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1.  Eurocan plus report: feasibility study for coordination of national cancer research activities 
Summary
The EUROCAN+PLUS Project, called for by the European Parliament, was launched in October 2005 as a feasibility study for coordination of national cancer research activities in Europe. Over the course of the next two years, the Project process organized over 60 large meetings and countless smaller meetings that gathered in total over a thousand people, the largest Europe–wide consultation ever conducted in the field of cancer research.
Despite a strong tradition in biomedical science in Europe, fragmentation and lack of sustainability remain formidable challenges for implementing innovative cancer research and cancer care improvement. There is an enormous duplication of research effort in the Member States, which wastes time, wastes money and severely limits the total intellectual concentration on the wide cancer problem. There is a striking lack of communication between some of the biggest actors on the European scene, and there are palpable tensions between funders and those researchers seeking funds.
It is essential to include the patients’ voice in the establishment of priority areas in cancer research at the present time. The necessity to have dialogue between funders and scientists to establish the best mechanisms to meet the needs of the entire community is evident. A top priority should be the development of translational research (in its widest form), leading to the development of effective and innovative cancer treatments and preventive strategies. Translational research ranges from bench–to–bedside innovative cancer therapies and extends to include bringing about changes in population behaviours when a risk factor is established.
The EUROCAN+PLUS Project recommends the creation of a small, permanent and independent European Cancer Initiative (ECI). This should be a model structure and was widely supported at both General Assemblies of the project. The ECI should assume responsibility for stimulating innovative cancer research and facilitating processes, becoming the common voice of the cancer research community and serving as an interface between the cancer research community and European citizens, patients’ organizations, European institutions, Member States, industry and small and medium enterprises (SMEs), putting into practice solutions aimed at alleviating barriers to collaboration and coordination of cancer research activities in the European Union, and dealing with legal and regulatory issues. The development of an effective ECI will require time, but this entity should be established immediately. As an initial step, coordination efforts should be directed towards the creation of a platform on translational research that could encompass (1) coordination between basic, clinical and epidemiological research; (2) formal agreements of co–operation between comprehensive cancer centres and basic research laboratories throughout Europe and (3) networking between funding bodies at the European level.
The European Parliament and its instruments have had a major influence in cancer control in Europe, notably in tobacco control and in the implementation of effective population–based screening. To make further progress there is a need for novelty and innovation in cancer research and prevention in Europe, and having a platform such as the ECI, where those involved in all aspects of cancer research can meet, discuss and interact, is a decisive development for Europe.
Executive Summary
Cancer is one of the biggest public health crises facing Europe in the 21st century—one for which Europe is currently not prepared nor preparing itself. Cancer is a major cause of death in Europe with two million casualties and three million new cases diagnosed annually, and the situation is set to worsen as the population ages.
These facts led the European Parliament, through the Research Directorate-General of the European Commission, to call for initiatives for better coordination of cancer research efforts in the European Union. The EUROCAN+PLUS Project was launched in October 2005 as a feasibility study for coordination of national cancer research activities. Over the course of the next two years, the Project process organized over 60 large meetings and countless smaller meetings that gathered in total over a thousand people. In this respect, the Project became the largest Europe-wide consultation ever conducted in the field of cancer research, implicating researchers, cancer centres and hospitals, administrators, healthcare professionals, funding agencies, industry, patients’ organizations and patients.
The Project first identified barriers impeding research and collaboration in research in Europe. Despite a strong tradition in biomedical science in Europe, fragmentation and lack of sustainability remain the formidable challenges for implementing innovative cancer research and cancer care improvement. There is an enormous duplication of research effort in the Member States, which wastes time, wastes money and severely limits the total intellectual concentration on the wide cancer problem. There is a striking lack of communication between some of the biggest actors on the European scene, and there are palpable tensions between funders and those researchers seeking funds.
In addition, there is a shortage of leadership, a multiplicity of institutions each focusing on its own agenda, sub–optimal contact with industry, inadequate training, non–existent career paths, low personnel mobility in research especially among clinicians and inefficient funding—all conspiring against efficient collaboration in cancer care and research. European cancer research today does not have a functional translational research continuum, that is the process that exploits biomedical research innovations and converts them into prevention methods, diagnostic tools and therapies. Moreover, epidemiological research is not integrated with other types of cancer research, and the implementation of the European Directives on Clinical Trials 1 and on Personal Data Protection 2 has further slowed the innovation process in Europe. Furthermore, large inequalities in health and research exist between the EU–15 and the New Member States.
The picture is not entirely bleak, however, as the European cancer research scene presents several strengths, such as excellent basic research and clinical research and innovative etiological research that should be better exploited.
When considering recommendations, several priority dimensions had to be retained. It is essential that proposals include actions and recommendations that can benefit all Member States of the European Union and not just States with the elite centres. It is also essential to have a broader patient orientation to help provide the knowledge to establish cancer control possibilities when we exhaust what can be achieved by the implementation of current knowledge. It is vital that the actions proposed can contribute to the Lisbon Strategy to make Europe more innovative and competitive in (cancer) research.
The Project participants identified six areas for which consensus solutions should be implemented in order to obtain better coordination of cancer research activities. The required solutions are as follows. The proactive management of innovation, detection, facilitation of collaborations and maintenance of healthy competition within the European cancer research community.The establishment of an exchange portal of information for health professionals, patients and policy makers.The provision of guidance for translational and clinical research including the establishment of a translational research platform involving comprehensive cancer centres and cancer research centres.The coordination of calls and financial management of cancer research projects.The construction of a ‘one–stop shop’ as a contact interface between the industry, small and medium enterprises, scientists and other stakeholders.The support of greater involvement of healthcare professionals in translational research and multidisciplinary training.
In the course of the EUROCAN+PLUS consultative process, several key collaborative projects emerged between the various groups and institutes engaged in the consultation. There was a collaboration network established with Europe’s leading Comprehensive Cancer Centres; funding was awarded for a closer collaboration of Owners of Cancer Registries in Europe (EUROCOURSE); there was funding received from FP7 for an extensive network of leading Biological Resource Centres in Europe (BBMRI); a Working Group identified the special needs of Central, Eastern and South–eastern Europe and proposed a remedy (‘Warsaw Declaration’), and the concept of developing a one–stop shop for dealing with academia and industry including the Innovative Medicines Initiative (IMI) was discussed in detail.
Several other dimensions currently lacking were identified. There is an absolute necessity to include the patients’ voice in the establishment of priority areas in cancer research at the present time. It was a salutary lesson when it was recognized that all that is known about the quality of life of the cancer patient comes from the experience of a tiny proportion of cancer patients included in a few clinical trials. The necessity to have dialogue between funders and scientists to establish the best mechanisms to meet the needs of the entire community was evident. A top priority should be the development of translational research (in its widest form) and the development of effective and innovative cancer treatments and preventative strategies in the European Union. Translational research ranges from bench-to-bedside innovative cancer therapies and extends to include bringing about changes in population behaviours when a risk factor is established.
Having taken note of the barriers and the solutions and having examined relevant examples of existing European organizations in the field, it was agreed during the General Assembly of 19 November 2007 that the EUROCAN+PLUS Project had to recommend the creation of a small, permanent and neutral ECI. This should be a model structure and was widely supported at both General Assemblies of the project. The proposal is based on the successful model of the European Molecular Biology Organisation (EMBO), and its principal aims include providing a forum where researchers from all backgrounds and from all countries can meet with members of other specialities including patients, nurses, clinicians, funders and scientific administrators to develop priority programmes to make Europe more competitive in research and more focused on the cancer patient.
The ECI should assume responsibility for: stimulating innovative cancer research and facilitating processes;becoming the common voice of the cancer research community and serving as an interface between the cancer research community and European citizens, patients’ and organizations;European institutions, Member States, industry and small and medium enterprises;putting into practice the aforementioned solutions aimed at alleviating barriers and coordinating cancer research activities in the EU;dealing with legal and regulatory issues.
Solutions implemented through the ECI will lead to better coordination and collaboration throughout Europe, more efficient use of resources, an increase in Europe’s attractiveness to the biomedical industry and better quality of cancer research and education of health professionals.
The Project considered that European legal instruments currently available were inadequate for addressing many aspects of the barriers identified and for the implementation of effective, lasting solutions. Therefore, the legal environment that could shelter an idea like the ECI remains to be defined but should be done so as a priority. In this context, the initiative of the European Commission for a new legal entity for research infrastructure might be a step in this direction. The development of an effective ECI will require time, but this should be established immediately. As an initial step, coordination efforts should be directed towards the creation of a platform on translational research that could encompass: (1) coordination between basic, clinical and epidemiological research; (2) formal agreements of co-operation between comprehensive cancer centres and basic research laboratories throughout Europe; (3) networking between funding bodies at the European level. Another topic deserving immediate attention is the creation of a European database on cancer research projects and cancer research facilities.
