Regional Working in the East of England: Using the UK National Standards for Public Involvement

Plain English summary: Involving patients and members of the public to help shape and carry out research is recommended in health research in the United Kingdom (UK). There are a number of regional networks of Patient and Public Involvement (PPI) groups, which support the collaboration between researchers, patients and public members. We are a group of researchers, patients and public members who came together via a PPI regional network in the East of England to collaborate on a research study about the extent of feedback from researchers to PPI contributors.The aim of this paper is to use the recently developed UK National Standards for Public Involvement to structure our thinking about what worked well and what did not, within our recently completed study. We believe this paper is one of the first to use the National Standards to structure a retrospective reflection on PPI within a study.Our findings showed that there are benefits of regional working, including easier access to public members and bringing together researchers, public members and those who run PPI groups for research collaboration. The main challenges included involvement of people before studies are funded and working across organisations with different payment processes.The National Standards for Public Involvement has provided a useful framework to consider how best to involve patients and members of the public in research and could be a helpful structure to reflect on successes and challenges in individual projects and also regional, national or international comparisons of PPI in research. Abstract: Background Regional networks of Patient and Public Involvement (PPI) organisations, including academic institutions, health and social care services, charities, patient and public groups and individuals, can play an important part in carrying out health research. In the UK, recommendations by the National Institute of Health Research (NIHR) encourage the use of regional, collaborative networks with shared resources and training. Methods The newly developed UK National Standards for Public Involvement were used as a framework for a retrospective reflection of PPI within a recently completed research study which focused on feedback from researchers to PPI contributors. PPI contributors, those running PPI groups (PPI leads) and researchers involved in the study have contributed to this reflection by completing evaluation forms throughout the research alongside notes of meetings and co-authors' final reflections. Results Results revealed a number of successes where the regional network was particularly useful in bringing together PPI contributors, those who lead PPI groups and researchers. The regional network helped researchers to get in touch with patients and members of the public. Challenges included involving people before funding and bureaucratic and financial barriers when working across different organisations in the region. The importance of working together in flexible, informal ways was key and on-going support for the PPI contributors was vital for continued involvement, including emotional support not just monetary. The first four National Standards of inclusive opportunities, working together, support and learning and communications were particularly useful as means of structuring our reflections. Conclusions To our knowledge, this is one of the first research studies to use the UK National Standards for Public Involvement as a framework to identify what worked well and the challenges of PPI processes. It is suggested that as more reflective papers are published and the National Standards are more widely used in the UK, many lessons can be learnt and shared on how to improve our Patient and Public Involvement within research studies. Evaluations or reflections such as these can further enhance our understanding of PPI with implications for regional, national and international comparisons.Peer reviewedFinal Published versio

Undiagnosed dementia in primary care: A record linkage study

BackgroundThe number of people living with dementia is greater than the number with a diagnosis of dementia recorded in primary care. This suggests that a significant number are living with dementia that is undiagnosed. Little is known about this group and there is little quantitative evidence regarding the consequences of diagnosis for people with dementia.ObjectivesThe aims of this study were to (1) describe the population meeting the criteria for dementia but without diagnosis, (2) identify predictors of being diagnosed and (3) estimate the effect of diagnosis on mortality, move to residential care, social participation and well-being.DesignA record linkage study of a subsample of participants (n = 598) from the Cognitive Function and Ageing Study II (CFAS II) (n = 7796), an existing cohort study of the population of England aged ≥ 65 years, with standardised validated assessment of dementia and consent to access medical records.Data sourcesData on dementia diagnoses from each participant’s primary care record and covariate and outcome data from CFAS II.SettingA population-representative cohort of people aged ≥ 65 years from three regions of England between 2008 and 2011.ParticipantsA total of 598 CFAS II participants, which included all those with dementia who consented to medical record linkage (n = 449) and a stratified sample without dementia (n = 149).Main outcome measuresThe main outcome was presence of a diagnosis of dementia in each participant’s primary care record at the time of their CFAS II assessment(s). Other outcomes were date of death, cognitive performance scores, move to residential care, hospital stays and social participation.ResultsAmong people with dementia, the proportion with a diagnosis in primary care was 34% in 2008–11 and 44% in 2011–13. In both periods, a further 21% had a record of a concern or a referral but no diagnosis. The likelihood of having a recorded diagnosis increased with severity of impairment in memory and orientation, but not with other cognitive impairment. In multivariable analysis, those aged ≥ 90 years and those age

