Larry Smith

Background Recent studies mention a need to investigate partnership roles and dynamics within patient and public involvement and engagement (PPIE) in health research, and how impact and outcomes are a...

Focus on patient and public involvement and engagement (PPIE) is increasing in health policy and research governance. PPIE is considered by some to be…

Patient and public involvement (PPI) in health professional education (HPE) varies widely across institutions, reflecting different stages of implementation and integration. While some have successful...

Context Patient and public involvement (PPI) is increasingly required in health research funding applications, yet few studies detail how to embed meaningful involvement throughout the grant developme...

Context Most primary care practices are now owned by health systems that prioritize population health, patient experience, and value-generation but have limited research cultures to further these goal...

611Background: Healthcare is highly regulated to ensure that the highest standards of care are consistently followed in the pursuit of optimal patient outcomes. Regulatory bodies such as The Joint Com...

472Background: Learning collaboratives are a widely used to support the spread of complex innovations, but little is known about how learning collaboratives develop. The OncoPRO initiative, a PCORI-fu...

Fostering a learning environment committed to diversity, equity, inclusion, and belonging is a priority for residency training programs and a moral imperative to work toward a just, equitable healthcare and education for all. Efforts in this space may be overwhelming...

Objectives The aim of the study was to evaluate the healthcare costs and effects of a remote person-centred care (PCC) add-on intervention compared with usual care for people with chronic heart failur...

Aim To shape an intergenerational engagement (IE) intervention through consultation with a patient and public involvement (PPI) group. Design This paper describes how PPI contributed to refining a.....

The multiyear gap between the translation of research evidence into changes in practice at the bedside and health policy is well established. A considered approach is required to address this gap whil...

Background Patient-oriented research is becoming an established mode of healthcare research in Canada. It is supported by the Strategy for Patient-oriented Research (SPOR), launched by the Canadian Institutes of Health Research. One core element of SPOR is the SUpport for People and Patient-oriented Research and Trials (SUPPORT) Units, which is tasked to promote and facilitate patient-oriented research across provinces and territories in the country. Under the strategy, patient partners are welcomed and engaged as equal team members from the beginning to the very end of health research projects to share their lived experience with a medical condition and their interactions with healthcare systems. Main body In this Commentary, two patient partners reflect on how they worked hand-in-hand with the BC SUPPORT Unit to co-develop activities to support patient-oriented research. This was achieved through mutual understanding, building trust, and staying true to SPOR values. Through a variety of roles - including serving on committees and working groups, initiating research projects, and participating in knowledge translation activities like webinars and conferences, the patient partners and the Unit grew stronger together. Conclusion This commentary exemplifies how a national health research strategy can foster alliances, where individuals within an organization encourage and empower each other to drive progress in health research.

This is the introductory paper in a collection of five papers on the BC SUPPORT Unit, a component of the pan-Canadian Strategy for Patient-Oriented Research (SPOR), and is match funded by the Canadian...

Patient-oriented research (POR) engages people with lived experience as partners in health research priority-setting, design, and knowledge translation, ensuring research outcomes are relevant for peo...