Despite enormous progress in cancer control in Europe during the past two decades, there was an increase of 300,000 in the number of new cases of cancer diagnosed between 2004 and 2006. The European Parliament and its instruments have had a major influence in cancer control, notably in tobacco control and in the implementation of effective population–based screening. To make further progress there is a need for novelty and innovation in cancer research and prevention in Europe, and having a platform such as the ECI, where those involved in all aspects of cancer research can meet, discuss and interact, is a decisive development for Europe.
doi:10.3332/ecancer.2011.84
PMCID: PMC3234055  PMID: 22274749
2.  A Health Department’s Collaborative Model for Disease Surveillance Capacity Building 
Objective
Highlight one academic health department’s unique approach to optimizing collaborative opportunities for capacity development and document the implications for chronic disease surveillance and population health.
Introduction
Public Health departments are increasingly called upon to be innovative in quality service delivery under a dwindling resource climate as highlighted in several publications of the Institute of Medicine. Collaboration with other entities in the delivery of core public health services has emerged as a recurring theme. One model of this collaboration is an academic health department: a formal affiliation between a health professions school and a local health department. Initially targeted at workforce development, this model of collaboration has since yielded dividends in other core public health service areas including community assessment, program evaluation, community-based participatory research and data analysis.
The Duval County Health Department (DCHD), Florida, presents a unique community-centered model of the academic health department. Prominence in local informatics infrastructure capacity building and hosting a CDC-CSTE applied public health informatics fellowship (APHIF) in the Institute for Public Health Informatics and Research (IPHIR) in partnership with the Center for Health Equity Research, University of Florida & Shands medical center are direct dividends of this collaborative model.
Methods
We examined the collaborative efforts of the DCHD and present the unique advantages these have brought in the areas of entrenched data-driven public health service culture, community assessments, program evaluation, community-based participatory research and health informatics projects.
Results
Advantages of the model include a data-driven culture with the balanced scorecard model in leadership and sub-departmental emphases on quality assurance in public health services. Activities in IPHIR include data-driven approaches to program planning and grant developments, program evaluations, data analyses and impact assessments for the DCHD and other community health stakeholders.
Reports developed by IPHIR have impacted policy formulation by highlighting the need for sub county level data differentiation to address health disparities. Unique community-based mapping of Duval County into health zones based on health risk factors correlating with health outcome measures have been published. Other reports highlight chronic disease surveillance data and health scorecards in special populations.
Partnerships with regional higher institutions (University of Florida, University of North Florida and Florida A&M University) increased public health service delivery and yielded rich community-based participatory research opportunities.
Cutting edge participation in health IT policy implementation led to the hosting of the fledgling community HIE, the Jacksonville Health Information Network, as well as leadership in shaping the landscape of the state HIE. This has immense implications for public health surveillance activities as chronic disease surveillance and public health service research take center stage under new healthcare payment models amidst increasing calls for quality assurance in public health services.
DCHD is currently hosting a CDC-funded fellowship in applied public health informatics. Some of the projects materializing from the fellowship are the mapping of the current public health informatics profile of the DCHD, a community based diabetes disease registry to aid population-based management and surveillance of diabetes, development of a proposal for a combined primary care/general preventive medicine residency in UF-Shands Medical Center, Jacksonville and mobilization of DCHD healthcare providers for the roll-out of the state-built electronic medical records system (Florida HMS-EHR).
Conclusions
Academic health centers provide a model of collaboration that directly impacts on their success in delivering core public health services. Disease surveillance is positively affected by the diverse community affiliations of an academic health department. The academic health department, as epitomized by DCHD, is also better positioned to seize up-coming opportunities for local public health capacity building.
PMCID: PMC3692891
Academic Health Departments; collaborative model; health informatics projects
3.  Facilitating the Recruitment of Minority Ethnic People into Research: Qualitative Case Study of South Asians and Asthma 
PLoS Medicine  2009;6(10):e1000148.
Aziz Sheikh and colleagues report on a qualitative study in the US and the UK to investigate ways to bolster recruitment of South Asians into asthma studies, including making inclusion of diverse populations mandatory.
Background
There is international interest in enhancing recruitment of minority ethnic people into research, particularly in disease areas with substantial ethnic inequalities. A recent systematic review and meta-analysis found that UK South Asians are at three times increased risk of hospitalisation for asthma when compared to white Europeans. US asthma trials are far more likely to report enrolling minority ethnic people into studies than those conducted in Europe. We investigated approaches to bolster recruitment of South Asians into UK asthma studies through qualitative research with US and UK researchers, and UK community leaders.
Methods and Findings
Interviews were conducted with 36 researchers (19 UK and 17 US) from diverse disciplinary backgrounds and ten community leaders from a range of ethnic, religious, and linguistic backgrounds, followed by self-completion questionnaires. Interviews were digitally recorded, translated where necessary, and transcribed. The Framework approach was used for analysis. Barriers to ethnic minority participation revolved around five key themes: (i) researchers' own attitudes, which ranged from empathy to antipathy to (in a minority of cases) misgivings about the scientific importance of the question under study; (ii) stereotypes and prejudices about the difficulties in engaging with minority ethnic populations; (iii) the logistical challenges posed by language, cultural differences, and research costs set against the need to demonstrate value for money; (iv) the unique contexts of the two countries; and (v) poorly developed understanding amongst some minority ethnic leaders of what research entails and aims to achieve. US researchers were considerably more positive than their UK counterparts about the importance and logistics of including ethnic minorities, which appeared to a large extent to reflect the longer-term impact of the National Institutes of Health's requirement to include minority ethnic people.
Conclusions
Most researchers and community leaders view the broadening of participation in research as important and are reasonably optimistic about the feasibility of recruiting South Asians into asthma studies provided that the barriers can be overcome. Suggested strategies for improving recruitment in the UK included a considerably improved support structure to provide academics with essential contextual information (e.g., languages of particular importance and contact with local gatekeepers), and the need to ensure that care is taken to engage with the minority ethnic communities in ways that are both culturally appropriate and sustainable; ensuring reciprocal benefits was seen as one key way of avoiding gatekeeper fatigue. Although voluntary measures to encourage researchers may have some impact, greater impact might be achieved if UK funding bodies followed the lead of the US National Institutes of Health requiring recruitment of ethnic minorities. Such a move is, however, likely in the short- to medium-term, to prove unpopular with many UK academics because of the added “hassle” factor in engaging with more diverse populations than many have hitherto been accustomed to.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
In an ideal world, everyone would have the same access to health care and the same health outcomes (responses to health interventions). However, health inequalities—gaps in health care and in health between different parts of the population—exist in many countries. In particular, people belonging to ethnic minorities in the UK, the US, and elsewhere have poorer health outcomes for several conditions than people belonging to the ethnic majority (ethnicity is defined by social characteristics such as cultural tradition or national origin). For example, in the UK, people whose ancestors came from the Indian subcontinent (also known as South Asians and comprising in the main of people of Indian, Pakistani, and Bangladeshi origin) are three times as likely to be admitted to hospital for asthma as white Europeans. The reasons underpinning ethnic health inequalities are complex. Some inequalities may reflect intrinsic differences between groups of people—some ethnic minorities may inherit genes that alter their susceptibility to a specific disease. Other ethnic health inequalities may arise because of differences in socioeconomic status or because different cultural traditions affect the uptake of health care services.
Why Was This Study Done?
Minority ethnic groups are often under-represented in health research, which could limit the generalizability of research findings. That is, an asthma treatment that works well in a trial where all the participants are white Europeans might not be suitable for South Asians. Clinicians might nevertheless use the treatment in all their patients irrespective of their ethnicity and thus inadvertently increase ethnic health inequality. So, how can ethnic minorities be encouraged to enroll into research studies? In this qualitative study, the investigators try to answer this question by talking to US and UK asthma researchers and UK community leaders about how they feel about enrolling ethnic minorities into research studies. The investigators chose to compare the feelings of US and UK asthma researchers because minority ethnic people are more likely to enroll into US asthma studies than into UK studies, possibly because the US National Institute of Health's (NIH) Revitalization Act 1993 mandates that all NIH-funded clinical research must include people from ethnic minority groups; there is no similar mandatory policy in the UK.
What Did the Researchers Do and Find?
The investigators interviewed 16 UK and 17 US asthma researchers and three UK social researchers with experience of working with ethnic minorities. They also interviewed ten community leaders from diverse ethnic, religious and linguistic backgrounds. They then analyzed the interviews using the “Framework” approach, an analytical method in which qualitative data are classified and organized according to key themes and then interpreted. By comparing the data from the UK and US researchers, the investigators identified several barriers to ethnic minority participation in health research including: the attitudes of researchers towards the scientific importance of recruiting ethnic minority people into health research studies; prejudices about the difficulties of including ethnic minorities in health research; and the logistical challenges posed by language and cultural differences. In general, the US researchers were more positive than their UK counterparts about the importance and logistics of including ethnic minorities in health research. Finally, the investigators found that some community leaders had a poor understanding of what research entails and about its aims.
What Do These Findings Mean?
These findings reveal a large gap between US and UK researchers in terms of policy, attitudes, practices, and experiences in relation to including ethnic minorities in asthma research. However, they also suggest that most UK researchers and community leaders believe that it is both important and feasible to increase the participation of South Asians in asthma studies. Although some of these findings may have been affected by the study participants sometimes feeling obliged to give “politically correct” answers, these findings are likely to be generalizable to other diseases and to other parts of Europe. Given their findings, the researchers warn that a voluntary code of practice that encourages the recruitment of ethnic minority people into health research studies is unlikely to be successful. Instead, they suggest, the best way to increase the representation of ethnic minority people in health research in the UK might be to follow the US lead and introduce a policy that requires their inclusion in such research.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000148.
