Patient and service user engagement in research: a systematic review and synthesized framework

ND Shippee, JP Domecq Garces… - Health …, 2015 - Wiley Online Library
Background There is growing attention towards increasing patient and service user
engagement (PSUE) in biomedical and health services research. Existing variations in …

Service user involvement in nursing, midwifery and health visiting research: a review of evidence and practice

E Smith, F Ross, S Donovan, J Manthorpe… - International journal of …, 2008 - Elsevier
OBJECTIVES: In the UK policy recommends that service users (patients, carers and the
public) should be involved in all publicly funded health and social care research. However …

Inclusion of patient-reported outcome measures in registered clinical trials: evidence from ClinicalTrials. gov (2007–2013)

E Vodicka, K Kim, EB Devine, A Gnanasakthy… - Contemporary clinical …, 2015 - Elsevier
Abstract Background Patient reported outcomes (PROs) have gained a prominent place in
clinical research. Previous estimates suggest that PRO measures are used in 14% of clinical …

Reasons for participating in randomised controlled trials: conditional altruism and considerations for self

SK McCann, MK Campbell, VA Entwistle - Trials, 2010 - Springer
Background Randomised controlled trials of healthcare interventions depend on the
participation of volunteers who might not derive any personal health benefit from their …

[LIBRO][B] Guide to the de-identification of personal health information

K El Emam - 2013 - books.google.com
Offering compelling practical and legal reasons why de-identification should be one of the
main approaches to protecting patients' privacy, this book outlines a proven, risk-based …

Recruitment of minority and underserved populations in the United States: the Centers for Population Health and Health Disparities experience

ED Paskett, KW Reeves, JM McLaughlin… - Contemporary clinical …, 2008 - Elsevier
OBJECTIVE: The recruitment of minority and underserved individuals to research studies is
often problematic. The purpose of this study was to describe the recruitment experiences of …

“We're checking them out”: Indigenous and non-Indigenous research participants' accounts of deciding to be involved in research

M Guillemin, L Gillam, E Barnard, P Stewart… - International Journal for …, 2016 - Springer
Background It is important for researchers to understand the motivations and decision-
making processes of participants who take part in their research. This enables robust …

A systematic review highlights threats to validity in studies of barriers to cancer trial participation

D Fayter, C McDaid, A Eastwood - Journal of clinical epidemiology, 2007 - Elsevier
OBJECTIVE: To investigate the barriers, modifiers, and benefits involved in participating in
randomized controlled trials of cancer therapies as perceived by health care providers and …

Trials need participants but not their feedback? A sco** review of published papers on the measurement of participant experience of taking part in clinical trials

C Planner, P Bower, A Donnelly, K Gillies, K Turner… - Trials, 2019 - Springer
Background Participant recruitment and retention are long-standing problems in clinical
trials. Although there are a large number of factors impacting on recruitment and retention …

Assessment of patients' willingness to participate in a randomized trial of spinal versus general anesthesia for lumbar spine surgery

G De Biase, S Chen, E Ziu, D Garcia, E Bojaxhi… - World neurosurgery, 2022 - Elsevier
Background Prospective nonrandomized studies have found less postoperative fatigue and
improved quality of life in patients undergoing awake spine surgery under spinal anesthesia …