Impact Of Public Involvement Research Articles

Better conversations with Parkinson’s: co-production of a novel speech and language therapy intervention with people living with Parkinson’s

Effective engagement with stakeholders is key in health-care research and intervention development. There is currently a lack of evidence relating to the involvement of co-producers with Parkinson’s-related communication difficulties. This article provides a critical reflection on co-producing a novel speech and language therapy intervention (Better Conversations with Parkinson’s) with people living with Parkinson’s who have an interest in, or lived experience of, communication difficulties. Evaluation is based on qualitative comments and survey responses from patient and public involvement group members, documentation and outputs from the patient and public involvement group, and reflection using the Public Involvement Impact Assessment Framework. The co-production group, research team and organisation highly valued the expertise and collaboration as equal partners gained through co-production. Key enablers included skilled facilitation and adequate time and funding. Consideration should be given to the format of participation (online or face-to-face), recruitment strategies and the role of patient and public involvement, in order to improve access to underserved groups and strengthen the voice of public and patient involvement members. Co-production with people living with Parkinson’s and communication difficulties allowed the creation of a more credible, relevant intervention which responds to the needs of key stakeholders, and it was a positive experience with personal benefits for those involved. We propose offering a flexible choice of co-production methods to accommodate the differing experiences of patient and public involvement members with Parkinson’s and communication difficulties.

Improving transparency of longitudinal health research: glossary, infographic and accessible study summaries

BackgroundLongitudinal studies collect information repeatedly about the same group of people, allowing for analyses of changes over time. They are vital in mental health research, as elsewhere. As longitudinal studies rely on the participation of patients and the public, their methods, purposes and results must be transparent and accessible. IntroductionMany UK longitudinal research studies with mental health data are indexed via the Catalogue of Mental Health Measures (‘Catalogue’), and organisations including DATAMIND provide broader information about mental health data research. However, the information on such platforms is primarily researcher-oriented, creating a barrier to its transparency and accessibility. Barriers can be alleviated by providing clear definitions of specialist terms, a transparent overview of longitudinal mental health research, and ‘bite-sized’ summaries of the Catalogue studies. MethodsThis project was co-designed and co-created by patient/public representatives from the DATAMIND Super Research Advisory Group (SRAG) and researchers. UK Health Data Research Alliance transparency standards were followed across the delivery of three outputs. (1) To provide clear definitions of specialist terms, SRAG members and researchers collected terms commonly used longitudinal research and researchers clarified definitions. Definitions were revised by SRAG members and terms were added to an existing data science glossary. (2) To create a transparent overview of longitudinal mental health research, the patient/public involvement (PPI) lead and SRAG co-applicant proposed content for an infographic about longitudinal research. The design was discussed with a graphic designer who created the infographic, and involved the PPI lead for the UK Longitudinal Linkage Collaboration. This was then revised iteratively for clarity, accessibility and diversity. (3) To generate accessible summaries of the Catalogue studies, psychology undergraduate students drafted summaries for an initial six studies, which were reviewed via a workshop led by the SRAG. Following revisions to the content and style, summaries were created for all 55+ studies on the Catalogue. Unfamiliar terms encountered during the process were also added to the glossary. ResultsThree new resources were created. (1) We developed a glossary of terms commonly used in longitudinal studies and research, to be incorporated into the DATAMIND glossary (https://datamind.org.uk/glossary/). (2) We created an infographic ‘storyboard’ to show how researchers, patients and the public can work together in the creation and curation of longitudinal research. The infographic illustrates the intertwined relationships between patients and the public, providing a transparent representation of challenges such as sharing studies, data access, patient benefit, and the importance and impact of public involvement. It illustrates many ways to find out about longitudinal research. (3) Accessible and transparent short summaries were created for all longitudinal studies in the Catalogue (https://www.cataloguementalhealth.ac.uk/). These provide clear and concise overviews, enough to capture the essence of each study and inform researchers and the public quickly and easily. ConclusionsCo-production supports the transparency of longitudinal research, and ensures resources designed and produced for the public have public input. Two generic information resources and one specific resource are presented. AcknowledgementsProject funded by HDR UK (HDRUK2023.0465). DATAMIND is funded by the Medical Research Council (MR/W014386/1). All research at the Department of Psychiatry in the University of Cambridge is supported by the NIHR Cambridge Biomedical Research Centre (NIHR203312) and the NIHR Applied Research Collaboration East of England; the views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Using the UK standards for public involvement to evaluate the public involvement sections of annual reports from NIHR managed research centres

