Lay Perspective Research Articles

The Importance of Quality Patient Advocacy to Biobanks: A Lay Perspective from Independent Cancer Patients Voice (ICPV), Based in the United Kingdom.

Biobanking in the twentieth century will become of increasing importance in health research. Regulation and governance of biobanks must be open and transparent to ensure public trust and confidence and increase donation. Effective Lay Involvement all levels in biobank organisations should be standard practice helping ensure patient benefit remains the central aim and assisting the Promotion of Biobanks and Recruitment of Donors. Properly selected, educated and supported, they become valued members of the Biobank Team. This chapter is based on the work of Independent Cancer Patients' Voice (ICPV) in the UK and recognises that the National Health Service provides a framework which is not universal and neither is the model of patient advocacy which has been developed particularly in cancer research. However, although it has not been easy to find potential members for ICPV, nor to attract funding, we have earned the respect of our professional colleagues by our commitment in giving time and developing the skills necessary to provide effective involvement. These colleagues have enthusiastically mentored and supported us and have provided venues and tutoring for Educational Events. We are sure that patient advocates in other countries would welcome the opportunity for similar involvement and hope our experiences will be of interest.

Science and the Lay Perspective: Lay People's Involvement in Assessing Tissue Engineering

Tissue engineering (TE) is a scientific field that will have an influence on our daily lives. It has the potential to revolutionize medical treatments, but it has also an impact on our human image and is associated with potential risks and ethical aspects. Among the publicly controversial issues are embryonic and induced pluripotent stem cells, cloning, uncertainties regarding risks and informed consent issues. To maintain public confidence in the science of TE, a good solution is public dialogues with patients and other interested lay people that gives the public the chance to independently evaluate TE issues and build their own opinion based on information from different perspectives. The article describes public participation projects in TE on stem cell research and gene therapy and presents the case study of the EU-Gene Activated Matrices for Bone and Cartilage Regeneration on Arthritis (GAMBA) panels, a dialogue with patient and citizen panels in three European countries. In the GAMBA panels, lay participants assessed the basic research project aimed at finding ways of healing osteoarthritis through a matrix composed of adult stem cells, gene vectors, nanoparticles, and biomaterials. The results of the dialogues in different countries, such as Denmark, Japan, Ireland, Switzerland, and Germany, are compared and the evaluation criteria for high quality dialogues are presented, including multiperspectivity, openness of results, a clear mandate, impartial facilitation of the panels, and transparency.

A Lay Perspective on the Copyright Wars: A Report from the Trenches of the Section 108 Study Group

It is a deep honor to have been invited to deliver the Horace S. Manges Lecture this year. I value enormously the confidence of Professors Ginsburg and Besek to allow a Columbia colleague from the libraries to step up to the challenge of contributing a perspective on the debates around the current state and future development of copyright on the national and global stages. I employ the metaphors of conflict because I have been involved over a twenty-year period in the extraordinary battles that have come to define the high stakes for the legislative and legal treatment of copyright in an increasingly digital and networked world. I view this history and this present through the prism of a cultural, educational and scholarly organization, the library and archive, seeking to sustain and redefine its relevance and impact. I also observe through the lens of the university, an institution struggling to achieve a balance among its commitments teaching and learning, research and community service, in a financially and politically threatening environment. I have outlined four basic objectives. First, I will suggest a framework for understanding the heightened attention to copyright in the library and the university. Second, I will describe from my perspective the key developments in copyright that impinge on these interests. Third, I will frame my 108 Study Group experience in the context of these trends. Fourth, I will speculate on the future of copyright hostilities and recommend a strengthening of university and library political resolve and capabilities. In my talks on copyright, I have come to recognize its basic “MEGO” character—“my eyes glaze over.” One has to be creative to sustain audience interest and commitment. I will assume a certain enthusiasm for the topic in the room, as well as a substantial level of copyright literacy to fluency. I also recognize that copyright has become a routine topic for the nation’s newspapers and magazines. It is recognized in the wider public as a new and pressing issue. David Close, in “The Meaning of Revolution,” notes that “[t]he essential feel of revolution derives from its cataclysmic . . . quality. [It] destroys people’s security and unsettles their convictions.”1 Thomas Kuhn, in The Structure of Scientific

Lay perspective: is it enough that they belong ….

