Trust in embedding co-design for innovation and change: considering the role of senior leaders and managers.

PURPOSE: In this viewpoint article, the authors recognize the increased focus in health systems on co-design for innovation and change. This article explores the role of leaders and mangers in developing and enhancing a culture of trust in their organizations to enable co-design, with the potential to drive innovation and change in healthcare. DESIGN/METHODOLOGY/APPROACH: Using social science analyses, the authors argue that current co-design literature has limited focus on interactions between senior leaders and managers, and healthcare staff and service users in supporting co-designed innovation and change. The authors draw on social and health science studies of trust to highlight how the value-based co-design process needs to be supported and enhanced. We outline what co-design innovation and change involve in a health system, conceptualize trust and reflect on its importance within the health system, and finally note the role of senior leaders and managers in supporting trust and responsiveness for co-designed innovation and change. FINDINGS: Healthcare needs leaders and managers to embrace co-design that drives innovation now and in the future through people - leading to better healthcare for society at large. As authors we argue that it is now the time to shift our focus on the role of senior managers and leaders to embed co-design into health and social care structures, through creating and nurturing a culture of trust. ORIGINALITY/VALUE: Building public trust in the health system and interpersonal trust within the health system is an ongoing process that relies upon personal behavior of managers and senior leaders, organizational practices within the system, as well as political processes that underpin these practices. By implementing managerial, leadership and individual practices on all levels, senior managers and leaders provide a mechanism to increase both trust and responsiveness for co-design that supports innovation and change in the health system.

Exploring the needs and experiences of contact tracing staff during the COVID-19 pandemic in Ireland.

BACKGROUND: Contact tracing is a key component in controlling the spread of COVID-19, however little research has focused on learning from the experiences of contact tracing staff. Harnessing learning from those in this role can provide valuable insights into the process of contact tracing and how best to support staff in this crucial role. METHODS: Thematic analysis was used to analyse 47 semi-structured interviews conducted with contact tracing staff via telephone or Zoom at three time points in 2021: March, May and September-October. RESULTS: Six themes related to the contact tracing role were identified, including training, workforce culture, systems issues, motivation and support. While initially nervous in the role, participants were motivated to contribute to the pandemic response and believed the role provided them with valuable transferable skills. Participants described the training as having improved over time while desiring more proactive training. Sources of frustration included a perceived lack of opportunity for feedback and involvement in process changes, feelings of low autonomy, and a perception of high staff turnover. Participants expressed a need for improved communication of formal emotional supports. Increased managerial support and provision of opportunities for career advancement may contribute to increased motivation among staff. CONCLUSIONS: These findings identify the experiences of contact tracing staff working during the COVID-19 pandemic, and have important implications for the improvement of the contact tracing system. Recommendations based on learning from participants offer suggestions as to how best to support the needs of contact tracing staff during a pandemic response.

A realist process evaluation of an intervention to promote competencies in interprofessional collaboration among interdisciplinary integrated care teams for older people: Study protocol.

Background: International policy is increasingly committed to placing interdisciplinary team-working at the centre of health and social care integration across the lifespan. The National Clinical Programme for Older People in Ireland has a critical role in the design and implementation of the National Older Person's Service Model, which aims to shift the delivery of care away from acute hospitals towards community-based care. Interdisciplinary Community Specialist Teams for older persons (CST-OPs) play an important role in this service model. To support the development of competencies for interprofessional collaboration and an interdisciplinary team-based approach to care integration, a culture shift will be required within care delivery. Design:This study builds upon a collaborative partnership project which co-designed a framework describing core competencies for interprofessional collaboration in CST-OPs. A realist-informed process evaluation of the framework will be undertaken as the competencies described in the framework are being fostered in newly developed CST-OPs under the national scale-up of the service model. Realist evaluation approaches reveal what worked, why it worked (or did not), for whom and under what circumstances. Three iterative and integrated work packages are proposed which combine multiple methods of data collection, analysis and synthesis. Prospective data collection will be undertaken within four CST-OPs, including qualitative exploration of the care experiences of older people and family carers. Discussion: The realist explanatory theory will provide an understanding of how interprofessional collaboration can be fostered and sustained in various contexts of care integration for older people. It will underpin curriculum development for team-based education and training of health and social care professionals, a key priority area in the national Irish health strategy. It will provide healthcare leaders with knowledge of the resources and supports required to harness the benefits of interprofessional collaboration and to realise the goals of integrated care for older people.

What constitutes brilliant aged care? A qualitative study of practices that exceed expectation.

