J.E.W. Broerse

Patient participation as dialogue: setting research agendas

Background  Collaboration with patients in healthcare and medical research is an emerging development. We aimed to develop a methodology for health research agenda setting processes grounded in the notion of participation as dialogue.

Patients' priorities concerning health research: The case of asthma and COPD research in The Netherlands

Background  Although patients are increasingly involved in agenda setting within specific fields of health research, they rarely participate in decision‐making on the entire breadth of health research, including biomedical research. This might be attributable to a widely held view that patients are incapable of adequate research prioritization due to a lack of relevant knowledge, a failure to look beyond their own individual problems or an inability to objectively consider long‐term targets.

Patient-expert partnerships in research: how to stimulate inclusion of patient perspectives.

Objective  To gain more insight into exclusion mechanisms and inclusion strategies in patient–expert partnerships.

Transdisciplinarity: The New Challenge for Biomedical Research:

During the past decade, patient participation became an important issue in the medical field, and patient participation in biomedical research processes is increasingly called for. One of the arguments for this refers to the specific kind of knowledge, called experiential knowledge, patients could contribute. Until now, participation of patients in biomedical research has been rare, and integration of patients’ experiential knowledge with scientific knowledge—in the few cases it takes place—occurs implicitly and on an ad hoc basis. This is illustrated by describing and analyzing the activities of the German patient group on retinitis pigmentosa. The authors argue that to be able to optimize the use of experiential knowledge of patients in biomedical research, a systematic approach is required. Transdisciplinary research provides such an approach, systematically, explicitly, and deliberately integrating knowledge from different scientific and nonscientific sources. In this article, the concept of transdisciplinarity is elaborated upon. The authors propose a possible procedure, identify necessary conditions and skills, and evaluate the feasibility of its implementation and institutionalization. Finally, the authors introduce a recent research project to further investigate and implement transdisciplinary research in the biomedical field.

Applicability of the WHO Maternal Near Miss Criteria in a Low-Resource Setting

Background Maternal near misses are increasingly used to study quality of obstetric care. Inclusion criteria for the identification of near misses are diverse and studies not comparable. WHO developed universal near miss inclusion criteria in 2009 and these criteria have been validated in Brazil and Canada. Objectives To validate and refine the WHO near miss criteria in a low-resource setting. Methods A prospective cross-sectional study was performed in a rural referral hospital in Tanzania. From November 2009 until November 2011, all cases of maternal death (MD) and maternal near miss (MNM) were included. For identification of MNM, a local modification of the WHO near miss criteria was used, because most laboratory-based and some management-based criteria could not be applied in this setting. Disease-based criteria were added as they reflect severe maternal morbidity. In the absence of a gold standard for identification of MNM, the clinical WHO criteria were validated for identification of MD. Results 32 MD and 216 MNM were identified using the locally adapted near miss criteria; case fatality rate (CFR) was 12.9%. WHO near miss criteria identified only 60 MNM (CFR 35.6%). All clinical criteria, 25% of the laboratory-based criteria and 50% of the management-based criteria could be applied. The threshold of five units of blood for identification of MNM led to underreporting of MNM. Clinical criteria showed specificity of 99.5% (95%CI: 99.4%–99.7%) and sensitivity of 100% (95%CI: 91.1%–100%). Some inclusion criteria did not contribute to the identification of cases and therefore may be eligible for removal. Conclusion The applicability of the WHO near miss criteria depends on the local context, e.g. level of health care. The clinical criteria showed good validity. Lowering the threshold for blood transfusion from five to two units in settings without blood bank and addition of disease-based criteria in low-resource settings is recommended.

Involving burn survivors in agenda setting on burn research: An added value?

BACKGROUND AND AIM The role of burn survivors in burn research is usually restricted to being objects of study and beneficiaries of research results, while decision-making on research is traditionally the domain of a small group of experts, mainly scientists. In this article we compare the research priorities of burn survivors and professionals and investigate to what extent it is possible to come to a joint research agenda. METHODOLOGY The project followed the Dialogue Model for research agenda setting. Initially burn survivors and professionals were consulted separately and group-specific lists of research priorities were established, using a literature survey, exploratory interviews (n=10), focus groups (n=58), a questionnaire (n=224) and Delphi rounds (n=12). Subsequently, in a dialogue meeting burn survivors and professionals presented and discussed their priorities, developed one integrated list, and prioritized the 15 most important topics on this list. RESULTS Considerable overlap was observed between the research priorities of burn survivors and professionals, particularly with respect to biomedical and clinical research on wound healing and scar management. However, differences were also observed, e.g. treatment of itching and oedema on scars and donor places. CONCLUSION The model proved useful in eliciting research priorities from both professionals and burn survivors, and in stimulating a meaningful dialogue between these groups. The involvement of burn survivors identified burn research areas that are currently not the focus of research in The Netherlands.

