Public Involvement Initiatives Research Articles

From vulnerable subjects to research partners: a critical policy analysis of biomedical research ethics guidelines and regulations

Over the last three quarters of a century, international guidelines and regulations have undergone significant changes in how children are problematised as participants in biomedical research. While early guidelines enacted children as vulnerable subjects with diminished autonomy and in need of special protection, beginning in the early 2000s, international regulatory frameworks defined the paediatric population as vulnerable due to unaddressed public health needs. More recently, ethical recommendations have promoted the active engagement of minors as research partners. In this paper, I adopt a post-structuralist approach to policy analysis to examine deep-seated assumptions and presuppositions underlying the changes in the problematisation of children as biomedical research participants over time. While biomedical research ethics focuses on the autonomy and vulnerability of minors, ethical guidelines are situated in specific sociocultural contexts, shaped, among other things, by contingent public health needs and changing conceptions of the value of research and science for society. In the process, I demonstrate the challenge of moving away from an approach that in taking adults as the model overshadows the complexity of children’s lived experiences as well as their personal, cultural, and social lives. The lack of acknowledgement of this complexity makes children vulnerable to epistemic injustice, which is particularly crucial to address in public involvement initiatives.

Exploring how to improve the involvement of Polish and South Asian communities around big data research. A qualitative study using COM-B model.

Involving public contributors helps researchers to ensure that public views are taken into consideration when designing and planning research, so that it is person-centred and relevant to the public. This paper will consider public involvement in big data research. Inclusion of different communities is needed to ensure everyone's voice is heard. However, there remains limited evidence on how to improve the involvement of seldom-heard communities in big data research. This study aims to understand how South Asians and Polish communities in the UK can be encouraged to participate in public involvement initiatives in big data research. Forty interviews were conducted with Polish (n=20) and South Asian (n=20) participants on Zoom. The participants were living in the United Kingdom and had not previously been involved as public contributors. Transcribed interviews were analysed using reflexive thematic analysis. We identified eight themes. The 'happy to reuse data' theme sets the scene by exploring our participants' views towards big data research and under what circumstances they thought that data could be used. The remaining themes were mapped under the capability-opportunity-motivation-behaviour (COM-B) model, as developed by Michie and colleagues. This allowed us to discuss multiple factors that could influence people's willingness to become public contributors. Our study is the first to explore how to improve the involvement and engagement of seldom-heard communities in big data research using the COM-B model. The results have the potential to support researchers who want to identify what can influence members of the public to be involved. By using the COM-B model, it is possible to determine what measures could be implemented to better engage these communities.

P033 Evidencing the long-term impact of a musculoskeletal Allied Health Professionals and Nurse Research Internship Programme