AIM: This study aimed to explore what constitutes brilliant aged care. BACKGROUND: Although many aged care services do not offer the care that older people and carers need and want, some perform better. Rather than focus on problems with aged care, this study examined brilliant aged care-practices that exceeded expectation. DESIGN: The methodology for this study was informed by grounded theory, underpinned by constructionism to socially construct meaning. METHODS: This study invited nominations for a Brilliant Award via a survey, and interviews with the nominees via web conference. After receiving survey responses from 10 nominators, interviews were conducted with 12 nominees. Data were analysed using reflexive thematic analysis and documented according to COREQ guidelines to optimise rigour and transparency. RESULTS: According to participants, brilliant aged care involved being relationally attuned to older people, a deep understanding of the older person, recognition of aged care as more than a job, innovative practices and permission to reprioritise. CONCLUSIONS: This study suggests that, in aged care, brilliance happens. It emphasises the importance of meaningful connections and relationships in aged care, where thoughtful acts acknowledge an older person's value and humanity as well as creativity and innovation. RELEVANCE TO CLINICAL PRACTICE: For those who manage and deliver aged care, the findings suggest that small practice changes can make a positive difference to older people. Brilliant aged care can involve acts of empathy; enthusiasm for aged care; innovative practices, even those that are small scale; and reprioritising workplace tasks to spend time with older people. For policymakers, this study highlights the need to recognise and raise the profile of the pockets of brilliance within the aged care sector. This might be achieved via awards and other initiatives that serve to celebrate and learn from brilliance in its myriad forms. PATIENT OR PUBLIC CONTRIBUTION: The nominees, who included carers, were invited to participate in workshops with other carers and older people to co-design a model of brilliant aged care, during which workshop participants discussed and critiqued the findings constructed from the data.

An examination of relational dynamics of power in the context of supported (assisted) decision-making with older people and those with disabilities in an acute healthcare setting.

INTRODUCTION: Supported (assisted) healthcare decision-making (ADM) focuses attention on how people with disabilities, including cognitive impairments, can be best supported to make decisions about their health and social care on an equitable basis with others. Meaningful implementation of legal frameworks for ADM challenges long-held presumptions about who has access to valued decision-making resources, influence and power within a particular socio-cultural setting. This study aims to explore the relational power dynamics around ADM with older people in acute care settings. METHODS: This study adopts a critical hermeneutic approach to qualitatively explore the lived experience of ADM from the perspectives of Health and Social Care Professionals (N = 26). This is supported by an exploration of the experiences of older people (N = 4), older people with a diagnosis of dementia (N = 4) and family carers (N = 5). RESULTS: We present three themes of data analysis that represent three spaces where the relational aspects of power in ADM are manifested. The first space, centralising decision-making power within multidisciplinary teams identified the privileging of physicians in traditional hierarchical leadership models that may lead to the implicit exclusion of family carers and some Health and Social Care Professionals in the ADM process. Privileging cognitive and communication competence identified a tendency to attribute decision-making autonomy to those with cognitive and communication competency. The final space, balancing the duty of care and individual autonomy, recognises acute care settings as typically risk-averse cultures that limit autonomy for decisions that carry risk, especially for those with cognitive impairment. CONCLUSION: Findings indicate the need to address cultural sources of power operating through social norms premised on ageist and ableist ideologies. It is necessary to challenge institutional barriers to meaningful ADM including positional power that is associated with hierarchies of influence and protectionism. Finally, meaningful ADM requires resistance to the disempowerment created by structural, economic and social circumstances which limit choices for decision-making. PATIENT OR PUBLIC CONTRIBUTION: A public and patient involvement panel of older people were consulted in the development of the grant application (HRB: APA-2016-1878). Representatives from Alzheimer's Society Ireland and Family Carers Ireland were steering committee members guiding design and strategy.

Developing competence in interprofessional collaboration within integrated care teams for older people in the Republic of Ireland: A starter kit.

Current evidence offers little guidance as to how interprofessional collaboration can be fostered within the context of integrated care and older people. This research describes the co-design of core competencies for interprofessional collaboration within integrated care teams for older people and the development of practical guidance to support teams in building proficiency. Using a co-design approach, we conducted three studies (co-design workshops, qualitative interviews, and an online validation forum), the combined output of which is a Core Competency Framework, that includes three domains describing six competencies for proficiency in interprofessional collaboration within integrated care of older people. Domain one, Knowledge of the Team, includes the competencies; understanding roles, and making referrals. Domain two, Communication, includes the competencies; sharing information and communicating effectively and Domain three, Shared Decision-making, includes the final two competencies; supporting decision making with older people and collective clinical decision-making. In presenting a formal understanding of the competencies for interprofessional collaboration in the integrated care of older people and practical guidance for developing proficiency, this framework provides direction for future health service workforce development.