BackgroundWithin the United Kingdom (UK), the National Institute for Health and Care Research is the largest funder of health and social care research, and additionally funds research centres that support the development and delivery of research. Each year, award-holders of these research centres are required to write a report about their activities, including a summary of Patient and Public Involvement and Engagement (PPIE) activities. This study aimed to evaluate the PPIE sections of annual reports to identify best practice and challenges; this could inform future delivery of PPIE activities.MethodsA framework documentary analysis informed by the six UK Standards for Public Involvement (‘Inclusive opportunities’, ‘Working together’, ‘Support and learning’, ‘Communications’, ‘Impact’ and ‘Governance’) was conducted on 112 reports. A quality improvement framework (‘Insights’) was used to evaluate quality as one of: ‘Welcoming’, ‘Listening’, ‘Learning’ and ‘Leading’. Recommendations from this review were co-developed with stakeholders and public contributors.ResultsReports documented varying levels of quality in PPIE activities which spanned across all six UK Standards. Award-holders either intended to, or were actively working towards, increasing access and inclusivity of public involvement opportunities. Methods of working with public contributors were varied, including virtual and in-person meetings. Most award-holders offered PPIE support and learning opportunities for both public contributors and staff. Some award-holders invited public contributors to co-produce communication plans relating to study materials and research findings. The impact of public involvement was described in terms of benefits to public contributors themselves, and on an organisation and project level. Many award-holders reported inviting public contributors to share decision-making within and about governance structures.ConclusionsThis evaluation identified that most annual reports contained evidence of good quality PPIE practice with learning from public contributors. Using the UK Standards and Insights framework enabled exploration of the breadth and quality of PPIE activities. Recommendations include the need for a platform for centres to access and share PPIE best practice and for centres to collaborate with local and national partners to build relationships with the public through inclusive community engagement.

Does patient and public involvement impact public health decision-making? A 10 year retrospective analysis of public consultation in Brazil

Background The aim of this work is to characterize the processes associated with patient and public involvement (PPI) in the form of public consultations (PC) during the first 10 years of operation of the National Committee for Health Technology Incorporation in the Unified Health System (Conitec) of Brazil, and to identify factors associated with changes in Conitec’s recommendations following these PC.Methods This cross-sectional study analysed all processes related to the adoption of technologies that took place in Brazil between 2012 and 2021 based on technical reports and self-reported information collected from PC participants. A multiple logistic regression model identified factors associated with changes in Conitec’s recommendations following PC.Results A total of 479 technical reports were published, of which 83% (n = 400) were submitted to PC. Demands were made mainly by applicants from the government (n = 262; 55%), regarding the adoption of medicines (n = 366; 76%), in which context neoplasms and infectious diseases were the most frequent indications (n = 66; 14% for each). A total of 264 (55%) processes resulted in a final recommendation in favour of introducing the technology. Over the period of 10 years, 196 483 contributions were received in response to PC. The largest volume of contributions was made by patients and their families or representatives (n = 99 082; 50%), females (122 895; 67%), white individuals (129 165; 71%) and individuals between the ages of 25 and 59 years (145 364; 80%). Alteration of the preliminary recommendation occurred in 13% (n = 53) of the PC, with a higher proportion of recommendations being altered from 2017 onwards. Increased participation by patients had a significant impact on the alteration of the preliminary recommendation (odds ratio 3.87, 95% CI 1.33–13.35, p = 0.02).ConclusionsIncreased engagement of patients and their families and caregivers in PC was associated with changing the preliminary recommendation of Conitec about the adoption of technologies into the public health system in Brazil.

Keeping track of and recognizing the value of Public Involvement work in dementia research

The Public Involvement (PI) of people with dementia is slowly but progressively moving from a "nice to have" to a "must have" element of good-quality dementia research. Research funders and ethics committees increasingly ask for evidence of the planning of such involvement. The actual conduct and outcome of PI are, however, unfortunately typically under or inadequately reported. In this article, we provide an overview of what PI is and why it is important to dementia research and Alzheimer Europe's approach to PI. We draw on our recent experience of compiling a set of examples of PI in different European projects in publicly available sources. This highlighted the difficulty of finding information about PI activities and the almost total lack of details of such activities in formal reports, official records, and/or public project websites. In this article, we emphasize gaps and call for more stringent conditions for the inclusion and reporting of PI work in the context of the approval and funding of dementia research projects. We call for the establishment of obligatory reporting on the nature, specific challenges, and impact of PI in dementia research in formal reports (e.g., to funders), in public project websites, and in peer-reviewed articles. Such reporting should cover several key factors such as who was involved, how they were involved, and what impact PI had on the research process.