I am older than the NHS and my use of it is changing as I inexorably slide from being the recipient of occasional acute interventions to being increasingly in need of support to cope with chronic non-communicable diseases. Even though my needs are changing I am still able to go to the same point of access for care – the GP surgery. I like being recognised and made to feel that I am being listened to. Even when I happen upon someone who does not know me there is the reassurance that relevant information about me is readily to hand. Once upon a time that information was in the working memory of a person and, sometimes, when that working memory failed or a new encounter was taking place, reference was made to the Lloyd George files. When I visit my surgery now all the necessary prior information about me is available at the click of a mouse and can be added to by a few strokes of the keyboard. I feel comfortable because I know that I am surrounded by a team who know about me and are there to look after me when I am in need. I confess to wishing, from time to time, that the team was a bit bigger and had more ready access to more expertise and diagnostic facilities. I warm to what Lord Darzi describes as ‘this holistic approach to care. It's not just health care. It is health care, social care … it is integrated patient care which I've described as personalised care, which is tailored around the needs of patients …’. Most general practices have already made great strides towards this ideal with additional services, a variety of clinics and staff with special interests and expertise. I believe even more can be achieved to afford many more patients an opportunity to access the many and varied skills which exist within individual practices by generating a multi-disciplinary, expertise-sharing, energy-harnessing, dynamic, innovative and learning environment within which to work. I think this could come about by a very careful local implementation of what Lord Darzi calls the ‘federated polyclinic’ model. Certainly there are many barriers to achieving this ideal and one of the greatest seems to be the belief, held by a surprisingly large number of people, that change is never a good thing! Under the federated model mentioned by Lord Darzi very few surgeries and GPs would experience anxieties about surviving some change. Practices would find that they are doing more things with more people and, sometimes, in different settings. Just as important is that patients would not be torn suddenly from the trusted relationship that most of them have with their GPs and cast into some new and impersonal setting when they are feeling most vulnerable. Instead they would find that their care is being provided, albeit from time to time by different people and in different places, by those who turn out to be members of the same team and who can access information which has been provided by other team players. But how could any of this come to be? I suggest that with the stimulus of practice based commissioning and a recognition that the people who work in surgeries do not just have to see patients there could be an explosion of creative thinking and innovation. The integration of health and social care, with resulting vertical and horizontal care pathways which meet the needs of patients, can only come about when GPs, Nurses and Practice staff afford themselves time to play a significant role in planning, commissioning and implementing new models of care. Lord Darzi speaks of ‘millions of interactions on a daily basis’ that will be needed to find ways of providing better care for patients and their carers. There will need to be a whole new raft of ‘interactions’ between all commissioners and providers of services which will necessarily include the secondary sector, the voluntary sector and the private sector too. I was relieved to see mention of primary care research albeit expressed somewhat esoterically! The scope of research in the primary care setting will be enhanced considerably when the sharing of patients, and sharing of skills and expertise within a federated model become a reality. It would be ideal if those working within primary care federations, in partnership with patients, could embark upon research themselves. Through the process of reflection, questioning and answering those questions, many practical and realistic ways could be found to bring about profound improvements in the quality of care delivered. With research comes learning and development, all of which can take place within a supportive, sharing and caring atmosphere which has been created for the purpose of achieving integrated patient centred care. … or is it better that they belong together?

