Guidelines suggest the patient community should be consulted from the outset when designing and implementing basic biomedical research, but such patient communities may include conflicting views. We examined how engagement occurred in one such instance.
Objective
Our objective was to scrutinize patient and public involvement (PPI) by a pan‐European biomedical consortium working to develop drugs to treat autism. We aimed to use this as an example to illustrate how PPI has been utilized in biomedical research.
Setting, participants and analysis
Two public events, one in the UK and one in Denmark were conducted as part of the consortium's on‐going PPI activities in 2014 and 2015. Sixty‐six individuals submitted written comments on the consortium's research after these events. The textual data produced were analysed using a thematic approach. Approximately 71% of respondents reported themselves to be adults on the autism spectrum or parents of children with autism.
Results
The themes identified illustrated major differences between some community concerns and the biomedical research agenda. While treating autism per se. was seen as problematic by some, treating specific co‐occurring problems was seen as helpful in some circumstances. The biomedical consortium selected PPI with a limited user viewpoint at its outset and more widely once basic research was on‐going.
Discussion
This case illustrates what we term “selective PPI” where only a sympathetic and/or limited patient viewpoint is included. Findings highlight the perils of using selective PPI to legitimise scientific endeavours, and the possibilities for constructive dialogue. 相似文献
The convergence of different theories (ie, catch‐up effect and windows of opportunities) allows for the interpretation of different “technological innovation gaps” in Chile's biomedical industry. It is common knowledge that Chile has always had an economy almost exclusively based on services, commodities, and mainly in the exploitation of natural resources with low value added. The literature confirms that countries that concentrate their economies on the knowledge, research, development, and commercialization of technology and innovation have a better and more stable growth rate in the medium and long run. The “Asian Tigers” are a good example of this. Analyzing the technological gaps that affect the Chilean biomedical industry, it is possible to find windows of opportunities to catch up. This could allow the country to take its knowledge, skills, and capabilities further, thus enabling Chile to not just depend on its unpredictable natural resources. For the first time, a quantitative diagnosis of the Chilean biomedical industry was made. This study considered the Chilean biomedical industry and its innovation and entrepreneurship environment, taking into account its productive capacities and its potential to make progress in technological innovation and, as a result, dramatically reducing technological gaps through windows of opportunities. 相似文献
A primary role of medicine is often perceived as treating or alleviating pain, but what actually constitutes pain can be defined in many ways. A major impediment to a more adequate conceptualization of pain is thought to be the manner in which it has been ‘medicalized,’ over the course of the twentieth century resulting in the inevitable Cartesian split between body and mind. Consequently, the dominant conceptualization of pain has focused almost exclusively upon the neurophysiological aspects, both in diagnosis and treatment, with the subsequent inference that it can be rationally and objectively measured. Social science, in particular the sociological literature on chronic illness, offers a framework for understanding the experience of pain by focusing on ‘lived experience,’ including narratives of suffering. Medically, pain is often explained in terms of risk by attempting to measure so-called objective symptoms, whereas accounts of suffering may encompass more easily the notion of total pain (Saunders 1976Saunders, C.1976. Care of the dying. Nursing Times, 72: 3–24. [Google Scholar]), which includes psychological, spiritual, interpersonal and even financial aspects of chronic pain, as well as its physical aspects. This paper proposes that illness narratives and phenomenological accounts have become intrinsic to the understanding and treatment of pain and, using examples from empirical research, considers how pain narratives challenge biomedical approaches to chronic pain, which are inevitably framed in the discourse of risk. 相似文献
We argue that contemporary psychiatry adopts a defensive strategy vis-à-vis various external sources of pressure. We will identify two of these sources – the plea for individual autonomy and the idea
of Managed Care – and explain how they have promoted a strict biomedical conception of disease. The demand for objectivity,
however, does not take into account the complexity of mental illness. It ignores that the psychiatrist’s profession is essentially
characterized by fragility: fluctuating between scientific reduction and the irreducible complexity of reality. Therefore,
the psychiatrist is not in need of hard and fast rules, but of judgment. At the end, we suggest that philosophy could inject
some healthy uncertainty within psychiatry in order to restore its fragile identity. Our examples are drawn from the Dutch
situation but we are confident that they apply to other countries as well. 相似文献
Introduction: Chitosan as a natural polysaccharide have been widely applied in biomedicine due to their outstanding biodegradability, non-toxic, and low-price. As carriers, the multi-functional chitosan hydrogels can be prepared by physical and chemical modification to form smart hydrogels to release cargoes. The smart hydrogels can generate sol–gel phase transition while gaining stimulus from the environment including pH, temperature, photo, and so forth. In recent years, a variety of therapeutic approaches such as gene therapy, chemotherapy, and combined therapy can be achieved by combining chitosan-based hydrogels with therapeutic agents.
Area covered: This review reports the state-of-the-art progress of chitosan-based hydrogel delivery systems and some new technologies and discusses the smart chitosan hydrogels. In addition, the current trends and the future prospects together with the drawbacks of chitosan hydrogels as biomaterials are also discussed.
Expert opinion: Chitosan as a natural material has been widely studied and reported. Due to its many advantages, the development of chitosan has been applied in all walks of life. However, the application of chitosan hydrogels in disease therapy is limited due to their weak physical and chemical properties in vivo. Thus, it is high likely that chitosan-based hydrogels will contribute to further research and exploration. 相似文献
Biomedicine is often presented as the driving force behind improvements in cancer care, with genomics the latest innovation poised to change the meaning, diagnosis, treatment, prevention and lived experience of cancer. Reviewing sociological analyses of a diversity of patient and practitioner experiences and accounts of cancer during the last decade (2007–17), we explore the experiences of, approaches to and understandings of cancer in this period. We identify three key areas of focus: (i) cancer patient experiences and identities; (ii) cancer risk and responsibilities and (iii) bioclinical collectives. We explore these sociological studies of societal and biomedical developments and how sociologists have sought to influence developments in cancer identities, care and research. We end by suggesting that we extend our understanding of innovations in the fields of cancer research to take better account of these wider social and cultural innovations, together with patients, activists' and sociologists' contributions therein. 相似文献