Lesbian, gay, bisexual, transgender and gender diverse and queer (LGBTQ) community members' perspectives on palliative care in New South Wales (NSW), Australia.

Lesbian, gay, bisexual, transgender and gender diverse people, and queer people (LGBTQ people) are at increased risk of some chronic diseases and cancers. NSW Health palliative care health policy prioritises equitable access to quality care, however, little is known about community members' perspectives on palliative care. This study aimed to understand LGBTQ community views and preferences in palliative care in NSW. A community survey and follow-up interviews with LGBTQ people in NSW were conducted in mid-2020. A total of 419 people responded to the survey, with 222 completing it. Six semi-structured phone interviews were conducted with participants who volunteered for follow-up. The sample included LGBTQ people with varied levels of experience in palliative care. Thematic analysis was conducted on survey and interview data, to identify perceived barriers and enablers, and situate these factors in the socio-ecological model of health. Some perceived barriers from community members related to considering whether to be 'out' (i.e., making one's sexual orientation and gender known to services), knowledge and attitudes of staff, concern about potential substandard care or mistreatment (particularly for transgender health), decision making, biological family as a source of tension, and loneliness and isolation. Perceived enablers related to developing and distributing inclusive palliative care information, engaging with community(ies), fostering inclusive and non-discriminatory service delivery, ensuring respectful approaches to person-centred care, and staff training on and awareness building of LGBTQ needs and issues. Most of the participants who had experienced palliative care recounted positive interactions, however, we identified that LGBTQ people require better access to knowledgeable and supportive services. Palliative care information should be inclusive and services respectful and welcoming. Particular consideration should be given to how services respond to and engage with people from diverse population groups. These insights can support ongoing policy and service development activities to further enhance palliative care.

Enabling the space and conditions for co-leadership in co-design: an evaluation of co-facilitator training for culturally and linguistically diverse consumers.

Objectives and importance of study: We report the evaluative findings from the first stage of a project designed to co-produce strategies which improve the safety of culturally and linguistically diverse (CALD) patients in cancer care. Co-leadership is developed via training and supporting consumers, multilingual fieldworkers and researchers to co-facilitate co-design. Our aim was to evaluate the training undertaken with CALD co-facilitators to prepare for co-leadership of the co-design process within the CanEngage project. Study type and methods: A qualitative evaluation was conducted, consisting of semi-structured interviews with co-facilitators. Data were thematically analysed. Results: Analysis of interviews with 12 co-facilitators generated three themes: creating the conditions for co-leadership; developing the space for connections during training; and readiness for co-design. Conclusions: Providing opportunities for informal, social interactions during the training aided relationship-building among co-facilitators. The co-creation of terms of reference for the project encouraged a process of shared ownership and generated a path forward from the training to the upcoming co-design activities. We found that the recruitment process offered an initial forum to discuss the alignment of the motivations and expectations of those interested in becoming involved with the aims of the project and goals of the co-design.

Involving older people in co-designing an intervention to reverse frailty and build resilience.

BACKGROUND: An essential consideration in health research is to conduct research with members of the public rather than for them. Public and patient involvement (PPI) of older people in research can improve enrolment, relevance and impact. However, few studies with PPI in frailty research have been identified. PPI has fallen during the Covid-19 pandemic. OBJECTIVE: We aimed to involve older people in co-designing a randomised control trial (RCT) intervention to reverse frailty and build resilience. We also wished to encourage wider use of PPI with older people by outlining our approach. METHODS: Involvement of older people was undertaken in three stages. Eighteen over 65-year-olds helped co-design an exercise intervention in two group discussions using the Socratic education method. Ninety-four contributed intervention feedback in one-on-one telephone interviews over nine months. Ten contributors helped optimise the intervention in three online workshops. Multidisciplinary team input and systematic review supported co-design. RESULTS: Eleven home-based resistance exercises were co-designed by group discussion contributors (mean age 75, 61% female). Frailty intervention format, gender balance and GP follow-up were shaped in telephone interviews (mean age 77, 63% female). Dietary guidance and patient communication were co-designed in workshops (mean age 71, 60% females). Technology proved no barrier to PPI. The co-designed frailty intervention is being evaluated in a definitive RCT. CONCLUSIONS: We enabled meaningful the involvement of 112 older people in the co-design of an intervention to reverse frailty and build resilience in diverse ways. Inclusive involvement can be achieved during a pandemic. Feedback enhanced intervention feasibility for real-world primary-care.

