Tools to improve reporting of patient-oriented research

… journal of technology …, 2011

The aim of this study was to develop the GRIPP (Guidance for Reporting Involvement of Patients and Public) checklist to enhance the quality of PPI reporting. Methods: Thematic analysis was used to synthesize key issues relating to patient and public involvement (PPI) identified in the PIRICOM and PAPIRIS systematic reviews. These issues informed the development of the GRIPP checklist. Results: The key issues identified included limited conceptualization of PPI, poor quality of methods reporting, unclear content validity of studies, poor reporting of context and process, enormous variability in the way impact is reported, little formal evaluation of the quality of involvement, limited focus on negative impacts, and little robust measurement of impact. The GRIPP checklist addresses these key issues. Conclusion: The reporting of patient and public involvement in health research needs significant enhancement. The GRIPP checklist represents the first international attempt to enhance the quality of PPI reporting. Better reporting will strengthen the PPI evidence-base and so enable more effective evaluation of what PPI works, for whom, in what circumstances and why.

Research Involvement and Engagement

With the growing movement to engage patients in research, questions are being asked about who is engaging patients and how they are being engaged. Internationally, research groups are supporting and funding patientoriented research studies that engage patients in the identification of research priorities and the design, conduct and uptake of research. As we move forward, we need to know what meaningful patient engagement looks like, how it benefits research and clinical practice, and what are the barriers to patient engagement? We conducted a review of the published literature looking for trials that report engaging patients in the research. We included both randomized controlled trials and non-randomized comparative trials. We looked at these trials for important study characteristics, including how patients were engaged, to better understand the practices used in trials. Importantly, we also discuss the number of trials reporting patient engagement practices relative to all published trials. We found that very few trials report any patient engagement activities even though it is widely supported by many major funding organizations. The findings of our work will advance patient-oriented research by showing how patients can be engaged and by stressing that patient engagement practices need to be better reported. Abstract Background: Patient-Oriented Research (POR) is research informed by patients and is centred on what is of importance to them. A fundamental component of POR is that patients are included as an integral part of the research process from conception to dissemination and implementation, and by extension, across the research continuum from basic research to pragmatic trials [

Journal of Orthopaedic & Sports Physical Therapy, 2020

If including patients as equal partners in health care research is increasingly regarded as “the right thing to do,” then it is important that researchers and patients “do it right.” The research community should be aware of, use, and share resources that support best practices in this domain. The first editorial in the series focused on why researchers should engage patient partners on research teams. In this, the second editorial in the series, we concentrate on how to engage patient partners and highlight a selection of resources to help researchers and to demystify patient partnerships in research

Quality of Life Research, 2015

Purpose To provide an overview of PCORI's approach to engagement in research. Methods The Patient-Centered Outcomes Research Institute (PCORI) was established in 2010 to fund patientcentered comparative effectiveness research. Requirements for research funding from PCORI include meaningful engagement of patients and other stakeholders in the research. PCORI's approach to engagement in research is guided by a conceptual model of patient-centered outcomes research (PCOR), that provides a structure for understanding engagement in research. Results To understand and improve engagement in research PCORI is learning from awardees and other stakeholders. Those efforts are described along with PCORI's capacity building and guidance to awardees via the Engagement Rubric. PCORI's unique model of engaging patients and other stakeholders in merit review of funding applications is also described. Additional support for learning about engagement in research is provided through specific research funding and through PCORI's major infrastructure initiative, PCORnet. Conclusion PCORI requires engagement of stakeholders in the research it funds. In addition PCORI engages stakeholders in activities including review of funding applications and establishment of CER research infrastructure through PCORnet. The comprehensive approach to engagement is being evaluated to help guide the field toward promising practices in research engagement.

