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Background

Implementation of evidence-based mental health assessment and intervention in community public health practice is a high priority for multiple stakeholders. Academic-community partnerships can assist in the implementation of efficacious treatments in community settings; yet, little is known about the processes by which these collaborations are developed. In this paper, we discuss our application of community-based participatory research (CBPR) approach to implementation, and we present six lessons we have learned from the establishment of an academic-community partnership.

Methods

With older adults with psychosis as a focus, we have developed a partnership between a university research center and a public mental health service system based on CBPR. The long-term goal of the partnership is to collaboratively establish an evidence-based implementation network that is sustainable within the public mental healthcare system.

Results

In building a sustainable partnership, we found that the following lessons were instrumental: changing attitudes; sharing staff; expecting obstacles and formalizing solutions; monitoring and evaluating; adapting and adjusting; and taking advantage of emerging opportunities. Some of these lessons were previously known principles that were modified as the result of the CBPR process, while some lessons derived directly from the interactive process of forming the partnership.

Conclusion

The process of forming of academic-public partnerships is challenging and time consuming, yet crucial for the development and implementation of state-of-the-art approaches to assessment and interventions to improve the functioning and quality of life for persons with serious mental illnesses. These partnerships provide necessary organizational support to facilitate the implementation of clinical research findings in community practice benefiting consumers, researchers, and providers.

Background

African Americans bear an unequal burden of breast, cervical, and colorectal cancer. The Deep South Network for Cancer Control (DSN) is a community–academic partnership operating in Alabama and Mississippi that was funded by the National Cancer Institute (NCI) to address cancer disparities using community-based participatory research approaches.

Objective

In addition to reporting on the plans of this work in progress, we describe the participatory process that local residents and the DSN used to identify needs and priorities, and elaborate on lessons learned from applying a participatory approach to the development of a community action plan.

Methods

We conducted 24 community discussion groups involving health care professionals, government officials, faith-based leaders, and other stakeholders to identify cancer health disparity needs, community resources/assets, and county priorities to eliminate cancer health disparities. To develop a community action plan, four working groups explored the themes that emerged from the discussion groups, taking into consideration evidence-based strategies and promising community practices.

Results

The DSN formulated a community action plan focusing on (1) increasing physical activity by implementing a campaign for individual-level focused activity; (2) increasing the consumption of fruits and vegetables by implementing NCI’s Body and Soul Program in local churches; (3) increasing cancer screening by raising awareness through individual, system, and provider agents of change; and (4) training community partners to become effective advocates.

Conclusions

A community–academic partnership must involve trust, respect, and an appreciation of partners’ strengths and differences. The DSN applied these guiding principles and learned pivotal lessons.

Conclusion

There is high-quality information in public health that can, and should, be used for developing, implementing, and evaluating public health policies and programs. Problems often exist in finding this quality information or the data that can be used for its development. Even when the information may exist, it is not always accessed or recognized for its potential usefulness. Training individuals on how to access information, to assess quality, and to use information that already is available is crucial. In addition, investing in the cataloging of quality information and in establishing “authoritative” sources of quality information can increase substantially the use of data for public health policies and programs.

There also remains the need to develop new public health information sources, particularly in the areas of infrastructure and best practices. More complete and higher-quality information in these areas will lead to the development of better tools for enabling our public health system to operate more efficiently and effectively.

In recent years there has been increasing recognition of the importance of strategic research communication. Health research organisations need to be able to communicate their research effectively to increase the probability that the findings influence policy and practice, and benefit those in greatest need. Many research funders are making communications a requirement of research funding. This paper reflects on the experience in developing and implementing communications strategies of several Research Programme Consortia funded by the Department for International Development.

Different research topics will require different communications approaches in order to be effective. This is reflected in the diversity of strategies employed by different research programmes. Strategic research communications designed to influence policy and practice require different skills and expertise from those required for carrying out research and writing it up for publication in academic journals. Therefore researchers involved in communicating research should be supported in this work. One of the ways in which research programme consortia have sought to do this is through convening workshops to develop the communications skills of researchers from partner organisations. These have proven invaluable. Another way of providing ongoing support to those involved in communicating research is through a Communications Community of Practice. Where this has been used it has proven a good way to support researchers both with ideas and resources, but also a strong sense of belonging to a community that shares a common concern with communication. Developing strong partnerships with research users, other research organisations, knowledge intermediaries and other stakeholders is vital for effective communication.

