Mobilizing community-driven health promotion through community granting programs: a rapid systematic review.

BACKGROUND: Effective health promotion responds to the unique needs of communities. Community granting programs that fund community-driven health promotion initiatives are a potential mechanism to meet those unique needs. While numerous community health-focused programs are available, the various strategies used by granting programs to foster engagement, administer grants and support awardees have not been systematically evaluated. This rapid systematic review explores the administration of community granting programs and how various program components impact process and population health outcomes. METHODS: A systematic search was conducted across three databases: Medline, SocINDEX, and Political Science Database. Single reviewers completed screening, consistent with a rapid review protocol. Studies describing or evaluating community granting programs for health or public health initiatives were included. Data regarding program characteristics were extracted and studies were evaluated for quality. A convergent integrated approach was used to analyze quantitative and qualitative findings. RESULTS: Thirty-five community granting programs, described in 36 studies, were included. Most were descriptive reports or qualitative studies conducted in the USA. Program support for grant awardees included technical assistance, workshops and training, program websites, and networking facilitation. While most programs reported on process outcomes, few reported on community or health outcomes; such outcomes were positive when reported. Programs reported that many funded projects were likely sustainable beyond program funding, due to the development of awardee skills, new partnerships, and securing additional funding. From the perspectives of program staff and awardees, facilitators included the technical assistance and workshops provided by the programs, networking amongst awardees, and the involvement of community members. Barriers included short timelines to develop proposals and allocate funds. CONCLUSIONS: This review provides a comprehensive overview of health-related community granting programs. Grant awardees benefit from technical assistance, workshops, and networking with other awardees. Project sustainability is enhanced by the development of new community partnerships and grant-writing training for awardees. Community granting programs can be a valuable strategy to drive community health, with several key elements that enhance community mobilization. REGISTRATION: PROSPERO #CRD42023399364.

Exploring stakeholders' perspectives on the adaptation of the Living Lab approach to dementia care: A qualitative study.

Collaborative research can promote knowledge translation and help to link care practice and research. Academic-practice partnerships enable joint research projects in collaboration between care professionals, researchers, patients, and other stakeholders. This qualitative study was conducted during the adaptation phase of the Living Lab Dementia, an academic-practice partnership for collaborative research on long-term dementia care. The aim was to explore stakeholders' perspectives on linking care practice and research in a sustainable, research-focused partnership. Data were collected in fifteen qualitative interviews with representatives from three stakeholder groups: nursing care professionals, people with dementia, and nursing researchers. Thematic Framework Analysis resulted in five themes: (1) Access, (2) Expectations, (3) Shaping the collaboration, (4) Linking Pins, and (5) Participation. The findings suggest that care professionals expect support in implementing research results into practice. Researchers should take the lead in shaping the collaboration and create opportunities for stakeholders to get involved.

Fit for purpose. Co-production of complex behavioural interventions. A practical guide and exemplar of co-producing a telehealth-delivered exercise intervention for people with stroke.

BACKGROUND: Careful development of interventions using principles of co-production is now recognized as an important step for clinical trial development, but practical guidance on how to do this in practice is lacking. This paper aims (1) provide practical guidance for researchers to co-produce interventions ready for clinical trial by describing the 4-stage process we followed, the challenges experienced and practical tips for researchers wanting to co-produce an intervention for a clinical trial; (2) describe, as an exemplar, the development of our intervention package. METHOD: We used an Integrated Knowledge Translation (IKT) approach to co-produce a telehealth-delivered exercise program for people with stroke. The 4-stage process comprised of (1) a start-up planning phase with the co-production team. (2) Content development with knowledge user informants. (3) Design of an intervention protocol. (4) Protocol refinement. RESULTS AND REFLECTIONS: The four stages of intervention development involved an 11-member co-production team and 32 knowledge user informants. Challenges faced included balancing conflicting demands of different knowledge user informant groups, achieving shared power and collaborative decision making, and optimising knowledge user input. Components incorporated into the telehealth-delivered exercise program through working with knowledge user informants included: increased training for intervention therapists; increased options to tailor the intervention to participant's needs and preferences; and re-naming of the program. Key practical tips include ways to minimise the power differential between researchers and consumers, and ensure adequate preparation of the co-production team. CONCLUSION: Careful planning and a structured process can facilitate co-production of complex interventions ready for clinical trial.

Perspectives of Region XI Head Start Federal, Research, and Program Partners in Carrying out a National Study of American Indian and Alaska Native Head Start Children, Families, and Programs.