Abstract Background/Aims The UK-wide AHP and Nurse Research Internship Programme (2015-2022) is an effective, well-recognised model for building musculoskeletal (MSK) research capacity. The programme aim was to encourage and accelerate early clinical academic careers, build confidence and improve research engagement/activity in clinical practice to benefit patients with MSK conditions. We present further evidence of impact of the programme on intern alumni and the higher education institutions (HEIs) since the last evaluation in 2019. Methods Evidence of impact was collated from annual metric surveillance for reporting purposes and an online survey was sent to intern alumni. Seven survey questions were developed to ascertain achievements and career progression since participating in the programme. A purposive sample from the intern alumni were asked to provide additional written reflection. The seven host HEI leads also provided written feedback on their experiences of supervising and/or mentoring interns. Results Since 2015, thirty-nine interns (n = 39) have completed the programme across multiple disciplines - Physiotherapy (n = 13), Podiatry (n = 14), Nursing (n = 4), Radiography (n = 2), Prosthetics & Orthotics (n = 3), Occupational Therapy (n = 3). Metric collation included publications (n = 62), conference attendance/presentations (n = 46), widespread Patient and Public Involvement initiatives and esteem indicators: national awards (n = 4), conference awards (n = 2), PhD fellowships (n = 8). Survey respondents (n = 13) reported faster career progression than their peers, awareness of clinical academic opportunities and involvement in wider collaborative networks with MSK UK researchers. All respondents commented on the positive impact that the programme had on their careers with all having secured, or planning, future clinical academic work. From the intern alumni written reflections (n = 4), a common theme was that the internship provided them with the foundation and networks to progress a clinical academic career in MSK health. The HEI supervisors and/or mentors reported that they had a positive experience in benefitting from working with their interns and each other. For example: “Immensely rewarding, providing a practical foundation for budding clinical academics … also developed my own professional development as an early career researcher progressing to researcher manager”. “It facilitated collaboration between the participating HEIs and directly contributed to ongoing research and outputs in our research centre”. “As an early career researcher, this offered me interviewing, supervision and project management experience alongside publication and collaboration opportunities” Conclusion This evaluation provides further evidence of long-term success of the internship programme as an effective model of research capacity building, specifically in introducing newly qualified AHPs and nurses to MSK research. Tangible benefits have been made for both interns and HEI supervisors and/or mentors through research outputs, clinical academic careers and influencing clinical practice. We have provided a model for research capacity building in other health professions nationally and internationally. Disclosure M. Fry: None. J. Gavin: None. A. Finney: None. M. Ndosi: None. F. Cramp: None. J. Lewis: None. R. Barn: None. C. Price: None. H. Siddle: None. G. Lang: None. E. Leach: None. C. Bowen: None.

P074 Insights into creating a virtual patient and public involvement initiative

Background/Aims Patient and public involvement (PPI) initiatives are important to ensure patient-centered research. However, traditional focus groups can present challenges including the recruitment and retention of patient partners. Additional challenges to patient involvement have also arisen due to the coronavirus pandemic (COVID-19). The University College London (UCL) Patient Partners in Rheumatology Research initiative has been developed to explore novel ways to boost patient involvement and foster an active collaboration between basic researchers and patient partners. Methods Two online surveys were designed to obtain information with regards to the expectations and practicalities of this initiative. One survey was sent to patients who had registered an interest in being patient partners and the other survey to rheumatology researchers at UCL and University College London Hospital (UCLH). Results We received responses from 25 researchers and 21 patients. The majority of patients who responded (71%) had not previously been involved in PPI. Most of the researchers (84%) had previously utilised PPI, however 20% of those had some difficulty accessing it.Most patients (86%) were interested in becoming a patient partner. Amongst those with reservations, one stated that “I don't think I have the qualifications to be involved with scientists and researchers”. Over half of patients (52%) were happy to participate in PPI more than five times a year and most researchers (84%) expressed that five times a year was acceptable. Patients favoured (52%) conducting PPI meetings after office hours (5-8pm) during the working week. Due to social restrictions because of COVID-19, we asked both patients and researchers their preferred mode of meeting. Both groups favoured a mixed (virtual and face to face) meeting arrangement (81% for patients and 68% for researchers). A third of patients (38%) expressed that they would need technical assistance accessing a virtual meeting. Almost all patients (95%) were happy to contribute to lay summary reviews remotely via email. Conclusion Based on the insights gained from the survey results, our PPI initiative meetings will be hosted in a hybrid virtual/face to face format. These will be held at a time and frequency that is convenient for the patient partners to increase participation across wider demographics. This survey has highlighted that we have to be mindful of certain patient perceptions of PPI which creates a barrier to patient involvement and that some individuals may require further support in accessing virtual meetings. By designing a PPI initiative that creatively addressed the needs of both the researchers and patient partners we hope to create a platform for productive dialogue and collaboration to ensure patient-centred research, despite the changes brought about by the COVID-19 pandemic. Disclosure E. Hawkins: Other; funded by National Institute of Health Research, Clinical Research Network. T. Hyndman: None. R. Amarnani: None. J. Kimpton: None. S. Yeoh: Other; University College London Hospital National Institute of Health Research Biomedical Research Centre, UCLH Charities, Royal College of Physicians and Rosetrees Trust. M. Castelino: Other; University College London Hospitals National Institute for Health Research Biomedical Research Centre.