Embracing the challenges and opportunities presented by communicating research to influence policy practice is vital if research is to have maximum possible impact, and demonstrate its worth at a time when funding for health and development activities is at risk. Sharing lessons learnt in this process between research programmes is important to support this work.

At present, evidence-based programs (EBPs) to reduce youth violence are failing to translate into widespread community practice, despite their potential for impact on this pervasive public health problem. In this paper we address two types of challenges in the achievement of such impact, drawing upon lessons from the implementation of a partnership model called PROSPER. First, we address five key challenges in the achievement of community-level impact through effective community planning and action: readiness and mobilization of community teams; maintaining EBP implementation quality; sustaining community teams and EBPs; demonstrating community-level impact; and continuous, proactive technical assistance. Second, we consider grand challenges in the large-scale translation of EBPs: (1) building, linking and expanding existing infrastructures to support effective EBP delivery systems, and (2) organizing networks of practitioner-scientist partnerships—networks designed to integrate diffusion of EBPs with research that examines effective strategies to do so. The PROSPER partnership model is an evidence-based delivery system for community-based prevention and has evolved through two decades of NIH-funded research, assisted by land grant universities' Cooperative Extension Systems. Findings and lessons of relevance to each of the challenges are summarized. In this context, we outline how practitioner-scientist partnerships can serve to transform EBP delivery systems, particularly in conjunction with supportive federal policy.

BACKGROUND:

High blood pressure (BP) is an established and modifiable cardiovascular risk factor; however, awareness and management of this primarily asymptomatic disease remains suboptimal.

OBJECTIVES:

The Airdrie Community Hypertension Awareness and Management Program (A-CHAMP) was a community-based BP program for seniors designed to improve public and health care provider awareness and management of hypertension.

METHODS:

Volunteer peer health educators (VPHEs) were recruited from the community and trained to manage BP screening sessions in local pharmacies. Airdrie (Alberta) residents 65 years of age and older were invited by their family physicians (FPs) to attend the A-CHAMP sessions. VPHEs identified participants’ cardiovascular risk factors, assessed BP with a validated automated device and implemented a management algorithm. Participants with BP higher than 159/99 mmHg were directed to their pharmacists and FPs. All participants with elevated BP at the initial A-CHAMP session were invited to return to a follow-up session four to six months later.

RESULTS:

Thirty VPHEs were recruited and trained. All 15 FPs and all six pharmacies in Airdrie participated. VPHEs assessed 406 seniors (approximately 40% of Airdrie seniors) during the three-month program. One hundred forty-eight participants (36.5%) had elevated BP at their first session. Of these, 71% returned for the follow-up session four to six months later. The mean (± SD) systolic BP decreased by 16.9±17.2 mmHg (P<0.05, n=105) compared with their first visit, and 56% of participants (59 of 105) reached Canadian targets for BP.

CONCLUSIONS:

A-CHAMP raised awareness, and identified and managed seniors with hypertension. At follow-up, BP showed statistically and clinically significant and sustained improvement. Participating health care providers and VPHEs indicated that A-CHAMP was effective and feasible in improving awareness and control of hypertension.

Background

The Centers for Disease Control and Prevention's (CDC's) Prevention Research Centers (PRC) Program underwent a 2-year evaluation planning project using a participatory process that allowed perspectives from the national community of PRC partners to be expressed and reflected in a national logic model.

Context

The PRC Program recognized the challenge in developing a feasible, useable, and relevant evaluation process for a large, diverse program. To address the challenge, participatory and utilization-focused evaluation models were used.

Methods

Four tactics guided the evaluation planning process: 1) assessing stakeholders' communication needs and existing communication mechanisms and infrastructure; 2) using existing mechanisms and establishing others as needed to inform, educate, and request feedback; 3) listening to and using feedback received; and 4) obtaining adequate resources and building flexibility into the project plan to support multifaceted mechanisms for data collection.

Consequences

Participatory methods resulted in buy-in from stakeholders and the development of a national logic model. Benefits included CDC's use of the logic model for program planning and development of a national evaluation protocol and increased expectations among PRC partners for involvement. Challenges included the time, effort, and investment of program resources required for the participatory approach and the identification of whom to engage and when to engage them for feedback on project decisions.