The American Indian and Alaska Native Head Start Family and Child Experiences Survey (AIAN FACES) 2015 was the first national study of children served by Region XI Head Start programs, which are those operated by federally recognized AIAN tribes. Until 2015, Region XI programs had not been included in national studies of Head Start children's experiences and development, leaving them without this critical source of data to inform policy and practice as is available to other Head Start regions. To address this gap, four groups of stakeholders gathered to plan for a study that put the needs of Region XI Head Start at the forefront, was informed by the historical context of research with AIAN communities, and was guided by community psychology and community-based and tribal participatory approaches. Engaged partnership is a common practice in research with AIAN communities, but rarely on a national scale across diverse communities. The study's success speaks to the success of the unique national partnership between the Region XI Head Start, research, and federal stakeholders who formed the AIAN FACES Workgroup. This first-person account documents the perspective of each group as they undertook this seminal effort and reviews connections with, and lessons learned for, the broader field of community psychology.

Funding patterns for biomedical research and infectious diseases burden in Gabon.

BACKGROUND: Biomedical research plays an important role in improving health. There seems to exist a negative correlation between the amount of biomedical research funding and disease burden from all Sub-Saharan African countries. In this study, we describe funding patterns for biomedical research, explore the correlation between funding and burden of diseases, and quantify inequalities in funds distribution across diseases in Gabon over the period 2005-2015. METHODS: Data on medical research funds from 2005 to 2015 were retrieved through a structured questionnaire distributed to Gabonese biomedical research institutions and by consulting online databases. Data on the burden of diseases were gathered from the World Health Organization and the Institute for Health Metrics and Evaluation. We used Kendall rank correlation coefficient to explore the correlation between cumulative funds over time and the burden of disease. The inequality distribution of funding across diseases was assessed through Gini coefficient and Lorenz curve. RESULTS: Biomedical research funding was characterized by a remarkable growth from 2005 to 2010 and a decline from 2010 to 2014. Funds were mostly from external sources and from partnerships. There was inequality in research funds allocation across diseases and malaria was far the most funded disease. There was a significant negative correlation between cumulative funding and the burden of HIV, tuberculosis, and of Helminthiasis (from 2006 to 2010) suggesting that research may be contributing to the management of such diseases. A positive, although not significant, correlation was found between cumulative funds and malaria burden. CONCLUSIONS: The negative correlation between HIV and tuberculosis cumulative funding and burden suggests that research may be contributing to the management of such diseases but further research is needed to assess the causal direction of such as relationship. As the burden of non-communicable diseases is increasing, more research funds should be focused on those. While research partnerships have been and will remain fundamental, Gabon should increase the amount of national funds to overcome periods of reduced research funding flows from abroad.

Integrated knowledge translation in population health intervention research: a case study of implementation and outcomes from a school-based project.

BACKGROUND: Integrated knowledge translation (IKT) is encouraged in population health intervention research (PHIR) to ensure the co-production of policy-relevant research, yet there is little published literature that reports its implementation and outcomes. The purpose of this study was to describe and evaluate the IKT approach used in a school-based PHIR project to understand how the research informed policy and practice and identify what influenced the IKT process. METHODS: A case study approach was used to provide an in-depth description of the IKT process and understand the co-production and application of research evidence. Data were collected through document review, a survey with all elementary school principals in the school board (n = 18) following dissemination of School Reports and interviews with the IKT research team (including two researchers and three knowledge users). RESULTS: Approximately half of the principals reported reading their School Report (52%) and almost all of these principals attributed the partial or full adoption, or implementation, of a new practice as a result of using the information (89%). Key themes related to the IKT process emerged across the interviews, including supportive relationships, role clarity, competing priorities and the complexities of population health interventions. CONCLUSIONS: The findings suggest that, while IKT can support policy and practice, it can be challenging to maintain engagement due to differing priorities and role ambiguity. Additional recognition, investment and research would enable better implementation of the approach, thereby bridging the gap between research, policy and practice.

Evaluating the impact of a network of research partnerships: a longitudinal multiple case study protocol.