Our research paper describes how we involved 112 older adults in the co-design of an intervention aiming to reverse frailty and build resilience. Involving participants in research can improve its feasibility and impact. However, there have been few studies involving older people in frailty research and involvement has fallen further during the Covid-19 pandemic. Involvement of older people was undertaken in three stages. Eighteen over 65-year-olds helped co-design an exercise intervention in two group discussions. Ninety-four older adults contributed intervention feedback in one-on-one telephone interviews over nine months. Ten contributors helped optimise the intervention in three online workshops. The co-designed intervention involved resistance exercises and dietary guidance and will be tested in a full randomised control trial. We enabled the meaningful involvement of 112 older people in our research in diverse ways. Inclusive involvement can be achieved during a pandemic.

What does co-design mean for Australia’s diverse clinical workforce?

Co-design is increasingly employed as a user-centric method to create healthcare change. In healthcare co-design, small groups of consumers and healthcare workers come together to identify processes, policies or service elements that require improvement and to design solutions. Multiple frameworks have emerged to guide the health work force and health researchers how to conduct co-design and support consumer members to engage in the process effectively. Frameworks have sought to address the propensity for co-design to exacerbate inequities for consumers with complex care needs or in under-served populations. Advice regarding the need to consider and ensure co-design is accessible to an increasingly diverse health workforce is, however, lacking. Drawing on our experience co-designing with diverse consumer and healthcare-worker populations, we discuss the implications of co-design for the healthcare workforce.

What Are the Psycho-Social and Information Needs of Adolescents and Young Adults Cancer Care Consumers with Intellectual Disability? A Systematic Review of Evidence with Recommendations for Future Research and Practice.

People with intellectual disability have unmet health needs and experience health inequalities. There is limited literature regarding cancer care for children, adolescents, and young adults (AYA) with intellectual disability despite rising cancer incidence rates in this population. This systematic review aimed to identify the psycho-social and information support needs of AYA cancer care consumers with intellectual disability to generate recommendations for future research and cancer care service delivery enhancement. We searched eight databases yielding 798 articles. Following abstract and full-text review, we identified 12 articles meeting our inclusion criteria. Our three themes related to communication and accessible information; supports and system navigation, cancer service provider training, and reasonable adjustments. There was a lack of user-friendly, accessible information about cancer and screening programs available. Both paid and family carers are critical in accessing cancer supports, services, and screening programs for AYA with intellectual disability. Ongoing training should be provided to healthcare professionals regarding the importance of care screening for AYAs with intellectual disability. This review recommends that AYA with intellectual disability and their family carers be involved in developing tailored cancer services. This should focus on enabling inclusive screening programs, accessible consent, and challenging the enduring paternalism of support services via training and appropriate communication tools.

Contact tracing during the COVID-19 outbreak: a protocol for enabling rapid learning from experiences and exploring the psychological impact on contact tracers.

Background: Given the unprecedented nature of the COVID-19 pandemic, the Irish health system required the redeployment of public sector staff and the recruitment of dedicated contact tracing staff in the effort to contain the spread of the virus. Contact tracing is crucial for effective disease control and is normally carried out by public health teams. Contact tracing staff are provided with rapid intensive training but are operating in a dynamic environment where processes and advice are adapting continuously. Real-time data is essential to inform strategy, coordinate interconnected processes, and respond to needs . Given that many contact tracers have been newly recruited or redeployed, they may not have significant experience in healthcare and may experience difficulties in managing the anxieties and emotional distress of the public. Aim: (i) identify emerging needs and issues and feed this information back to the Health Service Executive for updates to the COVID-19 Contact Management Programme (CMP); (ii) understand the psychological impact on contact tracers and inform the development of appropriate supports. Methods: We will use a mixed-methods approach. A brief online survey will be administered at up to three time points during 2021 to measure emotional exhaustion, anxiety, general health, and stress of contact tracing staff, identify tracing systems or processes issues, as well as issues of concern and confusion among the public. Interviews will also be conducted with a subset of participants to achieve a more in-depth understanding of these experiences. Observations may be conducted in contact tracing centres to document processes, practices, and explore any local contextual issues. Impact: Regular briefs arising from this research with data, analysis, and recommendations will aim to support the work of the CMP to identify problems and implement solutions. We will deliver regular feedback on systems issues; challenges; and the psychological well-being of contact tracing staff.

