Patient and public involvement in the development of clinical practice guidelines: a scoping review protocol
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ABSTRACT:
SUBMITTER: Bryant E
PROVIDER: S-EPMC7537460 | biostudies-literature | 2020 Jan
REPOSITORIES: biostudies-literature
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Project description:BackgroundOver the past decades, there has been a growing international interest in user involvement in healthcare research. However, evidence on the management and impact of patient and public involvement in Nordic healthcare research remains limited.ObjectiveThe aim was to explore and delineate the current state, practice, and impact of patient and public involvement in healthcare research across different areas of healthcare and patient populations in the Nordic countries.MethodsWe conducted a scoping review using nine scientific databases and gray literature from 1992-2023. Sources were categorized as empirical or non-empirical. We used the Guidance for Reporting Involvement of Patients and the Public Short Form 2 checklist for reporting of patient and public involvement in healthcare research and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews.ResultsA total of 56 publications were included, consisting of 39 empirical and 17 non-empirical sources. Gray literature varied among countries and institutions encompassing different types of documents. We found an increase in the number of publications on patient and public involvement in Nordic healthcare research. This was evidenced by the growing number of references and institutional initiatives intended at involving the public, indicating the increasing emphasis on patient and public involvement in Nordic healthcare research. The terminology used to describe patient and public involvement varied over time. However, there has been a gradual narrowing down of terms as the concept of PPI has become more integrated into research practices, particularly with the involvement of funding agencies.ConclusionThe utilization of patient and public involvement in Nordic healthcare research has substantially increased, proliferated, and gained widespread acceptance across diverse healthcare domains. The variety of approaches challenged our scoping review in terms of systematic description and impact. Patient and public involvement was applied in one or more research stages using different methodologies and terms. International agreement on terms and definitions is needed for reliable interpretation of the use of patient and public involvement in Nordic healthcare research.
| S-EPMC10466765 | biostudies-literature
Project description:IntroductionPatient and public involvement (PPI) in research emphasizes the importance of doing research with, rather than for people with lived health/illness experience(s). The purpose of this scoping review is to investigate the breadth and depth of scientific literature on PPI in cancer research and to identify how is PPI applied and reported in cancer research.MethodsWe searched MEDLINE, Embase, CINAHL, and PsycInfo up to March 2022. All titles/abstracts and full-text results were screened by two reviewers. Data were analyzed and are presented in both narrative and tabular format.ResultsWe screened 22,009 titles/abstract, reviewed 375 full-text articles, of which 101 studies were included in this review. 66 papers applied PPI; 35 used co-design methodologies. PPI in cancer research in published research has increased steadily since 2015 and often includes those with a past diagnosis of cancer or relatives/informal caregivers. The most common applied methods were workshops or interviews. PPI was generally used at the level of consultation/advisor and occurred mainly in early stages of research. Costs related to PPI were mentioned in 25 papers and four papers described training provided for PPI.ConclusionsResults of our review demonstrate the nature and extent of PPI expansion in cancer research. Researchers and research organizations entering the fray of PPI should consider planning and reporting elements such as the stage, level, and role type of PPI, as well as methods and strategies put in place to assure diversity. Furthermore, a thorough evaluation of whether all these elements meet the stated PPI purpose will help to grasp its impact on research outcomes.Patient or public contributionTwo patients participated in the stakeholder consultation as part of the scoping review methodology, contributed to the discussion on refining the results, and critically reviewed the manuscript. Both are co-authors of this manuscript.
