scholarly journals Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review

10.2196/27141 ◽  
2021 ◽  
Vol 13 (2) ◽  
pp. e27141
Author(s):  
Ursula Ellis ◽  
Vanessa Kitchin ◽  
Mathew Vis-Dunbar
Keyword(s):  
Public Involvement ◽  
Geographic Location ◽  
Patient And Public Involvement ◽  
Advisory Council ◽  
Rapid Review ◽  
Medline Search ◽  
Ovid Medline ◽  
Cochrane Database ◽  
Wide Range ◽  
Scoping Reviews

Background Patient and public involvement (PPI) in health research is an area of growing interest. Several studies have examined the use and impact of PPI in knowledge syntheses (systematic, scoping, and related reviews); however, few studies have focused specifically on the patient or public coauthorship of such reviews. Objective This study seeks to identify published systematic and scoping reviews coauthored by patient or public partners and examine the characteristics of these coauthored reviews, such as which journals publish them, geographic location of research teams, and terms used to describe patient or public partner authors in affiliations, abstracts, or article text. Methods We searched CAB Direct, CINAHL, Cochrane Database of Systematic Reviews (Ovid), Embase (Ovid), MEDLINE (Ovid), and PsycInfo from 2011 to May 2019, with a supplementary search of several PPI-focused databases. We refined the Ovid MEDLINE search by examining frequently used words and phrases in relevant search results and searched Ovid MEDLINE using the modified search strategy in June 2020. Results We screened 13,998 results and found 37 studies that met our inclusion criteria. In line with other PPI research, we found that a wide range of terms were used for patient and public authors in author affiliations. In some cases, partners were easy to identify with titles such as patient, caregiver or consumer representative, patient partner, expert by experience, citizen researcher, or public contributor. In 11% (n=4) of studies, they were identified as members of a panel or advisory council. In 27% (n=10) of articles, it was either impossible or difficult to tell whether an author was a partner solely from the affiliation, and confirmation was found elsewhere in the article. We also investigated where in the reviews the partner coauthors’ roles were described, and when possible, what their specific roles were. Often, there was little or no information about which review tasks the partner coauthors contributed to. Furthermore, only 14% (5/37) of reviews mentioned patient or public involvement as authors in the abstract; involvement was often only indicated in the author affiliation field or in the review text (most often in the methods or contributions section). Conclusions Our findings add to the evidence that searching for coproduced research is difficult because of the diversity of terms used to describe patient and public partners, and the lack of consistent, detailed reporting about PPI. For better discoverability, we recommend ensuring that patient and public authorships are indicated in commonly searched database fields. When patient and public-authored research is easier to find, its impact will be easier to measure.

scholarly journals Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review (Preprint)

2021 ◽  
Author(s):  
Ursula Ellis ◽  
Vanessa Kitchin ◽  
Mathew Vis-Dunbar
Keyword(s):  
Public Involvement ◽  
Geographic Location ◽  
Patient And Public Involvement ◽  
Advisory Council ◽  
Rapid Review ◽  
Medline Search ◽  
Ovid Medline ◽  
Cochrane Database ◽  
Wide Range ◽  
Scoping Reviews

BACKGROUND Patient and public involvement (PPI) in health research is an area of growing interest. Several studies have examined the use and impact of PPI in knowledge syntheses (systematic, scoping, and related reviews); however, few studies have focused specifically on the patient or public coauthorship of such reviews. OBJECTIVE This study seeks to identify published systematic and scoping reviews coauthored by patient or public partners and examine the characteristics of these coauthored reviews, such as which journals publish them, geographic location of research teams, and terms used to describe patient or public partner authors in affiliations, abstracts, or article text. METHODS We searched CAB Direct, CINAHL, Cochrane Database of Systematic Reviews (Ovid), Embase (Ovid), MEDLINE (Ovid), and PsycInfo from 2011 to May 2019, with a supplementary search of several PPI-focused databases. We refined the Ovid MEDLINE search by examining frequently used words and phrases in relevant search results and searched Ovid MEDLINE using the modified search strategy in June 2020. RESULTS We screened 13,998 results and found 37 studies that met our inclusion criteria. In line with other PPI research, we found that a wide range of terms were used for patient and public authors in author affiliations. In some cases, partners were easy to identify with titles such as patient, caregiver or consumer representative, patient partner, expert by experience, citizen researcher, or public contributor. In 11% (n=4) of studies, they were identified as members of a panel or advisory council. In 27% (n=10) of articles, it was either impossible or difficult to tell whether an author was a partner solely from the affiliation, and confirmation was found elsewhere in the article. We also investigated where in the reviews the partner coauthors’ roles were described, and when possible, what their specific roles were. Often, there was little or no information about which review tasks the partner coauthors contributed to. Furthermore, only 14% (5/37) of reviews mentioned patient or public involvement as authors in the abstract; involvement was often only indicated in the author affiliation field or in the review text (most often in the methods or contributions section). CONCLUSIONS Our findings add to the evidence that searching for coproduced research is difficult because of the diversity of terms used to describe patient and public partners, and the lack of consistent, detailed reporting about PPI. For better discoverability, we recommend ensuring that patient and public authorships are indicated in commonly searched database fields. When patient and public-authored research is easier to find, its impact will be easier to measure.