Exploring the implementation of public involvement in local alcohol availability policy: the case of alcohol licensing decision-making in England.

In 2003, the UK government passed the Licensing Act for England and Wales. The Act provides a framework for regulating alcohol sale, including four licensing objectives with local governments having devolved responsibility for granting licences to sell alcohol. Members of the public can make representations of oppositions to licence applications. Applying the theories of the policy process, we explored the practices employed by licensing authorities when deciding on alcohol licences in situations of conflict between licence applicants and members of the public. Qualitative study comprising a framework analysis of in-depth semi-structured interviews and application of the theories of institutionalism, the advocacy coalition framework and role of ideas. Eleven local authorities in five regions in England in 2019. Purposive sample of 15 licensing officers, licensing subcommittee chairs, public health leads for licensing and police licensing officers. The interview schedule included mechanisms of public involvement in licensing, parties involved, the subject of conflicts and how licensing authorities made decisions. When members of the public opposed licence applications, licensing authorities employed three key decision-making practices: procedural fairness, partnership working and framing. The normativity of procedural fairness was an important institutional structure within which conflicts were resolved. Licensing authorities also worked in partnership with the involved parties, who often appeared as advocacy coalitions that shared beliefs and advanced specific issues to determine mutually acceptable solutions. At times, licensing authorities framed issues through ideational processes to solve problems. Licensing decision-making under the United Kingdom's Licensing Act for England and Wales appear in many cases to focus on resolution of conflicts between licence applicants and members of the public rather than on promotion of licensing objectives. This raises uncertainty regarding the impact of public involvement on reducing alcohol availability, but ultimately represents a pragmatic process that seeks to restore balance in powers, improve transparency in decision-making and empower communities.

Using the United Kingdom standards for public involvement to evaluate the impact of public involvement in a multinational clinical study

BackgroundThe publication of the United Kingdom (UK) Standards for Public Involvement (PI) (UK Standards) in research drew a clear line in the sand regarding the importance of utilising the unique experience, skills and expertise that lay people may offer to the development, conduct and dissemination of clinical research. The UK Standards provide a benchmark which researchers should aim to achieve, yet its implementation continues to be a step wise iterative process of change management. A recent evaluation by a regional research group has suggested that our understanding of PI is enhanced through reflection on the UK Standards. We report on the utility of PI in the design, conduct and dissemination of the HIDDen study, a national, multicentre clinical study based across three UK centres.MethodsA retrospective review of PI within the HIDDen study was conducted using field notes taken by the lead author from interactions throughout their involvement as a lay representative on the study. Key members of the HIDDen study were interviewed and data analysed to explore adherence to the UK Standards.ResultsThere was universal support for PI across the study management group with genuine inclusivity of lay members of the committee. All six of the UK Standards were met to varying degrees. The greatest opportunities lay in ‘working together’ and ‘support and learning’. There were challenges meeting ‘governance’ with evidence of participation in decision making but less evidence of opportunities in management, regulation, leadership.ConclusionThis study concurs with previous research supporting the utility of the Standards in the conduct and evaluation of PI in clinical research. To our knowledge this is the first multi-national study to be evaluated against the UK Standards.

A brief guide to public involvement in cardiovascular research

This article overviews the background and importance of public involvement in cardiovascular research. It also provides a useful framework and helpful resources for researchers to use in practice. The philosophical...

