What matters to you? Public and patient involvement in the design stage of research

Abstract

Abstract Background Public and patient involvement is critical to ensure that research is relevant and addresses what matters most to the person through co-production. Involvement at the design stage where ideas for research are developed prior to formal ethical approval, can positively influence the direction of research design, methods, and outcomes. Although ethical approval is not required at this stage, being ethically conscious is imperative to prevent unwarranted unethical practices. To ensure this, the public and patient intervention at the design stage of a doctoral research project was benchmarked against Pandya-Woods 10 ethically conscious standards and the INVOLVE values and principles framework. Ethical approval was also gained for publication. Main body Patient and public involvement was undertaken with two diverse patient and public groups as an agenda item in their regular Teams meeting. Thoughts on the research project, the timeline, what matters most to the individuals in the group with regarding the design and outcomes from the research, the best method for data collection for public research, and next steps were discussed. Conclusion Public and patient involvement had a positive influence on the design and outcomes of a doctoral research proposal and held the researcher accountable for impact of the research on the public. Positive changes to the research from working with public and patients exploring ‘what matters to you’ included: An ontological change in the way that the research was conducted, identification of some main themes to run as a thread throughout the research, development of content for an international scoping review, identification of the best method for data collection for patient research, and accountability of the researcher to write a plain English summary at the beginning of each thesis chapter, and a summary report at the end for dissemination.

Keywords

• Public and Patient involvement
• Design phase of research
• Influence
• Impact
• Accountability
• Ethics