Recruitment of patients, carers and members of the public to advisory boards, groups and panels in public and patient involved health research: a scoping review.

OBJECTIVES: The objectives of this scoping review are to: (1) identify the distribution of and context of the recruitment strategies used, (2) explore the facilitators, benefits, barriers and ethical issues of the identified recruitment strategies, (3) distinguish the varying terminology for involvement (ie, panels, boards, individual) and (4) determine if the individual recruitment strategies used were to address issues of representation or bias. DESIGN: A scoping review. SETTING: This scoping review follows the framework by Peters et al. Seven electronic databases were explored including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library and PsycINFO (conducted July 2021). The search strategy was codeveloped among the research team, PPI research experts and a faculty librarian. Two independent reviewers screened articles by title and abstract and then at full text based on predetermined criteria. PRIMARY AND SECONDARY OUTCOME MEASURES: Explore recruitment strategies used, facilitators, benefits, barriers and ethical issues of the identified recruitment strategies. Identify terminology for involvement. Explore recruitment strategies used to address issues of representation or bias. RESULTS: The final sample was from 51 sources. A large portion of the extracted empirical literature had a clinical focus (37%, n=13) but was not a randomised control trial. The most common recruitment strategies used were human networks (78%, n=40), such as word of mouth, foundation affiliation, existing networks, clinics or personal contacts. Within the reviewed literature, there was a lack of discussion pertaining to facilitators, benefits, barriers and ethical considerations of recruitment strategies was apparent. Finally, 41% (n=21) of studies employed or proposed recruitment strategies or considerations to address issues of representation or bias. CONCLUSION: We conclude with four key recommendations that researchers can use to better understand appropriate routes to meaningfully involve patients, carers and members of the public to cocreate the evidence informing their care.

Ética en investigación: desafíos durante la pandemia / Research ethics: challenges during the pandemic

Durante la pandemia de Covid-19 los hospitales pediatricos se vieron menos afectados, debido a la menor infección en niños, y sus recursos fueron reasignados en distintas tareas.. El Comité de Ética en Investigación del Hospital General de Niños Pedro de Elizalde presenta los distintos procedimientos implementados en esta emergencia, para sostener diferentes investigaciones, y que les permitió una rápida respuesta a esta situación.

The Value of and Need for Health Services and Policy Research that Focuses on Macro System-Level Challenges.

Much of health services and policy research is applied. We offer four provocations to stimulate thinking about the relationship between research and the "systems" it aims to influence. We conclude that a focus on partnership implies that researchers need to be empathetic to the timelines and needs of policy makers, while true relationships are bidirectional. Focusing on the priorities of "systems" will emphasize short-term issues. This leads to researchers often conducting post-implementation evaluation, where they have had little involvement in policy or intervention design. Finally, a focus on single-project return of investment will tend to undervalue riskier - but also potentially more rewarding - research.

Developing an obesity research agenda with British Pakistani women living in deprived areas with involvement from multisectoral stakeholders: Research priority setting with a seldom heard group.

INTRODUCTION: British Pakistani women have exceptionally high rates of obesity and yet are seldom heard in a research priority setting concerning weight management. The objectives of this study were (i) to ascertain what multisectoral professionals perceive to be the most pressing unmet obesity needs or topic areas that need more research in relation to Pakistani women living in deprived areas of Bradford and (ii) to determine the top 10 obesity health priorities for this group to develop an obesity research agenda. METHODS: A two-step process was adopted using the following: (i) a survey of a wide range of multisectoral professional stakeholders (n = 159) and (ii) a ranking exercise involving Pakistani women living in deprived areas of Bradford (n = 32) to select and prioritize their top 10 obesity health concerns and unmet needs from a list of 31 statements identified in the survey and previous research. Survey data were analysed using inductive content analysis and themes were identified. Themes were translated into statements to be ranked by Pakistani women. The ranking exercise was conducted by telephone either via voice or video call. Data were analysed using a reverse scoring system. RESULTS: Survey responses were grouped into statements reflecting the following three categories: education needs; healthy behaviour barriers and mental well-being. The highest rankings were given by Pakistani women to statements on mental health and the need for education. The top 10 prioritized statements were developed with members of the public into an obesity research agenda that reflected the target population. CONCLUSION: Actively engaging British Pakistani women in setting research priorities provided a unique opportunity to understand the key areas they think are important for future research. The culminating research agenda can be used by researchers to advance the field of obesity research in Pakistani communities, thus producing research outputs that are relevant to and have impact in this population. PATIENT OR PUBLIC CONTRIBUTION: Participants in the ranking exercise collected data. Public contributors were involved in developing the prioritized statements into a research agenda.

