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1.  Perspective of an advocate: a case and framework for research advocacy in Africa 
Infectious Agents and Cancer  2013;8(Suppl 1):S4.
In making an experience-based case for research advocacy in Africa and suggesting a framework for building it, this paper covers factors such as basic tenets of patient advocacy, key components and urgent needs in building strong research advocacy, concepts and approaches from which guidance might be taken, and the feasibility of its development and growth throughout the continent. Research advocacy is defined as the meaningful engagement of patient advocates and their representatives in the research system.
As the clinical research system in Africa is developing and gaining strength, this is an opportune time for research advocacy to form and take root as an embedded component in the research structures on the continent. That is, the current state of development of the research system and the simultaneous interest in and rise of patient advocacy bode well for the likelihood of developing robust research advocacy, suggesting its feasibility. Even so, several developments are urgently needed to build, shore up, and sustain a framework receptive to maximizing the influence of an active network of patient advocates—many training in the subspecialty of research advocacy—and a research structure that supports and embeds advocate engagement.
doi:10.1186/1750-9378-8-S1-S4
PMCID: PMC3716697  PMID: 23902629
2.  Community-based knowledge transfer and exchange: Helping community-based organizations link research to action 
Background
Community-based organizations (CBOs) are important stakeholders in health systems and are increasingly called upon to use research evidence to inform their advocacy, program planning, and service delivery efforts. CBOs increasingly turn to community-based research (CBR) given its participatory focus and emphasis on linking research to action. In order to further facilitate the use of research evidence by CBOs, we have developed a strategy for community-based knowledge transfer and exchange (KTE) that helps CBOs more effectively link research evidence to action. We developed the strategy by: outlining the primary characteristics of CBOs and why they are important stakeholders in health systems; describing the concepts and methods for CBR and for KTE; comparing the efforts of CBR to link research evidence to action to those discussed in the KTE literature; and using the comparison to develop a framework for community-based KTE that builds on both the strengths of CBR and existing KTE frameworks.
Discussion
We find that CBR is particularly effective at fostering a climate for using research evidence and producing research evidence relevant to CBOs through community participation. However, CBOs are not always as engaged in activities to link research evidence to action on a larger scale or to evaluate these efforts. Therefore, our strategy for community-based KTE focuses on: an expanded model of 'linkage and exchange' (i.e., producers and users of researchers engaging in a process of asking and answering questions together); a greater emphasis on both producing and disseminating systematic reviews that address topics of interest to CBOs; developing a large-scale evidence service consisting of both 'push' efforts and efforts to facilitate 'pull' that highlight actionable messages from community relevant systematic reviews in a user-friendly way; and rigorous evaluations of efforts for linking research evidence to action.
Summary
Through this type of strategy, use of research evidence for CBO advocacy, program planning, and service delivery efforts can be better facilitated and continually refined through ongoing evaluations of its impact.
doi:10.1186/1748-5908-5-33
PMCID: PMC2873302  PMID: 20423486
3.  Perspective of an advocate: best practices for Community Outreach Advocacy 
Infectious Agents and Cancer  2013;8(Suppl 1):S3.
Of all the different types of advocacy, Community Outreach Advocacy (COA) is the best methodology. This methodology is the prolegomena to the achievement of all other advocacies including political, fundraising, research, support and education. This is because the outcome of COA awareness work is an informed group of people. Such people can comprehend and tackle any other initiatives in addressing the issue at stake and so prevent and control unnecessary suffering and deaths caused by cancer! At the end of the day, the African Cancer Advocates Consortium (ACAC) will achieve its mission to “Make Cancer a Top Priority in Africa” through informed people.
doi:10.1186/1750-9378-8-S1-S3
PMCID: PMC3716724  PMID: 23902606
4.  Community capacity to acquire, assess, adapt, and apply research evidence: a survey of Ontario's HIV/AIDS sector 
Background
Community-based organizations (CBOs) are important stakeholders in health systems and are increasingly called upon to use research evidence to inform their advocacy, program planning, and service delivery. To better support CBOs to find and use research evidence, we sought to assess the capacity of CBOs in the HIV/AIDS sector to acquire, assess, adapt, and apply research evidence in their work.