scholarly journals Patient and Public Involvement (PPI) in preclinical research: A scoping review protocol

2021 ◽  
Vol 4 ◽  
pp. 61
Author(s):  
Pádraig Carroll ◽  
Adrian Dervan ◽  
Anthony Maher ◽  
Ciarán McCarthy ◽  
Ian Woods ◽  
...  
Keyword(s):  
Scoping Review ◽  
Public Involvement ◽  
Positive Impact ◽  
Patient And Public Involvement ◽  
The Body ◽  
Current Evidence ◽  
Future Research ◽  
Advisory Panel ◽  
Preclinical Research ◽  
Scoping Reviews

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.

scholarly journals Patient and Public Involvement (PPI) in preclinical research: A scoping review protocol

2021 ◽  
Vol 4 ◽  
pp. 61
Author(s):  
Pádraig Carroll ◽  
Adrian Dervan ◽  
Anthony Maher ◽  
Ciarán McCarthy ◽  
Ian Woods ◽  
...  
Keyword(s):  
Scoping Review ◽  
Public Involvement ◽  
Positive Impact ◽  
Patient And Public Involvement ◽  
The Body ◽  
Current Evidence ◽  
Future Research ◽  
Advisory Panel ◽  
Preclinical Research ◽  
Scoping Reviews

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.

P14.18 Patient and Public Involvement to define patient-centred outcomes from National Cancer Datasets

2021 ◽  
Vol 23 (Supplement_2) ◽  
pp. ii41-ii41
Author(s):  
L Pakzad-Shahabi ◽  
C Cherrington ◽  
N Brassil ◽  
P Even ◽  
D Gardner ◽  
...  
Keyword(s):  
Social Life ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Low Grade ◽  
Patient Centered ◽  
Cancer Data ◽  
Primary Brain Tumour ◽  
Wide Range ◽  
The Impact

Abstract BACKGROUND GlioCova uses linked national cancer data on all 51 000 adult patients with a primary brain tumour in England (2013 - 2018) to understand patterns of care, treatment, and outcomes in patients with glioma (http://wwwf.imperial.ac.uk/blog/gliocova/). A key aim is the use of patient and carer input in defining patient-centered outcomes. We have held multiple Patient & Public Involvement (PPI) sessions with patients and carergivers and data analysts to understand what patient and caregivers want to know about brain tumours. MATERIAL AND METHOD We used a modified Delphi method. The online PPI sessions (Zoom) consisted of two presentations, open discussions, and Q&As. We made the sessions as interactive as possible by using Mentimeter and an interactive online white board (Explain Everything). Pre-reading material was circulated via email. Attendees (6–14 per session) covered a wide range of ages (30–75), diagnoses (GBM, recurrent gliomas, low grade gliomas, ependymoma); patients, caregivers, neuro-oncology staff, data analysts and basic scientists. Work was conducted in line with the INVOLVE PPI guidance. RESULTS We identified four questions that were of interest to patients and had correlates in the data: Patients and caregivers were also interested in the impact of diet, quality of life, social life, and exercise. However, these data cannot be answered using the current national data. CONCLUSION Our PPI work has helped us to identify and prioritise questions to ask of the data. Ongoing PPI work will provide a wider perspective and identify knowledge gaps for future research. Patients and caregivers report feeling empowered, being part of a team, feeling like they had given something back and done something meaningful for the research community and other patients. Patients and caregivers also felt that they had an enriched understanding of the data that is collected. As this process is an iterative process, we will hold more PPI sessions to identify and prioritise topics to analyse.

A framework for action to improve patient and public involvement in health technology assessment

2021 ◽  
Vol 38 (1) ◽  
Author(s):  
Aline Silveira Silva ◽  
Karen Facey ◽  
Stirling Bryan ◽  
Dayani Galato
Keyword(s):  
Health Technology Assessment ◽  
Technology Assessment ◽  
Mixed Methods Research ◽  
Patient Involvement ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
Rapid Review ◽  
Communication Capacity ◽  
Three Phase

