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Clinical and Histological Features in Wegener Granulomatosis
Li Cavoli Gioacchino, Passantino Rita, Bono Luisa, Tortorici Calogera, Ferrantelli Angelo, Giammarresi Carlo, Rotolo Ugo

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Anne Lanham, Lillian Mwanri

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Research for Health Priorities in the Northern Cape Province: Fostering Research Capacity to Translate the Identified Research Needs into Action

Eshetu Bekele Worku

Northern Cape Department of Health, Kimberley 8301, South Africa

Abstract: Background: Over the past decades active community engagement in health research has gained significant attention in people-centered health systems throughout the world. Yet there is little evidence about how best to enhance active community engagement in setting priorities for health research, particularly from low-and middle-income countries (LMICs). This study presents the approaches employed to identify health research priorities and the lesson learnt from the Northern Cape Province in South Africa. Methods: A combination of approaches involving the Essential National Health Research (ENHR), and the World Café consultation processes with the support of experts’ ideas used to enhance key stakeholders (n=41) participation towards the identification of health research priorities for the province. A document on the burden of diseases, health systems challenges and population health status indicators was presented and critically reviewed at the workshop. Results: The top ten health research prority areas for the province identified with active community engagement. More than 90% of the prioritised research areas are operational research which are linked to health services delivery challenges including health systems issues, burden of diseases, health program effectiveness, and the social determinants of health. Conclusion: Active community engagement in setting research priorities for health is a necessary first step to improve the delivery of good quality, equitable and accessible healthcare services for all citizens. However, the current limited resource capacities both in terms of funding and human resources for health research is a concern; and may hamper the effective translation of research priorities to actual action.

Keywords: health research, priority setting, community participation, World Café, capacity, Northern Cape

Citation: Eshetu Bekele Worku, Research for Health Priorities in the Northern Cape Province: Fostering Research Capacity to Translate the Identified Research Needs into Action. American Journal of Public Health Research, 5 (1). 23-29. January 2017. doi:10.12691/ajphr-5-1-5

1. Background

Goals to narrow population level health disparities cannot be achieved without active community engagement. Studies indicate that, over the past decades, participatory approaches to advance better health for all citizens have gained increased attention throughout the world [1,2]. The ever-increasing health disparities among population groups, the need to create better economic opportunities, and to alleviate the level of poverty particularly in developing countries made strong cases for increased community engagement in people-centered health systems. There is a well-established correlation that the healthier the citizens of a country, the more effective the workforce; which in turn fosters better country’s socioeconomic development [1,2]. Thus, improving health systems performances is critical to make rapid progress towards achieving these goals [1,2]. Health system is deemed to have a role to play in creation of healthier workforce by providing good quality, equitable and accessible healthcare services for all citizens.

Health problems that developing countries currently face are not only a complex diseases burden which distributed disproportionately among population groups and geographical settings, poorly functioning health systems, but also inadequate research to identify health delivery gaps and challenges [3,4,5]. As expressed by empirical studies, research with active community engagement is a vital tool to optimise health systems performances and promote good population health outcomes as well as to meet country’s development goals [6,7,8,9]. Recognizing the significant role of research, for improving health systems performances, develop appropriate public health policies, health program effectiveness, and better population health outcomes, currently it is high on the international agenda [10,11,12,13].

Active community engagement in health research can greatly add value to evidence-based research outcomes for tackling health challenges in most cost-effective and sustainable ways [11,14,15]. Cost-effective health interventions may have large-scale effects on population health outcomes which makes it community engagement a promising strategy for reducing health inequalities in LMICs. This study aims to present the broad approaches that were employed to identify health research priorities by informed participants, and the lesson learnt from the Northern Cape Province in South Africa.

Council on Health Research for Development (COHRED) recommended LMICs should undertake Essential National Health Research (ENHR) approach to prioritise health research areas towards equitable healthcare for all, and to support country’s socioeconomic development [16,17]. To help improve health systems performances, the first World Health Organization (WHO) wide research for health strategy was adopted on its Sixty-third World Health Assembly (WHA) in 2010 [18]. As expressed by WHO, without strengthening health systems by evidence-based research outcomes, many developing countries will make little headway to tackle health inequities and appropriately tackle the burden of diseases. The Bamako Call for Action, for instance, was a milestone on political commitment that marked the importance of WHO Member States to put efforts on both improving and being accountable for the performance of their health systems [19].

