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Person-centred data collection methods to embed the authentic voice of people who experience health challenges
  1. Sarah Jane Prior1,
  2. Carey Mather2,
  3. Karen Ford3,
  4. Danielle Bywaters2,
  5. Steven Campbell2
  1. 1Tasmanian School of Medicine, University of Tasmania, Cradle Coast Campus, Tasmania, Australia
  2. 2School of Nursing, University of Tasmania, Newnham Campus, Tasmania, Australia
  3. 3School of Nursing, University of Tasmania, Hobart, Tasmania, Australia
  1. Correspondence to Dr Sarah Jane Prior; sarah.prior{at}utas.edu.au

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Introduction

The patient or consumer voice in healthcare has evolved from an aspiration to becoming an expectation, which in some developed countries is respected by inclusion in nationally auditable standards (Australian Commission on Safety and Quality in HealthCare.1 2 Inclusive and appropriate research about patient perspectives requires skills and resources to ensure that sound quality assurance processes are designed, delivered and evaluated. Understanding the characteristics of the population is key to ensuring appropriate representation of consumers in person-centred or patient involvement research methods. Vulnerable patients, those with ongoing health and literacy challenges, can benefit from advocacy, and often are not used to being valued in terms of their own views, lacking empowerment to present their own opinions. Additionally, traditional methods need to be used more sensitively to ensure that these consumers can be included and participate equitably in the quality assurance process.

Meaningful person-centred engagement is occurring more often in healthcare settings through the process of codesign. Originating from design science, codesign is defined as the engagement of patients and other consumers, to capture their experiences in the design or redesign, of healthcare services and is a central concept of health improvement initiatives.3 Codesign includes core principles of equity, understanding of experience and service improvement and provides an avenue for person-centred participation, recognising that consumer experience and knowledge is increasingly being considered important to complement professional knowledge.4 Direct engagement of patients and other consumers in research and health service improvement activities requires careful methodological planning around desirability and feasibility and the practical implications for the involvement of patients and consumer as participants.5

The following examples of person-centred research methods enable the authentic voice of individuals who experience health challenges to be collected. The five approaches provide opportunities for the voice of consumers to be heard. Each of …

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