Methods
We invited executive directors of HIV/AIDS CBOs in Ontario, Canada (n = 51) to complete the Canadian Health Services Research Foundation's "Is Research Working for You?" survey.
Findings
Based on responses from 25 organizations that collectively provide services to approximately 32,000 clients per year with 290 full-time equivalent staff, we found organizational capacity to acquire, assess, adapt, and apply research evidence to be low. CBO strengths include supporting a culture that rewards flexibility and quality improvement, exchanging information within their organization, and ensuring that their decision-making processes have a place for research. However, CBO Executive Directors indicated that they lacked the skills, time, resources, incentives, and links with experts to acquire research, assess its quality and reliability, and summarize it in a user-friendly way.
Conclusion
Given the limited capacity to find and use research evidence, we recommend a capacity-building strategy for HIV/AIDS CBOs that focuses on providing the tools, resources, and skills needed to more consistently acquire, assess, adapt, and apply research evidence. Such a strategy may be appropriate in other sectors and jurisdictions as well given that CBO Executive Directors in the HIV/AIDS sector in Ontario report low capacity despite being in the enviable position of having stable government infrastructure in place to support them, benefiting from long-standing investment in capacity building, and being part of an active provincial network. CBOs in other sectors and jurisdictions that have fewer supports may have comparable or lower capacity. Future research should examine a larger sample of CBO Executive Directors from a range of sectors and jurisdictions.
doi:10.1186/1748-5908-6-54
PMCID: PMC3123230  PMID: 21619682
5.  Practice-Based Teaching for Health Policy Action and Advocacy 
Public Health Reports  2008;123(Suppl 2):65-70.
SYNOPSIS
The Institute of Medicine has issued numerous reports calling for the public health workforce to be adept in policy-making, communication, science translation, and other advocacy skills. Public health competencies include advocacy capabilities, but few public health graduate institutions provide systematic training for translating public health science into policy action. Specialized health-advocacy training is needed to provide future leaders with policy-making knowledge and skills in generating public support, policy-maker communications, and policy campaign operations that could lead to improvements in the outcomes of public health initiatives. Advocacy training should draw on nonprofit and government practitioners who have a range of advocacy experiences and skills. This article describes a potential model curriculum for introductory health-advocacy theory and skills based on the course, Health Advocacy, a winner of the Delta Omega Innovative Public Health Curriculum Award, at Johns Hopkins Bloomberg School of Public Health in Baltimore, Maryland.
PMCID: PMC2431098  PMID: 18770919
6.  Scaling up the delivery of refractive error services within a district health system: the KwaZulu-Natal, South Africa experience 
Background
In South Africa, the health service is based on a Primary Health Care (PHC) philosophy with the District Health System (DHS) as the locus of delivery. However eye care services, particularly primary eye care, refractive error and low vision, have not been prioritised accordingly. Hence the aim of the Giving Sight to KwaZulu-Natal (GSKZN) project was to integrate the delivery of eye care services into the district health system, with emphasis on addressing the need for uncorrected refractive error and low vision services.
The project was implemented in the KwaZulu-Natal province, South Africa, to scale up the delivery of refractive error services utilising a four pronged approach; including advocacy, human resource development, equipment provision and research.
Methods
This paper is a description of the project and a retrospective analysis of data received through the course of the project from July 2007 to June 2011. Data were collected from training registers, equipment schedules and service delivery reports from institutions. Reports from the data base were then analysed and achievements in training and trends in service delivery were determined.
Results
Over a four year period (July 2007 and July 2011) 1004 persons received training in rendering eye health services appropriate to their level of deployment within the DHS. During the course of the project, these 1004 persons examined 1 064 087 patients. Furthermore, the total number of clinics offering primary eye care, refractive error and low vision services increased from 96 (10%) to 748 (76%). With increased numbers of PHC Nurses trained in primary eye care, a subsequent decrease of 51.08 percent was also observed in the number of patients seeking services at higher levels of care, thus streamlining eye health service delivery.
