Patient and healthcare professional experiences of the Salford Lung Studies: qualitative insights for future effectiveness trials (original) (raw)
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Trials, 2022
Background The ELCID Trial was a feasibility randomised controlled trial examining the effect on lung cancer diagnosis of lowering the threshold for referral for urgent chest X-ray for smokers and recent ex-smokers, aged over 60 with new chest symptoms. The qualitative component aimed to explore the feasibility of individually randomising patients to an urgent chest X-ray or not and to investigate any barriers to patient recruitment and participation. This would inform the design of any future definitive trial. This paper explores general practice staff insights into participating in and recruiting to diagnostic trials for possible/suspected lung cancer. Methods Qualitative interviews were conducted with 11 general practice staff which included general practitioners, a nurse practitioner, research nurses and practice managers. Interviews were analysed using a framework approach. Results Findings highlight general practice staff motivators to participate in the trial as recruiters, p...
Trials, 2021
Background While patient and public involvement (PPI) in clinical trials is beneficial and mandated by some funders, formal guidance on how to implement PPI is limited and challenges have been reported. We aimed to investigate how PPI is approached within a UK Clinical Trials Unit (CTU)’s portfolio of randomised controlled trials, perceived barriers to/facilitators of its successful implementation, and perspectives on the CTU’s role in PPI. Methods A mixed-methods study design, involving (1) an online survey of 26 trial managers (TMs) and (2) Interviews with Trial Management Group members and public contributors from 8 case-study trials. Quantitative survey data were summarised using descriptive statistics and interview transcripts analysed thematically. Two public contributors advised throughout and are co-authors. Results (1) 21 TMs completed the survey; (2) 19 in-depth interviews were conducted with public contributors (n=8), TMs (n=5), chief investigators (n=3), PPI coordinators...
Acta Oncologica, 2019
Background: Patient and public involvement (PPI) is increasingly becoming a requirement in the effort to improve the relevance and quality of healthcare research. We examined how involving patients with lower education levels affected PPI in the development of the MyHealth randomized clinical trial of breast cancer follow-up from the perspectives of the patients and professionals. Material and methods: Eight women who had completed breast cancer treatment, four with fewer than 10 years of education, were recruited as members of a patient panel advising researchers in the development of the trial. We carried out individual and focus group interviews with panel members and recruiting nurses between April and September 2016. Researcher observations and changes made based on panel feedback were also documented. Patients were asked to evaluate the process according to a PPI theoretical framework with four dimensions: (i) ways of involvement, (ii) research vs. patient concerns, (iii) strength of the patient's voice, and (iv) degree of change. A combination of inductive and deductive thematic analysis was conducted whereby emerging themes were organized using the above framework. Results: All patient contributors reported high satisfaction with being involved and PPI improved trial materials and recruitment strategy. However, contradictory perspectives between lay and expert approaches to research led to dilemmas not related to educational background. Patients were often more concerned with unmet needs after cancer than with research, and the scientific hierarchy made it difficult for researchers to include the patient perspective if it challenged research requirements. Nurses also faced ethical dilemmas when recruiting patients as PPI contributors. Conclusions: Our findings challenged the assumption that PPI automatically leads to a broad range of patient perspectives that can directly improve research relevance and quality. This highlights the need for more research and better guidance on the use of PPI in research.
Patient involvement in lung foundation research: A seven year longitudinal case study
G. J. Teunissen, M. A. Visse, D. Laan, W. I. de Boer, M. Rutgers, T. A. Abma
Patient involvement in health research is getting more accepted over the years. Until recently scientists and medical professionals were the sole assessors of quality and relevance of research proposals. In the Netherlands, as in other European and North American countries, emancipatory, political and democratic developments stimulated the emergence of patient involvement as a new “voice” in the appraisal of research. A time-series cross sectional longi-tudinal case study was used to describe and analyse a seven year period since the introduction of the patients’ perspective in the Long-fonds research cycle. Longfonds, the Lung Foundation in the Netherlands (LFN) was formerly called “Astma Fonds”. The study was conducted using an actors-interaction model against the background of the dynamics in society. The introduction of patient involvement resulted in a paradigm shift. The scientific and societal relevance of research proposals are now being reviewed by all parties in a more ef-...
Trials, 2015
Background: Training in patient and public involvement (PPI) is recommended, yet little is known about what training is needed. We explored researchers' and PPI contributors' accounts of PPI activity and training to inform the design of PPI training for both parties. Methods: We used semi-structured qualitative interviews with researchers (chief investigators and trial managers) and PPI contributors, accessed through a cohort of clinical trials, which had been funded between 2006 and 2010. An analysis of transcripts of audio-recorded interviews drew on the constant comparative method. Results: We interviewed 31 researchers and 17 PPI contributors from 28 trials. Most researchers could see some value in PPI training for researchers, although just under half had received such training themselves, and some had concerns about the purpose and evidence base for PPI training. PPI contributors were evenly split in their perceptions of whether researchers needed training in PPI. Few PPI contributors had themselves received training for their roles. Many informants across all groups felt that training PPI contributors was unnecessary because they already possessed the skills needed. Informants were also concerned that training would professionalise PPI contributors, limiting their ability to provide an authentic patient perspective. However, informants welcomed informal induction 'conversations' to help contributors understand their roles and support them in voicing their opinions. Informants believed that PPI contributors should be confident, motivated, intelligent, focussed on helping others and have relevant experience. Researchers looked for these qualities when selecting contributors, and spoke of how finding 'the right' contributor was more important than accessing 'the right' training. Conclusions: While informants were broadly receptive to PPI training for researchers, they expressed considerable reluctance to training PPI contributors. Providers of training will need to address these reservations. Our findings point to the importance of reconsidering how training is conceptualised, designed and promoted and of providing flexible, learning opportunities in ways that flow from researchers' and contributors' needs and preferences. We also identify some areas of training content and the need for further consideration to be given to the selection of PPI contributors and models for implementing PPI to ensure clinical trials benefit from a diversity of patient perspectives.