BACKGROUND: Conducting and/or disseminating research together with community stakeholders (e.g. policy-makers, practitioners, community organisations, patients) is a promising approach to generating relevant and impactful research. However, creating strong and successful partnerships between researchers and stakeholders is complex. Thus far, an in-depth understanding of how, when and why these research partnerships are successful is lacking. The aim of this study is to evaluate and explain the outcomes and impacts of a national network of researchers and community stakeholders over time in order to gain a better understanding of how, when and why research partnerships are successful (or not). METHODS: This longitudinal multiple case study will use data from the Canadian Disability Participation Project, a large national network of researchers and community stakeholders working together to enhance community participation among people with physical disabilities. To maximise the impact of research conducted within the Canadian Disability Participation Project network, researchers are supported in developing and implementing knowledge translation plans. The components of the RE-AIM framework (reach, effectiveness, adoption, implementation and maintenance) will guide this study. Data will be collected from different perspectives (researchers, stakeholders) using different methods (logs, surveys, timeline interviews) at different time points during the years 2018-2021. A combination of data analysis methods, including network analysis and cluster analysis, will be used to study the RE-AIM components. Qualitative data will be used to supplement the findings and further understand the variation in the RE-AIM components over time and across groups. DISCUSSION: The outcomes, impacts and processes of conducting and disseminating research together with community stakeholders will be extensively studied. The longitudinal design of this study will provide a unique opportunity to examine research partnerships over time and understand the underlying processes using a variety of innovative research methods (e.g. network analyses, timeline interviews). This study will contribute to opening the 'black box' of doing successful and impactful health research in partnership with community stakeholders. TRIAL REGISTRATION: Open Science Framework: https://osf.io/kj5xa/ .

Consumer involvement in cancer research: example from a Cancer Network.

BACKGROUND: The involvement of consumers and the general public in improving cancer services is an important component of health services. However, consumer involvement in cancer research is relatively unexplored. The objective of this study was to explore different ways of involving consumers in cancer research in one regional network. METHODS: Thames Valley Cancer Network Consumer Research Partnership (CRP) group was formed in 2009. The group consists of consumers and professionals to help in promoting consumer involvement in Cancer Research in the Thames Valley. This study evaluated the project of consumer involvement in cancer research in the Thames Valley from March 2010 to March 2011. We used different indices to judge the level of consumer involvement: number of projects involving consumers through the group, types of projects, level of involvement (ranged from consultation on research documents to collaborating in preparing grant applications) and the methods of involving consumers in cancer research. RESULTS: Fifteen projects were submitted to the CRP group during the 12-month period studied. Of these, eight projects were clinical trials, three were qualitative research projects, two were patients' surveys and two were non-randomized interventional studies. Seven projects requested consumer involvement on patient information sheets for clinical trials. Of these seven applications, three also requested consumers' help in designing research questionnaires and another three requested that consumers should be involved in their project management group. In addition, four projects involved consumers in the proposal development phase and another four projects asked for advice on how to increase trial recruitment, conduct patient interviews or help with grant applications. CONCLUSIONS: The creation of the CRP and this audit of its activity have documented consumer involvement in cancer research in the Thames Valley. We have clearly shown that consumers can be involved in designing and managing cancer research projects.

Fostering IRB collaboration for review of international research.

This article presents a review of the literature, summarizes current initiatives, and provides a heuristic for assessing the effectiveness of a range of institutional review board (IRB) collaborative strategies that can reduce the regulatory burden of ethics review while ensuring protection of human subjects, with a particular focus on international research. Broad adoption of IRB collaborative strategies will reduce regulatory burdens posed by overlapping oversight mechanisms and has the potential to enhance human subjects protections.

Threatened by many complex food security problems - agriculture, academic, and government professionals seek new one health research partnerships.

With modern international trade and the rapid movement of people, animals, and food products, today's risks to food security are increasing worldwide. It is clear that human health, animal health, environmental health, and agriculture are inextricable linked. Food security problems in one sector often adversely impact multiple other sectors. Food security threats are often complex with many factors influencing the emergence of new threats. As multiple US governmental agencies share responsibilities for food security threat mitigation, we need to find new ways for the numerous food security scientific disciplines and agencies to forge new effective research collaborations in meeting these threats. This special issue of the journal One Health seeks to give examples of such research. It represents a collection of scientific reports from oral and poster presentations delivered at the April 21-23, 2024, "International Symposium on One Health Research: Improving Food Security and Resilience" in Galveston, Texas.

Lessons from a research partnership in southwest England to understand community palliative care needs in rural, coastal and low-income communities.