The decision-making process in recommending electronic communication aids for children and young people who are non-speaking: the I-ASC mixed-methods study

Background This project [Identifying Appropriate Symbol Communication (I-ASC)] explored UK decision-making practices related to communication aid recommendations for children and young people who are non-speaking. Research evidence related to communication aid decision-making is limited. The research aims were to increase understanding of influencers on the decision-making process in recommending electronic communication aids, and to develop guidance tools to support decision-making. An additional, post hoc aim was to evaluate the public involvement contribution to the I-ASC project. The research focused on the identification of attributes and characteristics that professionals, family members and those who use communication aids considered important in the recommendation process. Findings informed the development of guidance resources. The evaluation of public involvement focused on what could be learned from a nationally funded project with involvement from public contributors typically regarded as hard to include. Methodology For the clinical decision-making component, the methodological investigation adopted a three-tier approach with three systematic reviews, a qualitative exploration of stakeholder perspectives through focus groups and interviews, and a quantitative investigation surveying professionals’ perspectives. The public involvement evaluation adopted a mixed-methods approach. A total of 354 participants contributed to the decision-making data set, including professionals, family members, and children, young people and adults who use communication aids; 22 participants contributed to the public involvement evaluation. The literature review process followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Thematic analysis and framework approach supported the analysis of qualitative data. Two stated preference surveys, a best–worst scaling and a discrete choice experiment, allowed the relative importance of factors in decision-making to be determined. Analysis was grounded in random utility theory. Public involvement Two public involvement co-researchers, an adult using a symbol communication aid and a parent of a communication aid user, were core members of the research team. The I-ASC public involvement resulted in an additional award to evaluate the impact of public involvement across the project. Results Factors influencing decision-making are not always under the control of the decision-makers, for example professional knowledge, referral criteria and service structure. Findings suggest that real clinical decisions contrast with hypothetical decisions. Survey responses indicated that children’s physical characteristics are less important than their language, communication and learning abilities; however, during real-time decision-making, the opposite appeared to be true, with access needs featuring most prominently. In contrast to professionals’ decisions, users and family members prioritise differing aesthetic attributes of communication aids. Time allocated to system learning remains underspecified. The research informed the development of decision-making guidance tools (https://iasc.mmu.ac.uk/; accessed 8 June 2020). A public involvement evaluation suggests that successful public involvement of individuals with disabilities requires significant resources that include staff time, training and personal support (https://iasc.mmu.ac.uk/publicinvolvement; accessed 8 June 2020). Future work Further research is needed in the areas of language assessment, communication aid attributes, types of decision-making episodes and service user perspectives. These data highlight the need for mechanisms that enable public involvement co-researchers to be paid for their contributions to research bid preparation. Limitations Individuals who benefit from communication aids are a heterogeneous group. We cannot guarantee that this study has captured all relevant components of decision-making. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 45. See the NIHR Journals Library website for further project information.

Perspectives on public involvement in health research from Singapore: The potential of a supported group model of involvement.

BackgroundSingapore is an international research hub, with an emphasis on translational clinical research. Despite growing evidence of the positive impact of public involvement (PPI) in research, it remains rare in Singapore.Aims To investigate Singaporean public perspectives around the rationale, role and scope for being involved in health researchTo identify the potential, challenges, facilitators and strategies for implementing PPI in Singapore. DesignSemi‐structured qualitative interviews with members of the public, analysed using thematic framework analysis.ResultsTwenty people participated. Four main themes emerged: potential benefits; challenges; facilitators; and strategies for implementation. Whilst initially unfamiliar with the concept, all interviewees recognized potential benefits for the research itself and those involved, including researchers. PPI was seen to offer opportunities for public empowerment and strengthening of relationships and understanding between the public, academics and health professionals, resulting in more impactful research. Challenges included a Singaporean culture of passive citizenship and an education system that inculcates deferential attitudes. Facilitators comprised demographic and cultural changes, including trends towards greater individual openness and community engagement. Implementation strategies included formal government policies promoting involvement and informal community‐based collaborative approaches.ConclusionGiven the socio‐political framework in Singapore, a community‐based approach has potential to address challenges to PPI and maximize impact. Careful consideration needs to be given to issues of resource and support to enable members of the public to engage in culturally sensitive and meaningful ways that will deliver research best placed to effectively address patient needs.

The reported impact of public involvement in biobanks: A scoping review.

