Myeloma UK launches innovative Unmet and Emerging Needs Research Programme

Today marks the launch of our innovative Unmet and Emerging Needs Research Programme. This is a unique opportunity to shape the future work of Myeloma UK and what we do next. Through surveys and interviews, we will capture what you want from us and the wider community. This will help us decide how best to invest in your future and make a lasting impact on your lives.

Over the past few months we have been reflecting on our many achievements over the last 25 years, where we have funded and supported world leading research, advocated for treatments and care, provided award winning services and raised awareness of myeloma and their related conditions. But now we’re thinking carefully about what comes next.

We caught up with our Health Services Research Manager Dr Sandra Quinn, about her new research programme, why patients are the driving force behind her work and how their views should inform every decision we make.

How did the Unmet and Emerging Need Programme come about?

Having undertaken amazing work over the last 25 years, we now want to look to the future and see what we need to do next. We can’t make decisions about what that looks like without asking what myeloma patients, those with related conditions and their families and friends need from Myeloma UK. Only then can we ensure that we make the right decisions as an organisation and enable us to move forward in a patient-centered way.

How will it serve the myeloma community and help future generations of patients and their families?

A one-size-fits-all approach to delivering our work is far from where we want to be and we need to tailor our work to the individual needs of patients and their families. We are interested in understanding where the gaps are in diagnosis, treatment and care for myeloma and their related conditions, and what priorities are key to our patients and their families. By asking them about their individual experiences and finding out more about who they are and what they want, we can really dig into what really matters most and invest our resources where they will make the biggest impact. This is the first time we’ve taken this approach and I think it is very exciting to be doing so after 25 years of successfully delivering improvements in diagnosis, treatment and care. Whilst we have succeeded in many different ways, we still have work to do and want to do more. That is why we are doing this amazing research on your behalf.

How can patients get involved?

Patients and their families are the beating heart of our organisation. The Health Services Research Team will be running a range of surveys and interviews with patients as part of our new Unmet and Emerging Need Research Programme. We are launching our first survey today and any patients and carers can get involved, including those with MGUS, smouldering myeloma, myeloma, AL amyloidosis and plasmacytomas. We’ll be running follow-up surveys and interviews early next year as well to dig deeper into what you want from us. We hope patients and families will allow us to get back in touch with them by leaving their name, email address so we can send out future surveys to them directly. This will help us gather more evidence on the Unmet and Emerging Needs and insights into what drives your priorities and what we need to do next.

What does this work mean to you as a researcher?

Dr Sandra Quinn, a white woman with long brown hair stands in front of a grey background. She is wearing a green and blue jumper and smiling

I’m always thinking about patients and their families when I do my work. I always ask, ‘What will make the biggest difference to them?’. It’s amazing to do work that really changes their lives and I hope patients know how much it means to me to work on their behalf.

I started my career as a musician and I’m a classically trained pianist. I taught in schools for a while but loved undertaking research and went back to it again after teaching music. I am a chartered psychologist with the British Psychological Society and I have a PhD in Cognitive Neuroscience – a fancy title that means I’m interested in how the brain works and, in my case, how we judge the timing of events. Timing is so important to everything we do, from walking, speaking and understanding what people say to listening to music.

I moved into more clinical research and health psychology-related work in the latter part of my academic career. I enjoyed my research and I still undertake academic work, but it is different. I felt I wanted to leave a mark on the world and, in my view, I can really do that through research.

I feel it is the right place for me and I really enjoy doing it. I think the key thing for me is that I love thinking about things we don’t know, thinking about how I can undertake research to answer questions, then run a study and look to see what happens.

The best bit is finding out something from the study, and to know, even for a short time, something that no one else knows anywhere. The difference here is that I get to do so and then offer up that evidence to change the lives of patients and their families. That’s where you can really leave a mark on the world and create change. I get a buzz from that.

How to get involved

What will I be asked to do?

We are carrying out an online survey that should take no more than 20 minutes to complete. The survey starts by asking you a range of questions about you, your diagnosis, and your treatments (if you take any).

We also want to know more about a patient’s family health history (any medical conditions the patient’s family have or had). This will tell us more about what conditions patients are living with, alongside their myeloma or related condition, and anything patients may be more susceptible to.

In the second part of the survey, we ask you to identify what matters most to you from a list of options. By completing the first and second parts of the survey, we can find out what different patients and family members view as important to them and what influences your decisions.

This is the first phase of our research and we aim to come back to many of you for follow-up research.

We would very much like to hear from you, whether you are living with myeloma or a related condition, you are a carer or family/friend of a patient, or have previously supported someone with myeloma or a related condition.

What do I do if I want to take part?

Take the survey and have your say.

If you have any questions please email research@myeloma.org.uk.

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