Academic consumer researchers: a bridge between consumers and researchers.

The case for children and young people’s involvement in health research has been well documented, but less attention has been paid to the experiences and impact of involving children and young people rather than adults. This paper explores these issues in relation to a project undertaken for the James Lind Initiative on the availability, quality and reliability of existing data on young people’s involvement in studies supported by the National Institute for Health Research (NIHR). The project found that there was no systematic way of getting reliable and comparable information about which young people are involved in health research in England, what form that involvement may have taken or the impacts of involvement. There is a need to better collate and disseminate evidence on young people’s involvement in research, using both existing systems and processes, and the possible development of new metrics and measures. Not having this information risks children and young people’s involvement continuing to develop in a piecemeal fashion. Further research is needed about how, when and where children and young people are involved in health research, and about the impact of involvement on research and on the children and young people involved.

BackgroundMeaningful involvement of adolescents in health research is their fundamental human right and has many benefits. A lack of awareness among researchers on how to meaningfully involve adolescents in health research has been linked to adolescent under involvement in health research. To address this barrier, studies have reported the need for more guidance. To inform the development of better guidelines on adolescent involvement, there is a need to first consolidate the currently available guidance on adolescent involvement in health research and to identify the gaps in these guidelines. This review aims to systematically identify all the currently available guidelines on adolescent involvement in health research and evaluate their scope, content, context, and quality.MethodsThis rapid review was pre‐registered with PROSPERO #CRD42021293586. It included documents that incorporated tangible recommendations on the involvement of adolescents in health research. We searched six databases for peer‐reviewed literature: MEDLINE, CINAHL, Embase, Scopus, Web of Science, and ERIC. We conducted a grey literature search in Google Scholar, Google, websites of 472 relevant organisations and sought expert input. The quality of the guidelines was assessed using the Appraisal of Guidelines for REsearch & Evaluation (AGREE‐II) Instrument. Data was analysed using descriptive analyses and narrative synthesis.ResultsWe found that the current guidelines on adolescent involvement in health research are often narrow in scope, targeting specific users and populations while focusing on limited research areas. The guidelines individually fail to provide comprehensive coverage of recommendations across all topics related to adolescent research involvement, that are collectively addressed across all included guidelines. Furthermore, these guidelines tend to be context‐specific and are generally of low quality, often due to inadequate stakeholder involvement and a lack of rigorous development methods.ConclusionThis review provides a consolidated list of guidelines on adolescent involvement in health research along with their quality scores as a resource for researchers to select the guidelines suitable for their research topic, context, and scope for adolescent involvement. There is a need to develop a set of guidelines on adolescent involvement in research, which are comprehensive in scope, cover all key aspects of adolescent involvement in health research, can be adapted for different contexts, and which are based on rigorous and systematic methods.Patient and Public InvolvementAdolescent co‐researchers D. B. and C. W. were involved at different stages of the review process. D. B. screened 25% of the peer‐reviewed articles at the title and abstract screening stage and 10% at full‐text screening stage. C. W. extracted data from 10% of the included guidelines. Both co‐researchers reviewed and shared their feedback on the article and are co‐authors on this paper. They will also be invited to contribute to further dissemination of the findings from this review.

Patient and public involvement in health research, including mental health research, is promoted by research funders in England. However, it is poorly conceptualised. One argument is that patient and public involvement in research is an ethical imperative because those who research is for should have a stake in how it is done. This could be developed through concepts of citizenship and democratic science. More strongly, it can be argued that changing the knowledge producers will change knowledge itself. Starting with feminist standpoint epistemology, it is argued that a political conceptualisation best captures the new knowledge that marginalised health groups can produce.

