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INTRODUCTION: Patient and public involvement (PPI) in research is an embedded practice in clinical research, however, its role in preclinical or laboratory-based research is less well established and presents specific challenges. This study aimed to explore the perspectives of two key stakeholder groups, preclinical researchers and clinicians on PPI in preclinical research, using spinal cord research as a case study. METHODS: Semi-structured interviews were conducted online with 11 clinicians and 11 preclinical researchers all working in the area of spinal cord injury (SCI). Interviews were transcribed verbatim and analysed thematically. FINDINGS: Nine themes were developed through analysis. Participants' perspectives included that people living with SCI had a right to be involved, that PPI can improve the relevance of preclinical research, and that PPI can positively impact the experiences of researchers. They identified the distance between lab-based research and the daily experiences of living with SCI to be a barrier and proactive management of accessibility and the motivated and networked SCI community as key facilitators. To develop strong partnerships, participants suggested setting clear expectations, ensuring good communication, and demonstrating respect for the time of PPI contributors involved in the research. CONCLUSIONS: While traditionally PPI has been more commonly associated with clinical research, participants identified several potential benefits of PPI in preclinical spinal cord research that have applicability to preclinical researchers more broadly. Preclinical spinal researchers should explore how to include PPI in their work. PATIENT OR PUBLIC CONTRIBUTION: This study was conducted as part of a broader project aiming to develop an evidence base for preclinical PPI that draws on a 5-year preclinical research programme focused on the development of advanced biomaterials for spinal cord repair as a case study. A PPI Advisory Panel comprising seriously injured rugby players, clinicians, preclinical researchers, and PPI facilitators collaborated as co-authors on the conceptualisation, design of the interview protocol, data analysis and writing of this manuscript.

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INTRODUCTION: There is currently limited guidance for researchers on Patient and Public Involvement (PPI) for preclinical spinal cord research, leading to uncertainty about design and implementation. This study aimed to develop evidence-informed principles to support preclinical spinal cord researchers to incorporate PPI into their research. METHODS: This study used a modified Delphi method with the aim of establishing consensus on a set of principles for PPI in spinal cord research. Thirty-eight stakeholders including researchers, clinicians and people living with spinal cord injury took part in the expert panel. Participants were asked to rate their agreement with a series of statements relating to PPI in preclinical spinal cord research over two rounds. As part of Round 2, they were also asked to rate statements as essential or desirable. RESULTS: Thirty-eight statements were included in Round 1, after which five statements were amended and two additional statements were added. After Round 2, consensus (> 75% agreement) was reached for a total of 27 principles, with 13 rated as essential and 14 rated as desirable. The principles with highest agreement related to diversity in representation among PPI contributors, clarity of the purpose of PPI and effective communication. CONCLUSION: This research developed a previously unavailable set of evidence-informed principles to inform PPI in preclinical spinal cord research. These principles provide guidance for researchers seeking to conduct PPI in preclinical spinal cord research and may also inform PPI in other preclinical disciplines. PATIENT AND PUBLIC INVOLVEMENT STATEMENT: This study was conducted as part of a project aiming to develop PPI in preclinical spinal cord injury research associated with an ongoing research collaboration funded by the Irish Rugby Football Union Charitable Trust (IRFU CT) and the Science Foundation Ireland Centre for Advanced Materials and BioEngineering Research (SFI AMBER), with research conducted by the Tissue Engineering Research Group (TERG) at the RCSI University of Medicine and Health Sciences. The project aims to develop an advanced biomaterials platform for spinal cord repair and includes a PPI Advisory Panel comprising researchers, clinicians and seriously injured rugby players to oversee the work of the project. PPI is included in this study through the involvement of members of the PPI Advisory Panel in the conceptualisation of this research, review of findings, identification of key points for discussion and preparation of the study manuscript as co-authors.

