Stakeholder participation in the COVID-19 pandemic preparedness and response plans: A synthesis of findings from 70 countries.

Stakeholder participation is a key component of a fair and equitable priority-setting in health. The COVID-19 pandemic highlighted the need for fair and equitable priority setting, and hence, stakeholder participation. To date, there is limited literature on stakeholder participation in the development of the pandemic plans (including the priority setting plans) that were rapidly developed during the pandemic. Drawing on a global study of national COVID-19 preparedness and response plans, we present a secondary analysis of COVID-19 national plans from 70 countries from the six WHO regions, focusing on stakeholder participation. We found that most plans were prepared by the Ministry of Health and acknowledged WHO guidance, however less than half mentioned that additional stakeholders were involved. Few plans described a strategy for stakeholder participation and/or accounted for public participation in the plan preparation. However, diverse stakeholders (including multiple governmental, non-governmental, and international organizations) were proposed to participate in the implementation of the plans. Overall, there was a lack of transparency about who participated in decision-making and limited evidence of meaningful participation of the community, including marginalized groups. The critical relevance of stakeholder participation in priority setting requires that governments develop strategies for meaningful participation of diverse stakeholders during pandemics such as COVID-19, and in routine healthcare priority setting.

How did European countries set health priorities in response to the COVID-19 threat? A comparative document analysis of 24 pandemic preparedness plans across the EURO region.

The COVID-19 pandemic has forced governments across the world to consider how to prioritise the allocation of scarce resources. There are many tools and frameworks that have been designed to assist with the challenges of priority setting in health care. The purpose of this study was to examine the extent to which formal priority setting was evident in the pandemic plans produced by countries in the World Health Organisation's EURO region, during the first wave of the COVID-19 pandemic. This compliments analysis of similar plans produced in other regions of the world. Twenty four pandemic preparedness plans were obtained that had been published between March and September 2020. For data extraction, we applied a framework for identifying and assessing the elements of good priority setting to each plan, before conducting comparative analysis across the sample. Our findings suggest that while some pre-requisites for effective priority setting were present in many cases - including political commitment and a recognition of the need for allocation decisions - many other hallmarks were less evident, such as explicit ethical criteria, decision making frameworks, and engagement processes. This study provides a unique insight into the role of priority setting in the European response to the onset of the COVID-19 pandemic.

A global comparative analysis of the criteria and equity considerations included in eighty-six national COVID-19 plans.

Systematic priority setting (PS), based on explicit criteria, is thought to improve the quality and consistency of the PS decisions. Among the PS criteria, there is increased focus on the importance of equity considerations and vulnerable populations. This paper discusses the PS criteria that were included in the national COVID-19 pandemic plans, with specific focus on equity and on the vulnerable populations considered. Secondary synthesis of data, from a global comparative study that examined the degree to which the COVID-19 plans included PS, was conducted. Only 32 % of the plans identified explicit criteria. Severity of the disease and/or disease burden were the commonly mentioned criteria. With regards to equity considerations and prioritizing vulnerable populations, 22 countries identified people with co-morbidities others mentioned children, women etc. Low social-economic status and internally displaced population were not identified in any of the reviewed national plans. The limited inclusion of explicit criteria and equity considerations highlight a need for policy makers, in all contexts, to consider instituting and equipping PS institutions who can engage diverse stakeholders in identifying the relevant PS criteria during the post pandemic period. While vulnerability will vary with the type of health emergency- awareness of this and having mechanisms for identifying and prioritizing the most vulnerable will support equitable pandemic responses.

What works in engaging communities? Prioritising nutrition interventions in Burkina Faso, Ghana and South Africa.

BACKGROUND: "Choosing All Together" (CHAT), is a community engagement tool designed to give the public a voice in how best to allocate limited resources to improve population health. This process evaluation explored the mechanisms through which CHAT generates community engagement. METHOD: The CHAT tool was adapted and implemented for use in two rural communities (Nanoro, Burkina Faso, and Navrongo, Ghana) and one urban township (Soweto, South Africa) to prioritize maternal and child nutrition interventions. Community discussions were audio-recorded, transcribed, and translated into English. Twenty-two transcripts, including six each from Navrongo and Soweto and 10 from Nanoro, were analysed thematically to generate data driven codes and themes to explain mechanisms underlying the CHAT process. The process evaluation was based on the UK MRC process evaluation guidance. RESULTS: Seven themes describing the functions and outcomes of CHAT were identified. Themes described participants deliberating trade-offs, working together, agreeing on priorities, having a shared vision, and increasing their knowledge, also the skills of the facilitator, and a process of power sharing between participants and researchers. Participants came to an agreement of priorities when they had a shared vision. Trained facilitators are important to facilitate meaningful discussion between participants and those with lower levels of literacy to participate fully. CONCLUSION: CHAT has been shown to be adaptable and useful in prioritising maternal and child nutrition interventions in communities in Burkina Faso, Ghana, and South Africa. Conducting CHAT in communities over a longer period and involving policy-makers would increase trust, mutual respect and develop partnerships.

