Moving Population and Public Health Knowledge Into Action
Infectious and chronic diseases
- Ontario's Asthma Plan of Action: Bridging the gap between knowledge and practice
- Lessons from dissemination and capacity building in the Canadian Heart Health Initiative
- The Canadian AIDS Treatment Information Exchange
Ontario's Asthma Plan of Action: Bridging the gap between knowledge and practice
Nancy Garvey, Asthma Program Coordinator, Ontario Ministry of Health and Long-Term Care
In 2002, the Ontario Ministry of Health and Long-Term Care announced $4 million in annual funding for the province's Asthma Plan of Action, an integrated strategy of 13 initiatives, based on the Canadian Asthma Consensus Guidelines and the Canadian Thoracic Society guidelines for occupational asthma. Extensive partnerships involving researchers, clinicians, community-based organizations and policy makers have been formed to develop, implement and evaluate these pilot initiatives. Initial evaluations demonstrate noticeable improvements in uptake and practice of the asthma guidelines and will ultimately contribute to a broader provincial plan for asthma in Ontario.
Asthma is one of the most common chronic conditions in Canada. Over the past two decades, the prevalence of asthma has risen markedly in Ontario and around the world. This increase is particularly evident among school-aged children, with approximately 12% of children, and 7% of adults, in Ontario being diagnosed with asthma. Asthma is the leading cause of hospitalization for children in Ontario and is a significant cause of school and work absenteeism.Footnote 1
In 2000, following recommendations from an inquest into the death of a young asthmatic, Ontario's Ministry of Health and Long-Term Care called together an expert panel steering committee and three working groups to provide advice for a phased approach to a provincial asthma strategy. Their recommendations resulted in an evidence-based plan—the Asthma Plan of Action (APA)—that supports best practices for addressing asthma across a variety of practice settings and community environments, where people with asthma live, learn, work and play.
In January 2002, the Ontario Ministry of Health and Long-Term Care announced $4 million in annual funding for the APA, an integrated strategy of 13 initiatives, based on the Canadian Asthma Consensus GuidelinesFootnote 2,Footnote 3 and the Canadian Thoracic Society Guidelines for occupational asthma.Footnote 4 The goal of the APA is to reduce mortality, morbidity and health care costs for children and adults with asthma through integrated initiatives focused on health promotion and prevention, management and treatment and research and surveillance. Pilot projects are scheduled for completion in March 2006.
A unique feature of the APA is the partnerships that have been formed to develop, implement and evaluate these pilot initiatives. Four Ontario ministries, five public health units, five municipalities, 12 school boards, nine primary care sites, 12 non-governmental agencies and researchers from four Ontario universities, as well as the Institute for Clinical Evaluative Sciences, have been engaged for the pilot project phase. Each of the 13 initiatives is guided by an advisory committee that solicits input for development, implementation and evaluation from participants, front-line health care providers and researchers.
The KT initiative
The APA uses a trans-disciplinary approach, bringing researchers, clinicians, representative agencies and policy makers together to integrate their varied perspectives into relevant programs and services. Behavioural change for patients, providers and targeted audiences—such as teachers and school staff and agricultural and industrial workers—is supported through dissemination and implementation activities related to the asthma guidelines. Specific knowledge translation (KT) activities designed to promote guideline uptake and research capacity include needs assessments, multidisciplinary pathways, self-management programs, small group case-based learning and community- and media-based programming.
The initiatives include an asthma care program to support best practice in primary care; numerous school-based asthma education programs aimed at supporting children in successfully managing their asthma; community-based educational campaigns to address second-hand smoke in homes and cars; awareness-raising initiatives for occupational asthma in high-risk industries and agriculture; a standardized emergency management pathway for adult asthma; provider education for asthma and occupational asthma; asthma education materials for patients and providers; and asthma and occupational asthma surveillance projects.
