Bec Hanley - Academia.edu (original) (raw)

Papers by Bec Hanley

Research paper thumbnail of An evidence base to optimise methods for involving patient and public contributors in clinical trials: a mixed-methods study

Health Services and Delivery Research, 2015

Research paper thumbnail of What Difference Does Patient and Public Involvement Make and What Are Its Pathways to Impact? Qualitative Study of Patients and Researchers from a Cohort of Randomised Clinical Trials

PLOS ONE, 2015

Patient and public involvement (PPI) is advocated in clinical trials yet evidence on how to optim... more Patient and public involvement (PPI) is advocated in clinical trials yet evidence on how to optimise its impact is limited. We explored researchers' and PPI contributors' accounts of the impact of PPI within trials and factors likely to influence its impact. Semi-structured qualitative interviews with researchers and PPI contributors accessed through a cohort of randomised clinical trials. Analysis of transcripts of audio-recorded interviews was informed by the principles of the constant comparative method, elements of content analysis and informant triangulation. We interviewed 21 chief investigators, 10 trial managers and 17 PPI contributors from 28 trials. The accounts of informants within the same trials were largely in agreement. Over half the informants indicted PPI had made a difference within a trial, through contributions that influenced either an aspect of a trial, or how researchers thought about a trial. According to informants, the opportunity for PPI to make a difference was influenced by two main factors: whether chief investigators had goals and plans for PPI and the quality of the relationship between the research team and the PPI contributors. Early involvement of PPI contributors and including them in responsive (e.g. advisory groups) and managerial (e.g. trial management groups) roles were more likely to achieve impact compared to late involvement and oversight roles (e.g. trial steering committees). Those seeking to enhance PPI in trials should develop goals for PPI at an early stage that fits the needs of the trial, plan PPI implementation in accordance with these goals, invest in developing good relationships between PPI contributors and researchers, and favour responsive and managerial roles for contributors in preference to oversight-only roles. These features could be used by research funders in judging PPI in trial grant applications and to inform policies to optimise PPI within trials.

Research paper thumbnail of Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire survey

BMJ (Clinical research ed.), Jan 3, 2001

To assess the extent to which consumers are involved in the work of clinical trial coordinating c... more To assess the extent to which consumers are involved in the work of clinical trial coordinating centres in the United Kingdom and the nature of consumers' involvement in randomised trials coordinated by these centres. National surveys using structured questionnaires with some open ended sections. 103 clinical trial coordinating centres in the United Kingdom identified through a database assembled in 1997 by the NHS clinical trials adviser. Named contacts at 62 coordinating centres and investigators in 60 trials that were identified as involving consumers. Number of coordinating centres and number of trials in which consumers were involved and the nature of consumers' involvement. Of the 62 eligible centres, 23 reported that consumers had already been involved in their work, and most respondents were positive about this involvement. 17 centres planned to involve consumers. 15 centres had no plans to involve consumers, but only four of these considered such involvement irrelev...

Research paper thumbnail of From plans to actions in patient and public involvement: qualitative study of documented plans and the accounts of researchers and patients sampled from a cohort of clinical trials

BMJ Open, 2014

Patient and public involvement (PPI) in research is increasingly required, although evidence to i... more Patient and public involvement (PPI) in research is increasingly required, although evidence to inform its implementation is limited.

Research paper thumbnail of Patient and public involvement in the early stages of clinical trial development: A systematic cohort investigation

Background: Randomised controlled trials (RCTs) are considered particularly likely to benefit fro... more Background: Randomised controlled trials (RCTs) are considered particularly likely to benefit from patient and public involvement (PPI). Decisions made by professional researchers at the outset may go on to have a significant impact on the potential for PPI contributions.

Research paper thumbnail of Evaluation of patient involvement in a systematic review and meta-analysis of individual patient data in cervical cancer treatment

Systematic Reviews, 2012

Background: In April 2005, researchers based at the Medical Research Council Clinical Trials Unit... more Background: In April 2005, researchers based at the Medical Research Council Clinical Trials Unit, set out to involve women affected by cervical cancer in a systematic review and meta-analysis of individual patient data to evaluate treatments for this disease. Each of the women had previously been treated for cervical cancer. Following completion of the meta-analysis, we aimed to evaluate the process of involvement from the researcher and research partner perspective. Methods: An advisory group was first established to give advice on recruiting, supporting and involving women and led to efforts to recruit women to take part in the systematic review using different approaches. Evaluation of the process and outcomes of the partnership between the systematic reviewers and the patients, in respect to what the partnership achieved; what worked well and what were the difficulties; what was learned and the resource requirements, took place during the conduct of the meta-analysis and again after completion of the project. Results: Six women, each of whom had received treatments for cervical cancer, were recruited as Patient Research Partners and five of these women subsequently took part in a variety of activities around the systematic review. They attended progress meetings and all but one attended a meeting at which the first results of the review were presented to all collaborators and gave feedback. Three of the women also became involved in a further related research project which led to an editorial publication from the patient perspective and also participated, along with two lead researchers, in the evaluation of the process and outcomes. While they were generally positive about the experience, one Patient Research Partner questioned the extent of the impact patients could make to the systematic review process. Conclusions: In general, researchers and patient research partners felt that they had learned a lot from the process and considered it to have been a positive experience. The researchers felt that because of resource implications, patient involvement in future systematic reviews would probably have to be prioritized to those in which the greatest impacts could be achieved.

