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Both authors have been involved as lay members in research and other activities for a number of years, ensuring they represent the views of members of the public. This chapter identifies what is, and what is not, patient and public involvement as well as highlighting the importance of involving members of the public in all aspects of the research process. Best practice is explored as identified in the UK Standards for Public Involvement 2019 and the UK Policy Framework for Health and Social Care Research 2020. The implications of the Mental Capacity Act and its wording on research matters are also considered. Case studies have been incorporated to highlight the impact of involving patients and members of the public in all aspects of the research process. These include the lessons learnt by researchers and lay members of the team. The aspiration is to move towards more collaboration between members of the public and researchers; therefore, we discuss co-production of research or community-based participatory research (CBPR). We highlight the need for a better partnership between researchers and members of the public. The benefits of this are explored along with the consequences for all involved.

This paper aims to share how the Centre for Ageing and Dementia Research co-designs research within a national programme of work to improve the lives of older adults and those affected by dementia. Through examples of this work, the authors identify the barriers and enablers to participatory approaches and lessons to inform future involvement activities.

This study reflects on implementing the UK National Standards for Public Involvement into practice. Of international relevance, the observations span the research process from research prioritisation and design to research implementation and knowledge exchange.

This study demonstrates the importance of using a relational approach, working toward a common purpose and engaging in meaningful dialogue. Only through offering choice and flexibility and actively learning from one another can co-design lead to synergistic relationships that benefit everyone.

Key implications for researchers engaged in patient and public involvement are be receptive to other people’s views and acknowledge expertise of those with lived experience alongside those with academic expertise. Training, resources and time are required to effectively support involvement and meaningful relationships. A nominated contact person enables trust and mutual understanding to develop. This is an ongoing collective learning experience that should be embedded throughout the entire research process.

This paper demonstrates how the standards are implemented with people who are often excluded from research to influence a national programme of work.

Science is too important to be left solely to scientists, and so the public need to be involved in the design, funding, delivery and implementation of health research, and in discussions about the ethics of research. Since the 1960s, the United Kingdom and many other countries have included scientists from outside health care in various roles in health care research, as well as nonscientists, ordinary citizens, patients and carers. In the last 20 years, these roles have increased in number and range, but significant challenges remain in ensuring that research is always conducted in an ethical fashion. Errors arise when it is assumed that research is ethical because it has passed a single test rather than being subject to constant vigilance; when academic training on its own is regarded as sufficient to guarantee ethical conduct; when pontification about sophisticated dilemmas ignores fundamental matters of equity and helpfulness and when there is an absence of curiosity about the value positions of others (Boaz et al., 2016). We argue in this chapter that in every setting, citizens have the potential to contribute to ethical debates, whether they assist in establishing priorities for research funding, serve as research funding co-applicants, take the lay member places on Research Ethics Committees and Steering Committees, collect and analyze data or co-author academic papers.

In this chapter, we consider collaborative models of engaged research in comparison to models of team science that include persons with lived experience of the topic area as team members. ‘Co-led’, ‘co-design’ and ‘co-research’ are all terms used in the literature with distinct, but not precise, definitions and approaches. These collaborative models tend to describe methods that allow those with lived experience to be treated differently than other academic members of the research team. Power imbalances between those with lived experiences and researchers persist in such models, in spite of researcher efforts. For example, persons with lived experience are often described as being compensated with gift cards which may be welcomed but can be perceived as diminishing their role and contribution. In contrast, participatory team science involves persons with lived experience as full members of the research team. In the model that we propose, power is balanced through mutual planning and consensus-based decision-making. We contend that using participatory team science advances research through egalitarian consideration of team members' perspectives of the research problem and the designs necessary to knowledge development.

Co-production has received increasing attention from managers and researchers in public services. In the health care sector, co-production has become a by-word for the meaningful engagement of patients yet there is still a lack of knowledge around what works when co-producing services. The paper sets out a set of pragmatic principles which may guide anyone embarking on co-producing health care services, and provides an illustration of a co-produced Young People’s Health Research Group in England. We conclude by outlining some learning points which are useful when establishing co-production projects.

The resource crisis in healthcare can be alleviated by engaging external stakeholders and resources in healthcare delivery. The authors use value and open innovation concepts to understand what motivates the stakeholders to join the healthcare innovation ecosystem and what value such an ecosystem brings to healthcare.

A systematic literature review following the PRISMA framework method was applied to reach the research objective. Out of a total of 509 identified articles published till 2021, 25 were selected as relevant for this review.