Abstract Background Patient and public involvement (PPI) in the Brazilian Health Technology Assessment (HTA) process occurs in response to a legislative mandate for “social participation.” This resulted in some limited patient participation activities, and, therefore, a more systematic approach was needed. The study describes the development of a suggested framework for action to improve PPI in HTA. Methods This work used formal methodology to develop a PPI framework based on three-phase mixed-methods research with desktop review of Brazilian PPI activities in HTA; workshop, survey, and interviews with Brazilian stakeholders; and a rapid review of international practices to enact effective patient involvement. Patient partners reviewed the draft framework. Results According to patient group representatives, their involvement in the Brazilian HTA process is important but could be improved. Different stakeholders perceived barriers, identified values, and made suggestions for improvement, such as expansion of communication, capacity building, and transparency, to support more meaningful patient involvement. The international practices identified opportunities for earlier, more active, and collaborative PPI during all HTA stages, based on values and principles that are relevant for Brazilian patients and the public. These findings were synthesized to design a framework that defines and systematizes actions to support PPI in Brazil, highlighting the importance of evaluating these strategies. Conclusions Since the publication of this framework, some of its suggestions are being implemented in the Brazilian HTA process to improve PPI. We encourage other HTA organizations to consider a systematic and planned approach with regular evaluation when pursuing or strengthening involvement practices.

scholarly journals Combining qualitative research with PPI: reflections on using the person-based approach for developing behavioural interventions

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Ingrid Muller ◽  
Miriam Santer ◽  
Leanne Morrison ◽  
Kate Morton ◽  
Amanda Roberts ◽  
...  
Keyword(s):  
Qualitative Research ◽  
Behaviour Change ◽  
Public Involvement ◽  
Behavioural Change ◽  
Target Population ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Health Interventions ◽  
Qualitative Approaches ◽  
Wide Range

Abstract Background The value and importance of qualitative research and Patient and Public Involvement (PPI) for developing complex health interventions is widely recognised. However, there is often confusion between the two, with researchers relying on just one of these approaches, rather than using the two alongside one another. Methods The Person-Based Approach (PBA) to developing health-related behaviour change interventions adapts and integrates methods from user-centred design and qualitative research. The PBA involves qualitative research at multiple stages of interventions to ensure they are acceptable, feasible, meaningful, and optimally engaging to the people who will use them. The qualitative research is carried out with research participants from a target population, who have no prior or continuing involvement in the wider research process and see the intervention from a fresh perspective. This enables in-depth understanding of the views and experiences of a wide range of target users and the contexts within which they engage with behavioural change. PPI in research is carried out with or by members of the public and is a key part of the research process. PPI contributors are involved at all stages of research design and interpretation. PPI provides input into interventions as members of the research team alongside other stakeholders, such as health professionals and behaviour change experts. Results We advocate using qualitative research alongside PPI at all stages of intervention planning, development, and evaluation. We illustrate this with examples from recent projects developing complex health interventions, highlighting examples where PPI and PBA have pulled in different directions and how we have approached this, how PPI have helped optimise interventions based on PBA feedback, and how we have engaged PPI in community settings. Conclusions PPI provides a valuable alternative to the traditional researcher-led approaches, which can be poorly matched to the needs of target users. Combining PPI with the PBA can help to create optimally engaging interventions by incorporating a greater diversity of feedback than would have been possible to achieve through PPI or qualitative approaches alone.

scholarly journals Patient and public involvement in the development of clinical practice guidelines: a scoping review protocol

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e037327
Author(s):  
Elizabeth Ann Bryant ◽  
Anna Mae Scott ◽  
Rae Thomas
Keyword(s):  
Clinical Practice ◽  
Clinical Practice Guidelines ◽  
Practice Guidelines ◽  
Scoping Review ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
National Standards ◽  
Future Research ◽  
Scoping Reviews ◽  
The Usa

IntroductionClinical practice guidelines (CPGs) are intended to optimise patient care by recommending care pathways based on the best available research evidence and practice experience. Patient and public involvement (PPI) in healthcare is recommended based on the expectation that it will improve the quality and relevance of outcomes. There is no consensus on what constitutes meaningful and effective PPI in CPG. We will conduct a scoping review to identify and synthesise knowledge in four key areas: who have been the patients and public previously involved in CPG development, how were they recruited, at what stage in the CPG process were they involved and how were they involved. This knowledge will inform a general model of PPI in CPG to inform CPGs development.Methods and analysisWe will conduct a scoping review using the Methodology for Scoping Reviews refined by the Joanna Briggs Institute. Searches will be conducted in electronic databases (PubMed, Embase, CINAHL and PsycINFO). National standards for developing CPGs from Australia, UK, Canada and the USA will also be identified. A forward and backward citation search will be conducted on the included studies and national standards. Abstracts and full-text studies will be independently screened by two researchers. Extracted data will include study details, type of clinical guideline and the four key areas, which patients and public were involved, how were they recruited, at what stage were they included and how they were involved. Data will be narratively synthesised.Ethics and disseminationAs a scoping review, this study does not require ethics approval. We intend to disseminate the results through publication in a peer-reviewed journal and conference presentations. Furthermore, we will use the findings from our scoping review to inform future research to fill key evidence gaps identified by this review.

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