One key APA initiative targeting individual patients and their families is the Primary Care Asthma Pilot Project (PCAPP), which is designed to facilitate KT of asthma guidelines in primary care settings through the Asthma Care Program (ACP). The ACP was developed in collaboration with the Ontario Thoracic Society, the PCAPP Design Task Force and the research team. The ACP includes an asthma care map, action plan, flow chart and generic program standards. The asthma care map prompts the use of objective measures for diagnosis, monitoring, environmental control/trigger avoidance, self-management, medication, education and regular assessment of control parameters in accordance with the asthma guidelines. Education materials are reviewed and approved by the PCAPP Task Force, which includes administrative and clinical representation from each primary care setting. Nine primary care sites, encompassing 16 locations across Ontario, are involved in the project.Footnote 5
The ACP was introduced to each site by way of a second, linked initiative called the Provider Education Project, aided by orientation by an onsite coordinator. In the Provider Education Project, led by the Ontario Thoracic Society and the Ontario Lung Association, workshops were delivered to small groups of health care providers across Ontario. The workshops included brief presentations on adult and pediatric asthma guidelines by local specialists using a standardized slide kit, followed by family practitioner-led case discussions.
A third APA initiative is the community-based Smoke-Free Homes and Asthma Project, led by the Program Training and Consultation Centre. Exposure to second-hand smoke is a known trigger factor for asthmatics, contributing to exacerbations that often result in emergency department visits and hospitalizations. Working through the local public health unit, community stakeholders support the dissemination of an information brochure in both English and French and window clings for homes and cars. The Northwestern Health Unit campaign used radio ads, community displays, "purple envelopes" containing the brochures, information sheets and window clings. The purple envelopes were advertised on the radio and distributed through schools, pharmacies, day care centres and libraries.Footnote 6
Results of the KT experience
An objective evaluation is part of each initiative's plan. Results are measured as changes in patient and/or provider practice, patient outcomes, patient and/or provider satisfaction and/or health care utilization. Initial evaluations are demonstrating statistically significant improvements in uptake and practice and will contribute to a broader provincial plan for asthma in Ontario.
A total of 351 health care providers (247 physicians and 104 allied health providers) attended workshops between September 2002 and March 2003. The workshops were very highly rated: 94% of participants reported improved confidence in asthma management and 98% of participants indicated they would recommend them to a colleague. Self-reported practice changes three months after the workshops included altered prescribing patterns, educational interventions and use of written action plans.Footnote 7
For the Smoke-Free Homes and Asthma project, an independent research company undertook a pre- and post-campaign telephone survey of randomly selected residents. Of 292 respondents who recalled the campaign, 23% reported talking to people about it afterwards and 12% reported restricting smoking after seeing, hearing or reading about it. Of 96 respondents who smoke and recalled the campaign, 30% reported changing their smoking habits after seeing, hearing or reading about smoke-free homes.
There is a learning curve as members come to appreciate varying perspectives and issues and recognize their roles should be complementary, rather than competitive.
- Multidisciplinary teamwork can be more efficient and lead to improved results. However, there is a learning curve as members come to appreciate varying perspectives and issues and recognize their roles should be complementary, rather than competitive. Conflicts can still arise. For example, clinicians' appreciation of the often-lengthy research process may still compete with their motivation to quickly implement an initiative.
- Agencies outside the health care system bring a non-medical perspective to client-centred initiatives and often identify gaps in the medical process. For example, the Farm Safety Association's input into asthma education information for agricultural and horticultural work settings identified triggers such as feather tips and fungal spores that were not previously considered as part of the asthma education approach.
- Community-based efforts support sustainable programs. Generic, evidence-based program standards can be molded by a community approach that takes local resources and processes into consideration, thus building local capacity to manage asthma.
- Partnerships beget new partnerships, which produce larger effects than any individual group could accomplish on its own. For example, the Windsor Essex County Community Asthma Care Strategy (ECCACS), funded by the Primary Health Care Transition Fund, partnered with a number of APA initiatives, which led to a joint initiative to support the Daimler-Chrysler Canada Inc./Canadian Auto Workers' award-winning "Working Toward Wellness" program. One of their healthy workplace initiatives for 2005 is the Asthma Wellness Program, planned in collaboration with ECCACS and APA agencies.
Conclusions and implications
The development, implementation and evaluation of the APA initiatives support programs and practices that take local resources and the needs of the local patient population into account, with the aim of integrating best practice into medical care and home, work, school and social environments. With a strong focus on primary care and school/work settings, health promotion and early intervention efforts are intended to reduce health care utilization and improve patient outcomes.