Conclusion
This project has shown that scaling up can occur in delivering eye health services within a health district, through a multi-faceted approach that encompasses focused training, advocacy, development of appropriate infrastructure and the development of referral criteria with clear guidelines for the management of patients.
doi:10.1186/1472-6963-13-361
PMCID: PMC3852626  PMID: 24074239
Public health; Primary eye health; Refractive error; Service delivery; District health system
7.  Conceptual challenges in the translation of research into practice: it’s not just a matter of “communication” 
ABSTRACT
This paper identifies key barriers to the translation of science into practice and policy and makes recommendations for addressing them. It focuses on the challenges of translation within the field of tobacco control, but we argue that the insights are widely generalisable. Actor-Network Theory is used to frame an analysis, supplemented by focussed discussions with international tobacco control practitioners (service delivery and advocacy) and researchers. The central challenge to translation is that researchers and practitioners have different “practical ontologies”. Researchers use findings from specific contexts to generalise to universal principles, while practitioners try to use these generalisations to inform their work in what are typically a somewhat different set of specific contexts. Neglecting the need to translate back from the general to the particular means research syntheses are not framed to meet practitioners’ needs. Traditional knowledge broking roles need to be extended to better align the needs of researchers and practitioners. This may be facilitated by more creative use of “social computing” to enable real-time input into research syntheses from all interested parties, including input to the questions that research addresses. To do this systematically requires that we construct “generalisation gradients” to help practitioners apply general research conclusions to their particular situation and researchers to identify the relevance of their work. Disadvantaged communities in particular need help, since there is typically less research directly applicable to their contexts; thus, they need to generalise more.
doi:10.1007/s13142-011-0035-1
PMCID: PMC3717645  PMID: 24073049
Translational science; Actor-Network theory; Tobacco control; Knowledge broking; Action research; Social computing
8.  Residents as health advocates: The development, implementation and evaluation of a child advocacy initiative at the University of Toronto (Toronto, Ontario) 
Paediatrics & Child Health  2007;12(7):567-572.
BACKGROUND AND OBJECTIVE:
Advocacy is an integral part of a paediatrician’s role. The Royal College of Physicians and Surgeons of Canada has identified advocacy as one of the essential Canadian Medical Education Directives for Specialists competencies, and participation in child advocacy work as an important component of paediatric residency training. The objective of the present paper was to describe the development, implementation and evaluation of the first four years of the child advocacy initiative at the University of Toronto (Toronto, Ontario).
METHODOLOGY:
Ideas for community child advocacy projects were generated through a literature review, and a link to a local elementary school was identified. Teacher and parent focus groups were conducted to identify areas for resident involvement. Workshops were then developed, implemented and evaluated by paediatric residents.
RESULTS:
Six child advocacy projects between 2001 and 2004 were conducted based on results from the focus groups. These included annual clothing drives, as well as workshops for parents and children about nutrition, safety, parenting, illness management and basic first aid. More than 95% of parents reported that the workshops were useful or very useful, more than 92% felt that they learned something new and more than 83% wanted the residents to return for further workshops. Teachers and residents gave positive informal feedback.
CONCLUSIONS:
Through the child advocacy initiative, paediatric residents had the opportunity to develop skills in advocacy, learn about the determinants of child health and become community partners in advocating for children. Such an initiative can be incorporated into the residency curriculum to help residents develop competency in advocacy.
PMCID: PMC2528778  PMID: 19030427
Advocacy; Community; Medical Education; Paediatrics; Residency
9.  The African cancer advocacy consortium: shaping the path for advocacy in Africa 
Infectious Agents and Cancer  2013;8(Suppl 1):S8.