Perceiving the Environment from the Lay Perspective in Desertified Areas, Northern China

Investigating local people's environmental perceptions can produce useful information that could be incorporated into decision making processes that help resolve environmental problems. Although China is undergoing severe desertification, the perceptions of the local people toward their degraded environment and the related issues have so far not been actively solicited. This article, which is a supplement to Lee and Zhang's (2004, 2005) studies, seeks to further investigate the lay public's general environmental attitudes, perceptions of desertification, interpretations of land-degrading activities, and particularly their interrelations in severely desertified areas. Minqin County in Gansu Province, northern China, was chosen to be the study area. Data was collected via a questionnaire survey (n=1138) administered in December 2002. Major findings were: (1) Most respondents had only weak altruistic environmental attitudes, with educational level to be a significant determinant. (2) Respondents' perceptions of desertification and interpretations of land-degrading activities were contingent on personal attributes, general environmental attitudes, and other conceptions related to desertification. It is recommended that the interrelations between the various aspects of the public's environmental perceptions should be thoroughly examined to facilitate their participation in environmental management.

Lay perspective on pharmacogenetics and its application to future drug treatment: a Danish quantitative survey

The purpose of the present survey is to describe the Danish perspective on pharmacogenetics and public willingness to adopt and utilize it as part of drug treatment. An Internet-based quantitative survey of a representative segment of the Danish population from ages 18 to 70 was conducted in March 2005. A total of 3,000 participated in the survey, with a response rate of 59%. Only 14.1% of respondents indicated they had heard of pharmacogenetics, while 79% said they had not. However, 81% indicated that they would choose pharmacogenetic drugs rather than ordinary drugs, while 6% would choose the drugs currently available. In addition, 89% indicated willingness to receive pharmacogenetic treatment in future. The population in general has a low level of knowledge about pharmacogenetics, and certain aspects are seen as disadvantageous: the lack of drug treatment for everyone, for example. Nonetheless, the attitude towards the use of pharmacogenetics is generally positive, and pharmacogenetic treatment is considered better than the treatment available at present.

Lay perspective on pharmacogenomics: a literature review.

The lay attitude to pharmacogenomics is crucial to successful implementation. The intention of the present literature review is to delineate the considerations, expectations, fears, and so on, described in the literature regarding pharmacogenomics seen from a lay perspective. The literature review was conducted in Medline and EMBASE in March 2005. The combined search in databases, reference lists, and so on, produced a total of 30 relevant articles, of which seven are included in the literature review. Other literature reviews on this issue are included in the discussion. This review documents that, at this time, very little information is available regarding the public's attitude to pharmacogenetic testing and the use of pharmacogenomics in therapy. Thus, studies of lay attitudes to and expectations of pharmacogenomics are highly relevant. Research is increasingly being conducted in the area, and studies have shown that education, income, age, ethnicity and nationality seems to influence lay attitudes. Based on this, it is concluded that knowledge of the relation between national /cross-national cultural and subcultural settings, and attitudes toward pharmacogenomics seem to be important to a successful pharmacogenomics implementation in healthcare.

Perceiving Land-Degrading Activities from the Lay Perspective in Northern China

Investigation into local peoples' perceptions can produce useful information that could be incorporated into the decision-making process to help resolve environmental problems. Within the arena of land degradation, a number of studies have also been conducted to explore local peoples' views of the problem. However, the perceptions of land-degrading practices of the general public have so far not been actively solicited. This study aimed to contribute to this area of research by adopting the psychometric scaling technique to empirically explore the lay public's ecological risk perceptions of land-degrading activities in Minqin County in Gansu Province, northern China. The primary data were collected via a questionnaire survey (n=1,138) administered between 14 and 31 December 2002. The major findings of the survey were: (1) Respondents perceived the ecological risks posed by different land-degrading activities to be different. (2) There was a considerable incongruence in the way in which mining of groundwater was conceived by experts and laymen, respectively. (3) Respondents were pretty unsure of expert knowledge. (4) Respondents' ecological risk perceptions were significantly affected by their personal attributes. As far as the policy implications of these findings are concerned, this study accentuates that we must be aware of, and involved in, the environmental perceptions of the lay public in order to succeed in guiding any human-environment tensions along more sustainable trajectories and navigating the transition to sustainability.

