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Myeloma UK shares patient-centred research with international colleagues

Patient advocacy news, Research news // 24th July 2017

Last month, Myeloma UK attended two high-profile conferences to share patient-centred research with industry experts, healthcare professionals and researchers on a global stage.

Myeloma UK Health Services Research Manager, Dr Jayne Galinsky, attended the Health Technology Assessment International Conference(HTAi) in Rome and the European Haematology Association Conference(EHA) in Madrid.

HTAi focuses on exchanging information, methods and expertise across stakeholders involved in national drug approval, while EHA promotes excellence in patient care, research and education in haematology.

Jayne (pictured below) talks about both conferences and how Myeloma UK’s research on patient preferences regarding treatments was received.

Why is it important for Myeloma UK to attend these events?

Attending both these events is part of the work Myeloma UK does to bring myeloma patients access to the most promising treatments. We are a patient-centred organisation, so having the opportunity to present findings that reflect patient preferences on a global stage is extremely important to us, and confirms our research is of a high standard.

It is also a great opportunity to meet with our partners and network with industry experts from across the globe, which can help us develop future project ideas and collaborations. In terms of HTAi, it helped us network and explore drug development. This in turn will feed back into our work with the National Institute for Health and Care Excellence (NICE) and Scottish Medicines Consortium (SMC) to ensure myeloma patients across the UK have the best access to new and effective treatments.

Reflecting on both events, are you optimistic about developments surrounding myeloma research and treatment? 

Yes, there is lots going on in myeloma research. One of Myeloma UK’s research partners, Dr Martin Kaiser of the Institute for Cancer Research (ICR), chaired a session on novel developments in myeloma which discussed treatments and advancements in myeloma. There was additionally lots of discussion around immunology and genetic classification in myeloma which delegates were very interested in.

It was also interesting to hear about HTA (Health Technology Assessment) in different countries and the barriers that people can face. It was inspiring to see researchers developing HTA despite those challenges.

Can you tell us about the patient preference findings you presented?

The research we presented aimed to enhance our understanding of what myeloma patients specifically want from treatments, and is based on our CaPPRe research project, conducted by Myeloma UK in collaboration with Dr Simon Fifer from Community and Patient Preference Research (CaPPRe).

It considered a number of factors, such as what aspects of treatment myeloma patients particularly value and the maximum risk they are willing to accept. This type of research is important as it could help inform future projects conducted around drug development in myeloma and promote a more patient-centred approach.

What was the feedback you received from delegates like?

Delegates at both conferences were interested in our patient preference work, especially about how we developed the survey and worked with patients to design the survey. I also met with global biopharmaceutical company Celgene for a Patient Partners EHA meeting where I shared findings from the study with a range of patients and patient groups (such as Myeloma Patients Europe) who also expressed interest in the study and patient preference research.

This was all very positive as Myeloma UK’s aim is to help researchers decide what treatments to develop for myeloma patients and support our work to help deliver better treatments now and in the future.

The patient preference research project is part of the Myeloma UK Health Services Research Programme. Visit myeloma.org.uk/health-services-research for more information, or email our Research Team on research@myeloma.org.uk.