Background: The South West Peninsula (Cornwall, Devon, Somerset) has the highest proportion of over 65s (24.2%) and is the only English rural population with greater economic deprivation than in urban areas. Coastal populations have the worst health outcomes in England. Despite innovation among communities to support those with health and care needs in later life, recruitment to palliative care research in the region is low and there has been no evaluation of public health palliative care interventions. Objectives: A new South West Peninsula Palliative Care Research Partnership was funded for 15 months, bringing together four universities, the voluntary and community sector (including hospices) and local National Institute for Health and Care Research networks. The aim was to establish a sustainable multisectoral partnership that would identify community-based support needs for underserved rural and coastal populations by: • conducting a literature scoping review on interventions to enable community members to support the dying; • delivering a research capacity-building programme; • co-creating public and patient involvement capacity; • determining the resources and needs for communities to support dying well; • integrating findings to develop a framework of community-based support and identify future research questions; • establishing a sustainable research network infrastructure for the long-term design and delivery of palliative care research. Design: We convened partners to identify research needs and co-designed activities to meet our objectives. These included a scoping review; a capacity-building programme of training, seminars and a journal club; forming a patient and public involvement group; a multistranded community engagement programme using different creative approaches; four focus groups with members of the public and one with community workers; and producing three 'storytelling' audio recordings. Findings were presented to the partnership at a regional workshop. Results: The scoping review showed that community-engaged palliative care interventions can improve outcomes for individuals but provided little evidence about which approaches work for different communities. Five online seminars and a quarterly journal club to develop research capacity were regularly attended by 15 to 25 participants from across the partnership. While evaluating our engagement methods was beyond the partnership's scope, levels of participation suggested that creative methods of engagement show potential to help researchers and practitioners better understand the needs and priorities of underserved populations. Data showed that rural, coastal and low-income communities face challenges in accessing end-of-life care and support due to issues such as transport to and distance from services, erosion of neighbourhood networks, isolation from family and friends, 'patchiness' of palliative care services and a lack of care providers. Community organisations are well-placed to co-produce and facilitate methodologies for involving communities in palliative care research. Limitations: Although activities took place in diverse areas, it was not possible within the available resources to cover the entire large geographical region, particularly the most isolated rural areas. Conclusions: Partnerships bringing together voluntary and community sector organisations, palliative care providers, health and social care providers, individuals with experience and academics have potential to design future research and public health interventions that better understand local context, involving and supporting communities to address their needs at end of life. Funding: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR135312.

England's South West Peninsula (Cornwall, Devon, Somerset) has high levels of poverty and an ageing population. There are some community groups which enable individuals to support each other at the end of life. However there has been little local palliative (i.e. end-of-life) care research to understand people's needs in rural and coastal areas. We created the South West Peninsula Palliative Care Research Partnership including four universities, voluntary and community organisations (including hospices), health research agencies, and a group of individuals interested in palliative care. We wanted to build a sustainable partnership that would identify what communities need to support each other at end of life and help individuals and organisations to plan and participate in research. We reviewed existing research evidence and ran a programme of training events and community activities (an interactive display, focus groups, one-to-one conversations and 'storytelling'). Finally, we came together to discuss the findings and plan next steps. Getting support at the end of life can be difficult in the region because of poor transport, distance from services, isolation from support networks, and patchy palliative and social care services. We found that using creative ways to involve people, like the interactive display, helped clinicians and researchers better understand local needs. Our experience of partnership working showed that palliative care organisations, academics and community organisations working alongside each other can help services reach these areas, and make it easier for people to be involved in research. We hope that continuing this partnership will help communities share and develop expertise in supporting patients and families with palliative care needs, and help clinical services and universities involve people in rural, coastal and low-income areas in planning, delivering and participating in research that addresses their priorities.

Establishing a research partnership to investigate functional loss and rehabilitation towards the end of life.