Interpretation

By using a participatory and utilization-focused model, program partners positively influenced how CDC developed an evaluation plan. The tactics we used can guide the involvement of program stakeholders and help with decisions on appropriate methods and approaches for engaging partners.

In July 1994, tropical storm Alberto brought heavy rains to parts of Alabama, Florida, and Georgia. In South Georgia, rivers rose 44 feet above flood stage, muddy water covered 10,000 square miles, and 31 lives were lost. In implementing the Health and Medical Services portion of the FEMA Federal Response Plan, the Public Health Service learned lessons from this experience that can be applied to planning for other natural disasters. Continuous reassessment to assure the best utilization of resources in rapidly changing conditions, cross-training in the content of emergency plans at all levels, and on-going face-to-face liaison among response managers will improve response efforts. Populations with special medical needs must become part of any response design. The effects that any response activity may have on the community as a whole should be carefully considered before action is taken.

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Objective

Innovative approaches can strengthen patient-caregiver-clinician information exchange and more effectively address the physical and psychosocial challenges of advanced disease. This study reports initial findings from implementation of the Clinician Report (CR)—a patient and caregiver status report tool accessible by the oncology clinic team.

Design

The CR tracks and communicates essential information from cancer patients and caregivers to the oncology team. The CR conveys patient symptoms, emotional strain, and key concerns.

Measurements

Authors used a model developed to explain acceptance, implementation, and sustainability of Interactive Health Communication Systems (IHCS) to evaluate implementation of the new CR system. The study carried out qualitative analyses of interviews with clinicians regarding their experience utilizing the Clinician Report.

Results

Primary CR benefits included enhancement of patients' clinic visit experiences, greater caregiver involvement, and facilitation of earlier interventions. Challenges included CR functional issues, users' desire for greater depth of information, user privacy concerns, and limited patient use. These findings are discussed using parameters of the implementation model. Limitations of this study include its small clinician sample size, which represented only a portion of existing organizational settings in which CR systems might be implemented.

Conclusion

Though in its early implementation stages, the CR demonstrates the potential to positively impact care delivery in the cancer clinic setting, particularly by facilitating earlier interventions and improving patient-caregiver-clinician communication both during and between clinic visits.

Background

In order to investigate and monitor environmental health in Flanders (the Dutch speaking part of Belgium), the Flemish government funded the Centre of Expertise for Environment and Health, which started a human biomonitoring campaign in 2001. In addition to environmental health experts measuring environmental pollutants and health effects in human beings, social scientific experts at the Centre focus on risk communication associated with the human biomonitoring campaign.

Methods

In the literature about risk communication an evolution can be traced from traditional, one-way communication, restricted to the dissemination of information from experts to the public, to more modern, two-way risk communication, with a focus on participation and cooperation between scientists, policy-makers and the public.

Within the Centre of Expertise for Environment and Health this discourse was first translated into some general principles and guidelines for external communication, at a 'Ten Commandments level'. These principles needed to be incorporated in the day-to-day practice of human biomonitoring research.

Results

The social scientific experts at the Centre developed a combined risk communication strategy. On the one hand the strategy consists of traditional risk communication for external communication purposes, for example information meetings and digital newsletters. On the other hand it consists of a step by step approach of incorporating more modern risk communication, for example a risk perception questionnaire, dialogical experiments for involving local stakeholders, and an action-plan for interpreting results for policy making.

Conclusion

With a parallel strategy of traditional and modern communication, of external and internal reflection, and through different social scientific projects, the Flemish Centre of Expertise of Environment and Health incorporates risk communication in the day-to-day practice of human biomonitoring research. A direct and continuous involvement of the social scientist, an openness between all colleagues involved, and the awareness of a fine balance between quality and practicability are important success factors. These lessons may be helpful and inspirational for a European human biomonitoring project.

Over the past several decades there has been growing evidence of the increase in incidence rates, morbidity, and mortality for a number of health problems experienced by children. The causation and aggravation of these problems are complex and multifactorial. The burden of these health problems and environmental exposures is borne disproportionately by children from low-income communities and communities of color. Researchers and funding institutions have called for increased attention to the complex issues that affect the health of children living in marginalized communities—and communities more broadly—and have suggested greater community involvement in processes that shape research and intervention approaches, for example, through community-based participatory research (CBPR) partnerships among academic, health services, public health, and community-based organizations. Centers for Children’s Environmental Health and Disease Prevention Research (Children’s Centers) funded by the National Institute of Environmental Health Sciences and U.S. Environmental Protection Agency were required to include a CBPR project. The purpose of this article is to provide a definition and set of CBPR principles, to describe the rationale for and major benefits of using this approach, to draw on the experiences of six of the Children’s Centers in using CBPR, and to provide lessons learned and recommendations for how to successfully establish and maintain CBPR partnerships aimed at enhancing our understanding and addressing the multiple determinants of children’s health.