Six categories of actors were identified, including innovation intermediaries, which were so far neglected in the healthcare innovation literature. Furthermore, patients, healthcare providers, innovation suppliers, investors and influencers were described. The authors also distinguished internal and external stakeholders. The authors show why and how open innovation projects contribute to involving external stakeholders and resources in healthcare delivery by contributing to patient autonomy, relationship building, knowledge transfer, improving collaborative mindset and culture, advancing know-how and bringing additional finances.

This article is the first one to systematically describe the value of open innovation in healthcare. The authors challenge the positivist approach in value presented by value-based healthcare. The authors show how openness contributes to addressing the resource crisis by involving new stakeholders and resources in the care delivery process.

It is over 20 years since the publication of the Wanless Report, “Securing our Future Health: Taking a Long-Term View”. The Wanless Report argued that the National Health Service (NHS) would survive in its current form only if the population became “fully engaged” with it.

In this discussion paper, the authors explored what “fully engaged” meant to Wanless, what it might mean now (allowing for the impact of the anti-vaxxer movement) and what policymakers could do to enhance public engagement.

Although the Wanless Report neatly fitted into other long-term thinking about the NHS, it was unique in that it built economic models to predict the costs and impact of different patterns of NHS performance. Wanless predicted that people’s poor levels of health would put considerable pressure on the NHS. This pressure could swamp efforts to meet healthcare targets and improve health outcomes, despite its sizeable investment of money. Wanless set out three possible scenarios for public engagement with the NHS: solid progress, slow uptake and fully engaged.

The authors pose questions for policymakers and practitioners. Would a reboot of the Wanless approach be worth the effort for policymakers? If yes, how would it differ from the original? The NHS faces the whole of society; could it be the vehicle for engaging the anti-vaxxer public with the truthfulness of medical science, and will it be this, that is, Wanless' enduring legacy?

The exploration of the Wanless Report is complicated (at least for the time being) by the rise of the anti-vaxxer movement’s resistance to health promotion and mistrust of part of the NHS.

This study aims to investigate the prevalence and characteristics of dysphagia among adults with intellectual disabilities (ID) referred to speech and language therapy for swallow assessment, providing information on the demographic characteristics, referral trends, co-occurring health conditions and reasons for referrals highlighting the complex health-care needs of this population.

This study used a standardised patient data extraction method over a six-month period involving 74 adults with ID referred to speech and language therapy for swallow assessment.

This study revealed a high prevalence of dysphagia among adults with ID referred to speech and language therapy for swallow assessment. Increasing age and severity of ID were associated with an increased likelihood of swallowing difficulties. Co-occurring health conditions such as mobility difficulties, epilepsy and gastrointestinal conditions were prevalent, suggesting that adults with ID and swallowing difficulties are often living with complex health conditions. Choking incidents and hospital admissions were primary reasons for referral.

This study stresses the pressing need for strategies to mitigate risks associated with choking incidents and hospital admission among this vulnerable population. Possible limitations include a reliance on referral and the focus being on a single service over a short period which may limit generalisation to the wider ID population.

This study emphasises the need to understand each person’s unique profile of health needs and the value of a specialised speech and language therapy service.

The importance of increasing awareness among caregivers and medical experts is highlighted.

The findings underscore the importance of tailored assessment, caregiver involvement and heightened interdisciplinary awareness to effectively manage dysphagia in individuals with ID.

There is evidence that quality improvement projects developed with the participation of patients and family members are more likely to result in a sustainable change. To identify the intervening factors is an important step in promoting and supporting patient and family members’ engagement.

A survey was carried out with 90 hospitals. A total of 35 intervening factors were evaluated by the healthcare professionals from the quality area using a Likert scale. Factor analysis was applied to identify the relationship among the factors and cluster analysis and the standardized scores for each new latent variable were obtained to observe the association between them and hospitals profile. Cluster analysis allowed to group the hospitals with similar responses and to analyze whether there was any association with the profile of the institutions.

A total of ten intervening factors are identified: two in the financial dimension, five in the structural and three in the personal and cultural. The standardized scores of latent variables suggest that the financial factors could be affected by the hospital capacity. The structural factors could be impacted by the accreditation status, location (region) and administrative control (ownership). And the personal and cultural factors could be by the location and dominant organizational culture. All of factors are influenced by the performed quality management activities. The cluster analysis allowed the identification of three groups in the financial dimension, and four in the other two dimensions. Except for the accreditation status in the personal and cultural dimension, no evidence of association between the groups and the variables raised to characterize the profile of the hospitals was found.

The study contributed to identify the relationship among the intervening factors turning possible to simplify and reduce them more comprehensively than those originally identified in the literature and at the same time maintaining the representativeness of the original variables.