Developing patient-centred care: an ethnographic study of patient perceptions and influence on quality improvement.

BackgroundUnderstanding quality improvement from a patient perspective is important for delivering patient-centred care. Yet the ways patients define quality improvement remains unexplored with patients often excluded from improvement work. We examine how patients construct ideas of ‘quality improvement’ when collaborating with healthcare professionals in improvement work, and how they use these understandings when attempting to improve the quality of their local services.MethodsWe used in-depth interviews with 23 'patient participants' (patients involved in quality improvement work) and observations in several sites in London as part of a four-year ethnographic study of patient and public involvement (PPI) activities run by Collaborations for Leadership in Applied Health Research and Care for Northwest London. We took an iterative, thematic and discursive analytical approach.ResultsWhen patient participants tried to influence quality improvement or discussed different dimensions of quality improvement their accounts and actions frequently started with talk about improvement as dependent on collective action (e.g. multidisciplinary healthcare professionals and the public), but usually quickly shifted away from that towards a neoliberal discourse emphasising the role of individual patients. Neoliberal ideals about individual responsibility were taken up in their accounts moving them away from the idea of state and healthcare providers being held accountable for upholding patients’ rights to quality care, and towards the idea of citizens needing to work on self-improvement. Participants portrayed themselves as governed by self-discipline and personal effort in their PPI work, and in doing so provided examples of how neoliberal appeals for self-regulation and self-determination also permeated their own identity positions.ConclusionsWhen including patient voices in measuring and defining ‘quality’, governments and public health practitioners should be aware of how neoliberal rationalities at the heart of policy and services may discourage consumers from claiming rights to quality care by contributing to public unwillingness to challenge the status quo in service provision. If the democratic potential of patient and public involvement initiatives is to be realised, it will be crucial to help citizens to engage critically with how neoliberal rationalities can undermine their abilities to demand quality care.

Examining the ethical and social issues of health technology design through the public appraisal of prospective scenarios: a study protocol describing a multimedia-based deliberative method.

BackgroundThe design of health technologies relies on assumptions that affect how they will be implemented, such as intended use, complexity, impact on user autonomy, and appropriateness. Those who design and implement technologies make several ethical and social assumptions on behalf of users and society more broadly, but there are very few tools to examine prospectively whether such assumptions are warranted and how the public define and appraise the desirability of health innovations. This study protocol describes a three-year study that relies on a multimedia-based prospective method to support public deliberations that will enable a critical examination of the social and ethical issues of health technology design.MethodsThe first two steps of our mixed-method study were completed: relying on a literature review and the support of our multidisciplinary expert committee, we developed scenarios depicting social and technical changes that could unfold in three thematic areas within a 25-year timeframe; and for each thematic area, we created video clips to illustrate prospective technologies and short stories to describe their associated dilemmas. Using this multimedia material, we will: conduct four face-to-face deliberative workshops with members of the public (n = 40) who will later join additional participants (n = 25) through an asynchronous online forum; and analyze and integrate three data sources: observation, group deliberations, and a self-administered participant survey.DiscussionThis study protocol will be of interest to those who design and assess public involvement initiatives and to those who examine the implementation of health innovations. Our premise is that using user-friendly tools in a deliberative context that foster participants’ creativity and reflexivity in pondering potential technoscientific futures will enable our team to analyze a range of normative claims, including some that may prove problematic and others that may shed light over potentially more valuable design options. This research will help fill an important knowledge gap; intervening earlier in technological development could help reduce undesirable effects and inform the design and implementation of more appropriate innovations.

