2014 Conference

Abstract: Health service researchers are realising that patients can be an important source of knowledge in reducing avoidable harm and improving care, however, patients rarely have the means to share this information and may feel uncertain in doing so. Patients with kidney failure regularly require complex care in a range of environments but little is known about giving them the option to report on quality and safety and whether this is beneficial. Renal patient view (RPV) is a web-based electronic patient record that gives information to patients with kidney disease about their diagnosis, treatment, and latest blood tests – accessible from any networked computer. During this study, kidney patients have co-designed a system for patients to feedback both their positive experiences and concerns about quality and safety during the care they receive. As part of this study a patient-led steering group was set up to oversee and actively steer the study. This group consisted of kidney patients from the various stages of the disease, researchers and health care professionals.

In this presentation, we will present:

  • The ways in which members of the patient-led steering group worked together to co-design the patient feedback system
  • How the involvement of patients was evaluated
  • What worked well
  • What didn’t work well and the lessons that can be learnt.

We will present examples of how the patient-led steering group was involved in the study and the design of the patient feedback system, as well as discussing the challenges of undertaking meaningful public involvement.

Authors

Armitage ~ Gerry

Professor of Health Services Research, University of Bradford. Gerry Armitage was a nurse for 13 years. He then worked as a lecturer and researcher in higher education and more recently at the Bradford Institute for Health Research. Interests include: medication safety, patient involvement, and incident reporting. In 2012, he took up a senior academic post at the University of Bradford.

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Crane ~ Dennis

Dennis Crane is the North West Region Advocacy Officer for the National Kidney Federation. After helping to establish the North West Region Kidney Patient Association (KPA) in 1983, Dennis worked on a voluntary basis for more 20 years with renal and transplant related organisations regionally and nationally, prior to being appointed to his current post in April 2004.

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Giles ~ Sally

Sally Giles is a health services researcher at the National Institute for Health Research (NIHR) Manchester Primary Care Patient Safety Translational Research Centre, University of Manchester with both qualitative and quantitative research skills and experience. Over the last 12 years Sally has led and worked on a variety of research projects relating to quality and safety in the NHS. A main focus of her work has been patient involvement in patient safety, particularly in the design and development of patient safety interventions.

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Parveen ~ Sahdia

Sahdia Parveen is a post-doctoral research fellow with the Bradford Dementia Group at the University of Bradford. She is a health psychology researcher with expertise in working with minority ethnic communities and an interest in patient involvement in health care research.

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Reynolds ~ Caroline

Caroline Reynolds is a registered Operating Department Practitioner working as a Research Practitioner within the Bradford Institute for Health Research and studying for a Postgraduate Diploma in Health Research. Current projects include developing an intervention to promote organisational learning using patient reports of organisational safety and patient safety incidents.

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