Background

Experimentation with continuous quality improvement (CQI) processes is well underway in Indigenous Australian primary health care. To date, little research into how health organizations take up, support, and embed these complex innovations is available on which services can draw to inform implementation. In this paper, we examine the practices and processes in the policy and organisational contexts, and aim to explore the ways in which they interact to support and/or hinder services' participation in a large scale Indigenous primary health care CQI program.

Methods

We took a theory-driven approach, drawing on literature on the theory and effectiveness of CQI systems and the Greenhalgh diffusion of innovation framework. Data included routinely collected regional and service profile data; uptake of tools and progress through the first CQI cycle, and data collected quarterly from hub coordinators on their perceptions of barriers and enablers. A total of 48 interviews were also conducted with key people involved in the development, dissemination, and implementation of the Audit and Best Practice for Chronic Disease (ABCD) project. We compiled the various data, conducted thematic analyses, and developed an in-depth narrative account of the processes of uptake and diffusion into services.

Results

Uptake of CQI was a complex and messy process that happened in fits and starts, was often characterised by conflicts and tensions, and was iterative, reactive, and transformational. Despite initial enthusiasm, the mixed successes during the first cycle were associated with the interaction of features of the environment, the service, the quality improvement process, and the stakeholders, which operated to produce a set of circumstances that either inhibited or enabled the process of change. Organisations had different levels of capacity to mobilize resources that could shift the balance toward supporting implementation. Different forms of leadership and organisational linkages were critical to success. The Greenhalgh framework provided a useful starting point for investigation, but we believe it is more a descriptive than explanatory model. As such, it has limitations in the extent to which it could assist us in understanding the interactions of the practices and processes that we observed at different levels of the system.

Summary

Taking up CQI involved engaging multiple stakeholders in new relationships that could support services to construct shared meaning and purpose, operationalise key concepts and tools, and develop and embed new practices into services systems and routines. Promoting quality improvement requires a system approach and organization-wide commitment. At the organization level, a formal high-level mandate, leadership at all levels, and resources to support implementation are needed. At the broader system level, governance arrangements that can fulfil a number of policy objectives related to articulating the linkages between CQI and other aspects of the regulatory, financing, and performance frameworks within the health system would help define a role and vision for quality improvement.

Background

Longitudinal qualitative methods are becoming increasingly used in the health service research, but the method and challenges particular to health care settings are not well described in the literature.We reflect on the strategies used in a longitudinal qualitative study to explore the experience of symptoms in cancer patients and their carers, following participants from diagnosis for twelve months; we highlight ethical, practical, theoretical and methodological issues that need to be considered and addressed from the outset of a longitudinal qualitative study.

Results

Key considerations in undertaking longitudinal qualitative projects in health research, include the use of theory, utilizing multiple methods of analysis and giving consideration to the practical and ethical issues at an early stage. These can include issues of time and timing; data collection processes; changing the topic guide over time; recruitment considerations; retention of staff; issues around confidentiality; effects of project on staff and patients, and analyzing data within and across time.

Conclusions

As longitudinal qualitative methods are becoming increasingly used in health services research, the methodological and practical challenges particular to health care settings need more robust approaches and conceptual improvement. We provide recommendations for the use of such designs. We have a particular focus on cancer patients, so this paper will have particular relevance for researchers interested in chronic and life limiting conditions.

In the mid-1990s, several state and county public health departments implemented interactive software systems that provided easy access to public health-related data for local boards of health, other public health agencies, health care providers, community groups, and other interested members of the public. Based on their experiences with two well-established state interactive systems and one well-established county system, the authors summarize lessons that could prove useful to state and local public health agencies interested in developing new interactive systems or adapting existing ones. The article addresses issues such as: basing interactive systems on a broad definition of health, designing systems to incorporate user preferences, moving from data warehouses to information warehouses, and fostering prevention communities. Finally, the article provides recommendations to assist federal, state, and local public health agencies in developing the next generation of interactive data access systems.