Research paper thumbnail of Involvement of consumers in studies run by the Medical Research Council Clinical Trials Unit: Results of a survey

Trials, 2012

Background: We aimed to establish levels of consumer involvement in randomised controlled trials ... more Background: We aimed to establish levels of consumer involvement in randomised controlled trials (RCTs), metaanalyses and other studies carried out by the UK Medical Research Council (MRC) Clinical Trials Unit across the range of research programs, predominantly in cancer and HIV.

Research paper thumbnail of Consumer involvement at the MRC Clinical Trials Unit: results of a survey

Research paper thumbnail of Involving the Public in NHS

Public Health and Social …, 2004

Research paper thumbnail of Service user involvement in cancer care: the impact on service users

Health Expectations, 2011

Service user involvement is embedded in the United Kingdom&am... more Service user involvement is embedded in the United Kingdom's National Health Service, but knowledge about the impact of involvement on service users, such as the benefits and challenges of involvement, is scant. Our research addresses this gap. To explore the personal impact of involvement on the lives of service users affected by cancer. We conducted eight focus groups with user groups supplemented by nine face-to-face interviews with involved individuals active at a local, regional and national level. Thematic analysis was conducted both independently and collectively. Sixty-four participants, engaged in involvement activities in cancer services, palliative care and research, were recruited across Great Britain. We identified three main themes: (i) 'Expectations and motivations for involvement'- the desire to improve services and the need for user groups to have a clear purpose, (ii) 'Positive aspects of involvement'- support provided by user groups and assistance to live well with cancer and (iii) 'Challenging aspects of involvement'- insensitivities and undervaluing of involvement by staff. This study identified that involvement has the capacity to produce varied and significant personal impacts for involved people. Involvement can be planned and implemented in ways that increase these impacts and that mediates challenges for those involved. Key aspects to increase positive impact for service users include the value service providers attach to involvement activities, the centrality with which involvement is embedded in providers' activities, and the capacity of involvement to influence policy, planning, service delivery, research and/or practice.

Research paper thumbnail of Late Complications from Chemoradiotherapy for Cervical Cancer: Reflections from Cervical Cancer Survivors 10 Years after the National Cancer Institute Alert

Clinical Oncology, 2010

Around 10 years ago, the US National Cancer Institute issued an unprecedented clinical alert stat... more Around 10 years ago, the US National Cancer Institute issued an unprecedented clinical alert stating that chemoradiotherapy should be considered for women with cervical cancer instead of radiotherapy alone . This was based on the results of five randomised trials, each of which showed a benefit of chemoradiotherapy on survival. Since that recommendation, cisplatin-based chemoradiotherapy has become the standard of care in many countries for women with high-risk early stage and locally advanced cervical cancer. However, a number of important questions remained and there were concerns among the clinical community regarding the late effects of chemoradiotherapy, which anecdotally seemed to be worse than with radiotherapy alone .

Research paper thumbnail of Identifying the impact of service user involvement on the lives of people affected by cancer

Page 1. Identifying the impact of service user involvement on the lives of people affected by can... more Page 1. Identifying the impact of service user involvement on the lives of people affected by cancer FINAL REPORT A research study commissioned by Macmillan Cancer Support Phil Cotterell, Gwen Harlow, Carolyn Morris, Peter Beresford, ...

Research paper thumbnail of An evidence base to optimise methods for involving patient and public contributors in clinical trials: a mixed-methods study

Health Services and Delivery Research, 2015

Research paper thumbnail of What Difference Does Patient and Public Involvement Make and What Are Its Pathways to Impact? Qualitative Study of Patients and Researchers from a Cohort of Randomised Clinical Trials

PLOS ONE, 2015

Patient and public involvement (PPI) is advocated in clinical trials yet evidence on how to optim... more Patient and public involvement (PPI) is advocated in clinical trials yet evidence on how to optimise its impact is limited. We explored researchers' and PPI contributors' accounts of the impact of PPI within trials and factors likely to influence its impact. Semi-structured qualitative interviews with researchers and PPI contributors accessed through a cohort of randomised clinical trials. Analysis of transcripts of audio-recorded interviews was informed by the principles of the constant comparative method, elements of content analysis and informant triangulation. We interviewed 21 chief investigators, 10 trial managers and 17 PPI contributors from 28 trials. The accounts of informants within the same trials were largely in agreement. Over half the informants indicted PPI had made a difference within a trial, through contributions that influenced either an aspect of a trial, or how researchers thought about a trial. According to informants, the opportunity for PPI to make a difference was influenced by two main factors: whether chief investigators had goals and plans for PPI and the quality of the relationship between the research team and the PPI contributors. Early involvement of PPI contributors and including them in responsive (e.g. advisory groups) and managerial (e.g. trial management groups) roles were more likely to achieve impact compared to late involvement and oversight roles (e.g. trial steering committees). Those seeking to enhance PPI in trials should develop goals for PPI at an early stage that fits the needs of the trial, plan PPI implementation in accordance with these goals, invest in developing good relationships between PPI contributors and researchers, and favour responsive and managerial roles for contributors in preference to oversight-only roles. These features could be used by research funders in judging PPI in trial grant applications and to inform policies to optimise PPI within trials.