Researchers from a number of the APA initiatives are working in collaboration with staff from other provinces to share their experiences. For example, University of Toronto researchers are working with researchers at the Alberta Asthma Centre in Edmonton on the implementation of two school-based asthma educational initiatives. There is also interest from other provinces in the surveillance systems to be used as a key tool for monitoring performance indicators on an ongoing basis.
In the future, the APA initiatives will continue to be reviewed, revised and reassessed to ensure relevance. As well, ongoing guideline updates for front-line providers, patients and targeted audiences will continue to support translation of research knowledge to practice. Results of the pilot projects will contribute to the next phase of the Ontario asthma strategy.
Lessons from dissemination and capacity building in the Canadian Heart Health Initiative
Kerry Robinson, McMaster University
Dr. Susan Elliott, McMaster University
Dr. Jennifer O'Loughlin, McGill University
Dr. Roy Cameron, University of Waterloo
Dr. John Eyles, McMaster University
Dr. Dexter Harvey, University of Manitoba
The Canadian Heart Health Dissemination Project (CHHDP) brings together learnings from a long-running series of provincial projects designed to conduct research and interventions to inform cardiovascular disease prevention policies and practices. With a focus on the relationships between dissemination and capacity building, the CHHDP highlights opportunities to support health promotion efforts by considering both organizational and environmental factors. Effective capacity building and dissemination appear to require appropriately skilled and committed people, strong communication channels through extended networks, the commitment of both research and policy/practice groups and senior level buy-in.
The Canadian Heart Health Dissemination Project (CHHDP) is a six-year, CIHR-funded project (2000-2006) focusing on a synthesis of learnings from the provincial dissemination projects that make up the Canadian Heart Health Initiative (CHHI). Over the past 15 years, the CHHI, under leadership from Health Canada, has brought together researchers and public health leaders in each province to conduct research and interventions to inform cardiovascular disease prevention policies and practices.
To reduce preventable deaths from chronic diseases, evidence-based approaches must be disseminated across public health systems. To succeed, we must also build capacity to disseminate practical and effective health promotion strategies. The primary goal of the CHHDP is to advance our understanding of dissemination research and capacity building in order to more effectively deliver heart health promotion in Canada.
The CHHDP focuses on the relationship between dissemination and capacity, drawing on knowledge from a range of provincial health system contexts, types of public health organizations and intervention approaches. Our key audiences include the Public Health Agency of Canada (PHAC), the Pan-Canadian Public Health Network, the Chronic Disease Prevention Alliance of Canada (CDPAC) and the Intersectoral Healthy Living Network, as well as provincial ministries of health and regional health organizations responsible for planning and implementing chronic disease prevention and healthy living activities.
The KT initiative
The CHHDP is guided by five objectives:
- to understand the concepts of capacity and dissemination;
- to measure current levels of chronic disease prevention capacity and dissemination;
- to explore effective interventions used to guide dissemination and how they have influenced capacity building;
- to examine contextual factors affecting dissemination interventions and research processes; and
- to identify the factors that support or impede these processes.
This synthesis research program required collaborative partnerships with researchers from the provincial dissemination projects, and has been built around linkage and exchange. We employed a combination of comparative case studies of provincial projects and a national cross-sectional survey. Both qualitative and quantitative data were collected: qualitative analysis of project reports, interviews and health policy documents, and quantitative data collection using a national survey of public health resource and program delivery organizations.Footnote 8,Footnote 9
We were guided by strategic and research advisory groups made up of research and policy representatives from each province, as well as ongoing communication with CDPAC and PHAC. We built upon existing research/policy partnerships developed by each provincial heart health dissemination project at regional and provincial levels and existing relationships at the federal level (e.g. with Health Canada and the Heart and Stroke Foundation of Canada).
We have worked in partnership to refine our objectives, inform methods and tools, validate research findings and shape dissemination activities. We also contributed to capacity building and knowledge exchange through the sponsorship and organization of a supplemental journal issue collecting papers from each CHHI provincial projectFootnote 10 and sponsorship of provincial projects to present findings at national conferences. Ongoing linkage and exchange were facilitated by annual face-to-face advisory group meetings; regular e-mail communication focused on review and feedback; regular one-on-one telephone communication; electronic newsletters; ad hoc regional teleconferences; and a national project website housing project publications, presentations, and meeting minutes.
Results of the KT experience
On their own, information sharing and communication are insufficient to successfully support knowledge uptake among public health organizations.