BackgroundBiobanks increasingly employ public involvement and engagement strategies, though few studies have explored their impact. This review aims to (a) investigate how the impact of public involvement in biobanks is reported and conceptualized by study authors; in order to (b) suggest how the research community might re‐conceptualize the impact of public involvement in biobanks.MethodsA systematic literature search of three electronic databases and the INVOLVE Evidence Library in January 2019. Studies commenting on the impact of public involvement in a biobank were included, and a narrative review was conducted.Results and discussionForty‐one studies covering thirty‐one biobanks were included, with varying degrees of public involvement. Impact was categorized according to where it was seen: ‘the biobank’, ‘people involved’ and ‘the wider research community’. Most studies reported involvement in a ‘functional’ way, in relation to improved rates of participation in the biobank. Broader forms of impact were reported but were vaguely defined and measured. This review highlights a lack of clarity of purpose and varied researcher conceptualizations of involvement. We pose three areas for further research and consideration by biobank researchers and public involvement practitioners.ConclusionsFunctional approaches to public involvement in biobanking limit impact. This conceptualization of involvement emerges from an entrenched technical understanding that ignores its political nature, complicated by long‐standing disagreement about the values of public involvement. This study urges a re‐imagination of impact, re‐conceptualized as a two‐way learning process. More support will help researchers and members of the public to undergo such reflective exercises.

Researchers' perspectives on public involvement in health research in Singapore: The argument for a community‐based approach

BackgroundSingapore is becoming a world‐class research hub, promoting the advancement of patient care through translational clinical research. Despite growing evidence internationally of the positive impact of public involvement (PPI), in Singapore PPI remains unusual beyond patient participation as subjects in studies.ObjectiveTo explore health researchers' understandings of the principles, role and scope of PPI, and to identify barriers and opportunities for implementation in Singapore.DesignSemi‐structured qualitative interviews between April and July 2018. Data were analysed using thematic framework analysis.ResultsWhilst most participants (n = 20) expressed a lack of experience of PPI, the interview process provided an opportunity for reflection through which it emerged as a beneficial strategy. Interviewees highlighted both utilitarian and ethical reasons for implementing PPI, particularly around increasing the relevance and efficiency of research. In addition to those challenges to PPI documented in the existing literature, participants highlighted others specific to the Singaporean context that make PPI at an individual level unlikely to be successful, including the socio‐political environment and prevailing social and professional hierarchies. They also identified asset‐based strategies to overcome these, in particular, a more community‐oriented approach.ConclusionThe cultural reluctance of individuals to question perceived authority figures such as researchers may be overcome by adopting an approach to PPI that is closer to family and local community values, and which facilitates patients and the public collectively engaging in research. Further work is needed to explore the views of patients and the public in Singapore, and the implications for other Asian communities.

Effective involvement: a report on the evaluation of a research awareness training package for public involvement in health research

BackgroundAs the role of Patient and Public Involvement contributors expands to all stages of the research cycle, there is increasing demand for training that meets the needs of this diverse population. To help meet this demand the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care, Yorkshire and Humber, worked with members of the public to develop a bespoke training package. The University of Huddersfield’s Public Partnership Group were invited to host the training and undertake an independent evaluation.MethodsParticipatory action research was used to structure the evaluation, such that participants in the training and public members of the evaluation team were co-collaborators with a robust, significant and visible share in the process. This is evidenced by public team members’ roles in undertaking the majority of data gathering, including surveys, non-participant observation and interviews, and analysis, engaging in all reflective discussions, leading on producing a formal report and contributing significant sections of this paper.The evaluation was approved by a University ethics panel.Public involvement consisted of the 13 participants who received the training, and 3 of the 6 members of the evaluation team. Data collection took place between November 2017 and March 2018.ResultsThe evaluation found that participants understood more about the research process from attending the training, gaining greater confidence in their ability to volunteer to get involved. It also highlighted the difficulties of meeting the training needs of a diverse group with varying experiences and expectations. Skilful facilitation was needed to maintain pace, whilst engaging people with different levels of interest and knowledge. The management of the environment to maximise comfort and involvement was important. Early feedback to the delivery team enabled timely updating of the package.Involvement in the evaluation was initially daunting for the three public members of the team, but hugely enjoyable and fulfilling, as well as enriching the process and outcomes. In particular, public involvement in the analysis and interpretation stages increased the authenticity of the evaluation findings.ConclusionsThis evaluation validated the training package and demonstrated the value and impact of Public Involvement at all levels in research.

Public involvement in health and social sciences research: A concept analysis.