Mitigating unintended consequences of co-design in health care.

BACKGROUND: Co-design and associated terms are increasingly being used to facilitate values-based approaches to health-care improvement. It is messy and complex, involving diverse actors. METHODS: We explore the notion that initiatives have outcomes other than initially planned is neither new nor novel but is overlooked when thinking about co-design. We explore some of the unintended consequences and outline some optimal conditions that can mitigate challenges. DISCUSSION: Although co-design approaches are being applied in health care, questions remain regarding its ability to produce gains in health outcomes. Little is known about determining whether co-design is the most suitable approach to achieve the given project goals, the levels of involvement required to realize the benefits of co-design or the potential unintended consequences. There is a risk of further marginalizing or adding burden to under-represented populations and/or over-researched populations. CONCLUSION: Undertaking a co-design approach without the optimal conditions for inclusive involvement by all may not result in an equal partnership or improve health or care quality outcomes. Co-design requires on-going reflective discussions and deliberative thinking to remove any power imbalances. However, without adequate resources, a focus on implementation and support from senior leaders, it is a tough ask to achieve. PATIENT OR PUBLIC CONTRIBUTION: This viewpoint article was written by two academics who have undertaken a significant amount of PPI and co-design work with members of the public and patient's right across the health system. Our work guided the focus of this viewpoint as we reflected on our experiences.

Assisted decision-making and interprofessional collaboration in the care of older people: a qualitative study exploring perceptions of barriers and facilitators in the acute hospital setting.

In recent years, there has been a move toward a more human rights-based approach to the issue of supported and assisted decision-making (ADM) with legislative changes strengthening the formal right for older people to participate in care planning and decision-making. Ireland's Assisted Decision-Making (Capacity) Act, 2015 breaks from traditional views of capacity to consider the uniqueness of each decision in relation to topic, time and place for those with impaired or fluctuating capacity. This study set out to explore experiences of assisted decision making (ADM) in acute care hospitals in Ireland and to identify the barriers and enablers to ADM for older people and people with dementia from the perspective of different Health and Social Care Professionals (HSCPs) involved in their care. We carried out 26 semi-structured audio-recorded interviews with a convenience sample of HSCPs working in two acute hospitals and subsequently confirmed the results. HSCPs identified several barriers to, and enablers of, ADM in acute hospitals that were categorized into three key themes: Building meaningful engagement with older people and their family carers; barriers and enablers associated with interprofessional collaboration and barriers and enablers associated with the environment. Our findings suggest that despite concrete policy and legislative underpinnings to ADM, this was not always evident in practice and suggests the need for specialized education and training on ADM in practice settings.

New Ways of Working? A Rapid Exploration of Emerging Evidence Regarding the Care of Older People during COVID19.

Health and social care staff have had to quickly adapt, respond and improve teamwork, as a response to the COVID-19 pandemic. Our objective was to rapidly summarize the emerging evidence of new ways of working in the care of older people during this period. We conducted an exploration of the emerging evidence within the timeframe of 1 March 2020 to 11 May 2020. To capture a broad perspective, we undertook thematic analysis of Twitter data which was extracted through a broad search for new ways of working in health and social care. For a more in-depth focus on the health and social care of older people, we undertook a systematic scoping of newspapers using the Nexis UK database. We undertook a validation workshop with members of the interprofessional working group of the Irish National Integrated Care Programme for Older People, and with researchers. A total of 317 tweets were extracted related to six new ways of working. There was evidence of using telehealth to provide ongoing care to patients; interprofessional work; team meetings using online platforms; trust and collaboration within teams; as well as teams feeling empowered to change at a local level. 34 newspaper articles were extracted related to new ways of working in the care of older people, originating in England (n = 17), Wales (n = 6), Scotland (n = 6), Ireland (n = 4) and Germany (n = 1). Four main themes were captured that focused on role expansion, innovations in communication, environmental restructuring and enablement. The results of this exploration of emerging evidence show that health and social care teams can transform very rapidly. Much of the change was based on goodwill as a response to the pandemic. Further analysis of empirical evidence of changing practices should include the perspectives of older people and should capture the resources needed to sustain innovations, as well as evaluate gaps in service provision.

Embedding collective leadership to foster collaborative inter-professional working in the care of older people (ECLECTIC): Study protocol.