Our results reveal that dissemination is understood as an active and planned series of steps reflecting a transfer process as well as an uptake or implementation process.Footnote * Capacity building—that is, efforts to enhance the ability of an organization to effectively plan, implement, evaluate and sustain health promotion efforts—was found to not only be a complementary and closely-related strategy to dissemination, but essential to ensuring uptake and use of research and practice innovations. On their own, information sharing and communication are insufficient to successfully support knowledge uptake among public health organizations.
Effective dissemination was found to be based on a knowledge exchange process between resource groups (research and intervention staff) and public health user groups, including active efforts to enhance will/commitment, knowledge, skills, leadership, resources, infrastructure and partnerships.
The most commonly used capacity building and dissemination strategies across the projects included communication activities (meetings, electronic media, teleconferences and newsletters); collaboration/partnership development; resource provision (information and financial); workshops/training; networking (peer exchange); facilitation; and linking systems and individuals (to maintain communication between resource and user groups).
The most frequently identified characteristics of effective capacity building and dissemination centred on having a leader or champion within the public health user group; cultivating relationships and buy-in among user groups; providing adequate resources to support capacity building and dissemination; providing user groups with access to central resource staff for technical assistance; and tailoring interventions to the needs of user groups.
Our qualitative and secondary quantitative analysis revealed a number of areas of health promotion capacity and programming that showed growth during the six provincial projects. However, these projects and their interventions did not exist in a vacuum; other provincial health system changes, professional development opportunities and health promotion initiatives occurred concurrently and often in partnership with the provincial projects. Observed changes must be seen in this broader context.
Overall, there is not a consistent pattern across provincial projects in terms of evidence of effectiveness of their capacity building and dissemination interventions. For two provinces, British Columbia and Saskatchewan, there was documented growth in capacity elements in some regions and decreases in others. This is likely to be related to the destabilizing role of provincial health system reform, which affected project activities. However, in the other four provinces (Ontario, Manitoba, Prince Edward Island, and Newfoundland), a range of positive changes was documented in most, if not all, elements of both chronic disease prevention/healthy living capacity and implementation, including knowledge and skill development, partnerships, resource acquisition, organizational structure, level of program delivery, scope/type of programming and program sustainability.
The findings from all projects show that a common set of factors act as facilitators or barriers to both capacity building and dissemination:
- Appropriately skilled/committed people
- Communication channels/processes
- Structure/internal coordination
The main difference between factors influencing capacity building versus dissemination is that the presence or absence of partnerships appears to play a more prominent role in dissemination, while having leadership among public health user groups appears to be more important for capacity building. Finally, a number of broader provincial contextual factors were found to influence public health capacity and program implementation, such as provincial health system reform, geography and demographics, socioeconomic climate, political climate, provincial leadership and provincial culture.
These findings highlight opportunities to support health promotion capacity building and dissemination by considering both organizational and provincial environmental factors. The recurring importance of having appropriately skilled and committed people suggests that ongoing professional development opportunities for regional health staff and volunteers, along with having central provincial resource staff to provide facilitation, resources and technical support, are key. Moreover, provincial and regional health organizations must not only explicitly identify health promotion priorities, but they must also protect health promotion time and resources against competing issues or crises. Perhaps most important for creating such an environment is the need for research and practice organizations to foster health promotion champions that are able to support knowledge translation.
Sustainability is also important. Provincial departments and regional health organizations need to coordinate their priorities and work together to minimize disruptions to front-line practice during times of reform and system instability. Like health promotion practice itself, there is no single strategy or approach that works best for capacity building and dissemination. Rather, multiple strategies that can be tailored to public health user organization needs, and that target front-line staff, senior leadership and organizational cultures, are required.
Conclusions and implications
Based on both our research findings and the dissemination research literature, we developed a unified model of dissemination that can be used with a range of public health organizations and contexts. Three overriding themes were identified: a two-way interactive exchange process is most likely to succeed; dissemination involves multiple steps to facilitate transfer and uptake, including capacity building; and dissemination depends on key linking individuals from user and resource groups to facilitate communication and lead joint activities.
While there is no gold standard method for dissemination, it must be actively initiated and include the commitment of research and policy/practice groups, strong communication channels through joint groups or extended networks and senior level buy-in and appropriately skilled people dedicated to linking and facilitation roles.