Moving towards social inclusion: Engaging rural voices in priority setting for health.

BACKGROUND: Achieving universal health coverage (UHC) in the context of limited resources will require prioritising the most vulnerable and ensuring health policies and services are responsive to their needs. One way of addressing this is through the engagement of marginalised voices in the priority setting process. Public engagement approaches that enable group level deliberation as well as individual level preference capturing might be valuable in this regard, but there are limited examples of their practical application, and gaps in understanding their outcomes, especially with rural populations. OBJECTIVE: To address this gap, we implemented a modified priority setting tool (Choosing All Together-CHAT) that enables individuals and groups to make trade-offs to demonstrate the type of health services packages that may be acceptable to a rural population. The paper presents the findings from the individual choices as compared to the group choices, as well as the differences among the individual choices using this tool. METHODS: Participants worked in groups and as individuals to allocate stickers representing the available budget to different health topics and interventions using the CHAT tool. The allocations were recorded at each stage of the study. We calculated the median and interquartile range across study participants for the topic totals. To examine differences in individual choices, we performed Wilcoxon rank sum tests. RESULTS: The results show that individual interests were mostly aligned with societal ones, and there were no statistically significant differences between the individual and group choices. However, there were some statistically significant differences between individual priorities based on demographic characteristics like age. DISCUSSION: The study demonstrates that giving individuals greater control and agency in designing health services packages can increase their participation in the priority setting process, align individual and community priorities, and potentially enhance the legitimacy and acceptability of priority setting. Methods that enable group level deliberation and individual level priority setting may be necessary to reconcile plurality. The paper also highlights the importance of capturing the details of public engagement processes and transparently reporting on these details to ensure valuable outcomes. PUBLIC CONTRIBUTION: The facilitator of the CHAT groups was a member from the community and underwent training from the research team. The fieldworkers were also from the community and were trained and paid to capture the data. The participants were all members of the rural community- the study represents their priorities.

Communication of patients' and family members' ethical concerns to their healthcare providers.

BACKGROUND: Little is known about communication between patients, families, and healthcare providers regarding ethical concerns that patients and families experience in the course of illness and medical care. To address this gap in the literature, we surveyed patients and family members to learn about their ethical concerns and the extent to which they discussed them with their healthcare providers. METHODS: We surveyed adult, English-speaking patients and family members receiving inpatient care in five hospitals in the Washington DC-Baltimore metropolitan area from July 2017 to March 2020. Descriptive statistics were used to determine the frequency, comfortableness, and helpfulness of discussions regarding ethical concerns experienced when sick or receiving medical care. Univariable and multivariable stepwise logistic regression models were used to identify associations between healthcare provider and respondent characteristics and attitudes and (1) the likelihood of speaking to a healthcare provider about their ethical concern and (2) their level of comfort during these discussions. RESULTS: Of 468 respondents who experienced ethical issues, 299 (64%) reported discussing the situation with a member of their healthcare team; 74% (197/265) of respondents who had such a discussion found the discussion comfortable, and 77% (176/230) of respondents found the discussion helpful. To make discussions more comfortable and helpful, respondents proposed suggestions in open-ended responses involving (1) content and quality of communication; (2) positive healthcare provider qualities such as empathy, open-mindedness, knowledge, honesty, and trustworthiness; and (3) other contextual factors including having adequate time and available resources. CONCLUSIONS: Patients and families often have ethical concerns that they discuss with clinicians, and they want clinicians to be routinely receptive and attentive to such discussions.

Ethical Concerns of Patients and Family Members Arising During Illness or Medical Care.

Patients and family members (N = 671) were surveyed in five Mid-Atlantic U.S. hospitals to ascertain the number and kinds of ethical concerns they are presently experiencing or have previously experienced while being sick or receiving medical care. Seventy percent of participants had at least one (range 0-14) type of ethical concern or question. The most commonly experienced concerns pertained to being unsure how to plan ahead or complete an advance directive (29.4%), being unsure whether someone in the family was able to make their own decisions (29.2%), deciding about limiting life-sustaining treatments (28.6%), wondering about disclosing personal medical information to others in the family (26.4%) and not being sure whether to undergo treatment because of cost (26.2%). Most were interested to some degree in getting help from ethics consultants in the future (76.6%). Given this prevalence, common concerns might usefully be addressed systematically, rather than exclusively on a case-by-case basis.