The Bamako Call for Action specifically called the Ministry of Health in each country to allocate at least 2% of the health budgets for health research [19]. This document not only highlighted the importance of heath research in their health policies and health programmes, but also insist on the need for adequate funding for health research among others. Furthermore, in its application a broad set of roles were proposed for health institutions that take the research agenda a step further. These include identifying health research priority areas, improve institutional capacities for conducting health research, implementation of research recommendations, assess health policy impacts, set and enforce health research ethics standards and regulations, promote best practices, develop mechanisms for inter-sectoral and inter-country research collaboration and coordination among others [18,19].

South Africa is one of the countries that adopted the ENHR plan [20]. According to the National Department of Health country’s health research policy strategy, health research should contribute to deliver better healthcare for all [21]. For this reason, research on health is one of the ten point plan of priority areas of the Department of Health. However, recognising the number of possible competing ideas for health research, and the available limited resources, prioritising of research areas is recommended as a key strategy by the National Health Act, No. 61, 2003 [21]. Section 70 of the Act states that the National Health Research Committee must identify and advise the Health Minister on health research priorities. In addition, Section 73 of the Act states that every institution, health agency and health establishment at which health research is conducted, must establish or have access to a health research ethics committee to promote responsible research.

Despite the benefits of community engagement, there is a considerable debate in the literature about how to promote meaningful and effective community participation. Studies indicate that it is only the right kind of participatory methods and well-coordinated research activities that help in creation of dynamic health sector that is capable to tackle health problems [22,23]. This debate has been usually about the capacity of a community, their proper representation as well as the levels and approaches used for their engagement to achieve the desired impact [10,24,25]. A host of international studies warn that in the absence of research for health priority setting based on community’s active participation, there is a risk that research may be conducted driven by experts or funder’s research agendas for their own purposes. This may result a lot more of quality research than selecting the right research to channel the scarce resources for health research that should optimize population health benefits and lead to equity in health. Evidence also shows that in most cases, such research recommendations failed to respond to the explicit health needs or health problems of the communities in question [26,27,28].

Creating a platform for active community engagement to discuss what their health needs and health services gaps is the appropriate strategy to understand their values and preferences in order to integrate them with experts’ ideas. In the Northern Cape Province, the World Café [29] and ENHR approaches [16] used to facilitate the discussion among its stakeholders including community leaders (n=15, from all five districts of the province) to identify health research areas for the province. This is a positive move in the right direction towards better health for all citizens in the province. However, there are still important issues which need urgent attention. These include addressing the limited resource capacity, both in terms of research funding and human resources for health research, is critically important to effectively translate research priorities to actual action.

Figure 1. processes used to identify the top ten research areas for health (Source: Author created figure)

2. Methods

A combination of methods involving the Essential National Health Research (ENHR) and World Café consultation processes with the support of experts’ ideas used to enhance key stakeholders participation to identify the top ten health research priorities. Furthermore, to help improve the state of knowledge, a document which include the burden of diseases, health systems challenges and a range of population health status outcome indicators from the province was presented and critically reviewed at the workshop. Broadly speaking, the priority setting process took an interlinked three steps. First, the workshop organizing the Research and Development unit gathered potential health research areas from different program units of the department with a view to consider them in the priority list. Second, to help the understanding of the proposed research areas/questions, relevant program managers were invited to made presentations for workshop participants. Each presentation was followed by questions and answers sessions to further clarify on matters in questions and discuss its relevance for priority. Third, the workshop participants systematically prioritised the top ten major health research areas for the province. Figure one presents steps followed to identify the top ten health research priorities.

2.1. ENHR Approach

Over the past two decades, the use of ENHR approach for health research priority setting has gained increased attention world-wide [10,15]. The ENHR approach to combat the ever increasing health inequities proposes stakeholders’ engagement as an instrument for raising issues that are relevant for them [30]. Accordingly, it promotes a systematic and transparent discussions and debate among health sector stakeholders, communities, health policy makers and research funding agencies to effectively address health equity and growth issues. The approach highlighted improving the effectiveness of the health systems driven by a genuine concern for community’s health problems and values is a key element in fighting avoidable health disparities and effective use of limited health resources. Consequently, the ENHR approach, intrinsically links health policy, program practice and research outputs.