Background: Functional loss, the inability to perform necessary or desired tasks, is a common consequence of life-limiting illnesses and associated symptoms (pain, fatigue, breathlessness, etc.) and causes suffering for patients and families. Rehabilitation, a set of interventions designed to address functional loss, is recognised as essential within palliative care, as it can improve quality of life and reduce care costs. However, not everyone has equal access to rehabilitation. Despite limited life expectancy or uncertain ability to benefit from interventions, palliative rehabilitation services are often absent. This is partly due to a lack of high-quality research around optimal models of rehabilitation. Research in this area is methodologically challenging and requires multidisciplinary and cross-speciality collaboration. Aim and objectives: We aimed to establish and grow a United Kingdom research partnership across diverse areas, commencing with partners from Edinburgh, East Anglia, Lancashire, Leeds, London and Nottingham, around the topic area of functional loss and rehabilitation in palliative and end-of-life care. The objectives were to (1) develop a multidisciplinary, cross-speciality research partnership, (2) generate high-priority unanswered research questions with stakeholders, (3) co-design and submit high-quality competitive research proposals, including (4) sharing topic and methodological expertise, and (5) to build capacity and capability to deliver nationally generalisable studies. Activities: The partnership was established with professionals from across England and Scotland with complementary areas of expertise including complex palliative and geriatric research, physiotherapy, nursing, palliative medicine and psychology. Research questions were generated through a modified version of the Child Health and Nutrition Research Initiative, which allowed for the collation and refinement of research questions relating to functional loss and rehabilitation towards the end of life. Partnership members were supported through a series of workshops to transform research ideas into proposals for submission to stage one calls by the National Institute for Health and Care Research. The partnership not only supported students, clinicians and public members with training opportunities but also supported clinicians in securing protected time from clinical duties to allow them to focus on developing local research initiatives. Reflections: Through our partnership we established a network that offered researchers, clinicians, students and public members the chance to develop novel skills and explore opportunities for personal and professional development around the topic area of functional loss and rehabilitation in palliative and end-of-life care. The partnership was crucial to foster collaboration and facilitate exchange of ideas, knowledge and experiences to build joint research study proposals. Funding: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) programme as award number NIHR135171. A plain language summary of this article is available on the NIHR Journals Library website https://doi.org/10.3310/PTHC7598.

'Functional loss' describes a person becoming unable to do the everyday activities they would like or need to do. Life-limiting illnesses and their symptoms can often lead to functional loss: a common source of suffering for patients and their families. Rehabilitation aims to support a person to carry out everyday activities that have been affected by illness. This should be an important part of providing good palliative care. However, in practice, not everyone has equal access to rehabilitation and there is a lack of high-quality research in this area. The Palliative Care Rehabilitation Partnership was created to begin to address these challenges. This partnership completed activities in five key areas: Establishing the partnership ­ Brought together experts from different fields, like palliative care, care for older people and research, to improve rehabilitation for people with life-limiting illnesses. Generating research questions ­ Collected and ranked research questions about functional loss and rehabilitation from various stakeholders, including patients, to identify key research areas. Developing research proposals ­ Helped, through workshops, turn these research questions into detailed proposals for funding. This involved refining ideas, discussing how best to conduct the studies and getting feedback. Building capacity and capability ­ Provided training opportunities for its members, including clinicians, researchers and patients, to improve their research and rehabilitation skills. It also offered mentorship to people with dual roles as clinicians and researchers. Service mapping ­ Improved our understanding of services for functional loss and rehabilitation across different healthcare settings. The Palliative Care Rehabilitation Partnership has made gains in addressing the complex issues of functional loss and rehabilitation in people with life-limiting illnesses. The partnership has supported the development of at least three new research proposals that will be used to apply for future funding.

Bringing the voice of social housing tenants into shaping the health and care research agenda.

BACKGROUND: A larger percentage of social housing tenants have poorer physical and mental health outcomes compared to private renters and homeowners. They are also at a greater risk of respiratory conditions, cardiovascular disease, communicable disease transmission and mortality. One approach that aims to reduce health inequalities is to create research partnerships with underserved local communities. Our primary aim was to develop a research partnership with social housing tenants in Nottingham and our secondary aim was to explore the health priorities of these social housing tenants to inform future research applications. We also hope to provide a descriptive process of PPI within a social housing context for other researchers to learn from. METHODS: We used Public and Patient Involvement (PPI) as the foundation of this work, as we believed that people with lived experience of social housing, also end-users of the research, were best placed to inform us of the areas with the greatest research need. Through online and in-person focus groups, we discussed with tenants, collectively named a Social Advisory Group (SAG), their health concerns and priorities. Together they raised 26 health issues, which were combined with 22 funding opportunity themes being offered by the NIHR (National Institute for Health and Care Research). This was with the purpose of investigating whether there was alignment between the health needs of Nottingham's social housing tenants and the NIHR's research priorities. A prioritisation technique (Diamond Nine) was used to sort in total, 48 areas of health and wellbeing, into three top priorities. Tenants were provided the opportunity to be involved in public health research in other ways too, such as reviewing this paper and also an NIHR Programme Development Grant application to expand and continue this work. One was also offered the opportunity to be a public co-applicant. RESULTS: The group prioritised improvements in the quality of social housing, mental health and healthcare services. There was only some alignment between these and the NIHR funding themes. Other factors, such as age and race, also determined individual health priorities. . The diversity and reach of the current project were limited, however this is something we hope to improve in the future with more funding. We learned that tenants have varying degrees of mobility and technological abilities, requiring both online and in-person meetings.