BackgroundPatient and Public Involvement (PPI) groups are becoming more established as collaborators with academic researchers and institutions to ensure that research is important and relevant to end users, and to identify areas that might have ethical considerations, as well as to advise on solutions. The National Institute for Health and Care Research UK Standards for Public Involvement in Research embody best practice for PPI, including support and learning opportunities that build confidence and skills for members of the public to play an invaluable and mutually productive role in research. However, the pivotal role of research and professional services (management and administrative) staff within academic institutions for sustaining and making this involvement successful is often overlooked.Main bodyIt takes significant effort to develop and sustain effective PPI in research. The six UK Standards for Public Involvement highlight the need for consistent, inclusive, well-governed and mutually respectful working relationships to sustain effective PPI contributions in health research. Productivity across a team of lay and academic members requires organisation and experience of implementing these standards by a dedicated PPI team, yet advice on PPI finances is usually focused on costs for patient panel members, and budgets in funding applications rarely consider the wider PPI team behind this involvement. As an exemplar, we reflect on how the Asthma UK Centre for Applied Research (AUKCAR) has developed a dedicated PPI Platform, with guidance for how PPI should be embedded throughout the research lifecycle, and detailed information to support the costing of PPI in funding applications. AUKCAR’s work with established researchers, as well as Early Career Researchers and PhD students, is at the heart of a campaign to raise awareness of the importance of PPI in effective research planning.ConclusionFocusing attention on the staff behind best practice involvement in health research may stimulate a much-needed discussion to ensure flourishing PPI capacity, with significant patient and public benefit. With adaptation, the PPI expertise within AUKCAR can be translated more widely.

BackgroundHealth consumers are often targeted for their involvement in health research including randomized controlled trials, focus groups, interviews, and surveys. However, as reported by many studies, recruitment and engagement of consumers in academic research remains challenging. In addition, there is scarce literature describing what consumers look for and want to achieve by participating in research.ObjectiveUnderstanding and responding to the needs of consumers is crucial to the success of health research projects. In this study, we aim to understand consumers’ needs and investigate the opportunities for addressing these needs with Web-based technologies, particularly in the use of Web-based research registers and social networking sites (SNSs).MethodsWe undertook a qualitative approach, interviewing both consumer and medical researchers in this study. With the help from an Australian-based organization supporting people with musculoskeletal conditions, we successfully interviewed 23 consumers and 10 researchers. All interviews were transcribed and analyzed with thematic analysis methodology. Data collection was stopped after the data themes reached saturation.ResultsWe found that consumers perceive research as a learning opportunity and, therefore, expect high research transparency and regular updates. They also consider the sources of the information about research projects, the trust between consumers and researchers, and the mobility of consumers before participating in any research. Researchers need to be aware of such needs when designing a campaign for recruitment for their studies. On the other hand, researchers have attempted to establish a rapport with consumer participants, design research for consumers’ needs, and use technologies to reach out to consumers. A systematic approach to integrating a variety of technologies is needed.ConclusionsOn the basis of the feedback from both consumers and researchers, we propose 3 future directions to use Web-based technologies for addressing consumers’ needs and engaging with consumers in health research: (1) researchers can make use of consumer registers and Web-based research portals, (2) SNSs and new media should be frequently used as an aid, and (3) new technologies should be adopted to remotely collect data and reduce administrative work for obtaining consumers’ consent.

Background: Research is fundamental in improving health through informing health practices and policies. Despite significant capacity building in some areas to support health research efforts, research capacity in low-middle countries, such as Papua New Guinea, is weak. Bachelor of Midwifery students at the University of Goroka, between 2012 and 2016, were introduced to research and produced a proposal for a small study to be implemented when they returned to their place of work as qualified midwives. Despite students being very enthusiastic about carrying out the research during the development of their research proposal, there was limited evidence of them being able to successfully complete their research. This study aimed to understanding the barriers perceived by the graduate midwives to performing research in their own setting so as to inform development of strategies to support the students and graduates in their research efforts in the future. Methods: An exploratory, descriptive study was conducted using a qualitative approach. Semi-structured interviews were conducted with nine Bachelor of Midwifery graduates from the University of Goroka practising in the Eastern Highlands Province of Papua New Guinea. Data was thematically analysed using Braun and Clark’s six stage approach and themes and sub-themes identified. Findings: Participants viewed research as a skill set and a tool that could be used for problem solving, improving practice and creating evidence. Although some participants were confident with some research skills and had started a research study, they felt they did not have enough skills to complete the study. Others stated that although they were interested to undertake research, they did not understand the research process, and were lacking in knowledge and skills. Barriers to performing research identified by participants included lack of time, lack of support in the workplace, lack of resources and no culture of research in the workplace. Enablers identified included having an experienced researcher as a mentor, having access to ongoing training in research and other skills, e.g. computer and internet use, having resources such as books and internet access, having time during work to undertake research, and having support in workplace. Conclusion: Despite some introductory integration of research knowledge and skills into undergraduate midwifery curriculum and a perception by graduate midwives that research is important it does not translate into graduate midwives professional practice. Bachelor of Midwifery curricula must increase the amount of time spent on research content which must be taught in practical ways and by experienced educators so students are inspired and skilled to undertake research.

