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The Maudsley Biomedical Research Centre (BRC) data linkage service user and carer advisory group: creating and sustaining a successful patient and public involvement group to guide research in a complex area.

ABSTRACT: Background:Patient and Public Involvement (PPI) in health and social care research has been shown to improve the quality and relevance of research. PPI in data linkage research is important in ensuring the legitimacy of future health informatics initiatives, but remains sparse and under-developed. This article describes the setting up and evaluation of a service user and carer advisory group with the aim of providing feedback and advice to researchers developing or making use of database linkages in the field of mental health. Aim:The aim of this study is to describe the creation and formative evaluation of the service user and carer advisory group after a trial period of 12?months. Method:Six individuals were recruited to the group all of whom had personal experience of mental illness. A formative evaluation was conducted after a trial period of 12?months. Results:Evaluation revealed that the group succeeded in promoting dialogue between service users/carers and researchers. Factors that contributed to the success of the group's first year included the opportunity it provided for researchers to involve service users and carers in their projects, the training provided to group members, and the openness of researchers to receiving feedback from the group. Conclusion:The group encourages the incorporation of PPI in data linkage research which helps to ensure the legitimacy of data linkage practices and governance systems whilst also improving the quality and relevance of the research being conducted using linked data.

SUBMITTER: Jewell A

PROVIDER: S-EPMC6558776 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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The Maudsley Biomedical Research Centre (BRC) data linkage service user and carer advisory group: creating and sustaining a successful patient and public involvement group to guide research in a complex area.

Jewell Amelia A Pritchard Megan M Barrett Katherine K Green Patrick P Markham Sarah S McKenzie Sharon S Oliver Roger R Wan Maria M Downs Johnny J Stewart Robert R

Research involvement and engagement 20190611

<h4>Background</h4>Patient and Public Involvement (PPI) in health and social care research has been shown to improve the quality and relevance of research. PPI in data linkage research is important in ensuring the legitimacy of future health informatics initiatives, but remains sparse and under-developed. This article describes the setting up and evaluation of a service user and carer advisory group with the aim of providing feedback and advice to researchers developing or making use of database ...[more]

PMID: 31205751

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Project description:The South London and Maudsley National Health Service (NHS) Foundation Trust Biomedical Research Centre (SLaM BRC) Case Register and its Clinical Record Interactive Search (CRIS) application were developed in 2008, generating a research repository of real-time, anonymised, structured and open-text data derived from the electronic health record system used by SLaM, a large mental healthcare provider in southeast London. In this paper, we update this register's descriptive data, and describe the substantial expansion and extension of the data resource since its original development.Descriptive data were generated from the SLaM BRC Case Register on 31 December 2014. Currently, there are over 250,000 patient records accessed through CRIS.Since 2008, the most significant developments in the SLaM BRC Case Register have been the introduction of natural language processing to extract structured data from open-text fields, linkages to external sources of data, and the addition of a parallel relational database (Structured Query Language) output. Natural language processing applications to date have brought in new and hitherto inaccessible data on cognitive function, education, social care receipt, smoking, diagnostic statements and pharmacotherapy. In addition, through external data linkages, large volumes of supplementary information have been accessed on mortality, hospital attendances and cancer registrations.Coupled with robust data security and governance structures, electronic health records provide potentially transformative information on mental disorders and outcomes in routine clinical care. The SLaM BRC Case Register continues to grow as a database, with approximately 20,000 new cases added each year, in addition to extension of follow-up for existing cases. Data linkages and natural language processing present important opportunities to enhance this type of research resource further, achieving both volume and depth of data. However, research projects still need to be carefully tailored, so that they take into account the nature and quality of the source information.

Project description:BackgroundIn response to a growing movement to involve patients and community stakeholders in health research, we established a parent advisory group in 2016. The group meets regularly to act as advisors and partners for our research program. The purpose of this paper is to describe our experiences establishing the group, and results from parent evaluations.MethodsWe contacted 191 organizations to recruit parents and caregivers of children who wanted to contribute to child health research. Our initial goal was to recruit 8 to 10 parents who would meet regularly (approximately 8 times per year). We conducted an online baseline survey of members after the first two meetings to understand motivations for participating and early experiences. Sixteen months later we conducted another online survey to identify what was going well and areas for improvement.ResultsTwelve parents initially joined the group. The baseline survey (n = 9 complete) identified motivations for participation: wanting a patient/family voice in health research; personal experience accessing health system for child's care; wanting to improve healthcare communications. Concerns about participation included: having sufficient time to attend meetings; whether contributions would be worthwhile; and uncertainty about how the group's input would be used in practice. Parents identified aspects that were working well: opportunity to provide constructive feedback; diversity among parents involved; well-run and organized meetings (agenda and materials sent prior to meeting, skilled facilitation, adequate time for discussion). Items parents identified as not working well were: fluctuating attendance; not knowing others in the group; challenges if attending remotely. At follow-up, there were seven active members. The follow-up survey (n = 5 complete) identified positive feedback related to group dynamics (e.g., collegial, everyone participates) and organization of meetings. Suggestions for improvement included increasing membership, regular attendance, and providing adequate information/context to allow meaningful input.ConclusionsOur experience establishing a parent advisory group and evaluation of the group by parent members have yielded tremendous insights around involving parents and patient proxies in health research. The parent advisory group is a dynamic entity requiring ongoing communication between researchers and members. Effective means of evaluating engagement is essential to ensure it is meaningful. Dedicated time, funding and resources are required for success.

Project description:BackgroundPublic and patient involvement (PPI) through Young Person's Advisory Groups (YPAG) enables children to provide guidance and insight into research activities. PPI is an important characteristic of research, however, to date, most collaboration has been with adults. Also, few YPAGs have been established within the Irish setting. The ROLO (Randomised cOntrol trial of a LOw glycaemic index diet in pregnancy to prevent macrosomia) YPAG was established in July 2020 to identify the research priorities of a group of healthy Irish children who are part of a longitudinal birth cohort. We aimed to describe this process and the key insights to date.MethodsThe ROLO study is a longitudinal birth cohort which has followed-up mother-child dyads at multiple timepoints over 10 years. Mothers actively involved in the study were contacted by the research team to invite their ROLO child and older sibling to participate in the YPAG. Meetings were conducted virtually between July 2020 and February 2022. Researchers encouraged free expression of views amongst the children regarding their research interests. Meetings were recorded, transcribed verbatim and analysed for themes based on the topics most frequently discussed and considered important to participants.ResultsIn all, seven ROLO children and six older siblings attended four ROLO YPAG meetings. Participants were aged between nine to fifteen years old. Four key themes were identified; study children viewed their identity as part of a longitudinal birth cohort as positive and unique; study children considered the fitness test and body measurements as fun aspects related to their participation; all children considered the impact and use of social media as an important form of communication; and all participants expressed interest in attaining new health-related information and learning opportunities. Children suggested topics such as mental health, future viruses, organ transplants, cancer, and the effect of technology and chemicals on the body were important for future research.ConclusionThe ROLO YPAG offers promising scope for continued collaboration. The themes identified from the meetings contribute to a gap in the literature which will guide future research activities, particularly with children, in view of study design, relevance, and by communication strategies. Trial Details: ISRCTN54392969 registered at www.isrctn.com .

Dataset Information

The Maudsley Biomedical Research Centre (BRC) data linkage service user and carer advisory group: creating and sustaining a successful patient and public involvement group to guide research in a complex area.

Publications

The Maudsley Biomedical Research Centre (BRC) data linkage service user and carer advisory group: creating and sustaining a successful patient and public involvement group to guide research in a complex area.

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