| S-EPMC10417078 | biostudies-literature
Project description:BackgroundInterest in patient and public involvement in research has grown. Medical, health, and social care research has demonstrated several benefits of patient and public engagement, such as empowering user input and reducing attrition rates in clinical trials. To date, no study has reviewed patient engagement in inflammatory bowel disease (IBD). We aimed to describe the benefits, challenges, and best practices of patient engagement in IBD research.MethodsWe performed a systematic search on MEDLINE, EMBASE, and Cochrane for all clinical IBD research studies in which patients were involved in the research process (1946- 2023). Patient input was considered in: (1) study design, (2) study execution, (3) research dissemination, and/or (4) other domains not specified here. Two authors independently screened and extracted data on type of engaged person(s), format of engagement, author-reported benefits, recommendations, and challenges. For each study, we reported the level of patient engagement and study adherence to standardized reporting guidelines.ResultsAfter screening 9,355 articles, we included 51 for final analysis. IBD patients were most frequently engaged in study design. Patient engagement in IBD research improved recruitment rates and promoted the creation of user-friendly quality-of-life tools. Selection bias and recruitment difficulties were common challenges in the application of patient engagement. Authors recommended continuous patient involvement to address emerging priorities and cognitive interviewing to improve questionnaire clarity.ConclusionsPatient engagement represents an important step in promoting patient-centred care. According to study authors, implementing cognitive interviewing techniques, continuous patient involvement, and standardized reporting guidelines may improve future iterations of engagement in IBD.
| S-EPMC10999768 | biostudies-literature
Project description:BACKGROUND: Clinical practice guidelines are typically written for healthcare providers but there is increasing interest in producing versions for the public, patients and carers. The main objective of this review is to identify and synthesise evidence of the public's attitudes towards clinical practice guidelines and evidence-based recommendations written for providers or the public, together with their awareness of guidelines. METHODS: We included quantitative and qualitative studies of any design reporting on public, patient (and their carers) attitudes and awareness of guidelines written for providers or patients/public. We searched electronic databases including MEDLINE, PSYCHINFO, ERIC, ASSIA and the Cochrane Library from 2000 to 2012. We also searched relevant websites, reviewed citations and contacted experts in the field. At least two authors independently screened, abstracted data and assessed the quality of studies. We conducted a thematic analysis of first and second order themes and performed a separate narrative synthesis of patient and public awareness of guidelines. RESULTS: We reviewed 5415 records and included 26 studies (10 qualitative studies, 13 cross sectional and 3 randomised controlled trials) involving 24 887 individuals. Studies were mostly good to fair quality. The thematic analysis resulted in four overarching themes: Applicability of guidelines; Purpose of guidelines for patient; Purpose of guidelines for health care system and physician; and Properties of guidelines. Overall, participants had mixed attitudes towards guidelines; some participants found them empowering but many saw them as a way of rationing care. Patients were also concerned that the information may not apply to their own health care situations. Awareness of guidelines ranged from 0-79%, with greater awareness in participants surveyed on national guideline websites. CONCLUSION: There are many factors, not only formatting, that may affect the uptake and use of guideline-derived material by the public. Producers need to make clear how the information is relevant to the reader and how it can be used to make healthcare improvements although there were problems with data quality. Awareness of guidelines is generally low and guideline producers cannot assume that the public has a more positive perception of their material than of alternative sources of health information.
| S-EPMC4119247 | biostudies-other
Project description:BackgroundPatient-reported outcome measures (PROMs) measure patients' perspectives on health outcomes and are increasingly used in health care. To capture the patient's perspective, it is essential that patients are involved in PROM development OBJECTIVE: This article reviews in what ways and to what extent patients are involved in PROM development and whether patient involvement has increased over time.Search strategyLiterature was searched in PubMed, EMBASE, MEDLINE and the Cochrane Methodology Register.Inclusion criteriaStudies were included if they described a new PROM development.Data extractionBasic information and information regarding patient involvement in development phases was recorded.Main resultsA total of 189 studies, describing the development of 193 PROMs, were included. Most PROMs were meant for chronic disease patients (n = 59) and measured quality of life (n = 28). In 25.9% of the PROM development studies, no patients were involved. Patients were mostly involved during item development (58.5%), closely followed by testing for comprehensibility (50.8%), while patient involvement in determining which outcome to measure was minimal (10.9%). Some patient involvement took place in the development of most PROMs, but in only 6.7% patients were involved in all aspects of the development. Patient involvement did not increase with time.ConclusionsAlthough patient involvement in PROM development is essential to develop valid patient-centred PROMs, patients are not always involved. When patients are involved, their level of involvement varies considerably. These variations suggest that further attention to building and/or disseminating consensus on requirements for patient involvement in PROM development is necessary.