Research can promptly and efficiently be applied in health programmes and its impact should contribute to the achievement of health policy objectives and goals of a country. According to the Commission on Health Research for Development, the rationale for the choice of methods for setting health research priorities should not lose sight of the fundamental questions: whose voices are heard, whose views prevail and thus, whose health interests are advanced [31]. Hence the ENHR approach clearly provide the chance to flag the voices of communities to be heard in the process of setting prioritises for health research. In doing so, the approach moves the community from passive receivers of services from research outcome, to a community that actively be part of the solutions.

2.2. World Café Approach

The principles of the World Café method promotes transparent conversations/consultations as key process in matter that affect corporate, government, and communities for development [29,31]. It is an easy-to-use method for creating a living dialogue around questions that matter. According to the method, the knowledge that society need to answer specific question, such as setting health research priorities can be achieved through the power of collective insight that evolves from consultation with relevant people; honouring unique contributions; connecting ideas; noticing deeper themes and questions.

A total of 41 participants (15 community representative, 3 from each of the five districts of the province) have attended a two day workshop that used the World Café method to promote effective participation and identify the top ten health research priority areas. To promote effective engagement, the workshop participants were divided into five groups, where each group containing seven to eight diverse participants. Each group sat around a table and discussed about the open-ended research questions for about 30 minutes. A paper tablecloth used to write on and draw group discussions and responses for these questions. Once the agreed upon time ended, participants switched to new tables where a table host at the new table briefly highlighted the previous group(s) discussions and responses. In such a way, participants had five rounds of conversation in response to the open-ended sets of potential health research areas that were identified prior to the workshop from different program units of the department. All participants got the opportunity to know and discuss the ideas raised at each table from the previous group(s) and were able to add their perspectives to expand the collective knowledge on issues. Groups were encouraged to write or doodle on a paper tablecloth so that when the group changes the tables, they can see what the previous groups have expressed. Finally, at the end of round five, each table host reported out and shared the harvested work from their table with the whole group.

2.3. Preparation, Organization and Details of the Workshop

Several steps were followed towards the identification of the health research priorities for the province. First, staff at the Research and Development unit of the Department were tasked the responsibility to coordinate and oversee the overall aspects of the process. Some of the tasks include planning of the priority setting process, facilitating the workshop, and communicating of the results of the workshop to appropriate audience including authorities. Second, in an effort to obtain effective engagement, prior to the workshop date, the objectives of the workshop, a document that include the provincial burden of diseases, the health systems challenges, and indicators on population health status along with the submitted potential research areas from programme units compiled. Third, to help explore the state of knowledge, the department invited experts specialized in specific areas such as public health, epidemiology, health economist, physicians, nurses, as well as a total of 15 community representatives from all five districts of the province, researchers, policy makers, NGOs, and academicians to discuss and debate on the issue. More than one-third (35%) of the participants were community leaders elected from their respective communities. In addition to this, a facilitator who is familiar with the World Café method and ENHR approach was contracted to facilitate the workshop and assist the Research and Development unit in the writing up of the workshop report. Fourth, a document which contains potential research areas/questions and was distributed to all participants prior to the workshop date was presented and reviewed. This makes it easier the understanding and focused debates on the proposed research areas. Fifth, participants were divided into five sub-groups with seven to eight persons in each group to apply the World Café method. The method creates the platform for information sharing, discussion and knowledge building on what matters in communities health issues and services, as well as what to be priorities as health research for the province. Six, finally, a plenary joint session with all participants conducted where group reports were presented and discussed in detail towards setting the top ten health research priority areas for the province.

2.4. Ethical Considerations

The health research priority setting was conducted, based on the three basic health research ethical principles: autonomy, beneficence and justices. Accordingly, the participants were assured with the right to self-determination or autonomy; right to privacy and confidentiality of individual information and principles of beneficence, that underline the ethical obligation to do well or generate benefits for the communities from research that will be conducted.

