Where do patients fit in research?

How to brilliantly take over from Dr Seema Dadhania’s blog post when I am definitely not someone to keep diaries (like Anne Frank or Carrie Brashaw)?

Some suggest writing about yourself; others, on your research. Well, that is a shame because there is nothing sufficiently interesting about me to make it public, and my research is scattered over so many projects and obligations that they would be difficult to summarise in 900 words. Then, the idea came to me after a patient and public involvement meeting organised and chaired by the talented Miss Lillie Pakzad-Shahabi: how do patients have an influence on my work? do I work for clinical staff or patients in the National Health Service (NHS)?

Before I intend to answer this question, you need to understand my background. I like to say I work in the shadows since I am a research assistant with a Masters in computer science and statistics. It means I work on large data sets (such as GlioCova), have fun looking at colourful graphs and never talk with patients. But it changed three years ago when I got involved in the Trigger project.

Trigger aimed to look at side effects in patients with pelvic cancer receiving curative radiotherapy using a simple screening tool, hosted onto an independent secure platform. Patients enrolled at the end of their treatment and entered their personal details (i.e., name, date of birth), email address, and information about their cancer and treatment end-date. Patients answered their first questionnaire at enrolment and received a reminder every three months post-treatment to capture the evolution of their side effects. If they experienced significant side effects, the platform gave them a phone number to contact their team, to discuss the symptoms and to decide if an appointment was necessary. Patients could answer the questionnaires as often as they desired, for how long they wished.

Trigger was launched across three UK centres (and lately joined by a fourth) where the objective was to enrol 60% of patients eligible. My first encounter with a former patient (let’s call him Jean) happened during management meetings for preparing Trigger. His passion and wish to share his own journey with other patients amazed me. He refused to accept that new patients would have to live through what he had experienced following his radiotherapy treatment. Jean beat his cancer, put his energy into this project and was willing to offer any help he could. This gave a new perspective on my work. When the patients started to answer their questionnaires, I reviewed their symptoms with compassion and with Jean’s words resonating in my head:

“I often wondered if my cancer had come back, not knowing that the reactions my body had were normal. No one told me I would have to live through this, months and months after my treatment!”

Almost a thousand of patients across the four centres registered and answered their questionnaires online. Unfortunately, a thousand patients represented less than 20% of eligible patients with pelvic cancer (about 50,000 new prostate cancer cases are diagnosed each year in the UK, source). The registration rate was far from the initial objective (60% of patients enrolled), but Trigger taught us a lot despite our frustration to see its end in December 2020, two years and a half after its launch.

Like a phoenix being reborn from its ashes, Trigger has evolved into an ambitious project to monitor patients’ quality of life, pain and experience during their treatments. This time, no criteria to participate: a patient with cancer having any kind of treatment (chemotherapy or radiotherapy) is eligible for this project. It was humbly named CURIE (Collecting, Understanding, Reporting, Interpreting and Exploring). Everything that did not work in Trigger got assessed to find a permanent solution. With CURIE, a new set of meetings has taken place with former patients from different horizons who do not hesitate to tell me when I am mistaken on their wishes or when we should reconsider the whole project’s strategy. They are opened about their experiences, how cancer and the treatments had affected their personal life. They remind me how exhausting chemotherapy can be so patients do not need a 20-page folder with details on a single project because they will not have the energy to read through it. They challenge me to answer questions a data analyst would never ask: “why do you want this data? why is it so important? are you sure this is the correct way to ask this sensitive question?”. Data analysts are greedy of numbers and data as we often say “the more data, the better, no matter what!”.

When I started this job with my new diploma and junior ideas, I was convinced that:

1. I was going to help only the clinical staff.
2. The oncologists will have answers to all of my questions.
3. I will never speak to patients.
4. I will stay behind the curtains and only come out of my office to refill my cup of tea.

After all these face-to-face and virtual meetings, I realised that patients secretly drive the research and they are the key stakeholders of all our projects. Without patients to guide us, our results are meaningless and useless. Without their feedback, we cannot change the way to see and analyse their own data. Without their kindness and time, our ideas and aims would never fit their needs. Without their experiences, any improvement in the services would be challenging. Therefore, I understood that my work was dedicated to patients’ wellbeing because I shall never be able to cure them.