Disease surveillance has a century-long tradition in public health, and environmental data have been collected at a national level by the U.S. Environmental Protection Agency for several decades. Recently, the Centers for Disease Control and Prevention announced an initiative to develop a national environmental public health tracking (EPHT) network with “linkage” of existing environmental and chronic disease data as a central goal. On the basis of experience with long-established disease surveillance systems, in this article we suggest how a system capable of linking routinely collected disease and exposure data should be developed, but caution that formal linkage of data is not the only approach required for an effective EPHT program. The primary operational goal of EPHT has to be the “treatment” of the environment to prevent and/or reduce exposures and minimize population risk for developing chronic diseases. Chronic, multifactorial diseases do not lend themselves to data-driven evaluations of intervention strategies, time trends, exposure patterns, or identification of at-risk populations based only on routinely collected surveillance data. Thus, EPHT should be synonymous with a dynamic process requiring regular system updates to a) incorporate new technologies to improve population-level exposure and disease assessment, b) allow public dissemination of new data that become available, c) allow the policy community to address new and emerging exposures and disease “threads,” and d) evaluate the effectiveness of EPHT over some appropriate time interval. It will be necessary to weigh the benefits of surveillance against its costs, but the major challenge will be to maintain support for this important new system.

Background

Interest in community-based interventions (CBIs) for health promotion is increasing, with a lot of recent activity in the field. This paper aims, from a state government perspective, to examine the experience of funding and managing six obesity prevention CBIs, to identify lessons learned and to consider the implications for future investment. Specifically, we focus on the planning, government support, evaluation, research and workforce development required.

Methods

The lessons presented in this paper come from analysis of key project documents, the experience of the authors in managing the projects and from feedback obtained from key program stakeholders.

Results

CBIs require careful management, including sufficient planning time and clear governance structures. Selection of interventions should be based on evidence and tailored to local needs to ensure adequate penetration in the community. Workforce and community capacity must be assessed and addressed when selecting communities. Supporting the health promotion workforce to become adequately skilled and experienced in evaluation and research is also necessary before implementation.

Comprehensive evaluation of future projects is challenging on both technical and affordability grounds. Greater emphasis may be needed on process evaluation complemented by organisation-level measures of impact and monitoring of nutrition and physical activity behaviours.

Conclusions

CBIs offer potential as one of a mix of approaches to obesity prevention. If successful approaches are to be expanded, care must be taken to incorporate lessons from existing and past projects. To do this, government must show strong leadership and work in partnership with the research community and local practitioners.

Objectives

To document and assess the experiences of 104 Agency for Healthcare Research and Quality (AHRQ)-funded health information technology (health IT) grantees in planning and implementing health IT systems.

Data Source

Grant proposals and interviews with the AHRQ health IT grantees.

Data Collection Method

Extracted descriptive data from the health IT grant proposals; conducted telephone interviews with principal investigators.

Principal Findings

AHRQ funding of the health IT projects provided important support for health IT development work in various health care settings. Successful implementation required commitment from top management, dedicated staff and financial resources, an open process to encourage buy-in and enthusiasm by end users, and sheer persistence. Technologies required tailoring to the specific organization's needs. Grantees felt their projects could be replicated by others, if organizations had ample IT expertise and resources. Evaluating the value of health IT was hampered by the absence of validated instruments and measures, organizational demands that competed with data collection, and lack of evaluation expertise among health IT implementers.

Conclusions

Experiences of the health IT grantees provide rich information for use by health care providers, AHRQ, and other policy makers to help strengthen future health IT development efforts, including the need to improve evaluation design and standards to assess impact.

Background

Violence against women (VAW) is a major public health problem. Translation of VAW research to policy and practice is an area that remains understudied, but provides the opportunity to examine knowledge translation and exchange (KTE) processes in a complex, multi-stakeholder context. In a series of studies including two randomized trials, the McMaster University VAW Research Program studied one key research gap: evidence about the effectiveness of screening women for exposure to intimate partner violence. This project developed and evaluated KTE strategies to share research findings with policymakers, health and community service providers, and women's advocates.