3. Results

The top ten health research priority areas for the province have been identified out of the forty four (44) potential research areas that were submitted by different programme units of the department for consideration. More than 90% of the identified health research priority areas are basic or applied research; while the remaining close to 10% are related to medical intervention studies, particularly on poor treatment adherence and drug resistance in Tuberculosis cases. The use of community leaders’ (n=15) and their active engagement in the process was crucial in order to identify the right priorities tailored to their health challenges. This was demonstrated by the number and type of flagged community’s health problems and health disparity issues as well as the support commitments for jointly addressing the challenges. Per se, their genuine participation of community representatives greatly added value through connecting population health challenges with potential research areas. Moreover the support commitment may suggest that the proposed research areas have been relevant to reflect more of the communities’ perspectives.

Table 1. Top ten health research priority areas identified for the province

The workshop participants collectively recommended these broad priorities to be considered as the provincial research for health priority areas for the coming three to five years or until they are updated or revised and/or replaced by new priorities. Furthermore, a decision was made to execute these research priorities on three levels in terms of their time span, short-term (12-18 months), medium term (19-36 months) or long-term (37-60 months). Moreover, it is also suggested that community members' be part of a program design, implementation, and evaluation activities. This was a necessary first step on the way to improving the delivery of equitable and accessible healthcare services for all citizens. However, less attention was given on how to overcome the limited resources for health research.

4. Discussion

Much is known about how health is a valuable source of human well-being and also an instrument for fighting poverty. However, rapid progress towards better healthcare for all is greatly hampered by multiple factors in many LMICs. Theoretically, there are a number of mechanisms through which population health can be improved in a given country or different geographical settings within a country. Many researchers and policy makers agree in LMICs achieving this goal is mostly dependent on strengthening the health systems to provide the quality, equitable and accessible health services for all irrespective of their socioeconomic status. Recognizing the contribution of research to understanding on how best to approach health system strengthening, the Northern Cape Department of Health with active community engagement has identified the top ten health research priority areas for large effects on population health. Conducting research on the identified research priority list and their outputs is considered as vital for policy formulation and program practices to strengthening health systems, to indicate appropriate and specific actions to tackle health inequity and reduce the root causes of current illness in the province.

Remarkably communities’ meaningful engagement through active discussions and debates was critical to link their heath challenges/gaps with the identified health research priorities as well as to get their buy-in and the desire to participate in problem resolution. Studies indicate that health research that doesn’t include the needs of the communities not only cuts people from the very opportunity structure, but also misses relevant evidence to inform decision making [6,7]. Evidence suggests that globally, in recent years, there is a growing recognition on the benefits of research that accompanied with communities just and fair inclusion for solving complex health disparities in sustainable ways [32,33]. Doing so will support the information needs of decision makers at all levels to give higher priority to tackle the widespread causes of illness, inequity in health and the social determinants of health. Improvements in social determinants of health may be as important as improvement in population health status [5].

This report provides information on the approaches that have been used, the identified health research priorities, and the lessons learnt from the Northern Cape Province as well as the benefits of communities’ engagement. However, there are still many barriers that prevent effective health research to promote population health in many LMICs [34,35]. Studies indicate inadequate resources, poor infrastructure, high burden of diseases including HIV/AIDS, tuberculosis, and health inequities as well as the emerging non-communicable diseases such as cancer, hypertension, diabetes and heart disease presents a significant challenge to the health sector.

This argument for improving population health through active community engagement is particularly relevant for many LMICs with limited resources. Empirically, improvements in population health status go hand in hand with the quality of research outcomes to help improve the capacity of decision-makers recognize the challenges and planners to design and implement sound intervention strategies towards addressing the challenges [1,36,37]. Hence, community engagement should be promoted to enhance better population health outcomes through a number of mechanisms. As expected, the recommended major research priority areas for the province have captured most of these challenges. The top ten identified priority areas include:- absence of baseline data on the epidemiology trends of the burden of disease, their prevalence and distributions; weak health system and its challenges; the social determinants of health and their disproportionate ill health impacts; HIV/AIDS and TB co-infections; poor adherence of Tuberculosis treatment; inadequate resources for delivery of health services particularly in the Primary Health Care model; individual level behaviour towards healthy life styles; unwanted teenage pregnancies; and poor alignment of resources with planning as well as poor monitoring, evaluation and reporting systems. Producing good quality and credible outputs from the identified priority areas significantly support policy formulation and program level operational efficiencies and effectiveness.