Patient and public involvement in health research is increasingly well established internationally, but the impacts of involvement on the research process are hard to evaluate. We describe a process of qualitative data analysis in a mental health research project with a high level of mental health service user and carer involvement, and reflect critically on how we produced our findings. Team members not from research backgrounds sometimes challenged academic conventions, leading to complex findings that would otherwise have been missing. An essential component of how we coproduced knowledge involved retaining methodological flexibility so that nonconventional research voices in the team could situate and critique what was conventionally known. Deliberate and transparent reflection on how "who we are" informed the knowledge we produced was integral to our inquiry. We conclude that reflecting on knowledge (co)production is a useful tool for evaluating the impact of patient and public involvement on health research.

Iran engages local communities in health research

BackgroundThere are substantial gaps in our knowledge regarding the aetiology of mental, neurological and substance use disorders in sub-Saharan Africa, and the cost-effectiveness and scalability of interventions to reduce the burden of these conditions on the continent. To address these gaps, international investment has focussed on building research capacity, including funding doctoral students in African countries, to support development of high quality, contextually relevant interventions. Absent, however, is an understanding of how capacity building feeds into research careers.MethodsWithin a broader mental health research capacity-building initiative (African Mental Health Research Initiative), we conducted 52 qualitative interviews with early-career researchers, policymakers, academics, and service users from four African countries (Ethiopia, Malawi, South Africa, and Zimbabwe) and with international funders of mental health research. The interview guide focused on the research context, planning, and priorities and how respondents perceive research careers and funding. Thematic analysis was applied to the transcribed interviews.ResultsFive components of a research career emerged: (i) research positions; (ii) research skills; (iii) funding; (iv) research commitment from African countries; and (v) advocacy. All stakeholders wanted more high-impact African researchers, but few saw a clear, replicable track for developing their careers within universities or their Ministries of Health in their African countries. This stemmed, in part, from the lack of support for infrastructure that enables high-quality research: grants administration, mentorship, university leadership, research culture, and open communication between policymakers and researchers.ConclusionsThis study highlights the importance of developing research infrastructure alongside capacity-building efforts. International funders should invest in grant management at African universities which would place them at the centre of research initiatives. African universities should prioritise the creation of a research culture by developing and promoting well-defined research tracks for both clinicians and academics, investing in grant management, and raising the profile of research within their institutions.

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.

This chapter reviews theory on how knowledge about mental health is produced in society and how this impacts mental health services, research and professional education in working to uphold particular forms of inequality. Dominant forms of knowledge can lead to culturally available constructions of phenomena that receive acceptance in society at any one time. Examples include codified and reductive knowledge about mental health, produced and replicated through academic research and professional education, that impact on the ways in which mental health services are delivered. We consider what these complex dynamics may hold for the formation and use of experiential knowledge in mental health research, services and professional education. We discuss the many ways that experiential knowledge has been subject to epistemic discreditation and suggest ways of moving forward by re-conceptualising the power of experiential knowledge to invoke resistance to dominant ways of knowing about mental health. We highlight the potential of experiential knowledge as emancipatory discourse, contributing to a change in the way in which knowledge about mental health is produced. We explore the complexity of experiential knowledge as socially situated and shaped by a diversity of identity, experience and other sites of disadvantage or discrimination.

Public and Patient Involvement (PPI) in mental health research is increasingly recognised as a moral and ethical imperative, necessary to increase the relevance and effectiveness of translation of research findings. Despite policy mandates and growing evidence of its benefits, PPI implementation in mental health research remains inconsistent. Little attention has been given to the state of scientific knowledge on PPI capacity strengthening in mental health research that can support more meaningful implementation. The aims of this scoping review are to: describe the content, implementation process, and theoretical underpinnings of PPI capacity-strengthening initiatives in mental health research; identify quantitative outcome measures and outcomes used to evaluate the initiatives' impact on PPI contributors, research processes, and policy; and map barriers and enablers to the initiatives' implementation. This scoping review will follow JBI and PRISMA-ScR guidelines. Sources will include peer-reviewed articles, grey literature, and organisational materials describing training or skill-building initiatives for adult PPI contributors in mental health research. Searches will be conducted in MEDLINE, Embase, PsycINFO, and CINAHL, supplemented by hand-searching, targeted internet searches, and stakeholder consultation. Data extraction will capture descriptive details, initiative content, outcomes, and contextual factors, with barriers and enablers categorised according to the Consolidated Framework for Implementation Research (CFIR) domains. This review will provide the first comprehensive synthesis of capacity-strengthening initiatives for PPI contributors in mental health research. Findings will inform the development of a co-designed blueprint for capacity-strengthening for PPI contributors, and progress broader efforts to embed lived experience expertise and general public perspectives equitably within mental health research systems.