Although there is significant evidence of a cancer epidemic in Africa, there is limited awareness about cancer in most African countries. By partnering with international organizations and institutions such as the University of Florida and the Prostate Net, the African Organisation for Research and Training in Cancer (AORTIC) is committed to improving cancer advocacy in Africa. This paper presents some of the recent efforts on cancer advocacy in Africa, including the results of a SWOT analysis conducted for the cancer advocacy workshop and the guidelines developed by cancer advocates on best practices for cancer advocacy in Africa. One of the outcomes of these efforts is the African Cancer Advocates Consortium (ACAC) founded by cancer advocates in Africa to, “Make Cancer a Top Priority in Africa”. While we have started the work to strengthen cancer advocacy in Africa, we still have a long way to go. Our goal of making cancer a priority in Africa can mainly be achieved by: (1) increasing the manpower for cancer advocacy through education and training; and (2) strengthening the network of cancer advocates across the continent.
doi:10.1186/1750-9378-8-S1-S8
PMCID: PMC3716719  PMID: 23902674
10.  Community HIV Treatment Advocacy Programs May Support Treatment Adherence 
AIDS Education and Prevention  2012;24(1):1-14.
Treatment advocacy (TA) programs, based in AIDS service organizations and clinics, aim to engage clients into care and support antiretroviral treatment (ART) adherence through client-centered counseling; advocate for patients with providers; and provide social service referrals. Systematic evaluations of TA are lacking. We conducted a non-randomized evaluation examining relationships of TA participation to adherence, care engagement, social services utilization, unmet needs, patient self-advocacy, and adherence self-efficacy among 121 HIV-positive clients (36 in TA, 85 not in TA; 87% male, 34% African American, 31% White, 19% Latino). In multivariate models, TA participants (vs. non-TA participants) showed higher electronically monitored [85.3% vs. 70.7% of doses taken; b(SE)=13.16(5.55), p<.05] and self-reported [91.1% vs. 75.0%; b(SE)=11.60(5.65), p<.05] adherence; utilized more social service programs [Ms = 5.2 vs. 3.4; b(SE)=1.97(0.48), p<.0001]; and had fewer unmet social-service needs [Ms = 1.8 vs. 2.7; b(SE)=−1.06(0.48), p<.05]. Findings suggest the need for a randomized controlled trial of TA.
doi:10.1521/aeap.2012.24.1.1
PMCID: PMC3286035  PMID: 22339141
11.  Harnessing the Power of Advocacy–Research Collaborations 
Feminist criminology  2008;3(4):247-275.
The advocacy–research partnership has been identified as a key method of conducting the feminist and activist research that is important to domestic violence. However, these partnerships are often fraught with challenges that may jeopardize their development, sustainability, and potential impact on policy. Previous commentators have identified key challenges to engaging in advocate–researcher collaborations. This article takes particular care to set forth an advocate perspective through the authors’ experience of planning and executing a collaborative study on the effects of mandatory arrest. The authors use a study that was specifically designed to affect policy to offer insight into the challenges faced and to make recommendations for successfully incorporating social action in advocacy–researcher collaborations.
doi:10.1177/1557085108323365
PMCID: PMC2771936  PMID: 19890488
domestic violence; advocate research collaborations
12.  Best practice eye care models 
Indian Journal of Ophthalmology  2012;60(5):351-357.
Since the launching of Global Initiative, VISION 2020 “the Right to Sight” many innovative, practical and unique comprehensive eye care services provision models have evolved targeting the underserved populations in different parts of the World. At places the rapid assessment of the burden of eye diseases in confined areas or utilizing the key informants for identification of eye diseases in the communities are promoted for better planning and evidence based advocacy for getting / allocation of resources for eye care. Similarly for detection and management of diabetes related blindness, retinopathy of prematurity and avoidable blindness at primary level, the major obstacles are confronted in reaching to them in a cost effective manner and then management of the identified patients accordingly. In this regard, the concept of tele-ophthalmology model sounds to be the best solution. Whereas other models on comprehensive eye care services provision have been emphasizing on surgical output through innovative scales of economy that generate income for the program and ensure its sustainability, while guaranteeing treatment of the poorest of the poor.
doi:10.4103/0301-4738.100526
PMCID: PMC3491257  PMID: 22944741
Diabetes-related blindness; diabetic retinopathy; key informant; rapid assessment of avoidable blindness; retinopathy of prematurity; tele-ophthalmology
13.  Racial/ethnic disparities in the HIV and substance abuse epidemics: communities responding to the need. 
Public Health Reports  2001;116(5):434-448.
