centre for kidney research:Patient Perspectives, Preferences and Priorities

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Patient Perspectives, Preferences and Priorities

The key objective of our research on patient perspectives, preferences and priorities is to promote patient-centred research and care. Patients are experts as they are the ones who live with chronic kidney disease, dialysis and transplantation. Patients bring unique perspectives as they have intimate knowledge of how interventions effect physical, social and mental functioning and how this in turn influences the ability to participate in the normal activities of life.

It is important to identify when patient priorities differ from those of health professionals as this may indicate deficiencies in clinical research, short comings in clinical practice guidelines or areas where there is a poor understanding of the consequences of an outcome. The latter may indicate the need for different communication/education strategies or tools such as decision aids.

Patient perspectives and priorities are researched using a mix of qualitative and quantitative techniques and are being applied to the following areas:

  • Defining sub-topics for clinical practice guidelines
  • Identifying critical outcomes for inclusion as core outcomes in trials (see the SONG initiative)
  • Evaluating the relative importance of outcomes after receiving a kidney transplant
  • Factors influencing the allocation and acceptance of extended criteria deceased donor organs

Team

  • Martin Howell
  • Allison Tong
  • Germaine Wong