BackgroundResearch funding bodies have significantly increased emphasis on the need for public involvement in research with the requirement to evidence effective methods and approaches to achieving this. Specific definitions and approaches within published research remain tokenistic and vague.ObjectiveThe concept analysis explores and clarifies the nature and meaning of public involvement in health and social sciences research and identifies operational definitions which can be used to guide, develop and evaluate public involvement in research activity.Search strategyA literature search was conducted using online databases. Systematic literature reviews and broader studies on the impact of PPI were included as was grey literature such as guidance from INVOLVE and research funding bodies. Limits were set to papers published in the last 10 years and in the English language. A concept analysis framework adapted from Rodgers (Concept Development in Nursing: Foundations, Techniques and Applications. London, UK: Saunders; 2000) and Walker and Avant (Strategies for Theory construction in Nursing. Boston, MA: Pearson Prentice Hall; 2005) was applied.Main resultsFive operational definitions were developed from the concept analysis: undefined involvement; targeted consultation; embedded consultation; co‐production; and user‐led research. Typical examples of each approach were identified from the literature. Defining attributes included having clear and agreed meaning and purpose for any involvement; reciprocal relationships; and value and recognition of the expertise of all those involved.ConclusionsThe authors argue the need for researchers to more explicitly incorporate and evaluate details of approaches used. Impact of public involvement on a research study should be identified when reporting on findings to prevent tokenistic practices where involvement is viewed as secondary to the core research process.

Using the Public Involvement Impact Assessment Framework to assess the impact of public involvement in a mental health research context: A reflective case study.

BackgroundWe assess the utility of the Public Involvement Impact Assessment Framework (PiiAF) as a resource to support research teams in assessing the impact of Public Involvement across diverse research and public involvement (PI) contexts. PiiAF was developed in response to a well‐documented growth in Public Involvement in health research in the United Kingdom that demands a more sophisticated evidence base to demonstrate its impact.DesignWe used a reflective case study approach drawing on contemporaneous meeting notes, PiiAF website resources and retrospective reflections to describe how PiiAF helped us to develop an impact assessment plan of the PI in a university‐based mental health research centre.DiscussionWe consider key aspects of our experiences of using PiiAF as a tool to help us design an impact assessment of PI, interpret these experiences with reference to relevant theory and research and share insights that may be useful to other teams considering using PiiAF.ConclusionThese insights include understanding the commitment of time and effort required to develop effective PI impact assessment plans; the flexibility of PiiAF and its ability to be used in a range of research and PI contexts; and the advantages of involving all stakeholders (including the public) in the development of an PI assessment plan.

How embedded is public involvement in mainstream health research in England a decade after policy implementation? A realist evaluation.

ObjectivesTo explore how embedded patient and public involvement is within mainstream health research following two decades of policy-driven work to underpin health research with patient and public involvement in England.MethodsRealist evaluation using Normalization Process Theory as a programme theory to understand what enabled patient and public involvement to be embedded as normal practice. Data were collected through a national scoping and survey, and qualitative methods to track patient and public involvement processes and impact over time within 22 nationally funded research projects.ResultsIn research studies that were able to create reciprocal working relationships and to embed patient and public involvement this was contingent on: the purpose of patient and public involvement being clear; public contributors reflecting research end-beneficiaries; researchers understanding the value of patient and public involvement; patient and public involvement opportunities being provided throughout the research and ongoing evaluation of patient and public involvement. Key contested areas included: whether to measure patient and public involvement impact; seeking public contributors to maintain a balance between being research-aware and an outsider standpoint seen as ‘authentically’ lay; scaling-up patient and public involvement embedded within a research infrastructure rather than risk token presence and whether patient and public involvement can have a place within basic science.ConclusionsWhile patient and public involvement can be well-integrated within all types of research, policy makers should take account of tensions that must be navigated in balancing moral and methodological imperatives.

Effective public involvement in the HoST-D Programme for dementia home care support: From proposal and design to methods of data collection (innovative practice).

Public involvement is an important element in health and social care research. However, it is little evaluated in research. This paper discusses the utility and impact of public involvement of carers and people with dementia in a five-year programme on effective home support in dementia, from proposal and design to methods of data collection, and provides a useful guide for future research on how to effectively involve the public. The Home SupporT in Dementia (HoST-D) Programme comprises two elements of public involvement, a small reference group and a virtual lay advisory group. Involving carers and people with dementia is based on the six key values of involvement - respect, support, transparency, responsiveness, fairness of opportunity, and accountability. Carers and people with dementia gave opinions on study information, methods of data collection, an economic model, case vignettes, and a memory aid booklet, which were all taken into account. Public involvement has provided benefits to the programme whilst being considerate of the time constraints and geographical locations of members.