BMC medical research methodology, 2018

A number of conceptual frameworks for patient and public involvement (PPI) in research have been published in recent years. Although some are based on empirical research and/or existing theory, in many cases the basis of the conceptual frameworks is not evident. In 2015 a systematic review was published by a collaborative review group reporting a meta-narrative approach to synthesise a conceptual framework for PPI in research (hereafter 'the synthesis'). As the first such synthesis it is important to critically scrutinise this meta-narrative review. The 'RAMESES publication standards for meta-narrative reviews' provide a framework for critically appraising published meta-narrative reviews such as this synthesis, although we recognise that these were published concurrently. Thus the primary objective of this research was to appraise this synthesis of conceptual frameworks for PPI in research in order to inform future conceptualisation. Four researchers critically appr...

Health Expectations, 2013

Background There is growing attention towards increasing patient and service user engagement (PSUE) in biomedical and health services research. Existing variations in language and design inhibit reporting and indexing, which are crucial to comparative effectiveness in determining best practices.

Research Involvement and Engagement

Albertans4HealthResearch, supported by the Alberta Strategy for Patient-Oriented Research Patient Engagement Team, hosted a virtual round table discussion to develop a list of considerations for successful partnerships in patient-oriented research. The group, which consists of active patient partners across the Canadian province of Alberta and some research staff engaged in patient-oriented research, considered advice for academic researchers on how to best partner with patients and community members on health research projects. The group identified four main themes, aligned with the national strategy for patient-oriented research (SPOR) patient engagement framework, highlighting important considerations for researchers from the patient perspective, providing practical ways to implement SPOR’s key principles: inclusiveness, support, mutual respect, and co-building. This commentary considers the process behind this engagement exercise and offers advice directly from active patient re...

F1000Research, 2018

International government guidance recommends patient and public involvement (PPI) to improve the relevance and quality of research. PPI is defined as research being carried out ‘with’ or ‘by’ patients and members of the public rather than ‘to’, ‘about’ or ‘for’ them (http://www.invo.org.uk/). Patient involvement is different from collecting data from patients as participants. Ethical considerations also differ. PPI is about patients actively contributing through discussion to decisions about research design, acceptability, relevance, conduct and governance from study conception to dissemination. Occasionally patients lead or do research. The research methods of PPI range from informal discussions to partnership research approaches such as action research, co-production and co-learning. This article discusses how researchers can involve patients when they are applying for research funding and considers some opportunities and pitfalls. It reviews research funder requirements, dr...

Health expectations : an international journal of public participation in health care and health policy, 2018

Patient engagement in research (PEIR) is promoted to improve the relevance and quality of health research, but has little conceptualization derived from empirical data. To address this issue, we sought to develop an empirically based conceptual framework for meaningful PEIR founded on a patient perspective. We conducted a qualitative secondary analysis of in-depth interviews with 18 patient research partners from a research centre-affiliated patient advisory board. Data analysis involved three phases: identifying the themes, developing a framework and confirming the framework. We coded and organized the data, and abstracted, illustrated, described and explored the emergent themes using thematic analysis. Directed content analysis was conducted to derive concepts from 18 publications related to PEIR to supplement, confirm or refute, and extend the emergent conceptual framework. The framework was reviewed by four patient research partners on our research team. Participants' experi...

BMJ open, 2018

While documented plans for patient and public involvement (PPI) in research are required in many grant applications, little is known about how frequently PPI occurs in practice. Low levels of reported PPI may mask actual activity due to limited PPI reporting requirements. This research analysed the frequency and types of reported PPI in the presence and absence of a journal requirement to include this information. A before and after comparison of PPI reported in research papers published in before and 1 year after the introduction of a journal policy requiring authors to report if and how they involved patients and the public within their papers. Between 1 June 2013 and 31 May 2014, published 189 research papers and 1 (0.5%) reported PPI activity. From 1 June 2015 to 31 May 2016, following the introduction of the policy, published 152 research papers of which 16 (11%) reported PPI activity. Patients contributed to grant applications in addition to designing studies through to coauth...