Background: The National Integrated Care Programme for Older People (NICPOP), formerly NCPOP aims to support older people to live well in their homes by developing primary and secondary care services for older people, especially those with complex needs. The programme develops integrated intermediate care which traverses both hospital and community settings through multidisciplinary and interagency teams. This team-based approach to the integration of health services is a novel innovation in Irish health service delivery and will require, over time, a shift in cultures of care to allow for the development of competencies for inter-professional collaboration across the care continuum. The ECLECTIC project will develop an implementation framework for achieving, maintaining and monitoring competencies for interprofessional collaboration among multi-disciplinary teams charged with delivering care for older people across the continuum from acute to community settings. Design: The ECLECTIC research design has been developed in collaboration with the NICPOP. In phase one of the project, a co-design team will collaborate to define and shape competencies for interprofessional collaboration. Phase two will involve the delivery of a collective leadership intervention over a 10-month period with multidisciplinary professionals working with older people across two geographical regions (Mullingar/Midlands and Beaumont/Dublin North). Each group will comprise of members of two multidisciplinary teams charged with coordinating and delivering care to older people across the continuum of acute to community care. Observations of collaborative inter-professional working will take place before, during, and after intervention. In phase three of the study, analysis of the interview and observation data will be presented to the co-design team in order to develop an implementation framework for future teams. Discussion: The co-design process will develop core competencies and performance indicators for collaborative interprofessional working. The resulting implementation framework will be implemented nationally as part of the NICPOP.

Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects.

BACKGROUND: The University College Dublin (UCD) Public and Patient Invovlement (PPI) ignite program is focused on embedding PPI in health and social care related research, education and training, professional practice and administration. During a PPI knowledge sharing event challenges were noted during the pre-commencement stage of research projects. This stage includes the time before a research projects/partnership starts or when funding is being applied for. As a response, we agreed there was a need to spend time developing a values-based approach to be used from the pre-commencement of PPI projects and partnerships. Values are deeply held ideals that people consider to be important. They are vital in shaping our attitudes and motivating our choices and behaviours. METHODS: Using independent facilitators, we invited a diverse group of participants to a full-day workshop in February. During the workshop, the concept of a values statement and values-based approaches was introduced. The group via a majority consensus, agreed on a core set of values and a shared understanding of them. After the workshop, a draft was shared with participants for further comment and final agreement. RESULTS: The workshop had 22 people representing experts by experience, PPI charity partners, funders, academics and national PPI Ignite partners. The group via consensus identified four values of respect, openness, reciprocity and flexibility for the pre-commencement stage. A frequently reported experience of PPI partners was that some felt that the pre-commencement activities appeared at times like a performance; an act that had to be completed in order to move to the next stage rather than a genuine interest in a mutually beneficial partnership. Being open and transparent with all invovled that the funding application may not be successful was stressed. Another important feature related to 'openness' was the 'spaces' and 'places' in which meetings between partners could occur in an accessible and equitable way. The issue of 'space' is particularly critical for the involvement of seldom heard groups. The benefits of the research are often clear for academics, but for PPI partners, these are often less certain. To achieve reciprocity, academic and PPI partners need to engage in a timely, repeated and transparent dialogue to achieve beneficial outcomes for all stakeholders. Being open to new inputs and differing modes of knowledge and ideas was also stressed. For some, this will require a change in attitudes and behaviours and should result in more collective decision making. Several areas were identified using the four values. CONCLUSIONS: This work via majority consensus identified four values of respect, openness, reciprocity, and flexibility for the pre-commencement stage. These values should be used to support inclusive, effective and collective PPI across all stages of involvement. We hope this work will stimulate further action in this area. In particular, we would welcome the evaluation of these values involving diverse PPI groups.

COVID-19: Public and patient involvement, now more than ever.

The research community is responding with speed to the COVID-19 pandemic, with rapid response mechanisms to fund research, shortened application turnaround times, and expedited research ethics processes. Public and patient involvement (PPI) is under pressure in this rapid response research, where it is easy for researchers and funders to dismiss PPI as non-essential, an added extra, a "nice to have".  In this open letter, we, researchers and PPI contributors, argue that PPI is important, now more than ever. The pandemic is impacting everyone in society, with normal rules of engagement discarded. The solution to overcoming this virus will come from many different sources and many changes will emerge to healthcare delivery and to how we live our lives. It is essential that the research to find solutions is shaped by all who will be impacted: the public and the patient must be central contributors and their voice must be hear.