The findings presented here provide part of the picture of healthy living and chronic disease prevention capacity building and dissemination in Canada. As the CHHDP draws to a close, it will further broaden our understanding of not only what works and under what conditions, but what the remaining policy/practice needs are in Canada as policy shifts towards chronic disease prevention and healthy living promotion. An ongoing step in this national synthesis work is knowledge exchange with decision-making audiences to facilitate translation of these learnings into public health policy and practice.
The Canadian AIDS Treatment Information Exchange
Timothy Rogers, PhD, Canadian AIDS Treatment Information Exchange
The Canadian AIDS Treatment Information Exchange (CATIE) is a highly successful national HIV/AIDS treatment information service. Working in partnership with a network of other information providers, CATIE develops and disseminates plain-language, research-based treatment information; brings together people living with HIV/AIDS, researchers and health care providers to facilitate knowledge exchange; and conducts community-based research to inform research priorities and policy development. CATIE's success is due in part to its commitment to community-based development, mobilizing individuals and communities to respond to treatment issues, and connecting to regional initiatives.
Since the beginning of the HIV/AIDS epidemic in the 1980s, the tremendous advancements in its management have been driven by fast-paced developments in clinical, epidemiological, social and basic science research. Throughout this time, knowledge translation (KT) has played a pivotal role in improving the health of affected individuals and communities.
The Canadian AIDS Treatment Information Exchange (CATIE)Footnote ** grew out of the early community-based advocacy movement to improve HIV health policy and health care. At a time when the medical community had little to offer people living with HIV/AIDS, CATIE was one of the first organizations in Canada to systematically assemble and disseminate treatment information. For communities devastated by the epidemic, "the idea that information could save lives was revolutionary".Footnote 11
Since the early 1990s, CATIE has expanded from a local, Toronto-based group to a national, bilingual treatment information service, largely through the support of Health Canada's national HIV/AIDS strategy. Our mission is to improve the health and quality of life of people living with HIV/AIDS in Canada by providing them, and the people and organizations that support them, with accessible, accurate, unbiased and timely treatment information. We work in partnership with a network of other information providers (including researchers, health care providers and peers) to ensure that people have access to the information they need, in the form they desire, to make informed health care choices.
The KT initiative
KT—bringing emerging research developments to people who can benefit from the knowledge, and helping to ensure the experiences of individuals and communities affected by HIV inform further research—is a core function for CATIE. Our key KT goals are to promote the empowerment of people living with HIV/AIDS and their caregivers to make informed health care decisions; build the KT capacity of the loosely-structured HIV/AIDS treatment information network throughout Canada; and serve the evolving HIV/AIDS treatment information needs of diverse communities in partnership with community organizations.
Our KT activities include:
- Providing research-based information (including developments in clinical and population-based research) in meaningful, plain-language formats through multiple channels (print, electronic, telephone, website and workshops/forums).
- Developing partnerships with vulnerable communities to identify, research and address barriers to treatment and to knowledge building in health management.
- Bringing together communities of care (people living with HIV/AIDS, researchers, health care providers, caregivers) to facilitate knowledge exchange.
- Working in partnership to conduct community-based research and to inform research priorities and policy development.
Our evaluations have consistently shown that people want quality treatment information from trusted sources.Footnote 11,Footnote 12 Quality treatment information is accurate, timely, research-based, unbiased and comprehensive. For people living with HIV/AIDS, quality information is also accessible, meaningful and contextual.
We have a community health advisory committee composed of HIV researchers, physicians, nurses and community leaders who provide ongoing input on emerging research and clinical trends to which we should be responding. They worked with us to establish a research and information assessment strategy, which includes guidelines about reviewing, assessing and using different sources for treatment information (such as informed expertise, expert-reviewed literature and experiential information). They also help us identify leading physicians, pharmacists and other health care providers whom we use as expert reviewers, presenters and writers. In addition to information on conventional medicine, we provide research-based information on nutrition and complementary therapies and have worked closely with the Natural Health Products Directorate to promote KT in this sector. We have also established a partnership with the Canadian HIV Trials Network to provide information on clinical trials currently enrolling in Canada.