Families USA, a US nonprofit organization that campaigns for high-quality, affordable health care for all Americans, has information about many aspects of minority health in the US, including an interactive game about minority health issues
The US Agency for Healthcare Research and Quality has a section on minority health
The UK Department of Health provides information on health inequalities and a recent report on the experiences of patients in Black and minority ethnic groups
The UK Parliamentary Office of Science and Technology also has a short article on ethnicity and health
Information on the NIH Revitalization Act 1993 is available
NHS Evidences Ethnicity and Health has a variety of policy, clinical, and research resources on ethnicity and health
doi:10.1371/journal.pmed.1000148
PMCID: PMC2752116  PMID: 19823568
4.  Establishing a community of practice of researchers, practitioners, policy-makers and communities to sustainably manage environmental health risks in Ecuador 
Background
The Sustainably Managing Environmental Health Risk in Ecuador project was launched in 2004 as a partnership linking a large Canadian university with leading Cuban and Mexican institutes to strengthen the capacities of four Ecuadorian universities for leading community-based learning and research in areas as diverse as pesticide poisoning, dengue control, water and sanitation, and disaster preparedness.
Methods
In implementing curriculum and complementary innovations through application of an ecosystem approach to health, our interdisciplinary international team focused on the question: “Can strengthening of institutional capacities to support a community of practice of researchers, practitioners, policy-makers and communities produce positive health outcomes and improved capacities to sustainably translate knowledge?” To assess progress in achieving desired outcomes, we review results associated with the logic framework analysis used to guide the project, focusing on how a community of practice network has strengthened implementation, including follow-up tracking of program trainees and presentation of two specific case studies.
Results
By 2009, train-the-trainer project initiation involved 27 participatory action research Master’s theses in 15 communities where 1200 community learners participated in the implementation of associated interventions. This led to establishment of innovative Ecuadorian-led master’s and doctoral programs, and a Population Health Observatory on Collective Health, Environment and Society for the Andean region based at the Universidad Andina Simon Bolivar. Building on this network, numerous initiatives were begun, such as an internationally funded research project to strengthen dengue control in the coastal community of Machala, and establishment of a local community eco-health centre focusing on determinants of health near Cuenca.
Discussion
Strengthening capabilities for producing and applying knowledge through direct engagement with affected populations and decision-makers provides a fertile basis for consolidating capacities to act on a larger scale. This can facilitate the capturing of benefits from the “top down” (in consolidating institutional commitments) and the “bottom up” (to achieve local results).
Conclusions
Alliances of academic and non-academic partners from the South and North provide a promising orientation for learning together about ways of addressing negative trends of development. Assessing the impacts and sustainability of such processes, however, requires longer term monitoring of results and related challenges.
doi:10.1186/1472-698X-11-S2-S5
PMCID: PMC3247836  PMID: 22165915
5.  Primary Care Research Team Assessment (PCRTA): development and evaluation. 
BACKGROUND: Since the early 1990s the United Kingdom (UK) Department of Health has explicitly promoted a research and development (R&D) strategy for the National Health Service (NHS). General practitioners (GPs) and other members of the primary care team are in a unique position to undertake research activity that will complement and inform the research undertaken by basic scientists and hospital-based colleagues and lead directly to a better evidence base for decision making by primary care professionals. Opportunities to engage in R&D in primary care are growing and the scope for those wishing to become involved is finally widening. Infrastructure funding for research-active practices and the establishment of a range of support networks have helped to improve the research capacity and blur some of the boundaries between academic departments and clinical practice. This is leading to a supportive environment for primary care research. There is thus a need to develop and validate nationally accepted quality standards and accreditation of performance to ensure that funders, collaborators and primary care professionals can deliver high quality primary care research. Several strategies have been described in national policy documents in order to achieve an improvement in teaching and clinical care, as well as enhancing research capacity in primary care. The development of both research practices and primary care research networks has been recognised as having an important contribution to make in enabling health professionals to devote more protected time to undertake research methods training and to undertake research in a service setting. The recognition and development of primary care research has also brought with it an emphasis on quality and standards, including an approach to the new research governance framework. PRIMARY CARE RESEARCH TEAM ASSESSMENT: In 1998, the NHS Executive South and West, and later the London Research and Development Directorate, provided funding for a pilot project based at the Royal College of General Practitioners (RCGP) to develop a scheme to accredit UK general practices undertaking primary care R&D. The pilot began with initial consultation on the development of the process, as well as the standards and criteria for assessment. The resulting assessment schedule allowed for assessment at one of two levels: Collaborative Research Practice (Level I), with little direct experience of gaining project or infrastructure funding Established Research Practice (Level II), with more experience of research funding and activity and a sound infrastructure to allow for growth in capacity. The process for assessment of practices involved the assessment of written documentation, followed by a half-day assessment visit by a multidisciplinary team of three assessors. IMPLEMENTATION--THE PILOT PROJECT: Pilot practices were sampled in two regions. Firstly, in the NHS Executive South West Region, where over 150 practices expressed an interest in participating. From these a purposive sample of 21 practices was selected, providing a range of research and service activity. A further seven practices were identified and included within the project through the East London and Essex Network of Researchers (ELENoR). Many in this latter group received funding and administrative support and advice from ELENoR in order to prepare written submissions for assessment. Some sample loss was encountered within the pilot project, which was attributable largely to conflicting demands on participants' time. Indeed, the preparation of written submissions within the South West coincided with the introduction of primary care groups (PCGs) in April 1999, which several practices cited as having a major impact on their participation in the pilot project. A final sample of 15 practices (nine in the South West and six through ELENoR) underwent assessment through the pilot project. EVALUATION: A formal evaluation of the Primary Care Research Team Assessment (PCRTA) pilot was undertaken by an independent researcher (FM). This was supplemented with feedback from the assessment team members. The qualitative aspect of the evaluation, which included face-to-face and telephone interviews with assessors, lead researchers and other practice staff within the pilot research practices, as well as members of the project management group, demonstrated a positive view of the pilot scheme. Several key areas were identified in relation to particular strengths of research practices and areas for development including: Strengths Level II practices were found to have a strong primary care team ethos in research. Level II practices tended to have a greater degree of strategic thinking in relation to research. Development areas Level I practices were found to lack a clear and explicit research strategy. Practices at both levels had scope to develop their communication processes for dissemination of research and also for patient involvement. Practices at both levels needed mechanisms for supporting professional development in research methodology. The evaluation demonstrated that practices felt that they had gained from their participation and assessors felt that the scheme had worked well. Some specific issues were raised by different respondents within the qualitative evaluation relating to consistency of interpretation of standards and also the possible overlap of the assessment scheme with other RCGP quality initiatives. NATIONAL IMPLEMENTATION OF THE PRIMARY CARE RESEARCH TEAM ASSESSMENT: The pilot project has been very successful and recommendations have been made to progress to a UK scheme. Management and review of the scheme will remain largely the same, with a few changes focusing on the assessment process and support for practices entering the scheme. Specific changes include: development of the support and mentoring role of the primary care research networks increased peer and external support and mentoring for research practices undergoing assessment development of assessor training in line with other schemes within the RCGP Assessment Network work to ensure consistency across RCGP accreditation schemes in relation to key criteria, thereby facilitating comparable assessment processes refinement of the definition of the two groups, with Level I practices referred to as Collaborators and Level II practices as Investigator-Led. The project has continued to generate much enthusiasm and support and continues to reflect current policy. Indeed, recent developments include the proposed new funding arrangements for primary care R&D, which refer to the RCGP assessment scheme and recognise it as a key component in the future R&D agenda. The assessment scheme will help primary care trusts (PCTs) and individual practices to prepare and demonstrate their approach to research governance in a systematic way. It will also provide a more explicit avenue for primary care trusts to explore local service and development priorities identified within health improvement programmes and the research priorities set nationally for the NHS.
PMCID: PMC2560501  PMID: 12049028
6.  A systems-based partnership learning model for strengthening primary healthcare 
Background
Strengthening primary healthcare systems is vital to improving health outcomes and reducing inequity. However, there are few tools and models available in published literature showing how primary care system strengthening can be achieved on a large scale. Challenges to strengthening primary healthcare (PHC) systems include the dispersion, diversity and relative independence of primary care providers; the scope and complexity of PHC; limited infrastructure available to support population health approaches; and the generally poor and fragmented state of PHC information systems.
Drawing on concepts of comprehensive PHC, integrated quality improvement (IQI) methods, system-based research networks, and system-based participatory action research, we describe a learning model for strengthening PHC that addresses these challenges. We describe the evolution of this model within the Australian Aboriginal and Torres Strait Islander primary healthcare context, successes and challenges in its application, and key issues for further research.
