Patients helping to drive innovation in NHS Scotland
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.