Social housing is offered to people who cannot afford to buy or rent in the open market, and a larger percentage of social housing tenants have poorer physical and mental health outcomes compared to the general population. One approach that aims to reduce health inequalities is to create sustainable research partnerships with underserved local communities. Our primary aim was to involve social housing tenants in public health research, as they are best placed to tell us the type of research they would benefit from. The secondary aim was to explore the health priorities of social housing tenants to inform future research applications. We also hope to describe the process of PPI within a social housing context for other researchers to learn from.To achieve these aims, we established a research partnership with a group of social housing tenants in Nottingham and spoke to them about the areas of their health they wanted to improve (i.e., their priorities). The topics that were discussed the most were the need for improved mental health, quality of social housing and healthcare services, however this varied between individuals according to race and age. We learned several things throughout this process. Firstly, the combination of mobility and technological abilities amongst tenants meant that meetings must be held both in-person and online. This ensured they remained accessible and convenient. Secondly, we learnt that in-person meetings should be held in a neutral space to encourage different members of the group to attend. Finally, in general, people were very enthusiastic about this partnership and were committed to seeing improvements in public health. We therefore provided more opportunities for the group to be involved in research. For example, they were offered the opportunity to write and edit a lay summary for a future research application, which was based on the priorities identified in this paper. One member of the group was nominated to be the public co-applicant , which would allow us to increase the reach of this housing work across the East Midlands. It would also allow us to increase the diversity of the group, as currently it is made up of mostly retired females of British origin. Involving the public in health research has been central to this process and continues to be important in the production of accessible and relevant research.

Shining a light on the road towards conducting principle-based co-production research in rehabilitation.

Moving from participatory approaches incorporating co-design to co-production in health research involves a commitment to full engagement and partnership with people with lived experience through all stages of the research process-start to finish. However, despite the increased enthusiasm and proliferation of research that involves co-production, practice remains challenging, due in part to the lack of consensus on what constitutes co-production, a lack of guidance about the practical steps of applying this approach in respect to diverse research methods from multiple paradigms, and structural barriers within academia research landscape. To navigate the challenges in conducting co-produced research, it has been recommended that attention be paid to focusing and operationalising the underpinning principles and aspirations of co-production research, to aid translation into practice. In this article, we describe some fundamental principles essential to conducting co-production research (sharing power, relational resilience, and adopting a learning mindset) and provide tangible, practical strategies, and processes to engage these values. In doing so, we hope to support rehabilitation researchers who wish to engage in co-production to foster a more equitable, ethical, and impactful collaboration with people with lived experience and those involved in their circle of care.

A case study of using community-based consensus methods to facilitate shared decision-making among a spinal cord injury network.

Spinal cord injury (SCI) research and policy decisions are rarely made in partnership with people with SCI, making them less relevant, applicable, and used by those whom the decisions are intended to support. Across disciplines, consensus methods have been promoted as a viable solution for supporting shared research and policy-based decision-making. In this paper, we describe a partnered approach between academic researchers and the Ontario SCI Alliance, a non-profit, SCI community mobilization network to co-develop and co-disseminate a community-based consensus exercise. The community-based consensus exercise included two modified Delphi surveys and one in-person retreat. The partnership's goal with this exercise was to facilitate shared decision-making for the development of their upcoming strategic plan. We then interviewed partners and participants from the Delphi and in-person retreat to discuss successes, challenges, and lessons learned from the exercise. Survey 1 was disseminated to over 2,500 members of the Ontario SCI community and received 374 responses (276 coming from people with SCI). Survey 2 had 118 responses, with 87 coming from people with SCI. The retreat had 73 attendees, including people with SCI, family/friends of people with SCI, clinicians, researchers, and SCI community and research organization staff/volunteers. The retreat included a presentation of the survey results, a clinician/researcher panel, and externally-facilitated working groups. All survey responses and retreat materials were synthesized. Using the synthesized feedback, the Ontario SCI Alliance was able to implement several changes for the Ontario SCI community, including higher-quality primary care experiences (reduced wait times, more accessible examining rooms), the development of a wound care strategy with the Ontario government, and an advocacy campaign for public coverage for catheters and urinary care supplies. From the five interviews conducted, five themes were co-constructed regarding the successes, challenges, and lessons learned from the exercise: (1) Inclusion, Diversity, Equity, and Accessibility; (2) Partnership; (3) Design Considerations; (4) Transparency and Clarity in Communication; and (5) Sustainability. Findings from this community case study demonstrate the feasibility of conducting a community-level consensus exercise among an equity-deserving group while providing detailed guidance for how to ensure future research and policy-based decision-making is shared across diverse knowledge users.