Discussion
IQI approaches combined with system-based participatory action research and system-based research networks offer potential to support program implementation and ongoing learning across a wide scope of primary healthcare practice and on a large scale. The Partnership Learning Model (PLM) can be seen as an integrated model for large-scale knowledge translation across the scope of priority aspects of PHC. With appropriate engagement of relevant stakeholders, the model may be applicable to a wide range of settings. In IQI, and in the PLM specifically, there is a clear role for research in contributing to refining and evaluating existing tools and processes, and in developing and trialling innovations. Achieving an appropriate balance between funding IQI activity as part of routine service delivery and funding IQI related research will be vital to developing and sustaining this type of PLM.
Summary
This paper draws together several different previously described concepts and extends the understanding of how PHC systems can be strengthened through systematic and partnership-based approaches. We describe a model developed from these concepts and its application in the Australian Indigenous primary healthcare context, and raise questions about sustainability and wider relevance of the model.
doi:10.1186/1748-5908-8-143
PMCID: PMC3878728  PMID: 24344640
Health systems strengthening; Quality improvement; Comprehensive primary healthcare; Participatory; Partnership; Learning; Information
7.  Linking Practice-Based Research Networks and Clinical and Translational Science Awards: New Opportunities for Community Engagement by Academic Health Centers 
Purpose
Practice Based Research Networks (PBRNs) are a part of many National Institutes of Health (NIH) funded Clinical and Translational Science Award (CTSA) sites. PBRNs, groups of primary care practices committed to collaborating on practice-relevant research, are unfamiliar to many CTSA leaders. Conversely, the CTSAs, as new research structures designed to transform clinical research, are unfamiliar to many PBRN Directors. This study examined the extent to which these programs have congruent goals and expectations, and whether their engagement is likely to be mutually beneficial.
Method
The authors sent a web-based survey to 38 CTSA Community Engagement Directors and a similar survey to 114 PBRN Directors during Fall 2008.
Results
The investigators received responses from 66% (25/38) of CTSA Community Engagement Directors and 61% (69/114) of PBRN Directors. Two-thirds of responding CTSAs reported working with PBRNs and over half of responding PBRNs reported a CTSA affiliation. Both groups indicated this relationship was important. CTSAs looked to PBRNs for access to patients and expertise in engaging communities and clinical practices. PBRNs reported seeking stable infrastructure support and greater collaboration and visibility in the academic research community. PBRN infrastructure support from CTSAs was highly variable. Both groups perceived considerable promise for building sustainable relationships and a bi-directional flow of information and research opportunities.
Conclusions
With less than three years of experience, the PBRN/CTSA relationship remains in the discovery phase, and the participants are still negotiating expectations. If these collaborations prove mutually beneficial, they may advance the community engagement goals of many academic health centers (AHCs).
doi:10.1097/ACM.0b013e3181cd2ed3
PMCID: PMC4059036  PMID: 20182121
8.  Incorporating translational research with clinical research to increase effectiveness in healthcare for better health 
Background
The transfer of new scientific discoveries into healthcare interventions requires that basic and clinical researchers work together with health care providers to generate team science. These innovative models require translational teams, and need to extend beyond the academic environment. The future of translational science requires partnerships with the healthcare community as well as the broader, general community. This new integrated model of effective translational teams holds promise for addressing thorny and persistent health disparities, is consistent with the nation’s strategic priority of eliminating health disparities, and bodes well for increasing healthcare effectiveness aimed at better health for all.
Discussion
As part of the 13th Research Centers in Minority Institutions (RCMI) International Symposium on Health Disparities, several senior academic leaders joined efforts to hold a workshop to discuss a model that considers the incorporation of two translational research strategies in research career development programs: Comparative effectiveness research (CER) and community-based participatory research (CBPR) for increasing healthcare effectiveness and eliminating healthcare disparities. Discussion included what issues may be most germane to the concept of a unified model for research workforce development through formal training and career development leading to increased effectiveness in healthcare for better health.
Summary
We believe that there is a gap in knowledge and skills in formal research career development programs that will enable physicians, other clinicians, and basic scientists to actively participate in these two translational research strategies. The purpose of this paper is to share the outcomes of these discussions, and encourage further discussion and possible innovation in the formulation of a new model for translational research workforce development.
doi:10.1186/2001-1326-3-20
PMCID: PMC4090393  PMID: 25024819
Translational research; Clinical research; Research workforce; Effectiveness; Healthcare disparities; Comparative effectiveness research; Community-based participatory research
9.  Establishing an implementation network: lessons learned from community-based participatory research 
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.
doi:10.1186/1748-5908-4-17
PMCID: PMC2670256  PMID: 19335915
10.  Developing a Community-Academic Partnership to Improve Recognition and Treatment of Depression in Underserved African American and White Elders 
Objective
Reducing mental health disparities among underserved populations, particularly African American elders, is an important public health priority. The authors describe the process and challenges of developing a community/academic research partnership to address these disparities.
Methods
The authors are using a Community-Based Participatory Research approach to gain access to underserved populations in need of depression treatment. The authors identify six stages: 1) Collaborating to Secure Funding; 2) Building a Communications Platform and Research Infrastructure; 3) Fostering Enduring Relationships; 4) Assessing Needs/Educating about Research Process; 5) Initiating Specific Collaborative Projects (meeting mutual needs/interests); and 6) Maintaining a Sustainable and Productive Partnership. Data from a needs assessment developed collaboratively by researchers and community agencies facilitated agreement on mutual research goals, while strengthening the partnership.
Results
A community/academic-based partnership with a solid research infrastructure has been established and maintained for 3 years. Using the results of a needs assessment, the working partnership prioritized and launched several projects. Through interviews and questionnaires, community partners identified best practices for researchers working in the community. Future research and interventional projects have been developed, including plans for sustainability that will eventually shift more responsibility from the academic institution to the community agencies.
Conclusions
To reach underserved populations by developing and implementing models of more effective mental health treatment, it is vital to engage community agencies offering services to this population. A successful partnership requires “cultural humility,” collaborative efforts, and the development of flexible protocols to accommodate diverse communities.
doi:10.1097/JGP.0b013e31818f3a7e
PMCID: PMC3044484  PMID: 20104053
Community partnerships; depression; community-based participatory research
11.  Comparative Performance of Private and Public Healthcare Systems in Low- and Middle-Income Countries: A Systematic Review 
PLoS Medicine  2012;9(6):e1001244.
A systematic review conducted by Sanjay Basu and colleagues reevaluates the evidence relating to comparative performance of public versus private sector healthcare delivery in low- and middle-income countries.
Introduction
Private sector healthcare delivery in low- and middle-income countries is sometimes argued to be more efficient, accountable, and sustainable than public sector delivery. Conversely, the public sector is often regarded as providing more equitable and evidence-based care. We performed a systematic review of research studies investigating the performance of private and public sector delivery in low- and middle-income countries.
Methods and Findings
Peer-reviewed studies including case studies, meta-analyses, reviews, and case-control analyses, as well as reports published by non-governmental organizations and international agencies, were systematically collected through large database searches, filtered through methodological inclusion criteria, and organized into six World Health Organization health system themes: accessibility and responsiveness; quality; outcomes; accountability, transparency, and regulation; fairness and equity; and efficiency. Of 1,178 potentially relevant unique citations, data were obtained from 102 articles describing studies conducted in low- and middle-income countries. Comparative cohort and cross-sectional studies suggested that providers in the private sector more frequently violated medical standards of practice and had poorer patient outcomes, but had greater reported timeliness and hospitality to patients. Reported efficiency tended to be lower in the private than in the public sector, resulting in part from perverse incentives for unnecessary testing and treatment. Public sector services experienced more limited availability of equipment, medications, and trained healthcare workers. When the definition of “private sector” included unlicensed and uncertified providers such as drug shop owners, most patients appeared to access care in the private sector; however, when unlicensed healthcare providers were excluded from the analysis, the majority of people accessed public sector care. “Competitive dynamics” for funding appeared between the two sectors, such that public funds and personnel were redirected to private sector development, followed by reductions in public sector service budgets and staff.
Conclusions
Studies evaluated in this systematic review do not support the claim that the private sector is usually more efficient, accountable, or medically effective than the public sector; however, the public sector appears frequently to lack timeliness and hospitality towards patients.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Health care can be provided through public and private providers. Public health care is usually provided by the government through national healthcare systems. Private health care can be provided through “for profit” hospitals and self-employed practitioners, and “not for profit” non-government providers, including faith-based organizations.
There is considerable ideological debate around whether low- and middle-income countries should strengthen public versus private healthcare services, but in reality, most low- and middle-income countries use both types of healthcare provision. Recently, as the global economic recession has put major constraints on government budgets—the major funding source for healthcare expenditures in most countries—disputes between the proponents of private and public systems have escalated, further fuelled by the recommendation of International Monetary Fund (an international finance institution) that countries increase the scope of private sector provision in health care as part of loan conditions to reduce government debt. However, critics of the private health sector believe that public healthcare provision is of most benefit to poor people and is the only way to achieve universal and equitable access to health care.
Why Was This Study Done?
Both sides of the public versus private healthcare debate draw on selected case reports to defend their viewpoints, but there is a widely held view that the private health system is more efficient than the public health system. Therefore, in order to inform policy, there is an urgent need for robust evidence to evaluate the quality and effectiveness of the health care provided through both systems. In this study, the authors reviewed all of the evidence in a systematic way to evaluate available data on public and private sector performance.
