Patients' interests: paramount in randomised trials.
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Humans↗
Biomedical subjects
Tony Stevens
Publications and source records attributed to Tony Stevens.
Why do breast cancer patients decline entry into randomised trials and how do they feel about their decision later: a prospective, longitudinal, in-depth interview study.
This paper presents an exploration of the reasons why breast cancer patients decline entry into randomised clinical trials of adjuvant cancer therapy. The study employed a qualitative, longitudinal design based on in-depth interview post diagnosis, with follow-up interviews at 6 and 12 months later. Twenty-two consecutive patients, newly diagnosed with breast cancer, who had declined entry into a clinical trial were prospectively recruited from five outpatient breast cancer clinics in the North Trent Cancer Network. Analysis of patients' narratives indicated that fear of the illness and limited understanding of medical research in general, compounded by unhelpful explanations of the trial purpose and process by health professionals, resulted in patients opting for the 'tried and tested' treatment. Some patients had persisting guilt about their decision not to take part. Many of the reasons why breast cancer patients decline entry to clinical trials could be addressed, as they tend to be a product of situational and process factors, rather than being rooted in deep-seated antipathy towards research.
Adult↗
Overcoming the challenges to consumer involvement in cancer research.
INTRODUCTION: Within the last decade, there have been many government initiatives to promote consumer involvement in research, especially in cancer. At the same time, the number and influence of consumer groups themselves have expanded. However, the organizational infrastructure necessary to facilitate consumer involvement has not been developed. Consequently, consumer involvement has tended to remain essentially localized and project driven, with no strategic or regional lead. OPPORTUNITIES FOR INVOLVEMENT AND IDENTIFICATION OF CONSUMERS: The opportunities for consumers to influence the research process at each stage of the research process are identified. The different types of consumer involvement are also examined. Novel ways of identifying and recruiting consumers that have been adopted by one cancer network are discussed. THE STRATEGIES USED IN ONE CANCER NETWORK: An organizational model designed by one cancer network for involving consumers in research is illustrated. Three innovations are examined in detail. First, how three open consumer conferences have increased awareness of research among service users. Second, the recruitment of consumers to sit on project steering groups and a committee that provides a strategic overview of current research. Third, the establishment of a Consumer Panel for Research where reimbursed, trained consumers are able to provide a considered consumer perspective in a range of settings. CONCLUSIONS: Cancer networks need to take the lead in the development of an organizational infrastructure to facilitate consumer involvement. The model developed in Sheffield could be generalizable to other diseases and other health-care settings.
Biomedical Research↗
Palliative care research protocols: a special case for ethical review?
Between October 2001 and May 2002 the Chairperson and Vice-Chairperson of each Multicentre Research Ethics Committee (MREC) in England, Wales and Scotland took part in a semi-structured interview to ascertain the attitudes of MRECs to palliative care research. Interviews were transcribed and analysed using a grounded theory approach. Most respondents said each protocol was reviewed on its own merits, according to broad ethical principles, but were equivocal as to whether palliative care protocols posed particular or different challenges compared to those from other specialties. Respondents said they reviewed only a small number of palliative care protocols, and that they were less experienced with some of the study methods utilized, particularly qualitative designs. Four main themes emerged from the analysis. Respondents expressed concerns about the protocol itself--in regard to safeguarding the principles of autonomy and justice. There were concerns about how the research would be carried out, especially the protection of patients and the influence and input of the researcher in the process. The third theme concerned the impact of the research on the participant, particularly intrusion, potential distress and the existence of support mechanisms. Fourthly, respondents identified patient groups receiving palliative care (children, the elderly, bereaved families, patients in intensive therapy units, and those from ethnic groupings), who they considered might be particularly vulnerable.
Attitude of Health Personnel↗
Brief encounters of aggression and violence in primary care: a team approach to coping strategies.
OBJECTIVES: Our aim was to investigate the extended primary care team's experience of aggression and violence from patients, in order to promote the formulation of multiprofessional team procedures for critical incident management and organizational development. METHODS: A qualitative study based on in-depth interviews and focus groups with primary health care teams and community staff was carried out in one inner London and one outer London health authority area. Key issues and themes were derived from transcripts of 30 individual interviews and five focus group discussions. RESULTS: Key issues identified during interviews informed focus group discussions. The focus groups identified existing and proposed responses to the problem of aggressive encounters. No practice had a protocol for dealing with incidents, and few kept records, but the incidence of violence and aggression was perceived to be increasing. Receptionists were most at risk, and relied on experience to cope with incidents. Due to being usually excluded from team meetings, they were not able to benefit from peer support and advice. Negative management tactics, such as patient appeasement or exclusion, were the norm. Recommendations include formal record keeping, communication skills training and team responsibility for incident management and for the development of practice protocols to ensure the consistency of response. Improvements to the working environment need to balance staff security with patient-friendliness, and constitute only one aspect of a measured response to the problem. CONCLUSIONS: The success of the focus group format in this context suggests that entire primary care teams could be led in workshops to review their experiences and formulate responses on an inclusive, multidisciplinary basis. These findings fit in with the concept of systems analysis in risk management protocols. We recommend that the team collectively formulate protocols for managing threatening encounters, with agreed mechanisms and thresholds for recording and reporting. Together with improved support systems within the extended teams and post-incident analysis of adverse events, this would allow a formal approach to identifying systematic weaknesses and solutions that benefit the staff involved.
Adaptation, Psychological↗
Cancer care. Part 2. How cancer service users can influence research and practice.
There is increasing cooperation between NHS service providers and patients, who provide feedback on the care they receive and make suggestions for research and changes in practice. This article discusses why such links are necessary and describes the cancer research open day organised by a cancer network as one example of a forum for such exchanges of information to take place. The authors believe this example of collaborative interaction between patients and health professionals can be adapted and used by nurses working in a variety of health care settings.
Cancer Care Facilities↗