Supporting meaningful research partnerships: an interview study applying behavior change theory to develop relevant recommendations for researchers.

Research partnerships, while promising for ensuring translation of relevant and useable findings, are challenging and need support. This study aimed to apply behavior change theory to understand and support researchers' adoption of a research partnership approach and the Integrated Knowledge Translation (IKT) Guiding Principles for conducting and disseminating spinal cord injury (SCI) research in partnership. Using an IKT approach, SCI researchers across Canada and the USA completed a survey (n = 22) and were interviewed (n = 13) to discuss barriers and facilitators to deciding to partner and follow the IKT Guiding Principles. The Behaviour Change Wheel, Theoretical Domains Framework (TDF), and Mode of Delivery Ontology were used to develop the survey, interview questions, and guided analyses of interview data. COM-B and TDF factors were examined using descriptive statistics and abductive analyses of barriers and facilitators of decisions to partner and/or use the IKT Guiding Principles. TDF domains from the interview transcripts were then used to identify intervention, content, and implementation options. 142 factors (79 barriers, 63 facilitators) related to deciding to partner, and 292 factors (187 barriers, 105 facilitators) related to deciding to follow the IKT Guiding Principles were identified. Barriers to partnering or use the IKT Guiding Principles were primarily related to capability and opportunity and relevant intervention options were recommended. Interventions must support researchers in understanding how to partner and use the IKT Guiding Principles while navigating a research system, which is not always supportive of the necessary time and costs required for meaningful research partnerships.

Research partnerships, which expand beyond researchers solely working with other researchers, are said to be promising for helping to move research into practice. However, there is a lack in understanding of how to support meaningful research partnerships with those who are not part of academia. This study interviewed spinal cord injury researchers to understand what helps and prevents them from deciding to partner when conducting research projects. Results suggest that researchers do not lack motivation to partner; however, their ability and opportunity to do so is lacking. Overall, support is needed to help researchers understand how to work in partnership within the research system.

Towards achieving transnational research partnership equity: lessons from implementing adaptive platform trials in low- and middle-income countries.

Background: Use of adaptive clinical trials, particularly adaptive platform trials, has grown exponentially in response to the coronavirus disease (COVID-19) pandemic. Implementation of these trials in low- and middle-income countries (LMICs) has been fostered through the formation or modification of transnational research partnerships, typically between research groups from LMICs and high-income countries (HICs). While these partnerships are important to promote collaboration and overcome the structural and economic disadvantages faced by LMIC health researchers, it is critical to focus attention on the multiple dimensions of partnership equity. Methods: Based on informal literature reviews and a meeting with leaders of one of the multinational COVID-19 adaptive platform trials, we describe some important considerations about research partnership equity in this context. Results: We organize these considerations into eight thematic categories: 1) epistemic structures, 2) funding, 3) ethics oversight, 4) regulatory oversight, 5) leadership, 6) post-trial access to interventions, data, and specimens, 7) knowledge translation and dissemination, and 8) research capacity strengthening and maintenance. Within each category we review normative claims that support its relevance to research partnership equity followed by discussion of how adaptive platform trials highlight new dimensions, considerations, or challenges. Conclusion: In aggregate, these observations provide insight into procedural and substantive equity-building measures within transnational global health research partnerships more broadly.

IKT Guiding Principles: demonstration of diffusion and dissemination in partnership.