What Did the Researchers Do and Find?
The researchers used eight databases and a comprehensive key word search to identify and review appropriate published data and studies of private and public sector performance in low- and middle-income countries. They assessed selected studies against the World Health Organization's six essential themes of health systems—accessibility and responsiveness; quality; outcomes; accountability, transparency, and regulation; fairness and equity; and efficiency—and conducted a narrative review of each theme.
Out of the 102 relevant studies included in their comparative analysis, 59 studies were research studies and 13 involved meta-analysis, with the rest involving case reports or reviews. The researchers found that study findings varied considerably across countries studied (one-third of studies were conducted in Africa and a third in Southeast Asia) and by the methods used.
Financial barriers to care (such as user fees) were reported for both public and private systems. Although studies report that patients in the private sector experience better timeliness and hospitality, studies suggest that providers in the private sector more frequently violate accepted medical standards and have lower reported efficiency.
What Do These Findings Mean?
This systematic review did not support previous views that private sector delivery of health care in low- and middle-income settings is more efficient, accountable, or effective than public sector delivery. Each system has its strengths and weaknesses, but importantly, in both sectors, there were financial barriers to care, and each had poor accountability and transparency. This systematic review highlights a limited and poor-quality evidence base regarding the comparative performance of the two systems.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001244.
A previous PLoS Medicine study examined the outpatient care provided by the public and private sector in low-income countries
The WHO website provides more information on healthcare systems
The World Bank website provides information on health system financing
Oxfam provides an argument against increased private health care in poor countries
doi:10.1371/journal.pmed.1001244
PMCID: PMC3378609  PMID: 22723748
12.  Implementing community-based provider participation in research: an empirical study 
Background
Since 2003, the United States National Institutes of Health (NIH) has sought to restructure the clinical research enterprise in the United States by promoting collaborative research partnerships between academically-based investigators and community-based physicians. By increasing community-based provider participation in research (CBPPR), the NIH seeks to advance the science of discovery by conducting research in clinical settings where most people get their care, and accelerate the translation of research results into everyday clinical practice. Although CBPPR is seen as a promising strategy for promoting the use of evidence-based clinical services in community practice settings, few empirical studies have examined the organizational factors that facilitate or hinder the implementation of CBPPR. The purpose of this study is to explore the organizational start-up and early implementation of CBPPR in community-based practice.
Methods
We used longitudinal, case study research methods and an organizational model of innovation implementation to theoretically guide our study. Our sample consisted of three community practice settings that recently joined the National Cancer Institute’s (NCI) Community Clinical Oncology Program (CCOP) in the United States. Data were gathered through site visits, telephone interviews, and archival documents from January 2008 to May 2011.
Results
The organizational model for innovation implementation was useful in identifying and investigating the organizational factors influencing start-up and early implementation of CBPPR in CCOP organizations. In general, the three CCOP organizations varied in the extent to which they achieved consistency in CBPPR over time and across physicians. All three CCOP organizations demonstrated mixed levels of organizational readiness for change. Hospital management support and resource availability were limited across CCOP organizations early on, although they improved in one CCOP organization. As a result of weak IPPs, all three CCOPs created a weak implementation climate. Patient accrual became concentrated over time among those groups of physicians for whom CBPPR exhibited a strong innovation-values fit. Several external factors influenced innovation use, complicating and enriching our intra-organizational model of innovation implementation.
Conclusion
Our results contribute to the limited body of research on the implementation of CBPPR. They inform policy discussions about increasing and sustaining community clinician involvement in clinical research and expand on theory about organizational determinants of implementation effectiveness.
doi:10.1186/1748-5908-7-41
PMCID: PMC3482599  PMID: 22568935
Implementation; Academic-community research partnerships; Cancer clinical trials
13.  Assessing community perspectives of the community based education and service model at Makerere University, Uganda: a qualitative evaluation 
Background
Community partnerships are defined as groups working together with shared goals, responsibilities, and power to improve the community. There is growing evidence that these partnerships contribute to the success and sustainability of community-based education and service programs (COBES), facilitating change in community actions and attitudes. Makerere University College of Health Sciences (MakCHS) is forging itself as a transformational institution in Uganda and the region. The College is motivated to improve the health of Ugandans through innovative responsive teaching, provision of service, and community partnerships. Evaluating the COBES program from the community perspective can assist the College in refining an innovative and useful model that has potential to improve the health of Ugandans.
Methods
A stratified random sample of 11 COBES sites was selected to examine the community’s perception of the program. Key Informant Interviews of 11 site tutors and 33 community members were completed. The data was manually analyzed and themes developed.
Results
Communities stated the students consistently engaged with them with culturally appropriate behaviour. They rated the student’s communication as very good even though translators were frequently needed. Half the community stated they received some feedback from the students, but some communities interpreted any contact after the initial visit as feedback. Communities confirmed and appreciated that the students provided a number of interventions and saw positive changes in health and health seeking behaviours. The community reflected that some programs were more sustainable than others; the projects that needed money to implement were least sustainable. The major challenges from the community included community fatigue, and poor motivation of community leaders to continue to take students without compensation.
Conclusions
Communities hosting Makerere students valued the students’ interventions and the COBES model. They reported witnessing health benefits of fewer cases of disease, increased health seeking behavior and sustainable healthcare programs. The evidence suggests that efforts to standardize objectives, implement structural adjustments, and invest in development of the program would yield even more productive community interactions and a healthcare workforce with public health skills needed to work in rural communities.
doi:10.1186/1472-698X-11-S1-S6
PMCID: PMC3059478  PMID: 21411006
14.  Building partnerships towards strengthening Makerere University College of Health Sciences: a stakeholder and sustainability analysis 
Background
Partnerships and networking are important for an institution of higher learning like Makerere University College of Health Sciences (MakCHS) to be competitive and sustainable.
Methods
A stakeholder and sustainability analysis of 25 key informant interviews was conducted among past, current and potential stakeholders of MakCHS to obtain their perspectives and contributions to sustainability of the College in its role to improve health outcomes.
Results
The College has multiple internal and external stakeholders. Stakeholders from Uganda wanted the College to use its enormous academic capacity to fulfil its vision, take initiative, and be innovative in conducting more research and training relevant to the country’s health needs. Many stakeholders felt that the initiative for collaboration currently came more from the stakeholders than the College. External stakeholders felt that MakCHS was insufficiently marketing itself and not directly engaging the private sector or Parliament. Stakeholders also identified the opportunity for MakCHS to embrace information technology in research, learning and training, and many also wanted MakCHS to start leadership and management training programmes in health systems. The need for MakCHS to be more vigorous in training to enhance professionalism and ethical conduct was also identified.
Discussion
As a constituent of a public university, MakCHS has relied on public funding, which has been inadequate to fulfill its mission. Broader networking, marketing to mobilize resources, and providing strong leadership and management support to inspire confidence among its current and potential stakeholders will be essential to MakCHS’ further growth. MakCHS’ relevance is hinged on generating research knowledge for solving the country’s contemporary health problems and starting relevant programs and embracing technologies. It should share new knowledge widely through publications and other forms of dissemination. Whether institutional leadership is best in the hands of academicians or professional managers is a debatable matter.
Conclusions
This study points towards the need for MakCHS and other African public universities to build a broad network of partnerships to strengthen their operations, relevance, and sustainability. Conducting stakeholder and sustainability analyses are instructive toward this end, and have provided information and perspectives on how to make long-range informed choices for success.
doi:10.1186/1472-698X-11-S1-S14
PMCID: PMC3059473  PMID: 21411001
15.  Improving accountability through alignment: the role of academic health science centres and networks in England 
Background
As in many countries around the world, there are high expectations on academic health science centres and networks in England to provide high-quality care, innovative research, and world-class education, while also supporting wealth creation and economic growth. Meeting these expectations increasingly depends on partnership working between university medical schools and teaching hospitals, as well as other healthcare providers. However, academic-clinical relationships in England are still characterised by the “unlinked partners” model, whereby universities and their partner teaching hospitals are neither fiscally nor structurally linked, creating bifurcating accountabilities to various government and public agencies.
Discussion
This article focuses on accountability relationships in universities and teaching hospitals, as well as other healthcare providers that form core constituent parts of academic health science centres and networks. The authors analyse accountability for the tripartite mission of patient care, research, and education, using a four-fold typology of accountability relationships, which distinguishes between hierarchical (bureaucratic) accountability, legal accountability, professional accountability, and political accountability. Examples from North West London suggest that a number of mechanisms can be used to improve accountability for the tripartite mission through alignment, but that the simple creation of academic health science centres and networks is probably not sufficient.