Results of the KT experience
CATIE's model has proven itself in many evaluation studies and through feedback with service users over the past 14 years. A 2002 evaluation found "the primary outcome of CATIE was accessible and trustworthy treatment information presented from a Canadian perspective and in a manner that empowered information users (both individuals and organizations)".Footnote 12 It also found that the evolution of CATIE to a national organization has had an important impact on the overall network of HIV treatment information providers.
HIV disproportionately affects vulnerable populations already marginalized from the health care system. We have found that community-based development plays an important role in bringing successful KT to these groups. We have worked with AIDS service organizations providing services to specific ethnocultural groups to support the creation of culturally sensitive, multilingual treatment information. Through a partnership among a children's hospital, a youth-based AIDS service organization, community-based researchers and others, we have investigated the needs of HIV-positive youth and are currently developing a youth-oriented website for HIV treatment information. In another collaborative research project involving universities, rural AIDS service organizations and local public health workers, we are looking at treatment information networks in rural communities and how best to address barriers to KT.
The expansion to a national service-based organization was very difficult for CATIE. Our challenge was to maintain strong community-based roots while addressing the daunting diversity of regional needs and issues. We first tried a governance structure with a local board of directors and a national advisory committee. However, this did not allow for adequate regional engagement and we moved to a fully national board.
As a national organization, CATIE was originally envisioned as a service directly to end users of the information, most importantly people living with HIV/AIDS. But creating awareness of such a service was a significant challenge with our limited funding. Moreover, an environmental scan showed that many people living with HIV/AIDS preferred to get their treatment information from local sources with whom they had an existing relationship. The availability and quality of such information also varied enormously throughout the country.Footnote 13 This led us to develop stronger partnerships with local community-based organizations and to assume a leadership role in building the capacity of existing networks to manage, exchange and disseminate treatment information.
We have had to adapt our KT strategies to the constantly changing HIV/AIDS environment—from communication technologies, to audiences, to the pace of research developments. While we originally focused on a 1-800 phone line and printed publications to reach a pan-Canadian audience, our website has since grown into our most important vehicle for information dissemination, with more than 10,000 pages of content and more than 650,000 visits per year.
In the beginning, our information was targeted to an educated, middle-class, gay population that was thirsty for information. However, as the epidemic spread to other marginalized populations, we have had to grapple with issues such as ethnocultural diversity, gender-specific needs, harm reduction, co-infections and low health literacy.
More recently, the KT environment is probably best characterized as “treatment information overload” and a major challenge is to help people sort through the massive amounts of research information available.
We have also adapted our services through a changing landscape of research and knowledge building. In the early days, there were no drug treatments for HIV. The focus was on preventing and treating AIDS-related infections/conditions and treatment information went hand-in-hand with advocacy. In the mid-1990s, antiretroviral treatments started to show promise in clinical trials and an explosion of treatment information began—suddenly, clinical practice could change monthly as new research developments were reported. More recently, the KT environment is probably best characterized as "treatment information overload" and a major challenge is to help people sort through the massive amounts of research information available.
Conclusions and implications
In a review of CATIE's program and service evaluations completed over the past few years, we identified the following elements as crucial to our success, and hope they can inform KT activities in other areas of population and public health.Footnote 14
We mobilize individuals and communities to respond to HIV/AIDS treatment issues by working in partnerships and connecting to regional initiatives. We have found that a capacity development approach is most successful, which includes supporting leadership, organizational development and community organizing around KT. The ongoing involvement of people living with HIV/AIDS and their communities is essential.
The creation of quality information involves engaging all stakeholders in the KT process—researchers, clinicians, community leaders and people living with HIV/AIDS.
We develop products and services that are both research based and relevant to community needs. The creation of quality information involves engaging all stakeholders in the KT process—researchers, clinicians, community leaders and people living with HIV/AIDS.
We ensure that our products and services are right for our target audiences. We provide treatment information through multiple channels, targeting diverse audiences with information that "speaks to them", providing context for treatment information and being a responsive community presence.
Promoting empowerment through information
Drawing from learner-centred principles of adult education, we work to support people living with HIV/AIDS and their caregivers to develop their capacities for researching, assessing, understanding and making use of treatment information. Through this, we help people make informed decisions, build successful health care relationships and act on the health issues that are important to them.
Considering all determinants of health
Health is determined by complex interactions among social and economic factors, the physical environment, and individual behaviour. As a result, we work from a broad concept of treatment, and attempt to impact both social factors and individual health behaviours.
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