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BACKGROUND: Patient and public involvement in research (PPI) has many benefits including increasing relevance and impact. While using PPI in clinical research is now an established practice, the involvement of patients and the public in pre-clinical research, which takes place in a laboratory setting, has been less frequently described and presents specific challenges. This study aimed to explore the perspectives of seriously injured rugby players' who live with a spinal cord injury on PPI in pre-clinical research. METHODS: Semi-structured interviews were conducted via telephone with 11 seriously injured rugby players living with spinal cord injury on the island of Ireland. A purposive sampling approach was used to identify participants. Selected individuals were invited to take part via gatekeeper in a charitable organisation that supports seriously injured rugby players. Interviews were transcribed verbatim and analysed thematically. FINDINGS: Six themes were identified during analysis: 'appreciating potential benefits of PPI despite limited knowledge', 'the informed perspectives of people living with spinal cord injury can improve pre-clinical research relevance', 'making pre-clinical research more accessible reduces the potential for misunderstandings to occur', 'barriers to involvement include disinterest, accessibility issues, and fear of losing hope if results are negative', 'personal contact and dialogue helps people feel valued in pre-clinical research, and 'PPI can facilitate effective dissemination of pre-clinical research as desired by people living with spinal cord injury.' CONCLUSION: People affected by spinal cord injury in this study desire further involvement in pre-clinical spinal cord injury research through dialogue and contact with researchers. Sharing experiences of spinal cord injury can form the basis of PPI for pre-clinical spinal cord injury research.

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BACKGROUND: Patient and Public Involvement (PPI) in research aims to improve the quality, relevance and appropriateness of research. PPI has an established role in clinical research where there is evidence of benefit, and where policymakers and funders place continued emphasis on its inclusion. However, for preclinical research, PPI has not yet achieved the same level of integration. As more researchers, including our team, aim to include PPI in preclinical research, the development of an evidence-based approach is important. Therefore, this scoping review aimed to identify and map studies where PPI has been used in preclinical research and develop principles that can be applied in other projects. METHODS: A scoping review was conducted to search the literature in Medline (PubMed), EMBASE, CINAHL, PsycInfo and Web of Science Core Collection to identify applied examples of preclinical PPI. Two independent reviewers conducted study selection and data extraction separately. Data were extracted relating to PPI in terms of (i) rationale and aims, (ii) approach used, (iii) benefits and challenges, (iv) impact and evaluation and (v) learning opportunities for preclinical PPI. Findings were reviewed collaboratively by PPI contributors and the research team to identify principles that could be applied to other projects. RESULTS: Nine studies were included in the final review with the majority of included studies reporting PPI to improve the relevance of their research, using approaches such as PPI advisory panels and workshops. Researchers report several benefits and challenges, although evidence of formal evaluation is limited. CONCLUSION: Although currently there are few examples of preclinical research studies reporting empirical PPI activity, their findings may support those aiming to use PPI in preclinical research. Through collaborative analysis of the scoping review findings, several principles were developed that may be useful for other preclinical researchers. PATIENT OR PUBLIC CONTRIBUTION: This study was conducted as part of a broader project aiming to develop an evidence base for preclinical PPI that draws on a 5-year preclinical research programme focused on the development of advanced biomaterials for spinal cord repair as a case study. A PPI Advisory Panel comprising seriously injured rugby players, clinicians, preclinical researchers and PPI facilitators collaborated as co-authors on the conceptualization, execution and writing of this review, including refining the findings into the set of principles reported here.

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Introduction: Patient and public involvement (PPI) aims to improve the quality, relevance, and appropriateness of research and ensure that it meets the needs and expectations of those affected by particular conditions to the greatest possible degree. The evidence base for the positive impact of PPI on clinical research continues to grow, but the role of PPI in preclinical research (an umbrella term encompassing 'basic', 'fundamental', 'translational' or 'lab-based' research) remains limited. As funding bodies and policymakers continue to increase emphasis on the relevance of PPI to preclinical research, it is timely to map the PPI literature to support preclinical researchers involving the public, patients, or other service users in their research. Therefore, the aim of this scoping review is to explore the literature on patient and public involvement in preclinical research from any discipline. Methods: This scoping review will search the literature in Medline (PubMed), Embase, CINAHL, PsycINFO, Web of Science Core Collection, Scopus, and OpenGrey.net to explore the application of PPI in preclinical research. This review will follow the Joanna Briggs Institute (JBI) guidelines for scoping reviews. It will be reported according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Two reviewers will independently review articles for inclusion in the final review. Data extraction will be guided by the research questions. The PPI advisory panel will then collaboratively identify themes in the extracted data. Discussion: This scoping review will provide a map of current evidence surrounding preclinical PPI, and identify the body of literature on this topic, which has not been comprehensively reviewed to date. Findings will inform ongoing work of the research team, support the work of other preclinical researchers aiming to include PPI in their own research, and identify knowledge and practice gaps. Areas for future research will be identified.