Summary
At the heart of the challenge for academic health science centres and networks is the separation of accountabilities for patient care, research, and education in different government departments. Given that a fundamental top-down system redesign is now extremely unlikely, local academic and clinical leaders face the challenge of aligning their institutions as a matter of priority in order to improve accountability for the tripartite mission from the bottom up. It remains to be seen which alignment mechanisms are most effective, and whether they are strong enough to counter the separation of accountabilities for the tripartite mission at the national level, the on-going structural fragmentation of the health system in England, and the unprecedented financial challenges that it faces. Future research should focus on determining the comparative effectiveness of different alignment mechanisms, developing standardised metrics and key performance indicators, evaluating and assessing academic health science centres and networks, and empirically addressing leadership issues.
doi:10.1186/1472-6963-14-24
PMCID: PMC3909383  PMID: 24438592
Accountability; Alignment; Collaboration; Partnership; University medical school; Teaching hospital; Academic-clinical relationships; Tripartite mission; Academic Health Science Centre (AHSC); Academic Health Science Network (AHSN)
16.  Building a National Research Network for Clinical Investigations in Otology & Neurotology 
Background
Practice-based research networks (PBRNs) are the preferred research setting for descriptive/epidemiologic studies and studies that explore the effectiveness of treatments for disease that are managed in community settings, away from the rubric of the academic medical center. A PBRN in Otology/Neurotology, established upon a sustainable research infrastructure, addresses the challenges of performing community-based research through enhanced support for data collection and facilitated research regulatory adherence. A strategic alignment of a PBRN with an established research infrastructure allows for successful implementation of a variety of study methodologies and a framework for successful competition for research funding in hearing and balance disorders. Our goal is to develop a centralized, high quality research infrastructure that supports a dynamic research alliance between regional centers for research excellence, community physicians, allied health professionals, and patients.
Objective
We describe herein current plans and progress toward the goal of developing a network of academic and community based research sites to facilitate the conduct of clinical research in hearing and balance disorders. We have formed a PBRN that we call the CHEER Network: Creating Healthcare Excellence through Education and Research. CHEER was proposed in response to a request for applications from the National Institute for Deafness and other Communication Disorders (NIDCD) to further develop clinical research in Otolaryngology, specifically focusing on disorders in hearing and balance.
Conclusion
Our expectation is that a network organized and focused around regional research alliances between academic institutions and community practitioners will have broad appeal to community-based health care professionals and patients, resulting in enhanced communications, interoperability, and success in the conduct of high quality multi-center clinical research in hearing and balance disorders.
doi:10.1097/MAO.0b013e3181c9940c
PMCID: PMC2888042  PMID: 20101159
clinical research; clinical otology; national research network; hearing and balance research
17.  The effect of enhanced public–private partnerships on Maternal, Newborn and child Health Services and outcomes in Nairobi–Kenya: the PAMANECH quasi-experimental research protocol 
BMJ Open  2014;4(10):e006608.
Introduction
Rapid urbanisation in Kenya has resulted in growth of slums in urban centres, characterised by poverty, inadequate social services and poor health outcomes. The government's initiatives to improve access to quality healthcare for mothers and children are largely limited to public health facilities, which are few and/or inaccessible in underserved areas such as the slums. The ‘Partnership for Maternal, Newborn and Child Health’ (PAMANECH) project is being implemented in two Nairobi slums, Viwandani and Korogocho, to assess the impact of strengthening public–private partnerships for the delivery of healthcare on the health of mothers, newborns and young children in two informal settlements in Kenya.
Methods and analysis
This is a quasi-experimental study; our approach is to support private as well as public health providers and the community to enhance access to and demand for quality healthcare services. Key activities include: infrastructural upgrade of selected Private Not-For-Profit health facilities operating in the two slums, building capacity for healthcare providers as well as the Health Management Teams in Nairobi, facilitating provision of supportive supervision by the local health authorities and forming networks of Community Health Volunteers (CHVs) to create demand for health services. To assess the impact of the intervention, the study is utilising multiple data sources using a combination of qualitative and quantitative methods. A baseline survey was conducted in 2013 and an end-line survey will be conducted at least 1 year after full implementation of the intervention. Systematic monitoring and documentation of the intervention is on-going to strengthen the case for causal inference.
Ethics and dissemination
Ethical approval for the study was obtained from the Kenya Medical Research Institute. Key messages from the results will be packaged and widely disseminated through workshops, conference presentations, reports, factsheets and academic publications to facilitate uptake by policymakers.
Protocol registration number
KEMRI- NON-SSC-PROTOCOL No. 393.
doi:10.1136/bmjopen-2014-006608
PMCID: PMC4208053  PMID: 25341452
Public-Private Partnerships; Maternal, Newborn and Child Health; Slums; Kenya
18.  “A Good Personal Scientific Relationship”: Philip Morris Scientists and the Chulabhorn Research Institute, Bangkok 
PLoS Medicine  2008;5(12):e238.
Background
This paper examines the efforts of consultants affiliated with Philip Morris (PM), the world's leading transnational tobacco corporation, to influence scientific research and training in Thailand via the Chulabhorn Research Institute (CRI). A leading Southeast Asian institute for environmental health science, the CRI is headed by Professor Dr. Her Royal Highness Princess Chulabhorn, the daughter of the King of Thailand, and it has assumed international significance via its designation as a World Health Organization (WHO) Collaborating Centre in December 2005.
Methods and Findings
This paper analyses previously confidential tobacco industry documents that were made publicly available following litigation in the United States. PM documents reveal that ostensibly independent overseas scientists, now identified as industry consultants, were able to gain access to the Thai scientific community. Most significantly, PM scientist Roger Walk has established close connections with the CRI. Documents indicate that Walk was able to use such links to influence the study and teaching of environmental toxicology in the institute and to develop relations with key officials and local scientists so as to advance the interests of PM within Thailand and across Asia. While sensitivities surrounding royal patronage of the CRI make public criticism extremely difficult, indications of ongoing involvement by tobacco industry consultants suggest the need for detailed scrutiny of such relationships.
Conclusions
The establishment of close links with the CRI advances industry strategies to influence scientific research and debate around tobacco and health, particularly regarding secondhand smoke, to link with academic institutions, and to build relationships with national elites. Such strategies assume particular significance in the national and regional contexts presented here amid the globalisation of the tobacco pandemic. From an international perspective, particular concern is raised by the CRI's recently awarded status as a WHO Collaborating Centre. Since the network of WHO Collaborating Centres rests on the principle of “using national institutions for international purposes,” the documents presented below suggest that more rigorous safeguards are required to ensure that such use advances public health goals rather than the objectives of transnational corporations.
Jeff Collin and Ross MacKenzie analyze tobacco industry documents and find that Philip Morris consultants were able to gain access to a Thai research institute that is a WHO Collaborating Centre.
Editors' Summary
Background.
Tobacco use kills 5.4 million people a year (one person every six seconds) and accounts for one in ten adult deaths worldwide. Globally, the use of tobacco is on the rise, especially in developing countries, which have become a major target for tobacco industry marketing. The tobacco industry has worked hard to try and influence public perceptions about the risks of smoking and the risk of inhaling secondhand smoke (passive smoking). The industry has used a variety of tactics to downplay the health hazards of smoking or inhaling secondhand smoke—two examples are publishing articles casting doubts about the health hazards of tobacco and funding research that is biased toward giving pro-industry results. Another tactic is for tobacco industry consultants to try and gain entry to universities and other academic centers to see if they can influence research and teaching activities.
Why Was This Study Done?
The researchers were concerned that consultants from the tobacco company Philip Morris had gained access to an academic research center in Thailand called the Chulabhorn Research Institute (CRI). The CRI is an internationally renowned teaching institution for a variety of scientific disciplines, including environmental toxicology (the study of how chemicals in the environment, such as tobacco smoke, can affect human health), biomedicine, and biotechnology. The institute has secured funding from the Thai government, the Association of Southeast Nations and the United Nations Development Programme. In 2005 the institute's environmental toxicology unit was designated a World Health Organization (WHO) Collaborating Centre. WHO Collaborating Centres are “institutions such as research institutes, parts of universities or academies, that are designated by the Director-General of the WHO to carry out activities in support of the WHO's programs” (http://www.who.int/collaboratingcentres/en/). The researchers were concerned that Philip Morris consultants had been able to develop relationships with the CRI to help advance the company's interests.
What Did the Researchers Do and Find?
The researchers analyzed previously confidential tobacco industry documents that were made publicly available online following litigation in the United States. They searched two online collections of industry documents—the Legacy Tobacco Documents Library and Tobacco Documents Online—as well as the online collections operated by US-based tobacco companies. They found that consultants to Philip Morris were able to gain access to the scientific community in Thailand. A Philip Morris scientist named Roger Walk was able to establish close connections to the CRI, and he used these connections to influence research and teaching activities at the CRI on environmental toxicology. Walk was also able to build relationships with government officials and scientists in Thailand to help advance the interests of Philip Morris in the country and across Asia.
What Do these Findings Mean?
This study provides evidence that the tobacco industry has established close links with a research institute in Thailand that collaborates with the WHO, and has been able to influence the institute's teaching curriculum and research. Such links are of great concern to the public health community, which is working hard to reduce deaths and disease due to tobacco. These links raise the possibility that the tobacco industry is managing to influence medical research and teaching at academic institutions. The WHO has stated that a firewall is in place between itself and the tobacco industry—but the study authors argue, based on their findings, that “this firewall is not impenetrable.” The study findings, they conclude, highlight a challenge posed to international tobacco control efforts, especially with respect to Article 5.3 of an international treaty called the WHO Framework Convention on Tobacco Control; Article 5.3 addresses the need to protect public health policies from the vested interests of the tobacco industry. The authors say that better safeguards must be put in place to prevent tobacco companies from thwarting public health goals.