Establishing the values for patient engagement (PE) in health-related quality of life (HRQoL) research: an international, multiple-stakeholder perspective

PurposeActive patient engagement is increasingly viewed as essential to ensuring that patient-driven perspectives are considered throughout the research process. However, guidance for patient engagement (PE) in HRQoL research does not exist, the evidence-base for practice is limited, and we know relatively little about underpinning values that can impact on PE practice. This is the first study to explore the values that should underpin PE in contemporary HRQoL research to help inform future good practice guidance.MethodsA modified ‘World Café’ was hosted as a collaborative activity between patient partners, clinicians and researchers: self-nominated conference delegates participated in group discussions to explore values associated with the conduct and consequences of PE. Values were captured via post-it notes and by nominated note-takers. Data were thematically analysed: emergent themes were coded and agreement checked. Association between emergent themes, values and the Public Involvement Impact Assessment Framework were explored.ResultsEighty participants, including 12 patient partners, participated in the 90-min event. Three core values were defined: (1) building relationships; (2) improving research quality and impact; and (3) developing best practice. Participants valued the importance of building genuine, collaborative and deliberative relationships—underpinned by honesty, respect, co-learning and equity—and the impact of effective PE on research quality and relevance.ConclusionsAn explicit statement of values seeks to align all stakeholders on the purpose, practice and credibility of PE activities. An innovative, flexible and transparent research environment was valued as essential to developing a trustworthy evidence-base with which to underpin future guidance for good PE practice.

MEASURING IMPACT OF INVOLVEMENT IN RESEARCH – WHAT SERVICE USERS THINK

BackgroundThere is increased interest from researchers in evaluating public involvement by service users in health and social care research, with debate about feasibility of doing this. Discussion is led by researchers.ObjectiveTo describe service users' views about whether evaluating impact of public involvement in research is feasible and helpful.Method19 patients or carers were interviewed. All were members of the SUCCESS service user group supporting emergency, unscheduled and trauma research. Some had regular involvement in research studies about prehospital emergency care and chronic conditions management to reduce people's risk of using unscheduled services.ResultsService users found it difficult to identify their impact on research and questioned the value of thinking in those terms. Respondents said that involving people in research changed research because it changed structures, relationships and, consequently, affected the results. Involving patients and carers in research was seen as a radical approach because it challenged hierarchical relationships between academia and patients, gave value to experiential knowledge and placed this alongside clinical and academic knowledge. They also recognised the difficulty of attributing influence and measuring change over long research timescales when their contribution was describing experiences and opinions, neither of which were tangible or definitive. They also doubted they could recognise impact on studies without insider knowledge of research.ConclusionService users believe involvement processes are key to ensuring that patient and carer views are included when designing and undertaking research, suggesting impact on research is a consequence of effective collaborations rather than an aim in its own right. This focus on process contrasts with academic emphasis on impact and needs to be considered when discussing whether and how to measure impact.

A devolved model for public involvement in the field of mental health research: case study learning.

BackgroundPatient and public involvement in all aspects of research is espoused and there is a continued interest in understanding its wider impact. Existing investigations have identified both beneficial outcomes and remaining issues. This paper presents the impact of public involvement in one case study led by a mental health charity conducted as part of a larger research project. The case study used a devolved model of working, contracting with service user‐led organizations to maximize the benefits of local knowledge on the implementation of personalized budgets, support recruitment and local user‐led organizations.ObjectiveTo understand the processes and impact of public involvement in a devolved model of working with user‐led organizations.DesignMultiple data collection methods were employed throughout 2012. These included interviews with the researchers (n = 10) and research partners (n = 5), observation of two case study meetings and the review of key case study documentation. Analysis was conducted in NVivo10 using a coding framework developed following a literature review.FindingsFive key themes emerged from the data; Devolved model, Nature of involvement, Enabling factors, Implementation challenges and Impact. While there were some challenges of implementing the devolved model it is clear that our findings add to the growing understanding of the positive benefits research partners can bring to complex research.ConclusionsA devolved model can support the involvement of user‐led organizations in research if there is a clear understanding of the underpinning philosophy and support mechanisms are in place.