| S-EPMC5217930 | biostudies-literature
Project description:IntroductionPublic and patient involvement (PPI) in healthcare decisions at the health system-level (macro-level) has become increasingly important during recent years. Existing evidence indicates that PPI increase patient centredness and the democracy of healthcare decisions as well as patients' trust and acceptance of these decisions. However, different methods for PPI exist, and an overview of the outcomes and influential contextual factors has not yet been conducted. Therefore, this scoping review aims to provide an overview of the different methods used for PPI in health system decisionmaking and the reported outcomes and contextual factors for these methods.Methods and analysisThe structure of this protocol is guided by the advanced scoping studies framework of Arksey and O' Malley, developed by Levac, Colquhoun and O'Brien, and the PRISMA-ScR Statement. We will systematically search electronic databases (MEDLINE, Cochrane Library, Scopus, CINAHL, PDQ-Evidence, Web of Science and PsycINFO) for peer-reviewed literature and screen the reference lists of included studies. Additionally, we will search for relevant grey literature and consult experts from the field to identify further information. Studies focusing on PPI in the context of health policy decision-making at the macro-level will be eligible for full-text screening. Studies focusing on decisions at the individual treatment-level (micro-level) and the organisational-level (mesolevel) as well as those dealing with PPI in health research will be excluded. A qualitative analysis will dissect how the included studies define PPI and its desirable outcomes, the achieved outcomes and reported contextual factors.Ethics and disseminationWe will present the results at relevant conferences and in an open-access journal. Additionally, we will share them with the experts involved in the research process and consider ways in which to transfer the findings into practice. As only secondary and previously published information will be used, ethical approval is not necessary.
| S-EPMC8137161 | biostudies-literature
Project description:BackgroundInternationally, there is a drive to involve patients and the public in health research, due to recognition that patient and public involvement (PPI) may increase the impact and relevance of health research. This scoping review describes the extent and nature of PPI in dementia research in the European Union (EU) and summarises: (i) how PPI is carried out; and (ii) the impact of PPI on people living with dementia and the public, researchers, and the research process.MethodsRelevant studies were identified by searches in electronic reference databases and then filtered by two reviewers independently. Eligibility criteria for included studies were: (i) people living with dementia and/or care partners; (ii) PPI activity in dementia research conducted in the European Union (EU); and (iii) published between 2000 and 2018. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2 SF) was used to collate the data. There was no language restriction other than the abstract needed to be available in English.ResultsWe found 19 studies from the UK and one from the Netherlands meeting inclusion criteria. No studies from other EU countries met inclusion criteria. Studies reported various methods of PPI including workshops, drop-in sessions, meetings, consensus conference, reader consultation and participatory approach. The reported aims of PPI included identifying and prioritising research questions (n = 4), research design (n = 5), undertaking and managing research (n = 8), and data analysis and interpretation (n = 3). All PPI related to design and implementation of non-pharmacological studies. One study described two pharmacological studies as case studies incorporating PPI. Seventeen studies reported anecdotal impacts of PPI.ConclusionsFurther development of PPI in dementia research in the EU and in pharmacological dementia research is required. Given the wide range of objectives of PPI in dementia research, PPI methods should be flexible and appropriate for the research context. Researchers should also formally evaluate and report the impacts of PPI for researchers, patients and the general public using good quality research designs to foster development of the field and enable the benefits and challenges of PPI to be better understood.Trial registrationPROSPERO 2017: CRD42017053260 .
