Patient and public involvement in designing and conducting doctoral research: the whys and the hows

Abstract

Plain English summary Evidence shows that public and patient involvement in research has a positive effect on its quality and end-results. Thus, public and patient involvement in all stages of research is becoming commonplace. There are limited detailed examples however, that describe how to make this possible, especially for those doing PhD research. Doctoral researchers are often new to research practice or have limited experience and are often bound by strict time and financial constraints. It is also not usually a requirement of the award to involve public and patients in their research. Hence, they may not feel confident or motivated to involve or engage with public and patients during their research. We, four doctoral researchers, share examples from our own research studies that have included different approaches to public and patient involvement. Two studies formed public and patient advisory groups who helped design the research questions, data collection tools and recruitment methods. One enlisted the help of an online public and patient panel from a local hospital. A different study worked with patients from an established group to help define key medical words. We did face some challenges, such as the need to develop good group work skills and to apply for grants to cover reimbursement, but we all found it beneficial to involve patients in our studies. We noticed a positive effect on each study’s progression and an improvement in our own self-esteem. In addition, having public and patient involvement helped reduce the isolation we felt as doctoral researchers. Thus, we strongly encourage more doctoral researchers to involve public and patients in their studies. Abstract Public and patient involvement (PPI) has been shown to have a positive impact on health and social care research. However, adequate examples describing how to operationalise effective PPI, especially in doctoral studies, are lacking. Hence, doctoral researchers new to research, or those with limited experience, can be discouraged from facilitating PPI in their research. This paper aims to describe and discuss in detail the approaches used by four doctoral researchers to incorporate PPI at different stages of their research studies from study design to disseminating findings. We aim to inform other doctoral researchers about the challenges and limitations relating to PPI that we faced. Through these, we share pragmatic recommendations for facilitating PPI during doctoral studies. The description of four case studies demonstrated that PPI could be incorporated at various stages during doctoral research. This has had a beneficial impact on our research study progression, researcher self-esteem and lastly, helped alleviate researcher isolation during doctoral studies.

Patient and public involvement in doctoral research: reflections and experiences of the PPI contributors and researcher

“…There is little evidence describing PPI in doctoral research [25,26]. Moreover, researchers rarely provide a complete picture of what happened during the research process.…”

Reflections of older people about their experience of fall prevention exercise in the community- a qualitative study exploring evidence-based practice

“…Minogue et al [ 38 ] suggested that involving “users” in research would reduce wasted research and enhance the quality of fall-prevention initiatives. According to Tomlinson et al [ 39 ], PPI in research may improve the quality of research projects and strengthen the relevance and impact of research. In addition to these benefits, participants and members of the public reported that they were provided with a mechanism to share their experiences while directly influencing change, empowering them to contribute to society and gain new skills [ 39 ].…”

A protocol for the establishment and evaluation of an older adult stakeholder panel for health services research

“…The available literature on PPI involving older adults indicates that there are many benefits and challenges of engaging older adults in the research process, but challenges can be overcome. There is a need to build evidence that involvement has a positive impact on research processes 25 , 46 . This paper describes the methodological approach adopted to recruit and establish a PPI panel of older adults, family carers and academic researchers and our plans for describing the process and evaluating its impact on the research panel.…”