A response to Martin on the role of citizens, publics and others in participatory processes

In health policy research, it may be tempting to believe that once a research proposal has been written well enough to obtain peerreview approval, relevant papers will come out of it more or less straightforwardly. Nevertheless, the writing of our article (in this issue) was far from unequivocal. Perhaps like any unplanned yet determined journey, it consisted of a learning process that began with a preliminary yet necessarily ill-informed set of notions about what this unknown territory would be like and a strong desire to get to know it better because it matters. The core idea behind the paper dexploring what citizens “are made of”d came from a mind-bugging observation: the “unbearable lightness” of the citizen construct, which can be found in the rhetoric of most people, not just scholars and practitioners of public involvement (Lehoux, Daudelin, & Abelson, in this issue). Later, through the review process, the paper benefitted greatly from constructive observations and criticisms provided by three reviewers. And this is not simply a polite acknowledgement. Public involvement mattered to all three reviewers as well, otherwise our exchanges would have been less productive and less determined. Likewise, Martin (in this issue) provides in his commentary many engaged and engaging arguments that should appeal to academics and practitioners for whom public involvement matters. We agree with the need for the three key components Martin discusses dpurpose, choice of public to be involved and processd to be articulated as clearly as possible. Perhaps it is worth underscoring that GeNet’s leaders were also aware of this trilogydwhich they articulated according to their own understanding, purposes and practical constraintsd and that their inclusion of citizens was not tokenistic. For several of its members, citizen involvement mattered too. Hence, one may wonder why being aware of the need to define purposes, publics, and processes dwhile being genuinely concerned about public involvementd does not automatically prevent one from falling short in some ways. We found in Martin’s commentary part of the explanation for why this might be the case. We reflect upon three features of the committed posture that condition most public involvement initiatives and that, when acknowledged constructively, may help the field move forward.

Fostering deliberations about health innovation: What do we want to know from publics?

As more complex and uncertain forms of health innovation keep emerging, scholars are increasingly voicing arguments in favour of public involvement in health innovation policy. The current conceptualization of this involvement is, however, somewhat problematic as it tends to assume that scientific facts form a "hard," indisputable core around which "soft," relative values can be attached. This paper, by giving precedence to epistemological issues, explores what there is to know from public involvement. We argue that knowledge and normative assumptions are co-constitutive of each other and pivotal to the ways in which both experts and non-experts reason about health innovations. Because knowledge and normative assumptions are different but interrelated ways of reasoning, public involvement initiatives need to emphasise deliberative processes that maximise mutual learning within and across various groups of both experts and non-experts (who, we argue, all belong to the "publics"). Hence, we believe that what researchers might wish to know from publics is how their reasoning is anchored in normative assumptions (what makes a given innovation desirable?) and in knowledge about the plausibility of their effects (are they likely to be realised?). Accordingly, one sensible goal of greater public involvement in health innovation policy would be to refine normative assumptions and make their articulation with scientific observations explicit and openly contestable. The paper concludes that we must differentiate between normative assumptions and knowledge, rather than set up a dichotomy between them or confound them.

A survey of public views of a child and adolescent mental health service: A public involvement initiative

Meaningful public involvement in service development requires valid data collection as well as responsive service systems. We present a survey study of local parents and young people and discuss both the outcomes and processes of the project.

Understanding the Economic and Social Effects of Academic Clinical Partnerships

Partnerships between medical schools and their clinical associates, which we describe in this article as academic clinical partnerships (ACPs), are powerful economic and social actors through their roles as major employers and procurers of goods and services. A broad spectrum of effects extending beyond the tripartite mission shapes the social contract between ACPs and the communities they serve. The authors present a model for identifying and measuring effects across this spectrum and illustrate the model's application with reference to specific case studies set in the United Kingdom. This model categorizes effects into five different domains: economic, human capital, social capital, knowledge, and place. These different effects express themselves along a spatial scale that varies from the very local to the global. The authors describe the theoretical background for each domain, as well as the methods required to identify and measure effects. These methods range from a quantitative economic impact analysis using extended input-output models to qualitative methods to capture social capital and place effects. The authors demonstrate how leaders in academic medicine can use the model to build a holistic picture of the societal effects of ACPs. Evidence of impact is of value to ACP leaders in engaging with both national and local stakeholders, and the approach is likely transferable to different countries.