Additional Information.
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.0050238.
The Legacy Tobacco Documents Library contains over 9.7 million documents created by tobacco companies
Tobacco Documents Online contains over 4 million tobacco industry documents
Over 900 WHO Collaborating Centres are at work in 99 Member States on many health disciplines
The WHO held an inquiry in 2000 into possible tobacco industry influence over the organization (and over other UN agencies), and has published its recommendations in response to this inquiry
The WHO Framework Convention on Tobacco Control is an international treaty on controlling tobacco
doi:10.1371/journal.pmed.0050238
PMCID: PMC2605886  PMID: 19108600
19.  Beginning a Partnership with PhotoVoice to Explore Environmental Health and Health Inequities in Minority Communities 
Research informs action, but the challenge is its translation into practice. The 2012–2017 National Institute of Environmental Health Sciences Strategic Plan emphasizes partnership with community stakeholders to capture critical missing information about the effects of environment on health and to improve translation of study results, a daunting task for many traditionally-trained researchers. To better understand economic and neighborhood context consistent with these goals as well as existing inequities, we needed access to a highly affected community to inform and participate in our research. Our team therefore undertook a PhotoVoice project as a first step in establishing a participatory partnership and to appreciate the lived experiences of and build trust with youth visiting an urban community center in a high-risk, low-income, African American neighborhood located along a busy, polluted interstate. Ten 8–13 years-olds represented their community’s perspectives through photographs over 14-weeks using structured questioning. Five themes emerged: poor eating habits/inadequate nutrition; safety/violence; family/friends/community support; future hopes/dreams; and garbage/environment. Public viewings of the photos/captions facilitated engagement of other community agencies and multidisciplinary academic faculties to work together to build a sustainable “community collaboratory” that will promote health at the center by providing families knowledge/skills to prevent/minimize environmental exposures via diet/lifestyle changes using community-engaged, citizen scientist and systems thinking approaches.
doi:10.3390/ijerph111111132
PMCID: PMC4245604  PMID: 25350008
environmental health; health inequities; community health; PhotoVoice; child/adolescent health; community-based participatory research; community engagement; minority health; health disparities
20.  The Role of Organizational Affiliations and Research Networks in the Diffusion of Breast Cancer Treatment Innovation 
Medical care  2011;49(2):172-179.
Introduction
The National Institutes of Health (NIH) sees provider-based research networks and other organizational linkages between academic researchers and community practitioners as promising vehicles for accelerating the translation of research into practice. This study examines whether organizational research affiliations and teaching affiliations are associated with accelerated diffusion of sentinel lymph node biopsy (SLNB), an innovation in the treatment of early-stage breast cancer.
Methods
Surveillance Epidemiology and End Results-Medicare data were used to examine the diffusion of SLNB for treatment of early-stage breast cancer among women aged 65 years and older diagnosed between 2000 and 2002, shortly after Medicare approved and began reimbursing for the procedure.
Results
In this population, patients treated at an organization affiliated with a research network—-the American College of Surgeons Oncology Group (ACOSOG) or other National Cancer Institute (NCI) cooperative groups—-were more likely to receive the innovative treatment (SLNB) than patients treated at unaffiliated organizations (odds ratio: 2.70, 95% confidence interval: 1.77–4.12; odds ratio: 1.84, 95% confidence interval: 1.26–2.69, respectively). Neither hospital teaching status nor surgical volume was significantly associated with differences in SLNB use.
Discussion
Patients who receive cancer treatment at organizations affiliated with cancer research networks have an enhanced probability of receiving SLNB, an innovative procedure that offers the promise of improved patient outcomes. Study findings support the NIH Roadmap and programs such as the NCI’s Community Clinical Oncology Program, as they seek to accelerate the translation of research into practice by simultaneously accelerating and broadening cancer research in the community.
doi:10.1097/MLR.0b013e3182028ff2
PMCID: PMC3037724  PMID: 21206296
breast cancer; translational research; diffusion of innovation; organization and administration; provider-based research networks
21.  Developing a Multidisciplinary Model of Comparative Effectiveness Research Within a Clinical and Translational Science Award 
The Clinical and Translational Science Awards (CTSAs) were initiated to improve the conduct and impact of NIH's research portfolio, transforming training programs and research infrastructure at academic institutions and creating a nationwide consortium. They provide a model for translating research across disciplines and offer an efficient and powerful platform for comparative effectiveness research (CER), an effort that has long struggled but enjoys renewed hope under health care reform. CTSAs include study design and methods expertise, informatics, and regulatory support; programs in education, training, and career development in domains central to CER; and robust programs in community engagement, both of the general public and of clinical practice communities.
Albert Einstein College of Medicine of Yeshiva University and Montefiore Medical Center have entered a formal partnership that places their CTSA at a critical intersection for clinical and translational research. Their CTSA leaders were asked to develop a strategy for enhancing CER activities, and in 2010 they developed a model that encompasses four broadly defined “compartments” of research strength that must be coordinated for this enterprise to succeed: evaluation and health services research, biobehavioral research and prevention, efficacy studies and clinical trials, and social science and implementation research.
This article provides historical context for CER, elucidates Einstein-Montefiore’s CER model and strategic planning efforts, and illustrates how a CTSA can provide a vision, leadership, coordination, and services to support an academic health center’s collaborative efforts to develop a robust CER portfolio and thus contribute to the national effort to improve health and health care.
doi:10.1097/ACM.0b013e318217ea82
PMCID: PMC3102772  PMID: 21512360
22.  Research into practice: Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for Nottinghamshire, Derbyshire, Lincolnshire (NDL) 
Background
To address the problem of translation from research-based evidence to routine healthcare practice, the Collaboration for Leadership in Applied Health Research and Care for Nottinghamshire, Derbyshire, and Lincolnshire (CLAHRC-NDL) was funded by the National Institute for Health Research as one of nine CLAHRCs across England. This paper outlines the underlying theory and its application that CLAHRC-NDL has adopted, as a case example that might be generalised to practice outside the CLAHRC, in comparison to alternative models of implementation.
Discussion
Conventional approaches to health research frequently generate evidence in isolation from the environment in which it is intended for use. The premise of the CLAHRC-NDL model is that barriers to implementation can be overcome if knowledge is co-produced by academic and clinical service staff, taking account of the organisational context in which it is to be applied. This approach is founded on organisational learning theory, recognising that change is a social and political phenomenon. Evidence is produced in real time, taking full account of the environment in which it is to be implemented. To support this process, senior health service staff are seconded to the CLAHRC as ‘diffusion fellows’ (DFs) to actively bridge the research to practice gap by being a full member of both the research team and their area of clinical practice. To facilitate innovation and embed change in the local health community, existing communities of practice are enhanced and new ones are fostered around specific themes. Our approach has been adopted by 16 clinical research studies in the areas of mental health, children and young people, primary care, and stroke rehabilitation.
Summary
The CLAHRC-NDL model of implementation applies organisational learning theory by addressing the social and situational barriers and enablers to implementation, and adopting a philosophy of co-production. Two key mechanisms for translation of innovation have been utilised: DFs, to actively bridge the research to practice gap, and communities of practice, to underpin and sustain improvements in healthcare. The model shows promising results in putting research into practice, which may be transferable to other healthcare contexts.
doi:10.1186/1748-5908-7-40
PMCID: PMC3441357  PMID: 22553966
CLAHRC; Research into practice; Implementation; Knowledge mobilisation; Organisational learning; Translation; Communities of practice
23.  A better model for care — virtual care coordination 
Telehealth is a proven tool for reducing costs, improving quality of life, reducing hospital visits/length of stay and enhancing relationships between patients and community nurses. There have been many trials demonstrating these benefits, and findings have always demonstrated return on investment. However, uptake has been slow—68% of providers have no plans to roll out a telehealth solution in the next 24 months. Through a decade of ethnographic research, Care Innovations has visited 20 countries, 1000 homes and 150 hospitals and clinics, generating more than a dozen pilot projects in homes and a number of research projects, to provide a better understanding of where telehealth fits within care models and how to maximise the benefits delivered by improving technologies.
Rather than a stand-alone device that provides medical readings remotely, clinicians and patients require a system-level, standards-based approach that is adaptable to practical healthcare system needs—from assessing patient status to providing better management of chronic conditions to compatibility with medical records systems. In this patient-centred approach, many factors, including psychosocial ones, are important to the process. Things like fostering an alliance between a patient and clinicians, reinforcing a patient’s desires and life goals, using more effective messages and positive psychology to motivate a patient to make difficult lifestyle changes, and personalising each course of treatment become integral to the process.
Virtual care coordination establishes an active and dynamic support network, linking patients with clinicians and doctors. Using computer-based biometric monitoring, two-way videoconferencing, educational tools, and logic-based evaluation techniques, patients gain more control over the management of their chronic conditions while being comfortable within their home environment. This approach helps provide quality, cost effective treatment of long-term diseases, encouraging healthy behaviours and providing positive feedback to guide the health process. Treating the whole person in this manner is an emerging field referred to as integrative care.