In 1998, community leaders prompted members of the Black and Hispanic Congressional Caucuses to urge President Clinton to declare HIV/AIDS a crisis in the African American and Latino communities; their advocacy resulted in the formation of the Minority AIDS Initiative. As part of this initiative, the Center for Substance Abuse Prevention (CSAP) of the Substance Abuse and Mental Health Services Agency funded the Substance Abuse and HIV Prevention Youth and Women of Color Initiative (CSAP Initiative). The CSAP Initiative is the first major federal effort to develop community-based integrated HIV and substance abuse prevention approaches targeting racial/ethnic populations that have been disproportionately impacted by HIV/AIDS. This article describes the current state of HIV prevention research involving racial/ethnic minority populations and the current status of the CSAP Initiative. The data collected through the CSAP Initiative, implemented by 47 community organizations, will help to fill the existing knowledge gap about how to best prevent HIV in these communities. This data collection effort is an unparalleled opportunity to learn about risk and protective factors, including contextual factors, that are critical to the prevention of HIV/AIDS in African American, Latino, and other racial/ethnic minority communities but that are often not investigated.
PMCID: PMC1497361  PMID: 12042608
14.  Development of guidelines on nonoccupational HIV postexposure prophylaxis for the state of Rhode Island. 
Public Health Reports  2004;119(2):136-140.
The Brown University AIDS Program and the Rhode Island Department of Health joined with health care practitioners, researchers, and representatives of community-based health, social service, and advocacy organizations to create comprehensive guidelines on nonoccupational HIV postexposure prophylaxis for the state of Rhode Island. These guidelines offer health care practitioners detailed advice on the evaluation and management of blood or body fluid exposures outside the health care setting, e.g., through sexual assault, consensual sex, injecting-drug use, or needlestick injuries. In these circumstances, HIV postexposure prophylaxis serves those for whom primary prevention measures have failed or were impractical or impossible. The guidelines represent the end product of coordination among private and public, academic and nonacademic, clinician and layperson groups committed to decreasing the incidence of HIV infections in the state of Rhode Island. The guidelines serve as both a resource for health care practitioners and a means of educating them on this method of HIV prevention.
PMCID: PMC1497611  PMID: 15192899
15.  From personal survival to public health: community leadership by men who have sex with men in the response to HIV 
Lancet  2012;380(9839):400-410.
Community leadership and participation by gay men and men who have sex with men (MSM) have been central to the response to HIV since the beginning of the epidemic. Through a wide array of actions, engagement of MSM has been important in the protection of communities. The connection between personal and community health as drivers of health advocacy continue to be a powerful element. The passion and urgency brought by MSM communities have led to the targeting and expansion of HIV and AIDS research and programming, and have improved the synergy of health and human rights, sustainability, accountability, and health outcomes for all people affected by HIV. MSM are, however, frequently excluded from the evidence-based services that they helped to develop, despite them generally being the most effective actors in challenging environments. Without MSM community involvement, government-run health programmes might have little chance of effectively reaching communities or scaling up interventions to lessen, and ultimately end, the HIV pandemic.
doi:10.1016/S0140-6736(12)60834-4
PMCID: PMC3805044  PMID: 22819662
16.  Analysis of consumer information brochures on osteoporosis prevention and treatment 
Purpose: Evidence-based consumer information is a prerequisite for informed decision making. So far, there are no reports on the quality of consumer information brochures on osteoporosis. In the present study we analysed brochures on osteoporosis available in Germany.
Method: All printed brochures from patient and consumer advocacy groups, physician and governmental organisations, health insurances, and pharmaceutical companies were initially collected in 2001, and updated in December 2004. Brochures were analysed by two independent researchers using 37 internationally proposed criteria addressing evidence-based content, risk communication, transparency of the development process, and layout and design.