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Challenges faced by health systems have become increasingly complex, and expanding the range of methodological options available via interdisciplinary collaboration is important to enable researchers to address them. As complexity increases, it can be more difficult to ensure solutions remain patient-centered. Human-centered design is an approach that focuses on engaging with and understanding the needs of all services users while retaining a systems perspective. Therefore, design professionals skilled in these approaches are increasingly collaborating within health systems in pharmacy and health research teams. This methodological paper considers the potential contribution of human-centered design approaches to optimising development, implementation, and sustainability of patient-centered interventions in pharmacy and health services research. It provides an overview of human-centered design principles and their application, and outlines the emerging roles of design professionals in pharmacy and health services research. It focuses on three key human-centered design methods that can most readily be used by pharmacy and health services researchers. Journey mapping, prototyping, and user testing are discussed in detail. Journey mapping enables holistic visualisation of patient experience from practical and emotional perspectives. It may be used to visualize current practice or model potential future services, and can be informed by quantitative and qualitative data derived from both primary and secondary research. Prototyping facilitates exploration of interventions such as new services quickly and at low-cost. Health services researchers can utilize prototypes for services, processes, experiences, physical objects, environments, spaces, or digital tools for example. Formative evaluation and user testing supports rapid iteration of prototypes to ensure that they meet patient and healthcare professional needs. Finally, challenges with interdisciplinary collaboration and strategies to maximize the potential of using human-centered design approaches in pharmacy and health services research to address complex challenges, enhance practice and deliver benefits for service users, patients, and health systems are discussed.

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This paper details Von Lüttichau's relationship with Carl Jung and Bill Wilson, co-founder of Alcoholics Anonymous (AA), and her role as intermediary in the relationship between the two men. Her contribution within this mediator role has not been previously recognized but is an important factor in explaining how Jung became introduced to the AA 12-step format and validated the effectiveness of group work. After the Second World War, Von Lüttichau travelled between America and Switzerland and introduced the writings and ideas of Wilson and Jung to each other and acted as an intermediary between both titans. Jung gave Von Lüttichau extraordinarily detailed instructions on how the 12-step programme of AA could be applied to 'general neurotics'. Von Lüttichau's private papers provide a bridge between Jung and Wilson's correspondence and help to piece together gaps in both Jungian and AA history.

Cet article précise la relation entre Carl Jung et Bill Wilson, le co-fondateur d'Alcooliques anonymes (AA), et son rôle en tant qu'intermédiaire dans la relation entre les deux hommes. Sa contribution dans un rôle de médiatrice n'a pas été reconnue jusqu'ici. C'est pourtant un facteur important pour expliquer comment Jung a été introduit au programme en 12 étapes d'AA, et a validé l'efficacité du travail de groupe. Après la deuxième guerre mondiale, Von Lüttichau a voyagé entre l'Amérique et la Suisse et a permis à chacun des deux hommes de découvrir les idées et les écrits de l'autre, agissant en tant qu'intermédiaire entre les deux Titans. Jung a donné à Von Lüttichau des instructions extraordinairement détaillées sur comment le programme en 12 étapes d'AA pouvait être appliqué aux « simples névrosés ¼. Les écrits personnels de Von Lüttichau offrent une passerelle pour éclairer la correspondance entre Jung et Wilson, et aident à remplir les blancs dans l'histoire commune entre la psychologie analytique et AA.

El presente artículo detalla la relación de Von Lüttichau con Carl Jung and Bill Wilson, co-fundador de Alcohólicos Anónimos (AA), y su rol como intermediaria en la relación entre los dos hombres. Su contribución como mediadora no ha sido previamente reconocido pero es un factor importante para explicar cómo Jung fue introducido al formato de los 12-pasos de AA y validó la efectividad del trabajo grupal. Luego de la Segunda Guerra Mundial, Von Lüttichau viajó entre América y Suiza, e introdujo los escritos e ideas de Wilson y Jung, mutuamente, y actuó como intermediaria entre ambos Titanes. Jung le dio a Von Lüttichau instrucciones extraordinariamente detalladas sobre cómo el programa de 12-pasos de AA podría ser aplicado al 'neurótico general'. Los escritos privados de Von Lüttichau ofrecen un puente entre la correspondencia de Jung y Wilson, y ayudó a llenar vacíos en ambas historias, la Junguiana, y la de AA.

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