Prevention Research Centers and COVID-19: Models of a Community-Engaged Response to a Public Health Emergency.

For more than 30 years, the network of Centers for Disease Control and Prevention (CDC)-funded Prevention Research Centers (PRCs) has worked with local communities and partners to implement and evaluate public health interventions and policies for the prevention of disease and promotion of health. The COVID-19 pandemic tested the PRC network's ability to rapidly respond to multiple, simultaneous public health crises. On April 28, 2020, to assess the network's engagement with activities undertaken in response to the early phase of the pandemic, PRC network leadership distributed an online survey to the directors of 34 currently or formerly funded PRCs, asking them to report their PRCs' engagement with predetermined activities across 9 topical areas and provide case studies exemplifying that engagement. We received responses from 24 PRCs, all of which reported engagement with at least 1 of the 9 topical areas (mean, 5). The topical areas with which the greatest number of PRCs reported engagement were support of frontline agencies (21 of 24, 88%) and support of activities related to health care (21 of 24, 88%). The mean number of activities with which PRCs reported engagement was 11. The PRCs provided more than 90 case studies exemplifying their work. The results of the survey indicated that the PRCs mobilized their personnel and resources to support the COVID-19 response in less than 6 weeks. We posit that the speed of this response was due, in part, to the broad and diverse expertise of PRC personnel and long-standing partnerships between PRCs and the communities in which they work.

Building the foundation for a practice-based research network: supporting primary care research across Canada.

Context: The Strategy for Patient Oriented Research (SPOR) was designed to engage previously passive stakeholders in the research process to ensure that the most urgent health challenges are addressed with evidence-based solutions that are feasible and scalable. The Primary and Integrated Health Care Innovations Network (PIHCIN), one of multiple SPOR entities, is rooted in community-based primary health care and meant to support transformation of primary and integrated care to improve patient experiences and health. Objective: To describe key components of building the foundation for a cross-jurisdictional, practice-based research network. Design: Cross-sectional survey and PIHCI network documentation review. Setting: SPOR PIHCI networks within British Columbia; Alberta; Saskatchewan; Manitoba; Ontario; Quebec; New Brunswick; Nova Scotia; Prince Edward Island; Newfoundland and Labrador; and the Northwest Territories. Participants: Responses were received from 11 networks who completed a template asking about their governance, capacity building, stakeholder engagement and patient partners. Responses were also received from the SPOR PIHCIN Pan-Canadian Patient Council. Outcome Measures: Thematic analysis across responses and documents for key components foundational to PIHCIN: types of stakeholders engaged, types of capacity building activities, knowledge translation and exchange activities. Results: Tripartite (clinician, scientist, decision-maker) leadership was used to align more closely with provincial and territorial needs in bringing practice and research closer together. PIHCIN enabled a unique pan-Canadian forum for government staff responsible for primary care. Individual networks and the PIHCIN patient-partners were actively engaged in research and governance on all levels including leading their own research. PIHCIN built research capacity by partnering with the Transdisciplinary Understanding and Training on Research Primary Health Care (TUTOR-PHC) and embedding fellows within the network. The PIHCI network undertook two separate learning series featuring patients, policy makers and scientists that were open to the public and demonstrated clear impact. Conclusion: Foundational components of embedded patients-partners, tripartite leadership, capacity building and knowledge translation and exchange have led to the formation of the PIHCI network providing an excellent base to build a pan-Canadian practice-based research and learning platform.

