PROFILES: monitoring patient wellbeing

PROFILES: monitoring patient wellbeing
Patient representative Della Ogunleye with PPI/E Lead Markella Boudioni at a patient and public engagement event

Della Dolapo Ogunleye, the patient representative for our Digital research theme, played a key role in helping to promote a new online tool to enable patients to record information on their quality of life.

Della discusses why she got involved in this project and the impact this new tool will have for patients.

What was the project?

Through my role at the BRC, I got involved with Professor Winette Van der Graaf and her team at The Royal Marsden NHS Foundation Trust and The Institute of Cancer Research, London to produce a video for patients promoting an online tool called PROFILES, which allows patients to record the impact of cancer and treatment on their quality of life.

PROFILES is a data management system, which has been used in the Netherlands since 2009 to collect anonymised data on Patient Reported Outcome Measures (PROMs). Following a study which carried out focus groups, interviews and surveys with patients, a digital tool was designed, to record PROMS and support patient wellbeing.

We wanted to use the video to explain to patients what PROMS are, and how collecting and analysing this information via the PROFILES tool will help medical teams to identify the needs of each patient in order to deliver the best possible care.

What did you do?

I worked with the research team to help decide where to film the video and assisted with the editing process to ensure that my views were taken into account. I also participated in filming and was featured taking part in and leading gym classes in The Royal Marsden’s rehabilitation centre.

As part of the process, I was also asked to record the impact of exercise on both my physical and mental wellbeing, helping to evaluate the outcomes of exercise for cancer patients, even when they are unable to see their doctor.

Why did you get involved?

Following my own experience of cancer, and the impact that it had on my mental health, I would have loved to have had access to a digital tool like PROFILES and believe it would have helped me to manage my well-being following treatment.

After my diagnosis, I went into depression, but I didn’t know that at the time. Although my mood and eating patterns had changed, I was unable to pinpoint what was happening.

If I had been able to record my experiences on PROFILES, my medical team may have been able to monitor these changes in mood, especially during those dark days just after treatment, and helped me to navigate through difficult moments.

At a later stage I joined the gym and found that exercising improved my wellbeing, helping me to stay focused and more positive. It was difficult to exercise during my treatment, but a little daily push would have prompted me.

For me, the most important part of a cancer journey is how you manage your life after all that trauma and using tools such as PROFILES could be one of the ways to achieve just that. By sharing my cancer journey, and taking part in projects such as this, I want to empower other patients and use my experience to help researchers.