A new resource may help minimise respondent burden in the collection of patient-reported outcomes.
Patients providing feedback on their health during research or in clinical practice could now find it less onerous, thanks to a set of recommendations developed by an international group of experts.
The study, led by researchers from the Centre for Patient Reported Outcomes Research (CPROR), NIHR Birmingham Biomedical Research Centre and Applied Research Collaboration at the University of Birmingham and published today in Nature Medicine, produced a list of 19 recommendations that researchers or clinicians can follow when planning and delivering the collection of patient-reported outcomes (PROs).
It is vital to understand the impact of disease and treatment from a patient perspective using PROs. However, we need to be mindful of the burden this may place on patients and research participants. Research and clinical teams are encouraged to seek input from PRO experts and utilise these recommendations when considering the implementation of PROs for healthcare research or clinical practice.
PROs are increasingly used in healthcare research to provide evidence of the benefits and risks of interventions from the patient perspective, and to inform regulatory decisions and health policy.
Although important, the completion of PROs may be potential burden on respondents – the patients – especially if responses are requested regularly. Patients can find this task difficult, time consuming, or emotionally stressful, leading to poor completion rates and missing data.
Produced in collaboration with patient partners and advocates, the 19 recommendations aim to address these issues and cover three categories:
Mr Roger Wilson CBE, a patient research partner involved in the study, commented: “PROs are a crucially important development for clinical research – the patient voice being heard alongside scientific data. Research such as this paper which clarifies the understanding of ‘how' to include PROs in a study alongside the ‘what’ to include is valuable. This study also emphasises the value created by involving patients in study development.”
The University of Birmingham is ranked amongst the world’s top 100 institutions, and its work brings people from across the world to Birmingham, including researchers and teachers and more than 6,500 international students from nearly 150 countries.
The Centre for Patient Reported Outcomes Research (CPROR), University of Birmingham, is dedicated to optimizing the use of PROs in clinical trials and routine care, to improve service delivery, enhance patient care and outcomes and ensure that the patient perspective is at the heart of health research and decision-making.
About the National Institute for Health and Care Research
The mission of the National Institute for Health and Care Research (NIHR) is to improve the health and wealth of the nation through research. We do this by:
NIHR is funded by the Department of Health and Social Care. Its work in low and middle income countries is principally funded through UK Aid from the UK government.
The NIHR Birmingham Biomedical Research Centre translates new scientific discoveries into treatments and diagnostics to improve people’s health. We focus on inflammation and the diagnosis, prevention and treatment of its associated long-term diseases. We are part of the NIHR and hosted by University Hospitals Birmingham NHS Foundation Trust in partnership with the University of Birmingham.
The NIHR Applied Research Collaboration West Midlands (ARC WM) is a five-year initiative, with a mission to create lasting and effective partnerships across health and social care organisations, and universities (the University of Birmingham, Keele University and the University of Warwick) in order to improve care services across the West Midlands. Our research is carried out across four substantive themes: Long-term conditions; Acute care interfaces; Integrated care in youth mental health; Maternity services; and four cross-cutting themes that underpin this research: Organisational sciences; Research methodology, rapid response and informatics; Public health; Social care.
This work was funded by Merck Healthcare KGaA, Darmstadt, Germany.
Associate Professor
Profile page for Dr Olalekan Lee Aiyegbusi, Associate Professor at the Institute of Applied Health Research.