Developing a national trauma research action plan: Results from the Burn Research Gap Delphi Survey.

BACKGROUND: The 2016 National Academies of Science, Engineering and Medicine call for a national integrated, military-civilian trauma action plan to achieve zero preventable deaths and disability after injury included a proposal to establish a National Trauma Research Action Plan to "strengthen trauma research and ensure that the resources available for this research are commensurate with the importance of injury and the potential for improvement in patient outcomes." The Department of Defense funded the Coalition for National Trauma Research to generate a comprehensive research agenda spanning the continuum of trauma/burn care from prehospital to rehabilitation. The Burn/Reconstructive Surgery group represents one focus area for this research agenda development. METHODS: Experts in burn and reconstructive surgery research identified gaps in knowledge, generated research questions and prioritized questions using a consensus driven Delphi survey approach. Participants were identified using established Delphi recruitment guidelines to ensure heterogeneity and generalizability with military and civilian representatives. Literature reviews informed the panel. Panelists were encouraged to use a PICO format to generate research questions: Patient/Population; Intervention; Compare/Control; Outcome. Participants ranked the priority of each question on a nine-point Likert scale, which was categorized to represent low, medium, and high priority items. Consensus was defined based on ≥60% panelist agreement. RESULTS: Subject matter experts generated 949 research questions in 29 Burn & 26 Reconstruction topics. Five hundred ninety-seven questions reached consensus. Of these, 338 (57%) were high-priority, 180 (30%), medium-priority, and 78 (13%) low-priority questions. CONCLUSION: Many high-priority questions translate to complex wound management and outcomes. Panel recognition that significant gaps in knowledge exist in understanding functional outcomes after injury underscores the importance of long-term recovery metrics even when studying acute injury or interventions such as resuscitation or inhalation injury. Funding agencies and burn/reconstructive surgery researchers should consider these gaps when they prioritize future research. LEVEL OF EVIDENCE: Expert consensus, Level IV.

Weak correlations in health services research: Weak relationships or common error?

OBJECTIVE: To examine whether the correlation between a provider's effect on one population of patients and the same provider's effect on another population is underestimated if the effects for each population are estimated separately as opposed to being jointly modeled as random effects, and to characterize how the impact of the estimation procedure varies with sample size. DATA SOURCES: Medicare claims and enrollment data on emergency department (ED) visits, including patient characteristics, the patient's hospitalization status, and identification of the doctor responsible for the decision to hospitalize the patient. STUDY DESIGN: We used a three-pronged investigation consisting of analytical derivation, simulation experiments, and analysis of administrative data to demonstrate the fallibility of stratified estimation. Under each investigation method, results are compared between the joint modeling approach to those based on stratified analyses. DATA COLLECTION/EXTRACTION METHODS: We used data on ED visits from administrative claims from traditional (fee-for-service) Medicare from January 2012 through September 2015. PRINCIPAL FINDINGS: The simulation analysis demonstrates that the joint modeling approach is generally close to unbiased, whereas the stratified approach can be severely biased in small samples, a consequence of joint modeling benefitting from bivariate shrinkage and the stratified approach being compromised by measurement error. In the administrative data analyses, the estimated correlation of doctor admission tendencies between female and male patients was estimated to be 0.98 under the joint model but only 0.38 using stratified estimation. The analogous correlations for White and non-White patients are 0.99 and 0.28 and for Medicaid dual-eligible and non-dual-eligible patients are 0.99 and 0.31, respectively. These results are consistent with the analytical derivations. CONCLUSIONS: Joint modeling targets the parameter of primary interest. In the case of population correlations, it yields estimates that are substantially less biased and higher in magnitude than naive estimators that post-process the estimates obtained from stratified models.

