I worked as a researcher on a new direct referral service being developed by Blood Cancer UK. This work focused on understanding the needs of diverse populations while navigating the complexities of conducting sensitive research in a hospital environment.
With Blood Cancer UK’s ambitious goal to reach 75% of people diagnosed with blood cancer at the point of diagnosis, the decision to focus on marginalised groups was made early in the project. This recognised the need to ensure any new service interventions would reduce inequalities and barriers, making access to support as inclusive as possible.
While many groups might be underserved, existing data pointed especially to African, Caribbean, Black British and Pakistani communities as places where we could make the biggest impact. By designing for these specific groups, we hoped to create a more inclusive service for everyone.
In this post I’ll explore some of the research approaches we used to support this approach in more detail.
Navigating recruitment challenges with ‘pop up’ research
Traditional recruitment methods were always unlikely to provide enough access to the diverse perspectives we needed for this work.
Recognising these barriers, we decided as a team early on to move research directly into hospitals. We wanted to see if people would just speak to us, rather than expecting people to sign up for something they knew little about.
After looking at available data, Guys Hospital in London was chosen for its diverse patient population, enabling conversations with individuals who might never have engaged with the charity before.
This approach is what we often describe as ‘pop up’ research and proved to be really valuable. It provided real-time insights into the highly sensitive time of diagnosis, allowing us to speak to individuals in representative groups who were still processing their diagnosis or unaware they had blood cancer – a challenging but important aspect of truly understanding needs.
In this context, especially with safeguarding and patient engagement considerations, this wasn't about approaching people ‘cold’. We worked closely with Guys hospital beforehand to ensure patients were fully aware and comfortable with our presence. We put up posters and wore branded t-shirts, and we were able to build strong relationships with the nursing staff and consultants who introduced, engaged and gained consent before we spoke to patients.
Research was conducted before consultations, reassuring patients that no personal diagnoses would be discussed, only to understand the concept being researched. And if a patient became upset we immediately stopped conversations.
After this stage of research was complete, Guys Hospital also fed back to us that they had seen the added benefits of their patients having someone to talk to whilst they were waiting – especially if appointments were running late.
Piloting a new service in high risk scenarios
Our initial research helped build enough confidence that a referral from a health care professional to the charity could potentially meet the needs of different groups, including a more diverse patient population.
However, we still had two main assumptions that needed to be tested:
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Would healthcare professionals refer to Blood Cancer UK?
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Would patients accept the referral?
We understood that these questions could only be answered by testing a working version of the service in real-world settings. So our aim was to recruit two pilot sites where we could work closely with clinical teams, making sure we were offering them the support that they might need from us.
Again, using available data, we focused on recruiting hospital sites where there were higher proportions of patients we knew Blood Cancer UK weren’t supporting, particularly patients from African, Caribbean, and Pakistani communities.
Piloting in healthcare, especially around diagnosis, is inherently high-risk. So we adopted a test and learn approach, but with an important caveat: "things can't fail fast and break here because it's people's lives and people's healthcare." Safety was paramount.
Importantly, these initial pilot sites focused on testing the direct referral service as a supplementary offering. This meant that even if the referral process itself encountered issues, patients were still receiving vital support – we weren't removing anything from their care, we were trying to add to it.
We built strong relationships with the healthcare professionals involved in the pilot so that they could raise any concerns, had visibility of content and support their patients were going to be receiving and were always able to openly provide feedback. Healthcare professionals also collected consent from patients and or loved ones to share their data with Blood Cancer UK.
Maintaining close, ongoing relationships with the pilot sites allowed for continuous feedback and iteration. This enabled us to witness referrals happening in real-time, conducting mini-research sessions with referring healthcare professionals to understand their working environments, adapting the referral process accordingly.
Feedback was integrated rapidly into the new service. For example, when one pilot site expressed a desire for more personalised, disease-specific information for patients (rather than a generic journey), we updated the system almost immediately. This dynamic approach, with insights feeding daily into our stand-ups and decisions, allowed the service to evolve in real-time.
Further contextual inquiries
Alongside piloting, we identified the need for continued in person research, to better understand where the new referral service met and didn’t meet people’s needs from different communities – this including wanting to look specifically at people’s networks and communities outside of blood cancer, and where they drew strength and support from.
To ensure this research was as inclusive as possible, we used initial screening calls to explain our research aims, collecting information from participants on medical conditions, and understanding any adjustments we could make. We also asked people where they’d feel most comfortable speaking to us whether that be in their home, a favourite cafe or community setting. People were invited to bring friends or family along with them to research sessions if they wished to, and we reimbursed people, supporting them for their time.
In total we were able to recruit and speak to a further 7 people from African, Caribbean and Pakistani communities, with findings enabling us to leave Blood Cancer UK with clear next steps where they could do more to provide support at the point of diagnosis.
A continuous learning journey
Supported by insights from the different stages of research, the hospital pilots allowed for sufficient data collection to understand demand, providing the confidence for Blood Cancer UK to scale and invest further in the service.
The approaches shared here ensured that a new service was not only tested but also continually improved to meet the diverse needs of people affected by blood cancer. Our ultimate goal, and success was about delivering the right care and support while delivering research, always prioritising the well-being of the individuals involved.