Methods

A longitudinal cross-sectional design, applying concurrent mixed data collection methods (surveys, interviews, and focus groups), was used to evaluate the utility of specific KTE strategies, including a series of workshops and a day-long Family Violence Knowledge Exchange Forum, on research sharing, uptake, and use.

Results

Participants valued the opportunity to meet with researchers, provide feedback on key messages, and make personal connections with other stakeholders. A number of factors specific to the knowledge itself, stakeholders' contexts, and the nature of the knowledge gap being addressed influenced the uptake, sharing, and use of the research. The types of knowledge use changed across time, and were specifically related to both the types of decisions being made, and to stage of decision making; most reported use was conceptual or symbolic, with few examples of instrumental use. Participants did report actively sharing the research findings with their own networks. Further examination of these second-order knowledge-sharing processes is required, including development of appropriate methods and measures for its assessment. Some participants reported that they would not use the research evidence in their decision making when it contradicted professional experiences, while others used it to support apparently contradictory positions. The online wiki-based 'community of interest' requested by participants was not used.

Conclusions

Mobilizing knowledge in the area of VAW practice and policy is complex and resource-intensive, and must acknowledge and respect the values of identified knowledge users, while balancing the objectivity of the research and researchers. This paper provides important lessons learned about these processes, including attending to the potential unintended consequences of knowledge sharing.

Polluting facilities and hazardous sites are often concentrated in low-income communities of color already facing additional stressors to their health. The influence of socioeconomic status is not considered in traditional models of risk assessment. We describe a pilot study of a screening method that considers both pollution burden and population characteristics in assessing the potential for cumulative impacts. The goal is to identify communities that warrant further attention and to thereby provide actionable guidance to decision- and policy-makers in achieving environmental justice. The method uses indicators related to five components to develop a relative cumulative impact score for use in comparing communities: exposures, public health effects, environmental effects, sensitive populations and socioeconomic factors. Here, we describe several methodological considerations in combining disparate data sources and report on the results of sensitivity analyses meant to guide future improvements in cumulative impact assessments. We discuss criteria for the selection of appropriate indicators, correlations between them, and consider data quality and the influence of choices regarding model structure. We conclude that the results of this model are largely robust to changes in model structure.

Background

Obesity is a major public health issue; however, only limited evidence is available about effective ways to prevent obesity, particularly in early childhood. Romp & Chomp was a community-wide obesity prevention intervention conducted in Geelong Australia with a target group of 12,000 children aged 0-5 years. The intervention had an environmental and capacity building focus and we have recently demonstrated that the prevalence of overweight/obesity was lower in intervention children, post-intervention. Capacity building is defined as the development of knowledge, skills, commitment, structures, systems and leadership to enable effective health promotion and the aim of this study was to determine if the capacity of the Geelong community, represented by key stakeholder organisations, to support healthy eating and physical activity for young children was increased after Romp & Chomp.

Methods

A mixed methods evaluation with three data sources was utilised. 1) Document analysis comprised assessment of the documented formative and intervention activities against a capacity building framework (five domains: Partnerships, Leadership, Resource Allocation, Workforce Development, and Organisational Development); 2) Thematic analysis of key informant interviews (n = 16); and 3) the quantitative Community Capacity Index Survey.

Results

Document analysis showed that the majority of the capacity building activities addressed the Partnerships, Resource Allocation and Organisational Development domains of capacity building, with a lack of activity in the Leadership and Workforce Development domains. The thematic analysis revealed the establishment of sustainable partnerships, use of specialist advice, and integration of activities into ongoing formal training for early childhood workers. Complex issues also emerged from the key informant interviews regarding the challenges of limited funding, high staff turnover, changing governance structures, lack of high level leadership and unclear communication strategies. The Community Capacity Index provided further evidence that the project implementation network achieved a moderate level of capacity.

Conclusions

Romp & Chomp increased the capacity of organisations, settings and services in the Geelong community to support healthy eating and physical activity for young children. Despite this success there are important learnings from this mixed methods evaluation that should inform current and future community-based public health and health promotion initiatives.

