A New Voice in Science : Patient participation in decision-making on biomedical research

End-users are increasingly involved in decision-making concerning science and technology. This dissertation focuses on a specific kind of end-user participation: patient participation in decision-making on bio-medical research. Since patients can be considered relevant experts and stakeholders within the biomedical research field different normative and substantive arguments support their participation in decision-making processes. The study described reflects on the current situation concerning this type of patient participation and in particular on strategies followed and obstacles faced. In addition an alternative strategy is proposed and evaluated that seems to realize patient participation in decision-making on biomedical research in an effective manner. Successful applications of this strategy may eventually contribute to the induction of a transition of the biomedical research decision-making network towards the structural inclusion of patients. The study contributes to the on-going debate on one of the central themes within the field of Science and Technology Studies: broadening decision-making processes concerning science and technology.Bunders-Aelen, J.F.G. [Promotor]Broerse, J.E.W. [Copromotor

Ontmoetingen tussen praktijk en beleid in de multifunctionele landbouw

During encounters on multifunctional farms, policy makers and multifunctional farmers have learned from each other by discussing existing barriers for multifunctional agriculture. This has led to more understanding for each others approach and a change in actions

Programma van Eisen voor landbouwhuisdieren in de zorg

In this research we tried to find answers to the next relevant questions: what are the needs and requirements of: 1) farm animals on care farms, 2) clients with ASD (Autism spectrum disorders) with regard to Animal-assisted Interventions on care farms, and 3) care farmers with regard to using farm animals in care services. The (indicative) requirements give insight into how farm animals can be optimally used for care purposes from different perspectives and what the implications are for, among other things, farm management and agricultural production. Three important parts are: the characteristics of farm animals, management and housing systems

De Groene Trekker: Resultaten van de ontwerpfase

Het project ‘De Groene Trekker’ heeft als doel om nieuwe doelgroepen met de multifunctionele landbouw te verbinden door nieuwe (combinaties van) producten en diensten voor de multifunctionele landbouw te ontwerpen die tegemoet komen aan de wensen en behoeften van die doelgroepen

Zorgboer past werkwijze en bedrijfsvoering aan

De zorgvraag is zeer divers. Op een zorgboerderij wordt daarom zorg geboden in de vorm van dagbesteding, arbeidsintegratie, wonen of behandeling. Om goed in te kunnen spelen op de behoeften van de deelnemers, past de zorgboer(in) bovendien zijn werkwijze en bedrijfsvoering aan. In dit artikel een overzicht van de aanpassingen die zorgboeren deden op hun bedrijve

Assessment of the benefits of user involvement in health research from the Warwick Diabetes Care Research User Group : a qualitative case study

Objective  To assess the benefits of involving health-care users in diabetes research. Design and participants  For this qualitative case study, semi-structured interviews were conducted with researchers who had worked extensively with the group. During regular meetings of the Research User Group, members discussed their views of the group's effectiveness as part of the meeting's agenda. Interviews and discussions were transcribed, coded using N-Vivo software and analysed using constant comparative methods. Results  Involvement of users in research was generally seen as contributing to effective and meaningful research. However, the group should not be considered to be representative of the patient population or participants of future trials. An important contributor to the group's success was its longstanding nature, enabling users to gain more insight into research and form constructive working relationships with researchers. The user-led nature of the group asserted itself, especially, in the language used during group meetings. A partial shift of power from researchers to users was generally acknowledged. Users' main contribution was their practical expertise in living with diabetes, but their involvement also helped researchers to remain connected to the `real world' in which research would be applied. While the group's work fulfilled established principles of consumer involvement in research, important contributions relying on personal interaction between users and researchers were hard to evaluate by process measures alone. Conclusions  We demonstrated the feasibility, acceptability and effectiveness of this longstanding, experienced, lay-led research advisory group. Its impact on research stems from the continuing interaction between researchers and users, and the general ethos of learning from each other in an on-going process. Both process measures and qualitative interviews with stakeholders are needed to evaluate the contributions of service users to health research

De Groene Trekker: wensen van burgers voor de multifunctionele landbouw.

Dit rapport beschrijft de behoeften en wensen van burgers ten aanzien van de (multifunctionele) landbouw. Zowel een paar bestaande doelgroepen als twee potentieel kansrijke nieuwe doelgroepen voor de multifunctionele landbouw zijn benaderd

"Asthma can take over your life but having the right support makes that easier to deal with." Informing research priorities by exploring the barriers and facilitators to asthma control: a qualitative analysis of survey data.

BACKGROUND: Involving patients and the public in research prioritisation is important. Cochrane Airways works with authors to produce systematic reviews of evidence related to chronic airways disease. Cochrane Airways has undertaken activities to identify research priorities, including workshops with stakeholders and consultation with experts. We present the findings of an online survey, designed to align our work with the priorities of people affected by asthma. METHODS: We promoted a survey comprising open-ended questions via social media to people affected by asthma. We compiled the free-text responses and conducted an exploratory thematic analysis to identify important barriers and facilitators to asthma control. We triangulated findings with other research prioritisation activities to produce new review questions. RESULTS: We received 57 survey responses. Eight main themes emerged, most encompassing both facilitators and barriers: attitudes and knowledge; financial costs; environmental factors and triggers; healthcare systems; lifestyle factors; medication; self-care; and support. Barriers were more frequently mentioned than facilitators and many related to healthcare systems. CONCLUSIONS: These findings offer valuable insights into the challenges faced by individuals affected by asthma in the UK, and possibly further afield. We developed a list of priority reviews based on what was said by people in this survey and at a workshop. This demonstrates the real impact that people affected by asthma have on the research agenda of Cochrane Airways. Over the next 2-3 years we will produce reviews that address some of these questions hopefully leading to health benefits