A major contributor to health disparities is the relative lack of resources-including resources for science-allocated to address the health problems of those with disproportionately greater needs. Engaging and involving underrepresented communities in setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values. We engaged minority and underserved communities in informed deliberations and report here their priorities for health research. Academic-community partnerships adapted the simulation exercise CHAT for setting health research priorities. We had participants from minority and medically underserved communities (47 groups, n = 519) throughout Michigan deliberate about health research priorities, and we used surveys and CHAT software to collect the demographic characteristics and priorities selected by individuals and groups. The participants ranged in age (18 to 88), included more women than men, and were overrepresented by minority groups. Nearly all the deliberating groups selected child health and mental health research (93.6% and 95.7%), and most invested at the highest level. Aging, access, promote health, healthy environment, and what causes disease were also prioritized by groups. Research on mental health and child health were high priorities for individuals both before and after group deliberations. Access was the only category more likely to be selected by individuals after group deliberation (77.0 vs 84.0%, OR = 1.63, p = .005), while improve research, health policy, and culture and beliefs were less likely to be selected after group deliberations (all, p < .001). However, the level of investment in many categories changed after the group deliberations. Participants identifying as Black/African American were less likely to prioritize mental health research, and those of Other race were more likely to prioritize culture and beliefs research. Minority and medically underserved communities overwhelmingly prioritized mental health and child health research in informed deliberations about spending priorities.

Background Within the field of patient and public involvement in health service research, there is a growing movement towards not only involving patients in research but engaging them as co-producers of knowledge. We explore such a co-productive research relationship in a case study on rural perinatal mental health, with the aim of collaboratively developing knowledge based on both the relevant lived experience of a community partner, and the systemic knowledge of academic researchers.Methods Data was gathered through a community forum and subsequent interviews with social service program administrators from rural British Columbia, Canada. Interviews were analyzed separately by the community partner and academic researchers using principles of thematic analysis. Both the community partner and academic researchers were involved from project genesis to data collection, analysis, interpretation, and manuscript writing.ResultsCommon themes identified by the academic and community researchers included needs for peer support, barriers to peer support, and gaps in mental health care. Divergently, the academic researcher focused on systems-level challenges while the community partner emphasized the impact of power dynamics within health systems. Researchers generated five methodological values propositions from the process of co-production, including (a) mutual respect for all viewpoints, (b) a rejection of assumed hierarchy, (c) commitments to truth speaking, (d) attention to process, and (e) equivalence of contribution.ConclusionsCo-production highlights the value of lived experience in health research, sets it in conversation with scientific inquiry, and moves away from hierarchies of assumed knowledge often embedded in traditional health care research. Incorporating both academic researcher and community partner writing into our paper reflects a commitment to maintaining the integrity and authenticity of lived experience, an affirmation of its equal validity as a source of knowledge, and a rejection of qualifying patient voices. The exploration of this co-production research relationship lays groundwork for future research teams considering collaborative methodology. We suggest co-productive research as a means of addressing the epistemic injustice that arises in health care research from the privileging of certain forms of knowledge, and the exclusion of others, namely that derived from patient experience.

After a decade of attempts at patient-oriented research, this article seeks to advance the approach, making individuals and communities active partners in health research. Patient-oriented research remains inconsistently implemented, tokenistic, and met with resistance—largely due to the system in which it was conceived and practiced. Patients remain bound by object-oriented medical cosmologies, thus reaffirming the hierarchical system underpinned by professional dominance. Until health research and researchers develop an awareness of the subtle injustices legitimized by the current approach, patient-oriented research will not actualize its mandate. This article does not challenge the healthcare system as that is beyond its scope; instead, it aims to develop further the “what” and “how” of public involvement in health research through the supplement of participatory research methodologies. In effect, setting the early foundations for transformation and encouraging a transition to a more just and equitable healthcare and research ecosystem.