A Lay Perspective on the Accuracy of Eyewitness Testimony1

To understand more about what laypeople think they “know” about eyewitness testimony, 276 jury‐eligible university students were asked to indicate what factors they believe affect the accuracy of eyewitness testimony. In contrast to the large proportion of eyewitness‐memory research that concerns system variables, the lay respondents overwhelmingly generated factors related to estimator variables, while system‐variable factors such as police questioning and identification procedures were rarely mentioned. Respondents also reported that their own common sense and everyday life experiences were their most important sources of information about the accuracy of eyewitness testimony. Not only do these results clarify the need for further research on the lay perspective of eyewitness testimony, but they also provide some insight into the way in which many jurors might approach cases involving eyewitness evidence.

Beliefs and Practices About Food and Health: The Lay Perspective

Beliefs and Practices About Food and Health: The Lay Perspective

BOOK REVIEWS

Book reviewed in this article:Erica Bates and Susie Linder‐Pelz. Health Care Issues.Michael Calnan. Health and Illness: The Lay Perspective.Thomas Rathwell and David Phillips (eds.). Health Race and Ethnicity.Bryan S. Turner. Medical Power and Social KnowledgeM.F. Drummond (ed.) Economic Appraisal of Health Technology in the European Community.T.P. Hutchinson. Road Accident Statistics.Max Kamien. Report of the Ministerial Inquiry into the Recruitment and Retention of Country Doctors in Western Australia.Henk Lamberts and Maurice Woods (eds.). International Classification of Primary Care.Charles H. Hennekens and Julie E. Buring. Epidemiology in Medicine.Harold Himsworth. Scientific Knowledge and Philosophic Thought.A. Bonett and D. Roder. Epidemiology of Cancer in South Australia, Incidence Mortality and Survival 1977–1986: Incidence and Mortality 1986.David Wilkin et al. Anatomy of Urban General Practice

Book Reviews : Health and Illness — The Lay Perspec tive by Michael Calnan. Published by Tavistock Publications, 1987. Price £7.95. Paperback. Pp 198. ISBN: 0 422 79420 1

Book Reviews : Health and Illness — The Lay Perspec tive by Michael Calnan. Published by Tavistock Publications, 1987. Price £7.95. Paperback. Pp 198. ISBN: 0 422 79420 1

Specific effects and biofeedback versus biofeedback-assisted self-regulation training.

In any field, clear and logical conceptualizations are the basis of accurate models----correct research design----correct results----correct conclusions----advancement in the field. Faulty conceptualizations----faulty models----faulty research design----faulty results----faulty conclusions----confusion. In analyzing the conceptualizations of "biofeedback" as expressed by John Furedy (1987) in, "Specific versus Placebo Effects in Biofeedback Training: A Critical Lay Perspective," we focus on two issues: Does biofeedback have a treatment effect? Is biofeedback necessary for the training effect? In discussing issue (1) we describe the multiple meanings of "biofeedback" and raise the fundamental question: Is biofeedback a treatment? We argue that faulty conceptualizations of clinical biofeedback (1) assume that the treatment in clinical biofeedback is "biofeedback" with specific effects, (2) assume that the scientific basis of biofeedback is dependent upon demonstrations of these specific effects through double-blind design that distinguish "specific" from "placebo effects," and (3) trivialize clinical research by attempting to determine the usefulness of biofeedback information--usefulness that is already understood logically by professionals and consumers and demonstrated by clinical studies in the laboratory and in the clinic. We further argue that accurate conceptualizations of clinical biofeedback (1) identify self-regulation skills as the treatment with specific effects of physiological change and symptom reduction, and (2) describe the use of information from biofeedback instruments as scientific verification of self-regulation skills. Finally, the scientific basis of clinical biofeedback is based on (1) evidence from experimental and clinical control studies that have demonstrated the effectiveness of self-regulation skills for symptom alleviation, and (2) the use of biofeedback instruments to verify the acquisition of self-regulatory skills, thus fulfilling the scientific dictum of verifiability.