS Scotland’s electronic patient records. Our company Px HealthCare (Px stands for Patient Experience) had focused its energy on developing a patient-centred app and website to help people who had been diagnosed with breast cancer.
The Px team consists of: Anne, a pharmacist by training and David who is a clinical occupational physician specialised in oncology, and some great support staff and excellent software developers. As we continuously involve patients and their carers in the co-design of our products we believed that OWise would be very well suited for the Cancer Innovation Challenge. This would allow a patient-driven approach to have OWise users share their real time PRO data with their NHS Scotland hospital or health board.
Nudging patients to seek medical help
It immediately became clear that extensive collaboration with patients and carers (OWise users) was required. We needed to understand how patients envisioned their side effect and symptom tracking (PRO) data to be used by NHS Scotland. For example, how OWise could aid them in understanding when they needed help during chemotherapy and how their data could be used by their NHS health board to improve their treatment. With the amazing support from Maggie’s Centres we were able to hold five user workshops during the first phase of the Cancer Innovation Challenge. This gave us great insight into the “stoical” nature of the Scots and how smart alerts could nudge patients to call the Cancer Treatment Helpline when their side effects exacerbated rather than have complications aggravate resulting in avoidable hospitalisations.
Providing clinicians with actionable insights
We were incredibly pleased to partner with NHS Lothian (NHSL), where our Clinical Lead Dr Peter Hall (a breast oncologist and researcher focused on using PRO data to improve clinical outcomes) and the extensive breast team have been very welcoming and open to discuss the use of OWise. Together, we worked towards improving the patient experience and by finding practical solutions for patients to share real time OWise PRO data making a direct impact on the treatment and outcomes of patients.
The NHSL eHealth team proved very effective at finding innovative solutions to enable patients to share their OWise PRO data with their NHS health board of choice and making it visible within the TrakCare electronic patient record (EPR). In depth workgroups with NHSL clinicians highlighted a need to create new ways of visualising OWise data for clinicians. As a result, we developed monthly overviews of patients’ toxicity and side effect profiles which informs clinicians at once of a patient’s response to treatment and highlights any issues using colour coding of the UKONS (United Kingdom Oncology Nursing Society) grading system.
Extending Reach and Impact
As of July 2018, this extended version of OWise has been made available to NHSL patients. The breast cancer nursing team, charge nurses, prescribers and oncologists are now actively introducing OWise to patients. The medical team appreciates that having the patient reported outcome data directly visible in TrakCare is really helpful; it allows them to have better informed conversations with patients and even helps them with the scheduling of chemotherapy appointments.
Julie, a breast cancer patient, commented: “As a breast cancer patient, the OWise App is an invaluable tool to give peace of mind to the patient, that during stressful treatment periods, monitoring is thorough and continuous. It is easy to use with clear guidance. It could also be useful in improving patient reported outcomes.”
Following NHSL we are now exploring the introduction in other NHS Scotland health boards wanting to make a similar impact on the lives and outcomes of people with breast cancer. Due to demand of patients and clinicians we have started the development of OWise for all cancer types and patients, which we aim to trial in 2019.
OWise breast cancer can be downloaded for free. For more information, please visit www.owise.uk or www.pxhealthcare.com. If you have any questions please contact Anne on anne [at] pxhealthcare.com
Information technology plays a key role in fighting cancer through a growing field called cancer informatics.
Cancer informatics is where information science, computer science and health care intersect. It’s about acquiring, storing and using information about cancer most thoroughly and efficiently.
Its tools include computers, clinical guidelines, and information and communication systems. It uses information about patient physical, psychological and social characteristics (‘phenotype’) and their molecular characteristics (‘genotype’). These characteristics are studied in relation to how patients interact with the health system and how patients are affected (‘outcomes’).
A key feature is the synthesizing of data about cancer in ways such as analyzing captured data, gathering evidence from clinical trials, applying information into clinical practice, evaluating outcomes of changes in clinical practice, and generating new hypotheses for investigation.
The Edinburgh Cancer Informatics Programme is striving to use methods in cancer informatics to implement a “rapid-learning system for cancer care.” The “rapid-learning’ comes from the healthcare system being able to keep itself constantly informed on how it is affecting the patients it cares for.
Cancer Informatics is a broad field, getting deeper and more complex as medical research and information technology progress. The field is all about collaboration, not just among physicians and researchers but between doctors and health IT professionals and patients and the public.
There are current trends within Cancer Informatics emphasizing the use of machine learning, artificial intelligence, statistical algorithms, advanced imaging techniques, data visualization, and high-throughput technologies. The disciplineleverages methodological improvements in systems biology, genomics, proteomics, metabolomics, and molecular biochemistry into the fields of cancer detection, treatment, classification, risk-prediction, prevention, outcome, and modeling.