Home Care in America: The Urgent Challenge of Putting Ethical Care into Practice.

Home care is one of the fastest-growing industries in the United States, providing valuable opportunities for millions of older adults and people with disabilities to live at home rather than in institutional settings. Home care workers assist clients with essential activities of daily living, but their wages and working conditions generally fail to reflect the importance of their work. Drawing on the work of Eva Feder Kittay and other care ethicists, we argue that good care involves attending to the needs of another out of a concern for their well-being. Such care should be standard in the home care system. Yet, because of the pervasive racial, gender, and economic inequalities that the home care industry perpetuates, home care workers and their clients cannot reasonably be expected to care about each other. We endorse reforms aimed at enabling home care workers and their clients to form and maintain professional relationships that cultivate care..

What values drive communities' nutrition priorities in a resource constrained urban area in South Africa?

BACKGROUND: Voices of under-resourced communities are recognised as important yet are often unheard in decisions about healthcare resource allocation. Deliberative public engagement can serve as an effective mechanism for involving communities in establishing nutrition priorities. This study sought to identify the priorities of community members of a South African township, Soweto, and describe the underlying values driving their prioritisation process, to improve nutrition in the first 1000 days of life. METHODS: We engaged 54 community members (28 men and 26 women aged > 18 years) from Soweto. We conducted seven group discussions to determine how to allocate limited resources for prioritising nutrition interventions. We used a modified public engagement tool: CHAT (Choosing All Together) which presented 14 nutrition intervention options and their respective costs. Participants deliberated and collectively determined their nutritional priorities. Choices were captured quantitatively, while group discussions were audio-recorded. A thematic analysis was undertaken to identify the reasons and values associated with the selected priorities. RESULTS: All groups demonstrated a preference to allocate scarce resources towards three priority interventions-school breakfast provisioning, six-months paid maternity leave, and improved food safety. All but one group selected community gardens and clubs, and five groups prioritised decreasing the price of healthy food and receiving job search assistance. Participants' allocative decisions were guided by several values implicit in their choices, such as fairness and equity, efficiency, social justice, financial resilience, relational solidarity, and human development, with a strong focus on children. Priority interventions were deemed critical to supporting children's optimal development and well-being, interrupting the intergenerational cycle of poverty and poor human development in the community. CONCLUSION: Our study demonstrates how public engagement can facilitate the incorporation of community values and programmatic preferences into nutrition priority setting, enabling a responsive approach to local community needs, especially in resource constrained contexts. Findings could guide policy makers to facilitate more appropriate decisions and to improve nutrition in the first 1000 days of life.

A Translational Role for Bioethics: Looking Back and Moving Forward.

Assumptions that bioethics was intended to focus only on a narrow set of issues related to research and health care are mistaken. The field of bioethics has long been focused on pressing contemporary issues, and it will play an unduly peripheral and less significant role than it could otherwise if it fails to focus on a broad set of issues, including human relations and the relationship of humans to nonhuman beings and the environment-and if it does not consider how to engage with others in addressing these issues. Bioethicists' traditional approaches, which emphasize an analytical role regarding values and goals, are important, but bioethicists also must include stakeholders in deliberations and consider how to translate goals into policy and practice.

Examining priority setting in the national COVID-19 pandemic plans: A case study from countries in the WHO- South-East Asia Region (WHO-SEARO).

Background: The World Health Organization- South-East Asia Region (WHO-SEARO) accounted for almost 17% of all the confirmed cases and deaths of COVID-19 worldwide. While the literature has documented a weak COVID-19 response in the WHO-SEARO, there has been no discussion of the degree to which this could have been influenced/ mitigated with the integration of priority setting (PS) in the region's COVID-19 response. The purpose of this paper is to describe the degree to which the COVID-19 plans from a sample of WHO-SEARO countries included priority setting. Methods: The study was based on an analysis of national COVID-19 pandemic response and preparedness planning documents from a sample of seven (of the eleven) countries in WHO-SEARO. We described the degree to which the documented priority setting processes adhered to twenty established quality indicators of effective PS and conducted a cross-country comparison. Results: All of the reviewed plans described the required resources during the COVID-19 pandemic. Most, but not all of the plans demonstrated political will, and described stakeholder involvement. However, none of the plans presented a clear description of the PS process including a formal PS framework, and PS criteria. Overall, most of the plans included only a limited number of quality indicators for effective PS. Discussion and conclusion: There was wide variation in the parameters of effective PS in the reviewed plans. However, there were no systematic variations between the parameters presented in the plans and the country's economic, health system and pandemic and PS context and experiences. The political nature of the pandemic, and its high resource demands could have influenced the inclusion of the parameters that were apparent in all the plans. The finding that the plans did not include most of the evidence-based parameters of effective PS highlights the need for further research on how countries operationalize priority setting in their respective contexts as well as deeper understanding of the parameters that are deemed relevant. Further research should explore and describe the experiences of implementing defined priorities and the impact of this decision-making on the pandemic outcomes in each country.