Guidance for Researchers: Feedback : Patient and Public Involvement (PPI): Feedback from Researchers to PPI Contributors

© 2018 The Author(s). This an open access work distributed under the terms of the Creative Commons Attribution Licence (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited

Supporting Shared Decision-Making for Older People with Multiple Health and Social Care Needs: a Protocol for a Realist Synthesis to Inform Integrated Care Models

Introduction: Including the patient or user perspective is a central organising principle of integrated care. Moreover, there is increasing recognition of the importance of strengthening relationships among patients, carers and practitioners, particularly for individuals receiving substantial health and care support, such as those with long-term or multiple conditions. The overall aims of this synthesis are to provide a context-relevant understanding of how models to facilitate shared decision-making (SDM) might work for older people with multiple health and care needs, and how they might be applied to integrated care models. Methods and analysis: The synthesis draws on the principles of realist inquiry, to explain how, in what contexts and for whom, interventions that aim to strengthen SDM among older patients, carers and practitioners are effective. We will use an iterative, stakeholder-driven, three-phase approach. Phase 1: development of programme theory/theories that will be tested through a first scoping of the literature and consultation with key stakeholder groups; phase 2: systematic searches of the evidence to test and develop the theories identified in phase 1; phase 3: validation of programme theory/theories with a purposive sample of participants from phase 1. The synthesis will draw on prevailing theories such as candidacy, self-efficacy, personalisation and coproduction. Ethics and dissemination: Ethics approval for the stakeholder interviews was obtained from the University of Hertfordshire ECDA (Ethics Committee with Delegated Authority), reference number HSK/SF/UH/02387. The propositions arising from this review will be used to develop recommendations about how to tailor SDM interventions to older people with complex health and social care needs in an integrated care setting

Correction to: Abstracts from the NIHR INVOLVE Conference 2017.

[This corrects the article DOI: 10.1186/s40900-017-0075-x.]

Supporting Shared Decision-Making for Older People with Multiple Health and Social Care Needs: a Protocol for a Realist Synthesis to Inform Integrated Care Models

Introduction: Including the patient or user perspective is a central organising principle of integrated care. Moreover, there is increasing recognition of the importance of strengthening relationships among patients, carers and practitioners, particularly for individuals receiving substantial health and care support, such as those with long-term or multiple conditions. The overall aims of this synthesis are to provide a context-relevant understanding of how models to facilitate shared decision-making (SDM) might work for older people with multiple health and care needs, and how they might be applied to integrated care models. Methods and analysis: The synthesis draws on the principles of realist inquiry, to explain how, in what contexts and for whom, interventions that aim to strengthen SDM among older patients, carers and practitioners are effective. We will use an iterative, stakeholder-driven, three-phase approach. Phase 1: development of programme theory/theories that will be tested through a first scoping of the literature and consultation with key stakeholder groups; phase 2: systematic searches of the evidence to test and develop the theories identified in phase 1; phase 3: validation of programme theory/theories with a purposive sample of participants from phase 1. The synthesis will draw on prevailing theories such as candidacy, self-efficacy, personalisation and coproduction. Ethics and dissemination: Ethics approval for the stakeholder interviews was obtained from the University of Hertfordshire ECDA (Ethics Committee with Delegated Authority), reference number HSK/SF/UH/02387. The propositions arising from this review will be used to develop recommendations about how to tailor SDM interventions to older people with complex health and social care needs in an integrated care setting

Abstracts from the NIHR INVOLVE Conference 2017

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