Results: A total of 165 brochures were identified; 59 were included as they specifically targeted osteoporosis prevention and treatment. Most brochures were provided by pharmaceutical companies (n=25), followed by health insurances (n=11) and patient and consumer advocacy groups (n=11). Quality of brochures did not differ between providers. Only 1 brochure presented lifetime risk estimate; 4 mentioned natural course of osteoporosis. A balanced report on benefit versus lack of benefit was presented in 2 brochures and on benefit versus adverse effects in 8 brochures. Four brochures mentioned relative risk reduction, 1 reported absolute risk reduction through hormone replacement therapy (HRT). Out of 28 brochures accessed in 2004 10 still recommended HRT without discussing adverse effects. Transparency of the development process was limited: 25 brochures reported publication date, 26 cited author and only 1 references. In contrast, readability and design was generally good.
Conclusion: The quality of consumer brochures on osteoporosis in Germany is utterly inadequate. They fail to give evidence-based data on diagnosis and treatment options. Therefore, the material is not useful to enhance informed consumer choice.
PMCID: PMC2703233  PMID: 19675709
pamphlets; osteoporosis/prevention and control; decision making; evidence-based medicine
17.  Advocacy for eye care 
Indian Journal of Ophthalmology  2012;60(5):376-379.
The effectiveness of eye care service delivery is often dependant on how the different stakeholders are aligned. These stakeholders range from the ministries of health who have the capacity to grant government subsidies for eye care, down to the primary healthcare workers who can be enrolled to screen for basic eye diseases. Advocacy is a tool that can help service providers draw the attention of key stakeholders to a particular area of concern. By enlisting the support, endorsement and participation of a wider circle of players, advocacy can help to improve the penetration and effectiveness of the services provided. There are several factors in the external environmental that influence the eye care services – such as the availability of trained manpower, supply of eye care consumables, government rules and regulations. There are several instances where successful advocacy has helped to create an enabling environment for eye care service delivery. Providing eye care services in developing countries requires the support – either for direct patient care or for support services such as producing trained manpower or for research and dissemination. Such support, in the form of financial or other resources, can be garnered through advocacy.
doi:10.4103/0301-4738.100530
PMCID: PMC3491261  PMID: 22944745
Advocacy; effective service delivery; enabling environment; stakeholders; resources
18.  Psychological Research With Administrative Data Sets: An Underutilized Strategy for Mental Health Services Research 
A key element in the identity of professional psychologists is their commitment to base practice on the best knowledge available about a problem being tackled. Although administrative data (e.g., records of provider billing and procedures) can often shed light on the dark areas of the complex U.S. health care system, psychologists make notably little use of them. Experience teaches that decisions must often be made despite the absence of “gold standard” knowledge from the well-designed, controlled studies learned in graduate school. Increased involvement of psychologists in work using administrative data can improve service provision but requires that psychologists adopt unaccustomed approaches to research. The authors discuss administrative data's strengths and limitations, recent progress made in using them, how psychologists can acquire and use low-cost information from administrative data, and examples of questions that can be answered.
doi:10.1037/0735-7028.36.5.551
PMCID: PMC1383505  PMID: 16505898
health services; Medicaid; Medicare; insurance; evaluation
19.  Teaching and Assessing Systems-Based Practice: A Pilot Course in Health Care Policy, Finance, and Law for Radiation Oncology Residents 
Background
Under the Accreditation Council for Graduate Medical Education (ACGME) Outcome Project, residency programs are required to provide data on educational outcomes and evidence for how this information is used to improve resident education.
Objective
To teach and assess systems-based practice through a course in health care policy, finance, and law for radiation oncology residents, and to determine its efficacy.
Methods and Materials
We designed a pilot course in health care policy, finance, and law related to radiation oncology. Invited experts gave lectures on policy issues important to radiation oncology and half of the participants attended the American Society for Therapeutic Radiation and Oncology (ASTRO) Advocacy Day. Participants completed pre- and postcourse tests to assess their knowledge of health policy.