Priority setting for pandemic preparedness and response: A comparative analysis of COVID-19 pandemic plans in 12 countries in the Eastern Mediterranean Region.

Background: The COVID-19 pandemic has significantly disrupted health systems and exacerbated pre-existing resource gaps in the Eastern Mediterranean Region (WHO-EMRO). Active humanitarian and refugee crises have led to mass population displacement and increased health system fragility, which has implication for equitable priority setting (PS). We examine whether and how PS was included in national COVID-19 pandemic plans within EMRO. Methods: An analysis of COVID-19 pandemic response and preparedness planning documents from a sample of 12/22 countries in WHO-EMRO. We assessed the degree to which documented PS processes adhere to twenty established quality parameters of effective PS. Results: While all reviewed plans addressed some aspect of PS, none included all quality parameters. Yemen's plan included the highest number (9) of quality parameters, while Egypt's addressed the lowest (3). Most plans used evidence in their planning processes. While no plans explicitly identify equity as a criterion to guide PS; many identified vulnerable populations - a key component of equitable PS. Despite high concentrations of refugees, migrants, and IDPs in EMRO, only a quarter of the plans identified them as vulnerable. Conclusion: PS setting challenges are exacerbated by conflict and the resulting health system fragmentation. Systematic and quality PS is essential to tackle long-term health implications of COVID-19 for vulnerable populations in this region, and to support effective PS and equitable resource allocation.

Evaluating the Ability to Consent to Research: A Twenty-Year Track Record.

Occasionally, the ability of prospective research participants to consent may be uncertain. Yet standardized capacity-assessment tools may not suffice to determine the ability to consent to a particular research protocol. This study consisted of a retrospective review of the outcomes of an alternative approach used by the Ability to Consent Assessment Team at the National Institutes of Health. Of 944 individuals evaluated over 20 years (1999-2019), 70.1% were determined to have capacity to consent to participate in research. Of those who lacked capacity to consent and were subsequently evaluated for their ability to assign a surrogate, 86.0% had the ability to do so. The findings demonstrate that establishing a task-specific approach for assessing the capacity of potential participants to consent to a variety of research protocols can facilitate safe and ethically justifiable inclusion of individuals whose ability to consent is initially uncertain.

Ethics Consultation in U.S. Hospitals: A National Follow-Up Study.

A 1999-2000 national study of U.S. hospitals raised concerns about ethics consultation (EC) practices and catalyzed improvement efforts. To assess how practices have changed since 2000, we administered a 105-item survey to "best informants" in a stratified random sample of 600 U.S. general hospitals. This primary article details the methods for the entire study, then focuses on the 16 items from the prior study. Compared with 2000, the estimated number of case consultations performed annually rose by 94% to 68,000. The median number of consults per hospital was unchanged at 3, but more than doubled for hospitals with 400+ beds. The level of education of EC practitioners was unchanged, while the percentage of hospitals formally evaluating their ECS decreased from 28.0% to 19.1%. The gap between large, teaching hospitals and small, nonteaching hospitals widened since the prior study. We suggest targeting future improvement efforts to hospitals where needs are not being met by current approaches to EC.

Ethics Consultation in U.S. Hospitals: Opinions of Ethics Practitioners.

To design effective strategies to improve ethics consultation (EC) practices, it is important to understand the views of ethics practitioners. Previous U.S. studies of ethics practitioners have overrepresented the views of academic bioethicists. To help inform EC improvement efforts, we surveyed a random stratified sample of U.S. hospitals, examining ethics practitioners' opinions on EC in general, on their own EC service, on strategies to improve EC, and on ASBH practice standards. Respondents across all categories of hospitals had very positive perceptions of their own ethics consultation service (ECS) and few concerns about quality. Our findings suggest that the ethics-related needs of small, rural, non-teaching hospitals may be very different from those of academic medical centers, and therefore, different approaches to addressing ethical issues might be warranted.