INTRODUCTION: Integrated knowledge translation (IKT) is a partnered approach to research that aims to ensure research findings are applied in practice and policy. IKT can be used during diffusion and dissemination of research findings. However, there is a lack of understanding how an IKT approach can support the diffusion and dissemination of research findings. In this study, we documented and described the processes and outcomes of an IKT approach to diffusing and disseminating the findings of consensus recommendations for conducting spinal cord injury research. METHODS: Communication of the IKT Guiding Principles in two phases: a diffusion phase during the first 102 days from the manuscript's publication, followed by a 1147 day active dissemination phase. A record of all inputs was kept and all activities were tracked by monitoring partnership communication, a partnership tracking survey, a project curriculum vitae, and team emails. Awareness outcomes were tracked through Google Analytics and a citation-forward search. Awareness includes the website accesses, the number of downloads, and the number of citations in the 29 month period following publication. RESULTS: In the diffusion period, the recommendations were viewed 60 times from 4 different countries, and 4 new downloads. In the dissemination period, the recommendations were viewed 1109 times from 39 different countries, 386 new downloads, and 54 citations. Overall, during dissemination there was a 17.5% increase in new visitors to the website a month and a 95.5% increase in downloads compared to diffusion. CONCLUSION: This project provides an overview of an IKT approach to diffusion and dissemination. Overall, IKT may be helpful for increasing awareness of research findings faster; however, more research is needed to understand best practices and the the impact of an IKT approach on the diffusion and dissemination versus a non-partnered approach.

Often, research findings do not get to the people, groups, and/or institutions who could benefit from the findings. Two ways to help move research into practice more efficiently are to: (1) work in partnership with people who may benefit most from the research findings, and (2) share and communicate the findings of research beyond scientists. However, little is known about how to work in partnership while sharing the results of a research study. Therefore, this project demonstrates how a research partnership can work while promoting the results of their research project. Overall, working in partnership while sharing research findings may further help to ensure the research results are shared with those who could benefit from those findings.

Small CBPR Grants Program: An Innovative Model to Build Sustainable Academic-Community Partnerships.

Community-based participatory research (CBPR) is an effective approach for addressing health disparities by integrating diverse knowledge and expertise from both academic and community partners throughout the research process. However, more is needed to invest in the foundational infrastructure and resources that are necessary for building and maintaining lasting trusting research partnerships and supporting them to generate impactful CBPR-based research knowledge and solutions. Small CBPR Grants Program is a CBPR-seed-funding program that may be particularly helpful to minority-serving institutions' and universities' goal to invest in genuine community-engaged participatory research. Between 2016 and 2019, the Morgan State University Prevention Sciences Research Center, in collaboration with other community and academic organizations, provided 14 small CBPR awards to new partnerships, and evaluated the success and challenges of the program over a period of three years. To achieve our goal, technical support and training were provided to these partnerships to help with their growth and success. The expected outcomes included trusting relationships and equitable partnerships, as well as publications, presentations, and new proposals and awards to work on mutually identified issues. The program's resulted in continued partnerships beyond the program (in most cases), a founded CBPR Center namely ASCEND, and several secured additional fundings. Keys to the program's success were supporting the formation of research partnerships through networking opportunities and information sessions, as well as providing small grants to incentivize the development of innovative concepts and projects. A learning network and local support group were also created to enhance productivity and the overall impact of each project.

Systematic overviews of partnership principles and strategies identified from health research about spinal cord injury and related health conditions: A scoping review.

STUDY DESIGN: Scoping review. OBJECTIVE: To identify and provide systematic overviews of partnership principles and strategies identified from health research about spinal cord injury (SCI) and related health conditions. METHODS: Four health electronic databases (Medline, Embase, CINAHL, PsycINFO) were searched from inception to March 2019. We included articles that described, reflected, and/or evaluated one or more collaborative research activities in health research about SCI, stroke, multiple sclerosis, Parkinson's disease, amputation, cerebral palsy, spina bifida, amyotrophic lateral sclerosis, acquired brain injury, or wheelchair-users. Partnership principles (i.e. norms or values) and strategies (i.e. observable actions) were extracted and analyzed using directed qualitative content analysis. RESULTS: We included 39 articles about SCI (n = 13), stroke (n = 15), multiple sclerosis (n = 5), amputation (n = 2), cerebral palsy (n = 2), Parkinson's disease (n = 1), and wheelchair users (n = 1). We extracted 110 principles and synthesized them into 13 overarching principles. Principles related to building and maintaining relationships between researchers and research users were most frequently reported. We identified 32 strategies that could be applied at various phases of the research process and 26 strategies that were specific to a research phase (planning, conduct, or dissemination). CONCLUSION: We provided systematic overviews of principles and strategies for research partnerships. These could be used by researchers and research users who want to work in partnership to plan, conduct and/or disseminate their SCI research. The findings informed the development of the new SCI Integrated Knowledge Translation Guiding Principles (www.iktprinciples.com) and will support the implementation of these Principles within the SCI research system.