While there is no dispute about the benefits of health research, evidence shows that it is only a well-conducted research is capable to produce the desired outcomes [32]. In many LMICs there is a need to create conducive research environment, developing capacity to conduct research, and adequate funding [34,35]. Lack of adequate research capacity both in terms of funding and human resources may hamper research progress in health sector [36]. This suggests that at the core of the identified research list, answering the important question “what comes next” is critical to translate the identified health research priorities into actual action. Funding for health systems research in many LMICs is far too low (0.02% of health expenditure) to have a significant impact on health systems and development goals [37].

Implementing the WHO resolution expressed in the 2008 Bamako Call to action on research for health is particularly critical in LMICs to strengthening research capacity. In the resolution the proposed strategies include but not limited to priority problems for research need to be identified; Ministry of Health in each country should allocate at least 2% of its budgets for health research; improve institutional and systemic capacities for implementing research are a positive move to improve health among others [16,38]. Commitment towards this commitment to allocate 2% of health budgets on health research by African Ministers of Heath will contribute substantially in strengthening capacity and support the information needs of policy and decision makers. In addition, developing human resources for health research capacity at provincial level will have many benefits including translating research outputs into policy and practice; reducing external service providers’ research costs; support and encourage more collaborative work with research partners; promote effective use of health data for planning and monitoring as well as effective implementation of research recommendations applied to their specific conditions [35,36].

In conclusion, the ethical shift regarding the role of active communities’ engagement in health research and use of their inputs to influence health policy and decisions to strengthen health policies and program practices is the result of a systematic and theoretical reflection on what is morally the right thing to do. Having reached this point, there are still important issues which need adequate attention. First, the provincial health budget allocation should follow the ethical paradigm change by amending the current very low or in some cases non-existent budget allocation for operational research. Second, the human resources for health research capacity should be developed to consider operational health research, including the role of the coordination of other research recommendations. Doing so will assist to identify and address the health challenges of the communities and provide high-quality and relevant evidence to decision makers to effectively focusing and channelling scarce resources to research that have optimal benefit to the communities. Third, the role of communities in health research needs to be strengthened through effective monitoring and evaluation of health policy and program impacts.

4.1. Lesson Learnt

1. Health policy makers and planners must actively engage with community’s to significantly influence health program effectiveness and address community’s health challenges. In the Northern Cape Province engagement with community representatives was quite helpful to understand and underpin their health challenges in order to prioritize health research areas/questions tailored to their health problems and unmet health needs.

2. Not all health research priority setting processes will necessarily replicate the same approach. Thus a combination of different methods can be used, depending on the particular circumstances. The ENHR and the World Café approaches were used for enhancing stakeholders’ consultation and debate that led to the development of border health research priorities for the province. However, it may be important to further simplify the identified broader research areas.

3. Not all health problems/questions in health sector require research or extensive resources. Some problems can be addressed by applying simple and appropriate actions. The fact that more than 90% of the identified research priority areas are basic or applied research suggests that there is a need to improve operational effectiveness and greater accountability in the use of limited health resources in the province.

4. Theoretically, priority health research list assists researchers and policy makers for effectively focusing and channelling of scarce resources to research that has optimal benefit for public health. However, there is a question mark over whether effective translation of these research wishes into research practice particularly in resources poor settings. There is a need to address the capacity limitations to optimally benefit from potential researches.

5. Conclusion

The process of setting health research priorities for the province has been concluded by listing the top ten health research areas using the World Café and ENHR approaches. The approaches greatly enhanced active community participation. However, answering the question “what comes next” is critical to address the institutional limited capacity. This is very important for increased investment in health. First, health sectors at provincial level have greater operational research needs and opportunities for conducting such research. Second, in most cases, research conducted by internal staff is significantly lower cost compared to research services at external provider’s cost. Hence cost-savings can be achieved. Third, due to the sense of ownership implementing research output/recommendations there will be effective translation of research outputs into policy development, program practice, and therefore quality of health services can henceforth be improved. Fourth, it will create better collaborative action with communities.

5.1. Limitation

Health research areas were not ready available from districts, therefore the provincial priorities may not be aligned with district priorities for action. We acknowledge that this approach may have resulted in some gaps both in the burden of diseases and interventions needed.

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