CHAT SA: Modification of a Public Engagement Tool for Priority Setting for a South African Rural Context.

BACKGROUND: Globally, as countries move towards universal health coverage (UHC), public participation in decisionmaking is particularly valuable to inform difficult decisions about priority setting and resource allocation. In South Africa (SA), which is moving towards UHC, public participation in decision-making is entrenched in policy documents yet practical applications are lacking. Engagement methods that are deliberative could be useful in ensuring the public participates in the priority setting process that is evidence-based, ethical, legitimate, sustainable and inclusive. Methods modified for the country context may be more relevant and effective. To prepare for such a deliberative process in SA, we aimed to modify a specific deliberative engagement tool - the CHAT (Choosing All Together) tool for use in a rural setting. METHODS: Desktop review of published literature and policy documents, as well as 3 focus groups and modified Delphi method were conducted to identify health topics/issues and related interventions appropriate for a rural setting in SA. Our approach involved a high degree of community and policy-maker/expert participation. Qualitative data were analysed thematically. Cost information was drawn from various national sources and an existing actuarial model used in previous CHAT exercises was employed to create the board. RESULTS: Based on the outcomes, 7 health topics/issues and related interventions specific for a rural context were identified and costed for inclusion. These include maternal, new-born and reproductive health; child health; woman and child abuse; HIV/AIDS and tuberculosis (TB); lifestyle diseases; access; and malaria. There were variations in priorities between the 3 stakeholder groups, with community-based groups emphasizing issues of access. Violence against women and children and malaria were considered important in the rural context. CONCLUSION: The CHAT SA board reflects health topics/issues specific for a rural setting in SA and demonstrates some of the context-specific coverage decisions that will need to be made. Methodologies that include participatory principles are useful for the modification of engagement tools like CHAT and can be applied in different country contexts in order to ensure these tools are relevant and acceptable. This could in turn impact the success of the implementation, ultimately ensuring more effective priority setting approaches.

Priority setting and equity in COVID-19 pandemic plans: a comparative analysis of 18 African countries.

Priority setting represents an even bigger challenge during public health emergencies than routine times. This is because such emergencies compete with routine programmes for the available health resources, strain health systems and shift health-care attention and resources towards containing the spread of the epidemic and treating those that fall seriously ill. This paper is part of a larger global study, the aim of which is to evaluate the degree to which national COVID-19 preparedness and response plans incorporated priority setting concepts. It provides important insights into what and how priority decisions were made in the context of a pandemic. Specifically, with a focus on a sample of 18 African countries' pandemic plans, the paper aims to: (1) explore the degree to which the documented priority setting processes adhere to established quality indicators of effective priority setting and (2) examine if there is a relationship between the number of quality indicators present in the pandemic plans and the country's economic context, health system and prior experiences with disease outbreaks. All the reviewed plans contained some aspects of expected priority setting processes but none of the national plans addressed all quality parameters. Most of the parameters were mentioned by less than 10 of the 18 country plans reviewed, and several plans identified one or two aspects of fair priority setting processes. Very few plans identified equity as a criterion for priority setting. Since the parameters are relevant to the quality of priority setting that is implemented during public health emergencies and most of the countries have pre-existing pandemic plans; it would be advisable that, for the future (if not already happening), countries consider priority setting as a critical part of their routine health emergency and disease outbreak plans. Such an approach would ensure that priority setting is integral to pandemic planning, response and recovery.

Ethics Consultation in U.S. Hospitals: New Findings about Consultation Practices.

BackgroundWhile previous research has examined various aspects of ethics consultation (EC) in U.S. hospitals, certain EC practices have never been systematically studied.MethodsTo address this gap, we surveyed a random stratified sample of 600 hospitals about aspects of EC that had not been previously explored.ResultsNew findings include: in 26.0% of hospitals, the EC service performs EC for more than one hospital; 72.4% of hospitals performed at least one non-case consultation; in 56% of hospitals, ECs are never requested by patients or families; 59.0% of case consultations involve conflict; the usual practice is to visit the patient in all formal EC cases in 32.5% of hospitals; 56.6% of hospitals do not include a formal meeting in most EC cases; 61.1% of hospitals do not routinely assess ethics consultants' competencies; and 31.6% of hospitals belong to a bioethics network. We estimate the total number of non-case consultations performed in U.S. hospitals to be approximately one half the number of case consultations; we estimate the total number of ECs performed in U.S. hospitals, including both case and non-case consultations, to be just over 100,000 per year.ConclusionsThese findings expand our current understanding of EC in U.S. hospitals, and raise several concerns that suggest a need for further research.