Avoidable waste in the production and reporting of research evidence, Lancet, vol.374, pp.86-95, 2009. ,
Range and heterogeneity of outcomes in randomized trials of pediatric chronic kidney disease, J Pediatr, vol.186, pp.110-117, 2017. ,
Developing core outcome sets for clinical trials: issues to consider, Trials, vol.13, p.132, 2012. ,
Core outcome Set-STAndards for development: the COS-STAD recommendations, PLoS Med, vol.14, p.1002447, 2017. ,
Survey indicated that core outcome set development is increasingly including patients, being conducted internationally and using Delphi surveys, Trials, vol.19, p.113, 2018. ,
Using the Delphi technique to determine which outcomes to measure in clinical trials: recommendations for the future based on a systematic review of existing studies, PLoS Med, vol.8, p.1000393, 2011. ,
Including patients in core outcome set development: issues to consider based on three workshops with around 100 international Delegates, Res Involv Engagem, vol.2, 2016. ,
Improving core outcome set development: qualitative interviews with developers provided pointers to inform guidance, J Clin Epidemiol, vol.86, pp.140-52, 2017. ,
Recruiting and retaining participants in e-Delphi surveys for core outcome set development: evaluating the COMiT'ID study, PLoS One, vol.13, p.201378, 2018. ,
A survey of Delphi panelists after core outcome set development revealed positive feedback and methods to facilitate panel member participation, J Clin Epidemiol, vol.102, pp.99-106, 2018. ,
Qualitative research practice: a guide for social science students and researchers, 2013. ,
Thematic analysis, Qual Res Clin Health Psychol, vol.24, pp.95-114, 2014. ,
Simplifying qualitative data analysis using General purpose software tools, Field methods, vol.16, pp.85-108, 2004. ,
Checklists for improving rigour in qualitative research: a case of the tail wagging the dog?, BMJ, vol.322, pp.1115-1122, 2001. ,
Standards for reporting qualitative research: a synthesis of recommendations, Acad Med, vol.89, pp.1245-51, 2014. ,
Public involvement at the design stage of primary health research: a narrative review of case examples, Health Policy, vol.95, pp.10-23, 2010. ,
From tokenism to empowerment: progressing patient and public involvement in healthcare improvement, BMJ Qual Saf, vol.25, pp.626-658, 2016. ,
From tokenism to meaningful engagement: best practices in patient involvement in an EU project, Res Involv Engagem, vol.1, 2015. ,
Patient and carer involvement in healthcare education, service delivery and research: avoiding tokenism, Evid Based Nurs, vol.22, pp.65-71, 2019. ,
Using qualitative health research methods to improve patient and public involvement and engagement in research, Res Involv Engagem, vol.4, 2018. ,
Plain language: a strategic response to the health literacy challenge, J Public Health Policy, vol.28, pp.71-93, 2007. ,
Health literacy and public health: a systematic review and integration of definitions and models, BMC Public Health, vol.12, p.80, 2012. ,
Exploring patient involvement in healthcare decision making across different education and functional health literacy groups, Soc Sci Med, vol.69, pp.1805-1817, 2009. ,
The evolving concept of health literacy, Soc Sci Med, vol.67, pp.2072-2080, 2008. ,
Health literacy in Europe: comparative results of the European health literacy survey ,
, Eur J Public Health, vol.25, pp.1053-1061, 2015.
Health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century, Health Promot Int, vol.15, pp.259-67, 2000. ,
Health literacy: applying current concepts to improve health services and reduce health inequalities, Public Health, vol.132, pp.3-12, 2016. ,
The prevalence of limited health literacy, J Gen Intern Med, vol.20, pp.175-84, 2005. ,
The power of digital Storytelling as a culturally relevant health promotion tool, Health Promot Pract, vol.17, pp.793-801, 2016. ,
Applying best practices to designing patient education for patients with end-stage renal disease pursuing kidney transplant, Prog Transplant, vol.25, pp.77-90, 2015. ,
Storytelling and professional learning: a phenomenographic study of students' experience of patient digital stories in nurse education, Nurse Educ Today, vol.31, pp.289-93, 2011. ,
What is "quality of evidence" and why is it important to clinicians?, BMJ, vol.336, pp.995-1003, 2008. ,
The Delphi method: Addison-Wesley reading, 1975. ,
The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: a review, J Clin Epidemiol, vol.45, pp.743-60, 1992. ,
Standard 5: selection, measurement, and reporting of outcomes in clinical trials in children: table 1, Pediatrics, vol.129, pp.146-52, 2012. ,
Quality of life before intensive care using EQ-5D: patient versus proxy responses, Crit Care Med, vol.41, pp.9-14, 2013. ,
Quality of life in dementia: a study on proxy bias, BMC Med Res Methodol, vol.13, p.110, 2013. ,