Involving the public in NHS service planning

The purpose of this paper is to report the findings of a study that examined the development of an assessment framework for public involvement. The paper has adopted a multi-method approach that includes: a focused review of literature relating to tools that might be used to provide valid and reliable assessments of public involvement; key informant interviews with people with experience from various perspectives of efforts to involve the public in the planning and development of health services; and a detailed study of a specific public involvement initiative involving a range of "stakeholder" interviews. The paper finds that there are uncertainty and a lack of consensus about how assessment of public involvement should be undertaken. The findings emphasise the need to recognise the diverse nature of public involvement, which may require assessment to be employed flexibly at each individual NHS Board level. The paper is a small-scale study, in which it was only possible to probe a limited number of stakeholders' views due to practical and time restrictions. The paper adds value to the discussions taking place at Scottish Government level as to the best approach in assessing public involvement in health service decision making.

Evaluating the impact of patient and public involvement initiatives on UK health services: a systematic review

English This article reports on a systematic review of the patient and public involvement (PPI) literature in the UK that was undertaken in 2005 to support an evaluation of the Patient Advice and Liaison Services (PALS) in England. The general PPI literature has been extensively reviewed; here we focus on the relatively small empirically based evaluation literature. The research adopts the framework of realistic evaluation, which identifies contexts, mechanisms and outcomes that lead to favourable and unfavourable outcomes. The question guiding the review is therefore: ‘What context and mechanism factors can be identified from empirical research that will lead to successful PPI outcomes?’.

Assessing the effect of public involvement processes in forest management in Quebec

Despite the proliferation of public involvement initiatives in the forest sector, methodologies for monitoring the success of individual processes have been particularly weak. Assessments have traditionally examined the outward appearance of public involvement processes rather than what they accomplish. The aim of our research project was to develop a method for assessing the impact of public involvement processes in Quebec, and to test this method in the context of forest certification initiatives. More precisely, the research project determined that the public involvement processes tested in the Haute-Mauricie region, Quebec (Canada): (1) fostered better information sharing among parties interested in forest management; (2) brought about changes in forestry planning; (3) decreased mistrust between local stakeholders; and (4) reduced potential negative conflicts in this region. However, the experiment also showed that further institutional support should complement a public involvement initiative in order to increase its impact on forest management planning and on the relationships among parties interested in forest management.

Analysis of the Resident Component in PennPlan’s Public Involvement Survey: Survey Overview and Item Nonresponse Selectivity Issues

As part of the public involvement initiative undertaken for Pennsylvania’s new long-range transportation plan (PennPlan), an attitudinal survey was administered to a sample of residents in the state. A few survey issues and an in-depth analysis of the survey questions are summarized. Information is provided on ( a) the purpose of the survey, its components, and underlying themes; ( b) the administration of the survey, its advantages and disadvantages, and possible solutions to improve the survey administration process; and ( c) an in-depth analysis of the grades and importance ratings assigned to various aspects of the existing transportation system. The last issue receives particular emphasis. To compensate for the large number of nonresponses and the systematic response for the grades and importance ratings, the analysis was done in two steps. The first step uses sample selectivity to determine if systematic patterns existed between the residents who did and the residents who did not assign grades and importance ratings to certain aspects of the existing transportation system as functions of personal and residence characteristics. The results of this step were then used to “adjust” the coefficients in an ordered probit regression model that explains resident grades and importance ratings for the valid responses. By doing this, the models can account for the systematic nonresponse and yield models of responses on the basis of which unbiased inferences can be made.