Clinical trials – A brave new partnership: A new doctor–patient working relationship in research
International Journal of Surgery, 2008
An outline of the development of a ''brave new partnership'' in clinical trials is provided in this specific personal account. This paper was one of several delivered in November 2007 by colleagues deemed to have contributed to the distinguished career of Professor Michael Baum, at a Festschrift convened to honour him. This account describes this strange, new doctor-patient relationship in the research process that we developed, both in our dialogues and in the work of the Consumers' Advisory Group for Clinical Trials (CAG-CT) that we jointly founded. This work formed but one facet of his outstanding contribution to society and academe, in the fields of medicine, ethics and science. ª 2008 Published by Elsevier Ltd on behalf of Surgical Associates Ltd. ''Thus not only morality but also scientific self-interest combine to urge the 'brave new partnership' between clinical trialists and patients advocated by Mrs. Thornton. Like all partnerships it requires understanding by each partner of the interests and objectives of the other when those interests and objectives are perceived to conflict.'' Raanon Gillon. ''Recruitment for clinical trials: the need for public-professional co-operation''. 1 1.
Canadian Journal of Respiratory, Critical Care, and Sleep Medicine, 2018
RATIONALE: Patients play an important role in improving outcomes of health interventions by actively involved in the research process. However, there is a paucity of empirical data on the extent to which patients assume such a role in Respiratory Research (RR). Thus a framework to guide the engagement of patient's needs to be developed to further a patient-centered RR agenda. OBJECTIVE: To explore the perspectives of patients with COPD and asthma re the factors that could affect their engagement in the research process. METHODS: Eight focus groups were conducted (23 asthma and 20 COPD patients) across Canada to discuss: patients' willingness to engage as research partners; their research priorities; practical considerations for their involvement in research; desired outcomes from their involvement; and willingness to participate in a patient-oriented network. Focus group data were analyzed using thematic analysis to identify principles of a patient engagement framework. RESULTS: Eight key principles emerged that could affect patient involvement in RR, including: clarify the nature of involvement; integrate patients' disease-related knowledge and perspective; engage early and frequently; consider patients' views and beliefs; include diverse patient populations; emphasize on meaningful outcomes; conduct patient-oriented knowledge translation; and patient-to-patient dissemination. Also, three broad research priorities were suggested: origins of disease; development of new therapies; and patient education. CONCLUSIONS: Patients showed interest in active involvement in research process and identified key principles to facilitate patient engagement in the RR. Further research is needed to examine the factors influencing patient engagement, the limits and the possible barriers and promoters.
Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study
Trials, 2018
The ELCID (Early Lung Cancer Investigation and Diagnosis) trial was a feasibility randomised controlled trial examining the effect on lung cancer diagnosis of lowering the threshold for referral for urgent chest x-ray for smokers and recent ex-smokers, aged over 60 years with new chest symptoms. The qualitative component aimed to explore the feasibility of individually randomising patients to an urgent chest x-ray or not and to investigate any barriers to patient recruitment and participation. We integrated this within the feasibility trial to inform the design of any future definitive trial, particularly in view of the lack of research exploring symptomatic patients' experiences of participating in diagnostic trials for possible/suspected lung cancer. Although previous studies contributed valuable information concerning screening for lung cancer and patient participation in trials, this paper is the first to explore issues relating to this specific patient group. Qualitative in...
Background: We conducted a pilot study of an intervention to facilitate patients’ agenda setting in clinical consultations. The primary aim of the study was to test the feasibility of running the randomized controlled trial. A secondary objective was to assess the extent to which patient and public involvement (PPI) could contribute to the process of qualitative data analysis (QDA). Aims: To describe a novel approach to including patient partners in QDA; to illustrate the kinds of contribution that patient partners made to QDA in this context; and to propose a characterization of a process by which patient involvement can contribute to knowledge production. Methods: Six patient and public representatives were supported to contribute to data analysis via a range of modalities. During a series of QDA workshops, experienced research staff role-played consultations and interviews, and provided vignettes. Workshop data and PPI diaries were analysed using thematic discourse analysis. Results: We characterized a process of thesis, antithesis and synthesis. This PPI group contributed to the rigour and validity of the study findings by challenging their own and the researchers’ assumptions, and by testing the emerging hypotheses. By training PPI representatives to undertake qualitative data analysis, we transformed our understanding of doctor–patient consultations. Conclusions: This research required changes to our usual research practices but was in keeping with the objective of establishing meaningful patient involvement for a future definitive trial. This work was informed by concepts of critical humility, and a process of knowledge production enabled via the construction of a knowledge space.