Patient and public involvement in research: a review of practical resources for young investigators

Abstract

Patient and public involvement (PPI) in every aspect of research will add valuable insights from patients’ experiences, help to explore barriers and facilitators to their compliance/adherence to assessment and treatment methods, bring meaningful outcomes that could meet their expectations, needs and preferences, reduce health care costs, and improve dissemination of research findings. It is essential to ensure competence of the research team by capacity building with available resources on PPI. This review summarizes practical resources for PPI in various stages of research projects—conception, co-creation, design (including qualitative or mixed methods), execution, implementation, feedback, authorship, acknowledgement and remuneration of patient research partners, and dissemination and communication of research findings with PPI. We have briefly summarized the recommendations and checklists, amongst others, for PPI in rheumatic and musculoskeletal research (e.g. the European Alliance of Associations for Rheumatology (EULAR) recommendations, the Core Outcome Measures in Effectiveness Trials (COMET) checklist and the Guidance for Reporting Involvement of Patients and the Public (GRIPP) checklist). Various tools that could be used to facilitate participation, communication and co-creation of research projects with PPI are highlighted in the review. We shed light on the opportunities and challenges for young investigators involving PPI in their research projects, and have summarized various resources that could be used to enhance PPI in various phases/aspects of research. A summary of web links to various tools and resources for PPI in various stages of research is provided in Additional file 1.

#DryByChristmas: A patient and public involvement study on women's engagement with humorous pelvic floor muscle training digital nudges on social media

“…This PPI work aimed to provide preliminary information on how women engaged with humorous digital PFMT nudges on Instagram as part of a social media campaign to promote PFMT. The Guidance for Reporting Involvement of Patients and the Public Version 2 short form checklist was used to enhance the quality, transparency and consistency of reporting the study 4,19 …”

“…2 Studies have shown PPI improves research quality, relevance and impact by increasing the likelihood of research translating into practice and improving population health 3 by providing insights into the patient experience and highlighting barriers and facilitators to treatment adherence. 4 A means of involving the public in research is through contribution to important decisions in the research process, such as the design of novel interventions. 3 PPI is vital in women's health research because it engages a historically underserved population.…”

“…PPI involves the public in different ways to allow them to contribute to important decisions in the research process, such as providing feedback and suggestions on tools or interventions from a consumer perspective 2 . Studies have shown PPI improves research quality, relevance and impact by increasing the likelihood of research translating into practice and improving population health 3 by providing insights into the patient experience and highlighting barriers and facilitators to treatment adherence 4 . A means of involving the public in research is through contribution to important decisions in the research process, such as the design of novel interventions 3 …”

AMESobreRuedas: early power mobility for increasing participation in children with Spinal Muscular Atrophy type I. Protocol of a randomized controlled trial

“…During the last 4 weeks of the study, the use of the powered mobility device will be free, and the child might use the device when he or his family decide so. Follow-up period will be carried out using Photovoice (29) for capturing photographs under the basis of Participatory Action Research (PAR) (30) and the Public and Patient Involved (PPI) (31,32) approach in the research. To do this, the families will be trained to capture high-quality photos during their children's routine moments while using the device.…”

Patient and public involvement in rheumatic and musculoskeletal research: an idea whose time has firmly come

“…The 31 articles published in this Article collection can be categorized into several PPI-related themes spanning all stages of research—patient education/empowerment/engagement/perspectives, research priority setting, co-created design, improving outcomes, patient-led design, harnessing clinical care frameworks, community/patient advisory boards and quality evaluation. First, Arumugam et al [ 1 ] provided a brief review introducing the background of PPI along with practical considerations, referencing frameworks, guidance and tools for researchers to get started—most notably, a helpful table was created with links to resources as an additional file for help integrating PPI throughout the research lifecycle.…”