How can transdisciplinary research contribute to knowledge democracy

In any society, a wide diversity of actors has relevant knowledge concerning important societal problems. In a knowledge democracy both dominant and non-dominant actors have equal access and ability to put this knowledge forward in the process of solving societal problems. In order to enable these actors to contribute meaningfully to decision-making around public policy and research agendas, we argue that a transdisciplinary research process is needed. In this chapter we critically reflect on the principles, concepts and core methods of transdisciplinary research. We first look at the national historical roots of transdisciplinary research, specifically focussing on two countries – Switzerland and The Netherlands. Next we develop a typology of transdisciplinary research. From the perspective of knowledge democracy, we can distinguish two important dimensions in research approaches: the degree of knowledge input of lay groups that is included in a specific transdisciplinary project and the degree in which non-dominant actors are explicitly involved in the decision-making of the development process of policies or research agendas. This results in two different styles of transdisciplinary research. We discuss the similarities and differences of these different styles and approaches. We close this chapter with a discussion on transdisciplinary research styles in relation to forms of democracy – on the one hand basic and representative democracy and on the other hand deliberative democracy.

The Triple Helix Enriched with the User Perspective: A View from Bangladesh

University-industry-government interactions are seen as crucial for the innovative capacity of a country. In this paper, we argue that this triple helix model neglects other important actors, such as the intended users of innovations. We show on the basis of empirical finding that the use of the triple helix model as a prescriptive model has drawbacks. Depending on the context of innovations, the neglect of users in the innovation process may lead to technical results which are hardly used. Moreover, the lack of input from users may lead to missed opportunities. This paper shows the achievements of an innovation strategy that includes the user perspectives in the triple helix—here illustrated by a case study in Bangladesh. The paper ends with a theoretical embedding of the user perspective in studies of the innovation process.

Requirements for biotechnology development: the necessity for an interactive and participatory innovation process

Biotechnology is often presented as a potentially crucial factor in contributing to sustainable development and poverty alleviation in developing countries. Looking at the innovations currently developed through biotechnology R&D, it can, however, be concluded that these innovations are usually inappropriate for this purpose. Scepticism therefore prevails in the development community about the usefulness of biotechnology as an instrument in poverty alleviation. In this article, we look at new approaches to the management of technological innovations in an attempt to design appropriate biotechnologies for the rural poor. We conclude that implementing an interactive and participatory approach to the innovation process involving farmers, scientists and other stakeholders, as well as enhancing a broader process of training of human resources and institutional change is the way to proceed in the field of biotechnology development for small-scale, resource-poor farmers.

A qualitative assessment of health extension workers’ relationships with the community and health sector in Ethiopia: opportunities for enhancing maternal health performance

BackgroundHealth extension workers (HEWs) in Ethiopia have a unique position, connecting communities to the health sector. This intermediary position requires strong interpersonal relationships with actors in both the community and health sector, in order to enhance HEW performance. This study aimed to understand how relationships between HEWs, the community and health sector were shaped, in order to inform policy on optimizing HEW performance in providing maternal health services.MethodsWe conducted a qualitative study in six districts in the Sidama zone, which included focus group discussions (FGDs) with HEWs, women and men from the community and semi-structured interviews with HEWs; key informants working in programme management, health service delivery and supervision of HEWs; mothers; and traditional birth attendants. Respondents were asked about facilitators and barriers regarding HEWs’ relationships with the community and health sector. Interviews and FGDs were recorded, transcribed, translated, coded and thematically analysed.ResultsHEWs were selected by their communities, which enhanced trust and engagement between them. Relationships were facilitated by programme design elements related to support, referral, supervision, training, monitoring and accountability. Trust, communication and dialogue and expectations influenced the strength of relationships. From the community side, the health development army supported HEWs in liaising with community members. From the health sector side, top-down supervision and inadequate training possibilities hampered relationships and demotivated HEWs. Health professionals, administrators, HEWs and communities occasionally met to monitor HEW and programme performance. Expectations from the community and health sector regarding HEWs’ tasks sometimes differed, negatively affecting motivation and satisfaction of HEWs.ConclusionHEWs’ relationships with the community and health sector can be constrained as a result of inadequate support systems, lack of trust, communication and dialogue and differing expectations. Clearly defined roles at all levels and standardized support, monitoring and accountability, referral, supervision and training, which are executed regularly with clear communication lines, could improve dialogue and trust between HEWs and actors from the community and health sector. This is important to increase HEW performance and maximize the value of HEWs’ unique position.