Myeloma UK’s health services research team (HSR) had a prominent presence at the British Society of Haematology (BSH) Annual Conference in Birmingham this year, showcasing their groundbreaking research.
With a strong focus on addressing the unmet needs of patients, HSR presented their findings on shared decision-making, imaging at myeloma diagnosis, and patient-centric care.
Patient-centric perspectives: Understanding unmet and emerging needs
In a thought-provoking symposium sponsored by Pfizer, Dr Sandra Quinn [@SandraQuinnMonk] unveiled initial results from HSR’s comprehensive survey on ‘Unmet and Emerging Needs in myeloma’.
This pioneering research captures the diverse experiences reported by patients throughout diagnosis and treatment.
The insights shared by Dr Quinn painted a vivid picture of the challenges faced by myeloma patients, changing the perspective on how researchers, industry professionals and clinicians think about patient care.
The real-world big data (n=1,049 participants) shared by Dr Quinn revealed a wide range of symptoms at diagnosis that have not previously been identified, the significantly increased number of symptoms experienced by patients with a delayed and timely diagnosis, alongside the continued side-effects profile that patients experience throughout each line of treatment.
These insights challenge current perspectives on myeloma. A follow-up survey has been completed to understand better how these relate to quality of life, treatment decision making and the ability of patients to self-manage their disease.
The HSR team is devising strategies to disseminate these results widely, owing to the overwhelming interest generated at the BSH conference.
Putting patients first: Transforming decision-making in haemato-oncology
Our Postdoctoral Researcher, Dr Lauren Kelly [@Dr_L_K], presented a compelling poster on shared decision-making in haemato-oncology.
Collaborating with HSR Manager Dr Sandra Quinn and myeloma patient Ms Rachel Copeland, Dr Kelly conducted a systematic review assessing the efficacy of decision aids in facilitating shared decision-making during consultations.
The poster underscored the critical need for developing decision aids that genuinely incorporate patient voices.
Currently, HSR is analysing the results, intending to publish their findings in the coming weeks.
Mapping regional disparities: UK Geographical inequalities in first-line imaging practice
Health Services Research Manager Dr Sandra Quinn and co-author Prof Guy Pratt shed light on geographical inequalities in first-line imaging practice for myeloma in the UK.
Despite recommendations from the National Institute for Health and Care Excellence (NICE), a significant number of myeloma patients continue to undergo skeletal surveys at the initial stage, alongside repeated scanning.
The HSR team, alongside co-authors Prof Guy Pratt, Prof Vicky Goh and Dr Olwen Westerland, have submitted a paper advocating for improved imaging practice in the UK.
Empowering change agents: HSR’s research guiding myeloma care innovations
The research presentations by the HSR team at BSH provided a valuable glimpse into their groundbreaking work on addressing unmet and emerging needs in myeloma.
From revolutionising shared decision-making to uncovering regional disparities in imaging practices, their posters showcased significant insights. However, these findings only scratch the surface of the extensive research conducted by HSR.
With an unwavering commitment to amplifying the patient voice, the team continues to advocate for enhanced care and improved outcomes for patients with myeloma and related conditions. The HSR team’s contributions pave the way for future progress in the field, guiding clinicians, industry professionals, and researchers towards patient-centric approaches and more effective interventions.