Results
Six radiation oncology residents participated, with 5 (84%) completing all components. For the 5 residents completing all assessments, the mean precourse score was 64% and the mean postcourse score was 84% (P  =  .05). Improvement was noted in all 3 sections of health policy, finance, and medical law. At the end of the course, 5 of 6 residents were motivated to learn about health policy, and 4 of 6 agreed it was important for physicians to be involved in policy matters.
Conclusions
Teaching radiation oncology residents systems-based practice through a course on health policy, finance, and law is feasible and was well received. Such a course can help teaching programs comply with the ACGME Outcome Project and would also be applicable to trainees in other specialties.
doi:10.4300/JGME-D-09-00092.1
PMCID: PMC2951778  PMID: 21976087
20.  Expanding roles in a library-based bioinformatics service program: a case study 
Question:
How can a library-based bioinformatics support program be implemented and expanded to continuously support the growing and changing needs of the research community?
Setting:
A program at a health sciences library serving a large academic medical center with a strong research focus is described.
Methods:
The bioinformatics service program was established at the Norris Medical Library in 2005. As part of program development, the library assessed users' bioinformatics needs, acquired additional funds, established and expanded service offerings, and explored additional roles in promoting on-campus collaboration.
Results:
Personnel and software have increased along with the number of registered software users and use of the provided services.
Conclusion:
With strategic efforts and persistent advocacy within the broader university environment, library-based bioinformatics service programs can become a key part of an institution's comprehensive solution to researchers' ever-increasing bioinformatics needs.
doi:10.3163/1536-5050.101.4.012
PMCID: PMC3794686  PMID: 24163602
21.  An Architecture for Standardized Terminology Services by Wrapping and Integration of Existing Applications 
Research on terminology services has resulted in development of applications and definition of standards, but has not yet led to widespread use of (standardized) terminology services in practice. Current terminology services offer functionality both for concept representation and lexical knowledge representation, hampering the possibility of combining the strengths of dedicated (concept and lexical) services. We therefore propose an extensible architecture in which concept-related and lexicon-related components are integrated and made available through a uniform interface. This interface can be extended in order to conform to existing standards, making it possible to use dedicated (third-party) components in a standardized way. As a proof of concept and a reference implementation, a SOAP-based Java implementation of the terminology service is being developed, providing wrappers for Protégé and UMLS Knowledge Source Server. Other systems, such as the Description Logic-based reasoner RACER can be easily integrated by implementation of an appropriate wrapper.
PMCID: PMC1480276  PMID: 14728158
22.  Dilemmas in rationing health care services: the case for implicit rationing. 
BMJ : British Medical Journal  1995;310(6995):1655-1659.
With tension between the demand for health services and the cost of providing them, rationing is increasingly evident in all medical systems. Until recently, rationing was primarily through the ability to pay or achieved implicitly by doctors working within fixed budgets. Such forms of rationing are commonly alleged to be inequitable and inefficient and explicit rationing is advocated as more appropriate. Utilisation management in the United States and quasi-markets separating purchasing from provision in the United Kingdom are seen as ways of using resources more efficiently and are increasingly explicit. There is also advocacy to ration explicitly at the point of service. Mechanic reviews the implications of these developments and explains why explicit approaches are likely to focus conflict and dissatisfaction and be politically unstable. Explicit rationing is unlikely to be as equitable as its proponents argue and is likely to make dissatisfaction and perceived deprivation more salient. Despite its limitations, implicit rationing at the point of service is more sensitive to the complexity of medical decisions and the needs and personal and cultural preferences of patients. All systems use a mix of rationing devices, but the clinical allocation of services should substantially depend on the discretion of professionals informed by practice guidelines, outcomes research, and other informational aids.
Images
PMCID: PMC2550019  PMID: 7795458
23.  Trends in hospital librarianship and hospital library services: 1989 to 2006 
Objective:
The research studied the status of hospital librarians and library services to better inform the Medical Library Association's advocacy activities.
