Patients’ Participation in Health Research: A Classification of Cooperation Schemes

Vergnas, Olivier Las

doi:10.2196/jopm.8933

Cited by 14 publications

(6 citation statements)

References 16 publications

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“…Multiple frameworks have been proposed to improve the reporting of patients' roles and levels of involvement in research [3][4][5][6][7][8][9]. Notably, in primary research, the GRIPP (Guidance for Reporting Involvement of Patients and Public) checklist was developed in 2011 [2].…”

Section: Introductionmentioning

confidence: 99%

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

Ellis¹,

Kitchin²,

Vis-Dunbar³

2021

J Particip Med

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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.

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Section: Introductionmentioning

confidence: 99%

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

Ellis¹,

Kitchin²,

Vis-Dunbar³

2021

J Particip Med

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“…2015; Happell et al . 2019b; Las Vergnas & French 2017). A much clearer understanding of principles of consumer collaboration and co‐production is essential to promoting genuine collaborations and partnerships that enhance the potential benefits of consumer involvement in research (Roper et al .…”

Section: Discussionmentioning

confidence: 99%

‘It is always worth the extra effort’: Organizational structures and barriers to collaboration with consumers in mental health research: Perspectives of non‐consumer researcher allies

Happell

Gordon

Roper

et al. 2020

Int J Mental Health Nurs

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Consumer collaboration in mental health research has demonstrated significant benefits and reflects both contemporary research practice and policy goals for the expected genuine involvement of consumers in all aspects of mental health service delivery. Notable barriers have been identified as impeding consumer researcher positions that must be better understood and ultimately addressed. The aim of this research was to better understand these barriers from the perspectives of non‐consumer researchers who have worked collegially with consumer researchers. We developed a self‐report survey, Consumers as Researchers in Mental Health (CaRiMH) and administered it to non‐consumer mental health researchers in Australia and New Zealand. Findings suggest a lack of organizational structures to support both consumer research and capacity building of consumer researchers. Most consumer researchers were employed casually with no set hours. Although consumer researchers were typically remunerated, inadequate funding and inflexibility of employment were highlighted as major barriers. There was variation in opinion about token involvement of consumer researchers and some uncertainty about whether these roles, where they existed, were actively resisted. Despite the acknowledged barriers, participants were positive about collaborations with consumer researchers. Overall, findings suggest consumer research is unlikely to proliferate without greater attention to organizational structures. A systematic and strategic approach to advancing mental health consumer research is required, including extra‐organizational policy factors.

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“…We used both data-driven and theory-driven coding, identified themes using surface meanings of data, and used only participants’ experience and perspective for interpretation. To be faithful to the firsthand account of motivations and experience of individuals with brain injury, we present the significance of the patterns and their broader meanings and implications, mostly assuming a unidirectional relationship between meaning and language [ 50 ].…”

Section: Methodsmentioning

confidence: 99%

Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study

Masterson¹,

Brady²,

Miller³

2019

J Participat Med

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Background The effects of brain injury, structural damage, or the physiological disruption of brain function last far beyond initial clinical treatment. Self-tracking and management technologies have the potential to help individuals experiencing brain injury in their personal recovery—helping them to function at their best despite ongoing symptoms of illness. However, current self-tracking technologies may be unsuited for measuring the interconnected, nonlinear ways in which brain injury manifests. Objective This study aimed to investigate (1) the current informational practices and sensemaking processes used by postacute brain injury patients during personal recovery and (2) the potential role of quality-of-life instruments in improving patient awareness of brain injury recovery, advocacy, and involvement in care used outside the clinical context. Our objective was to explore the means of improving awareness through reflection that leads to compensatory strategies by anticipating or recognizing the occurrence of a problem caused by impairment. Methods We conducted a qualitative study and used essentialist or realist thematic analysis to analyze the data collected through semistructured interviews and questionnaires, 2 weeks of structured data collection using brain injury–specific health-related quality of life instrument, quality of life after brain injury (QoLIBRI), and final interviews. Results Informational practices of people with brain injury involve data collection, data synthesis, and obtaining and applying the insights to their lifestyles. Participants collected data through structured tools such as spreadsheets and wearable devices but switched to unstructured tools such as journals and blogs as changes in overall progress became more qualitative in nature. Although data collection helped participants summarize their progress better, the lack of conceptual understanding made it challenging to know what to monitor or communicate with clinicians. QoLIBRI served as an education tool in this scenario but was inadequate in facilitating reflection and sensemaking. Conclusions Individuals with postacute brain injury found the lack of conceptual understanding of recovery and tools for making sense of their health data as major impediments for tracking and being aware of their personal recovery. There is an urgent need for a better framework for recovery and a process model for choosing patient-generated health data tools that focus on the holistic nature of recovery and improve the understanding of brain injury for all stakeholders involved throughout recovery.

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Patients’ Participation in Health Research: A Classification of Cooperation Schemes

Cited by 14 publications

References 16 publications

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

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

‘It is always worth the extra effort’: Organizational structures and barriers to collaboration with consumers in mental health research: Perspectives of non‐consumer researcher allies

Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study

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