Including patients and next of kin as partners in research can help promote the development and dissemination of results that are inclusive, usable and relevant to health service settings. However, the impact of such involvement remains largely anecdotal, necessitating research to identify methods for achieving meaningful involvement. The aim was to examine how patient partners are involved in research across health service settings by addressing three objectives: (1) How are patient partners involved in the research process? (2) What is the impact of involving patient partners in research? (3) What defines effective patient partner involvement in research? We conducted a scoping review by searching five databases (Embase, Scopus, MEDLINE, CINAHL, PsycINFO) and grey literature. Published reviews within health service settings examining patient partner involvement were included. Protocol papers and reviews on patient involvement in treatment and care were excluded. The review adhered to Arksey and O’Malley’s methodological framework and followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Checklist. A total of 124 reviews were included. Most reviews have been published after 2014, primarily from the United Kingdom, Canada and the United States of America. Patient partners were involved with consultation and collaboration approaches in different stages of the research process, including identifying and prioritising (n = 49), designing (n = 57), managing (n = 40), undertaking (n = 53) and disseminating (n = 51) and less in commissioning (n = 11), implementing (n = 6) and evaluating impact (n = 17). Impact reporting varied, with few reviews (n = 11) explicitly defining ‘impact’ and its related concepts. Sixteen key enablers for effective patient partner involvement were identified. The most reported enablers included partnerships built on trust and inclusive communication (n = 56), training and support for patient partners (n = 53), flexibility (n = 48) and adequate resources (n = 45). A significant gap exists in defining and measuring patient partner involvement. Adequate resources and training are essential for furthering trust-based, inclusive partnerships between researchers and patient partners. Future research should prioritise improving impact assessment, addressing power imbalances and refining best practices to enhance effective involvement. Two authors contributed with lived experience as patients and next of kin. Four patient partners were consulted about the results, one of whom coauthored this scoping review. Patients and next of kin are encouraged to participate in planning, conducting and evaluating research studies. This involvement can generate more diverse, usable and valid research results. However, what constitutes ‘good enough’ involvement has not been thoroughly investigated. We aim to describe how patients and next of kin can be involved in research by answering three main objectives: (1) How are patient partners and next of kin involved in research? (2) How does involvement change the research? (3) What makes patient involvement in research work well? We carried out a scoping review, a type of research that maps out what has been studied so far, to summarise how researchers report involving patient partners in their studies and how this involvement affects the quality of the studies. We looked at 124 reviews. Most of the reviews were published in the United Kingdom, Canada, and the United States of America. Patients and next of kin take part in different research, mostly by giving advice or working closely with researchers. However, most reviews did not define what impact or related terms mean. Most also pointed out that researchers do not report clearly how patient involvement makes a difference. Sixteen enablers were found to foster the effective involvement of patient partners. In short, good teamwork based on trust, clear communication, and enough funding, training, and support is key to making patient involvement work well. We suggest that future research should create better guidelines to support effective involvement and find ways to measure its impact.

Introduction Patient and public involvement and engagement (PPIE), in its various forms, offers a wide range of potential benefits to research, health services and systems, and to those involved in this collaborative process. As PPIE has expanded over the years, so too have expectations regarding the evaluation of its effects and impacts. Methods We conducted a narrative review synthesis of review articles around measurement of PPIE impact – conceptualising ‘impact’ to include any type of effect on people or processes, both proximate and longer-term. We searched PubMed, Cochrane Library of Systematic Reviews, and CINAHL electronic databases and conducted hand searches. Inclusion criteria comprised: public involvement, reporting impacts of public involvement, and using a review methodology. This yielded 27 review articles based on studies in the UK, US, Canada and Australia. We employed a three-part analysis process: 1) extracting all subcategories of impact reported into Excel (n = 37); 2) combining and categorising this list into primary and subcategories of impact based on thematic analysis; and 3) cross-checking these categories with the original review. Results Our review of reviews indicates that studies often do not report impacts of PPIE activities and when they do, they report a wide range, with little consistency across studies. We classified four broad types of PPIE impacts on: people (PPIE contributors, researchers, healthcare staff and policymakers), different phases of the research process, services and systems and on PPIE processes themselves. Across these categories, the most commonly documented impacts relate to impacts on PPIE collaborators, including individual empowerment and recovery, on researchers, improving their understanding of and collaboration with people typically excluded from research and on earlier phases of the research process. Studies reported both positive and negative impacts. Methodologically, previous evaluations of PPIE impact predominantly relied on retrospective self-reporting, with little triangulation from other data sources or prospective data collection over time. Conclusion The impacts of PPIE appear to be under- and inconsistently reported. More robust evaluation of PPIE impact, drawing on the broad categories we present, offers opportunities for PPIE contributors, researchers and funders to better understand the effects of these investments.

There is a growing emphasis on involving patients and the public in healthcare research. This is especially true in qualitative healthcare research, w…

As public involvement in the design, conduct and dissemination of health research has become an expected norm and firmly enshrined in policy, interest in measuring its impact has also grown. Despite a drive to assess the impact of public involvement, and a growing body of studies attempting to do just this, a number of questions have been largely ignored.This commentary addresses these omissions: What is the impact of all this focus on measuring impact? How is the language of impact shaping the debate about, and the practice of, public involvement in health research? And how have shifting conceptualisations of public involvement in health research shaped, and been shaped by, the way we think about and measure impact? We argue that the focus on impact risks distorting how public involvement in health research is conceptualised and practised, blinding us to possible negative impacts.We call for a critical research agenda for public involvement that [a] considers public involvement not as an instrumental intervention but a social practice of dialogue and learning between researchers and the public; [b] explores how power relations play out in the context of public involvement in health research, what empowerment means and whose interests are served by it, and [c] asks questions about possible harms as well as benefits of public involvement, and whether the language of impact is helpful or not.

To develop a retinal detachment-specific Patient Reported Outcome Measure, by involving patients in item (question) development.