Methods:
The Vital Pathways Survey Subcommittee of the Task Force on Vital Pathways for Hospital Librarians distributed a web-based survey to hospital librarians and academic health sciences library directors. The survey results were compared to data collected in a 1989 survey of hospital libraries by the American Hospital Association in order to identify any trends in hospital libraries, roles of librarians, and library services. A web-based hospital library report form based on the survey questions was also developed to more quickly identify changes in the status of hospital libraries on an ongoing basis.
Results:
The greatest change in library services between 1989 and 2005/06 was in the area of access to information, with 40% more of the respondents providing access to commercial online services, 100% more providing access to Internet resources, and 28% more providing training in database searching and use of information resources. Twenty-nine percent (n = 587) of the 2005/06 respondents reported a decrease in staff over the last 5 years.
Conclusions:
Survey data support reported trends of consolidation of hospitals and hospital libraries and additions of new services. These services have likely required librarians to acquire new skills. It is hoped that future surveys will be undertaken to continue to study these trends.
doi:10.3163/1536-5050.97.4.011
PMCID: PMC2759173  PMID: 19851491
24.  Description of a Research-Based Health Activism Curriculum for Medical Students 
Journal of General Internal Medicine  2006;21(12):1325-1328.
INTRODUCTION
Few curricula train medical students to engage in health system reform.
AIM
To develop physician activists by teaching medical students the skills necessary to advocate for socially equitable health policies in the U.S. health system.
SETTING
Montefiore Medical Center, the University Hospital of the Albert Einstein College of Medicine, Bronx, NY.
PROGRAM DESCRIPTION
We designed a 1-month curriculum in research-based health activism to develop physician activists. The annual curriculum includes a student project and 4 course sections; health policy, research methods, advocacy, and physician activists as role models; taught by core faculty and volunteers from academic institutions, government, and nongovernmental organizations.
PROGRAM EVALUATION
From 2002 to 2005, 47 students from across the country have participated. Students reported improved capabilities to generate a research question, design a research proposal, and create an advocacy plan.
DISCUSSION
Our curriculum demonstrates a model for training physician activists to engage in health systems reform.
doi:10.1111/j.1525-1497.2006.00608.x
PMCID: PMC1924746  PMID: 16961754
medical education; professionalism; health care reform; curriculum evaluation
25.  Expanding the Delivery of Clinical Preventive Services Through Community Collaboration: The SPARC Model 
Preventing Chronic Disease  2007;5(1):A20.
Background
Population-based rates of adult vaccinations and cancer screenings are low, with less than 40% of older adults up to date with routinely recommended prevention services. Delivery rates are lower still in poor and minority communities.
Context
During the past 10 years, Sickness Prevention Achieved through Regional Collaboration (SPARC), a New England–based nonprofit agency, has developed a promising model for increasing community-wide delivery of prevention services. However, the SPARC model has not been tested in communities elsewhere. In 2006, the Centers for Disease Control and Prevention facilitated a partnership between SPARC and the Aging Services division of the Atlanta Regional Commission to evaluate the program's replicability.
Methods
SPARC coalitions involving local public health agencies, hospitals, social service organizations, and advocacy groups were established in two counties of the region, with the Atlanta Regional Commission providing regional coordination. Using the SPARC model, the coalitions planned, marketed, and implemented community-based activities to deliver adult screenings and vaccinations.
Consequences
During a 3-week pilot phase, SPARC clinics were held in central Atlanta at three senior housing facilities, a local fire station, and a charter middle school, delivering 353 prevention services to 314 residents. In Fayette County, 634 people received influenza vaccinations on Election Day at SPARC clinics located near 10 polling places.
Interpretation
The SPARC model provides a practical framework for improving the community-wide delivery of disease prevention services. The model can galvanize local health services providers to develop successful locally tailored interventions, and the approach is applicable in communities outside of SPARC's home region.
PMCID: PMC2248782  PMID: 18082009

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