Integrative care via virtual care coordination is a model that encompasses a variety of disciplines and that treats the whole person, not simply the disease. Using the strengths of conventional medicine combined with complementary treatments (that might include biofeedback, meditation, dietary changes, and stress reduction techniques), integrative care establishes a deeper relationship between the patient and the physician, emphasising wellness and patient self-care. Four elements combine to assist patients in making the necessary lifestyle changes to successfully improve their health and to manage chronic conditions more effectively: Engage: Make interaction with the device a pleasant, personalised experience to encourage long-term use and acceptance.Educate: Give patients access to relevant, timely information through videos and instructional material to support lifestyle changes and the prescribed treatment plan.Evaluate: Provide a way for physicians and clinicians to remotely assess improvements or detect setbacks in a patient’s condition and respond quickly when necessary.Empower: Give patients the means to manage their conditions actively and to live as independently as possible.
Drawing on findings and insights from recent pilot studies that demonstrate the successful use of virtual care coordination, Claire Medd will highlight key outcomes, demonstrating how telehealth can be successfully incorporated into a comprehensive care model to increase the value and outcomes of pilots and rollouts.
PMCID: PMC3571132
care innovations; virtual care coordination; comprehensive care model; chronic conditions
24.  Women's Access and Provider Practices for the Case Management of Malaria during Pregnancy: A Systematic Review and Meta-Analysis 
PLoS Medicine  2014;11(8):e1001688.
Jenny Hill and colleagues conduct a systematic review and meta-analysis of women’s access and healthcare provider adherence to WHO case-management policy of malaria during pregnancy.
Please see later in the article for the Editors' Summary
Background
WHO recommends prompt diagnosis and quinine plus clindamycin for treatment of uncomplicated malaria in the first trimester and artemisinin-based combination therapies in subsequent trimesters. We undertook a systematic review of women's access to and healthcare provider adherence to WHO case management policy for malaria in pregnant women.
Methods and Findings
We searched the Malaria in Pregnancy Library, the Global Health Database, and the International Network for the Rational Use of Drugs Bibliography from 1 January 2006 to 3 April 2014, without language restriction. Data were appraised for quality and content. Frequencies of women's and healthcare providers' practices were explored using narrative synthesis and random effect meta-analysis. Barriers to women's access and providers' adherence to policy were explored by content analysis using NVivo. Determinants of women's access and providers' case management practices were extracted and compared across studies. We did not perform a meta-ethnography. Thirty-seven studies were included, conducted in Africa (30), Asia (4), Yemen (1), and Brazil (2). One- to three-quarters of women reported malaria episodes during pregnancy, of whom treatment was sought by >85%. Barriers to access among women included poor knowledge of drug safety, prohibitive costs, and self-treatment practices, used by 5%–40% of women. Determinants of women's treatment-seeking behaviour were education and previous experience of miscarriage and antenatal care. Healthcare provider reliance on clinical diagnosis and poor adherence to treatment policy, especially in first versus other trimesters (28%, 95% CI 14%–47%, versus 72%, 95% CI 39%–91%, p = 0.02), was consistently reported. Prescribing practices were driven by concerns over side effects and drug safety, patient preference, drug availability, and cost. Determinants of provider practices were access to training and facility type (public versus private). Findings were limited by the availability, quality, scope, and methodological inconsistencies of the included studies.
Conclusions
A systematic assessment of the extent of substandard case management practices of malaria in pregnancy is required, as well as quality improvement interventions that reach all providers administering antimalarial drugs in the community. Pregnant women need access to information on which anti-malarial drugs are safe to use at different stages of pregnancy.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Malaria, a mosquito-borne parasite, kills about 600,000 people every year. Most of these deaths occur among young children in sub-Saharan Africa, but pregnant women and their unborn babies are also vulnerable to malaria. Infection with malaria during pregnancy can cause severe maternal anemia, miscarriages, and preterm births, and kills about 10,000 women and 100,000 children each year. Since 2006, the World Health Organization (WHO) has recommended that uncomplicated malaria (an infection that causes a fever but does not involve organ damage or severe anemia) should be treated with quinine and clindamycin if it occurs during the first trimester (first three months) of pregnancy and with an artemisinin-based combination therapy (ACT) if it occurs during the second or third trimester; ACTs should be used during the first trimester only if no other treatment is immediately available because their safety during early pregnancy has not been established. Since 2010, WHO has also recommended that clinical diagnosis of malaria should be confirmed before treatment by looking for parasites in patients' blood (parasitology).
Why Was This Study Done?
Prompt diagnosis and treatment of malaria in pregnancy in regions where malaria is always present (endemic regions) is extremely important, yet little is known about women's access to the recommended interventions for malaria in pregnancy or about healthcare providers' adherence to the WHO case management guidelines. In this systematic review and meta-analysis of qualitative, quantitative, and mixed methods studies, the researchers explore the factors that affect women's access to treatment and healthcare provider practices for case management of malaria during pregnancy. A systematic review uses predefined criteria to identify all the research on a given topic. Meta-analysis is a statistical method for combining the results of several studies. A qualitative study collects non-quantitative data such as reasons for refusing an intervention, whereas a qualitative study collects numerical data such as the proportion of a population receiving an intervention.
What Did the Researchers Do and Find?
The researchers identified 37 studies (mostly conducted in Africa) that provided data on the range of healthcare providers visited, antimalarials used, and the factors influencing the choice of healthcare provider and medicines among pregnant women seeking treatment for malaria and/or the type and quality of diagnostic and case management services offered to them by healthcare providers. The researchers explored the data in these studies using narrative synthesis (which summarizes the results from several qualitative studies) and content analysis (which identifies key themes within texts). Among the studies that provided relevant data, one-quarter to three-quarters of women reported malaria episodes during pregnancy. More than 85% of the women who reported a malaria episode during pregnancy sought some form of treatment. Barriers to access to WHO-recommended treatment among women included poor knowledge about drug safety, and the use of self-treatment practices such as taking herbal remedies. Factors that affected the treatment-seeking behavior of pregnant women (“determinants”) included prior use of antenatal care, education, and previous experience of a miscarriage. Among healthcare providers, reliance on clinical diagnosis of malaria was consistently reported, as was poor adherence to the treatment policy. Specifically, 28% and 72% of healthcare providers followed the treatment guidelines for malaria during the first and second/third trimesters of pregnancy, respectively. Finally, the researchers report that concerns over side effects and drug safety, patient preference, drug availability, and cost drove the prescribing practices of the healthcare providers, and that the determinants of provider practices included the type (cadre) of heathcare worker, access to training, and whether they were based in a public or private facility.
What Do These Findings Mean?
These findings reveal important limitations in the implementation of the WHO policy on the treatment of malaria in pregnancy across many parts of Africa and in several other malaria endemic regions. Notably, they show that women do not uniformly seek care within the formal healthcare system and suggest that, when they do seek care, they may not be given the appropriate treatment because healthcare providers frequently fail to adhere to the WHO diagnostic and treatment guidelines. Although limited by the sparseness of data and by inconsistencies in study methodologies, these findings nevertheless highlight the need for further systematic assessments of the extent of substandard case management of malaria in pregnancy in malaria endemic countries, and the need to develop interventions to improve access to and delivery of quality case management of malaria among pregnant women.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001688.
Information is available from the World Health Organization on malaria (in several languages) and on malaria in pregnancy; the 2010 Guidelines for the Treatment of Malaria are available; the World Malaria Report 2013 provides details of the current global malaria situation
The US Centers for Disease Control and Prevention also provides information on malaria; a personal story about malaria in pregnancy is available
Information is available from the Roll Back Malaria Partnership on all aspects of global malaria control, including information on malaria in pregnancy
The Malaria in Pregnancy Consortium is undertaking research into the prevention and treatment of malaria in pregnancy and provides links to the consortium's publications and an online library on malaria in pregnancy
MedlinePlus provides links to additional information on malaria (in English and Spanish)
doi:10.1371/journal.pmed.1001688
PMCID: PMC4122360  PMID: 25093720
25.  The CITRA Pilot Studies Program: Mentoring Translational Research 
The Gerontologist  2007;47(6):845-850.
Purpose
We developed an innovative pilot studies program to foster partnerships between university researchers and agencies serving older people in New York City. The development of researchers willing to collaborate with frontline service agencies and service agencies ready to partner with researchers is critical for translating scientific research into evidence-based practice that benefits community-dwelling older adults.
Design and Methods
We adapted the traditional academic pilot studies model to include key features of community-based participatory research.
Results
In partnership with a network of 265 senior centers and service agencies, we built a multistep program to recruit and educate scientific investigators and agencies in the principles of community-based research and to fund research partnerships that fulfilled essential elements of research translation from university to community: scientific rigor, sensitivity to community needs, and applicability to frontline practice. We also developed an educational and monitoring infrastructure to support projects.
Implications
Pilot studies programs developing community-based participatory research require an infrastructure that can supplement individual pilot investigator efforts with centralized resources to ensure proper implementation and dissemination of the research. The financial and time investment required to maintain programs such as those at the Cornell Institute for Translational Research on Aging, or CITRA, may be a barrier to establishing similar programs.
PMCID: PMC3981742  PMID: 18192638
Community-based participatory research; Investigator development; Research to practice

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