Summary
- New study from stem cell charity Anthony Nolan reveals barriers faced by healthcare professionals (HCPs) in gathering crucial patient reported outcomes (PROs) data such as quality of life and symptom burden.
- PROs are essential to help clinicians understand the impact of a stem cell transplant for patients, as recovery can take years and involve significant challenges to quality of life.
- The national survey of UK transplant centres revealed most healthcare professionals are unaware of common patient reported outcomes measures.
- Anthony Nolan says significant investment in workforce and data infrastructure is needed to provide fully informed patient-centred care for stem cell transplant.
New Anthony Nolan research
New research published in The Patient reveals stem cell transplant patients are missing out on vital data about their wellbeing and quality of life being collected during and after treatment.
Patient reported outcome (PRO) data collection is mandated in the UK for treatments including undergoing elective surgeries for hip and knee replacement to inform patient support and monitor the performance of NHS trusts.
The national survey revealed the majority of healthcare professionals (HCPs) in transplant centres are unaware of common PRO measures. Many also reported challenges to collect these data as part of routine practice.
Under 25% of HCPs reported using digital data collection methods. This is despite growing evidence that patients have a preference for digital methods (i.e. tablets, apps, web) over paper-based surveys.
Over half of HCPs reported they have limited capacity to collect PRO data, and over 80% agreed that data collection is limited by data infrastructure and workforce.
According to UK stem cell charity Anthony Nolan who delivered the research, patient reported outcome data are crucial to help inform patient-centred care improvements; especially in stem cell transplants, where patients experience significant quality of life challenges over an extended recovery time.
It says without extensive and accurate PRO data, HCPs will be limited in their ability to provide fully informed patient-centred care in the stem cell transplant setting.
The research follows the government’s recent initiative to improve access to healthcare data for researchers. The Health Data Research Service1 will mean gathered PRO data can have an even greater impact in research to improve healthcare practices.
Anthony Nolan says removing barriers to PRO data collection must be a priority in ensuring healthcare providers and researchers are not missing out on the potential of this data to influence healthcare practices and support patients.
Recommendations from the research team include greater investment in specialised workforce training and expansion, including improving capacity and infrastructure for transplant centres to collect PRO data, as well as support for the installation of digital infrastructure which enables data integration.
Dr Gemma Pugh, head of patient reported outcomes research at Anthony Nolan and lead author of the study said:
Patient reported outcomes are essential for truly patient-centred care – but collecting them at scale is no small feat. Currently, infrastructure and workforce is lacking in the UK to allow every transplant centre to collect PRO data in full.
Our survey of stem cell transplant services in the UK found the ability to gather PRO data requires investment in workforce and data management infrastructure. This includes IT systems to support digital surveys, dedicated staff to curate and analyse data and available supportive care services if a healthcare issue is identified through PRO measures.
If we want PROs to drive real change, we need to support the people and systems behind the data. That means empowering clinical teams with time and tools to collect PRO data and embedding PRO collection into routine care—not just research.
I believe, with sustained investment, healthcare infrastructure in the UK has the potential match our ambition for a future where every patient survives and thrives following a stem cell transplant.
Dr Gemma Pugh, head of patient reported outcomes research, Anthony Nolan
References
Link to paper: Pugh et al (2025c)
Full reference: Pugh, G., Yiallouridou, C., Hart, D., Miller, R. & Danby, R. Practical considerations towards the collection of patient reported outcome data among hematopoietic cell transplant recipients. Patient (2025). https://doi.org/10.1007/s40271-025-00769-z
References:
1. https://wellcome.org/news/national-data-service-will-simplify-access-health-data-research