Trial Registration Number

ANZCTRN12607000374460

Health technology assessment (HTA) was developed in the 1970s and 1980s to facilitate decision making on the desirability of new biomedical technologies. Since then, many of the standard tools and methods of HTA have been criticized for their implicit normativity. At the same time research into the character of technology in practice has motivated philosophers, sociologists and anthropologists to criticize the traditional view of technology as a neutral instrument designed to perform a specific function. Such research suggests that the tools and methods of more traditional forms of HTA are often inspired by an ‘instrumentalist’ conception of technology that does not fit the way technology actually works. This paper explores this hypothesis for a specific case: the assessments and deliberations leading to the introduction of breast cancer screening in the Netherlands. After reconstructing this history of HTA ‘in the making’ the stepwise model of HTA that emerged during the process is discussed. This model was rooted indeed in an instrumentalist conception of technology. However, a more detailed reconstruction of several episodes from this history reveals how the actors already experienced the inadequacy of some of the instrumentalist presuppositions. The historical case thus shows how an instrumentalist conception of technology may result in implicit normative effects. The paper concludes that an instrumentalist view of technology is not a good starting point for HTA and briefly suggests how the fit between HTA methods and the actual character of technology in practice might be improved.

In 1995, the National Library of Medicine (NLM) and the Public Health Service (PHS) recommended that special attention be given to the information needs of unaffiliated public health professionals. In response, the National Network of Libraries of Medicine (NN/LM) Greater Midwest Region initiated a collaborative outreach program for public health professionals working in rural east and central Iowa. Five public health agencies were provided equipment, training, and support for accessing the Internet. Key factors in the success of this project were: (1) the role of collaborating agencies in the implementation and ongoing success of information access outreach projects; (2) knowledge of the socio-cultural factors that influence the information-seeking habits of project participants (public health professionals); and (3) management of changing or varying technological infrastructures. Working with their funding, personnel from federal, state, and local governments enhanced the information-seeking skills of public health professionals in rural eastern and central Iowa communities.

Human tissue banking could provide a tool to address a number of public health concerns. We can potentially use it to monitor trends in human exposures, serve as an early warning system for new environmental exposures, assess low-level exposures around hazardous waste and other point sources of pollutants, evaluate the effectiveness of regulatory programs, and study etiologies of diseases (e.g., childhood cancer and birth defects) that are likely to be related to the environment. This article discusses opportunities to establish human tissue banks in connection with pre-existing public health surveillance programs for cancer and adverse reproductive outcomes. This is a cost-effective way to conduct surveillance and enhances the ability to carry out epidemiologic studies. The article also discusses ethical issues that are particularly important for public health practice. One is the issue of risk communication and the need to explain risks in a way that provides people with the information they need to determine appropriate action on the individual and community levels. Second is the issue of environmental justice. We recommend early involvement of communities that are likely to be involved in tissue-banking projects and full explanation of individual and group social risks from their participation.

Arctic indigenous peoples face significant challenges resulting from the contamination of Arctic air, water, and soil by persistent organic pollutants, heavy metals, and radionuclides. International cooperative efforts among governments and research institutions are under way to collect the information needed by environmental health scientists and public health officials to address environmental contamination in the Arctic. However, the climatic, political, and cultural conditions of the land and its native populations combine to present a unique set of scientific and logistic challenges to addressing this important public health issue. Public health officials have the responsibility to respect the cultural traditions of indigenous communities, while simultaneously designing strategies that will reduce their exposure to environmental contaminants and rates of disease and dysfunction. Researchers can better understand the link between environmental exposures and disease through monitoring programs for both the subsistence diets and health status of the indigenous populations. We suggest that the incorporation of community-based participatory research methods into programs designed to assess biomarkers of contaminant exposure in children and adults may be a valuable addition to ongoing and newly developed research programs. This approach could serve as a model for international environmental health initiatives, because it involves the participation of the local communities and seeks to builds trust between all stakeholders.

Background

Numerous publications demonstrate the importance of community-based participatory research (CBPR) in community health research, but few target the Deaf community. The Deaf community is understudied and underrepresented in health research despite suspected health disparities and communication barriers.

Objectives

The goal of this paper is to share the lessons learned from the implementation of CBPR in an understudied community of Deaf American Sign Language (ASL) users in the greater Rochester, New York, area.

Methods

We review the process of CBPR in a Deaf ASL community and identify the lessons learned.

Results

Key CBPR lessons include the importance of engaging and educating the community about research, ensuring that research benefits the community, using peer-based recruitment strategies, and sustaining community partnerships. These lessons informed subsequent research activities.

Conclusions

This report focuses on the use of CBPR principles in a Deaf ASL population; lessons learned can be applied to research with other challenging-to-reach populations.