| S-EPMC6694462 | biostudies-literature
Project description:BackgroundRoutine utilization of evidence-based clinical practice guidelines (CPGs) is an effective strategy to optimize patient care and reduce practice variation. Healthcare professionals' failure to adhere to CPGs introduces risks to both patients and the sustainability of healthcare systems. The integration of theory to investigate adherence provides greater insight into the often complex reasons for suboptimal behaviors.AimTo determine the coverage of literature surrounding the use of theory in studies of CPG adherence, report the key findings and identify the knowledge gaps.MethodIn April 2021, three bibliographic databases were searched for studies published since January 2010, adopting theory to investigate health professionals' adherence to CPGs. Two reviewers independently screened the articles for eligibility and charted the data. A narrative approach to synthesis was employed.ResultsThe review includes 12 articles. Studies were limited to primarily investigations of physicians, quantitative designs, single disease states and few countries. The use of behavioral theories facilitated pooling of data of barriers and facilitators of adherence. The domains and constructs of a number of the reported theories are captured within the Theoretical Domains Framework (TDF); the most common barriers aligned with the TDF domain of environmental context and resources, fewer studies reported facilitators.ConclusionThere is emerging use of behavioral theories investigating physicians' adherence to CPGs. Although limited in number, these studies present specific insight into common barriers and facilitators, thus providing valuable evidence for refining existing and future implementation strategies. Similar investigations of other health professionals are warranted.
| S-EPMC9938823 | biostudies-literature
Project description:BackgroundIncreasing numbers of family carers are providing informal care in community settings. This creates a number of challenges because family carers are at risk of poor physical and psychological health outcomes, with consequences both for themselves and those for whom they provide care. General Practitioners (GPs), who play a central role in community-based care, are ideally positioned to identify, assess, and signpost carers to supports. However, there is a significant gap in the literature in respect of appropriate guidance and resources to support them in this role.MethodsA scoping review was undertaken to examine clinical guidelines and recommendations for GPs to support them in their role with family carers. This involved a multidisciplinary team, in line with Arksey & O'Malley's framework, and entailed searches of ten peer-reviewed databases and grey literature between September-November 2020.ResultsThe searches yielded a total of 4,651 English language papers, 35 of which met the criteria for inclusion after removing duplicates, screening titles and abstracts, and performing full-text readings. Ten papers focused on resources/guidelines for GPs, twenty were research papers, three were review papers, one was a framework of quality markers for carer support, and one was an editorial. Data synthesis indicated that nine (90%) of the guidelines included some elements relating to the identification, assessment, and/or signposting of carers. Key strategies for identifying carers suggest that a whole practice approach is optimal, incorporating a role for the GP, practice staff, and for the use of appropriate supporting documentation. Important knowledge gaps were highlighted in respect of appropriate clinical assessment and evidence-based signposting pathways.ConclusionOur review addresses a significant gap in the literature by providing an important synthesis of current available evidence on clinical guidelines for GPs in supporting family carers, including strategies for identification, options for assessment and potential referral/signposting routes. However, there is a need for greater transparency of the existing evidence base as well as much more research to evaluate the effectiveness and increase the routine utilisation, of clinical guidelines in primary care.
| S-EPMC10626724 | biostudies-literature
Project description:BackgroundClinical Practice Guidelines (CPGs) should follow an adequate methodology using an evidence-based approach in order to provide reliable recommendations. However, little is known regarding the quality of CPGs for Depression, which precludes its adequate use by stakeholders and mental health professionals. Thus, the aim of this study was to conduct a scoping review to describe the characteristics and quality of CPGs for Depression in adults.MethodsWe searched CPGs for Depression in adults in eighteen databases. We included those that were published in English or Spanish between January 2014 and May 2018 and were based on systematic reviews of the evidence. Two independent authors extracted the characteristics, type and number of recommendations, and quality (using the Appraisal of Guidelines for Research and Evaluation-II [AGREE-II]) of each included CPG.ResultsWe included eleven CPGs, of which 9/11 did not include the participation of patients in the development of the CPG, 4/11 CPGs had a score ≥ 70% in the overall evaluation of AGREE-II, and 3/11 CPGs had a score ≥ 70% in its third domain (rigor of development). In addition, only 5/11 CPGs shared their search strategy, while only 4/11 listed the selected studies they used to reach recommendations, and 7/11 CPGs did not clearly state which methodology they used to translate evidence into a recommendation.ConclusionsMost of evaluated CPGs did not take into account the patient's viewpoints, achieved a low score in the rigor of development domain, and did not clearly state the process used to reach the recommendations. Stakeholders, CPCGs developers, and CPGs users should take this into account when choosing CPGs, and interpreting and putting into practice their issued recommendations.
| S-EPMC6381686 | biostudies-literature