The Pediatric Emergency Research Network: A Decade of Global Research Cooperation in Pediatric Emergency Care.

OBJECTIVES: The Pediatric Emergency Research Network (PERN) was launched in 2009 with the intent for existing national and regional research networks in pediatric emergency care to organize globally for the conduct of collaborative research across networks. METHODS: The Pediatric Emergency Research Network has grown from 5- to 8-member networks over the past decade. With an executive committee comprising representatives from all member networks, PERN plays a supportive and collaborative rather than governing role. The full impact of PERN's facilitation of international collaborative research, although somewhat difficult to quantify empirically, can be measured indirectly by the observed growth of the field, the nature of the increasingly challenging research questions now being addressed, and the collective capacity to generate and implement new knowledge in treating acutely ill and injured children. RESULTS: Beginning as a pandemic response with a high-quality retrospective case-controlled study of H1N1 influenza risk factors, PERN research has progressed to multiple observational studies and ongoing global randomized controlled trials. As a recent example, PERN has developed sufficient network infrastructure to enable the rapid initiation of a prospective observational study in response to the current coronavirus disease 2019 pandemic. In light of the ongoing need for translation of research knowledge into equitable clinical practice and to promote health equity, PERN is committed to a coordinated international effort to increase the uptake of evidence-based management of common and treatable acute conditions in all emergency department settings. CONCLUSIONS: The Pediatric Emergency Research Network's successes with global research, measured by prospective observational and interventional studies, mean that the network can now move to improve its ability to promote the implementation of scientific advances into everyday clinical practice. Achieving this goal will involve focus in 4 areas: (1) expanding the capacity for global randomized controlled trials; (2) deepening the focus on implementation science; (3) increasing attention to healthcare disparities and their origins, with growing momentum toward equity; and (4) expanding PERN's global reach through addition of sites and networks from resource-restricted regions. Through these actions, PERN will be able to build on successes to face the challenges ahead and meet the needs of acutely ill and injured children throughout the world.

Rebuilding public health on more than thoughts and prayers.

Sweeping reviews will be conducted once the COVID-19 pandemic concludes to support public health system strengthening. Unfortunately, these reviews will find what past reviews on public health in Canada have found: limited evidence on the organization, financing, and delivery of public health services. This is due to inattention to the field of public health services and systems research (PHSSR) in Canada. To avoid this pandemic becoming "just another public health crisis," PHSSR must be prioritized by public health and health service research associations, funders, and scholars.

RéSUMé: Des révisions en profondeur seront menées à la conclusion de la COVID-19 pour appuyer le renforcement du système de santé publique. Malheureusement, ces révisions constateront les mêmes conclusions que les revues antérieures sur la santé publique au Canada : les preuves sur l'organisation, le financement et la prestation des services de santé publique sont limitées. Cela est dû au manque d'attention au domaine de la recherche sur les systèmes et les services de santé publique (RSSSP) au Canada. Afin d'éviter que cette pandémie ne devienne « rien qu'une autre crise de santé publique ¼, la RSSSP doit être une priorité pour les associations de recherche, les donateurs et les universitaires de la santé publique et des services de santé.

The evolution of personalized healthcare and the pivotal role of European regions in its implementation.

Personalized medicine (PM) moves at the same pace of data and technology and calls for important changes in healthcare. New players are participating, providing impulse to PM. We review the conceptual foundations for PM and personalized healthcare and their evolution through scientific publications where a clear definition and the features of the different formulations are identifiable. We then examined PM policy documents of the International Consortium for Personalised Medicine and related initiatives to understand how PM stakeholders have been changing. Regional authorities and stakeholders have joined the race to deliver personalized care and are driving toward what could be termed as the next personalized healthcare. Their role as a key stakeholder in PM is expected to be pivotal.