Research paper thumbnail of Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire survey

BMJ (Clinical research ed.), Jan 3, 2001

To assess the extent to which consumers are involved in the work of clinical trial coordinating c... more To assess the extent to which consumers are involved in the work of clinical trial coordinating centres in the United Kingdom and the nature of consumers' involvement in randomised trials coordinated by these centres. National surveys using structured questionnaires with some open ended sections. 103 clinical trial coordinating centres in the United Kingdom identified through a database assembled in 1997 by the NHS clinical trials adviser. Named contacts at 62 coordinating centres and investigators in 60 trials that were identified as involving consumers. Number of coordinating centres and number of trials in which consumers were involved and the nature of consumers' involvement. Of the 62 eligible centres, 23 reported that consumers had already been involved in their work, and most respondents were positive about this involvement. 17 centres planned to involve consumers. 15 centres had no plans to involve consumers, but only four of these considered such involvement irrelev...

Research paper thumbnail of From plans to actions in patient and public involvement: qualitative study of documented plans and the accounts of researchers and patients sampled from a cohort of clinical trials

BMJ Open, 2014

Patient and public involvement (PPI) in research is increasingly required, although evidence to i... more Patient and public involvement (PPI) in research is increasingly required, although evidence to inform its implementation is limited.

Research paper thumbnail of Patient and public involvement in the early stages of clinical trial development: A systematic cohort investigation

Background: Randomised controlled trials (RCTs) are considered particularly likely to benefit fro... more Background: Randomised controlled trials (RCTs) are considered particularly likely to benefit from patient and public involvement (PPI). Decisions made by professional researchers at the outset may go on to have a significant impact on the potential for PPI contributions.

Research paper thumbnail of Evaluation of patient involvement in a systematic review and meta-analysis of individual patient data in cervical cancer treatment

Systematic Reviews, 2012

Background: In April 2005, researchers based at the Medical Research Council Clinical Trials Unit... more Background: In April 2005, researchers based at the Medical Research Council Clinical Trials Unit, set out to involve women affected by cervical cancer in a systematic review and meta-analysis of individual patient data to evaluate treatments for this disease. Each of the women had previously been treated for cervical cancer. Following completion of the meta-analysis, we aimed to evaluate the process of involvement from the researcher and research partner perspective. Methods: An advisory group was first established to give advice on recruiting, supporting and involving women and led to efforts to recruit women to take part in the systematic review using different approaches. Evaluation of the process and outcomes of the partnership between the systematic reviewers and the patients, in respect to what the partnership achieved; what worked well and what were the difficulties; what was learned and the resource requirements, took place during the conduct of the meta-analysis and again after completion of the project. Results: Six women, each of whom had received treatments for cervical cancer, were recruited as Patient Research Partners and five of these women subsequently took part in a variety of activities around the systematic review. They attended progress meetings and all but one attended a meeting at which the first results of the review were presented to all collaborators and gave feedback. Three of the women also became involved in a further related research project which led to an editorial publication from the patient perspective and also participated, along with two lead researchers, in the evaluation of the process and outcomes. While they were generally positive about the experience, one Patient Research Partner questioned the extent of the impact patients could make to the systematic review process. Conclusions: In general, researchers and patient research partners felt that they had learned a lot from the process and considered it to have been a positive experience. The researchers felt that because of resource implications, patient involvement in future systematic reviews would probably have to be prioritized to those in which the greatest impacts could be achieved.

Research paper thumbnail of Involvement of consumers in studies run by the Medical Research Council Clinical Trials Unit: Results of a survey

Trials, 2012

Background: We aimed to establish levels of consumer involvement in randomised controlled trials ... more Background: We aimed to establish levels of consumer involvement in randomised controlled trials (RCTs), metaanalyses and other studies carried out by the UK Medical Research Council (MRC) Clinical Trials Unit across the range of research programs, predominantly in cancer and HIV.

Research paper thumbnail of Consumer involvement at the MRC Clinical Trials Unit: results of a survey

Research paper thumbnail of Involving the Public in NHS

Public Health and Social …, 2004

Research paper thumbnail of Service user involvement in cancer care: the impact on service users

Health Expectations, 2011

Service user involvement is embedded in the United Kingdom&am... more Service user involvement is embedded in the United Kingdom's National Health Service, but knowledge about the impact of involvement on service users, such as the benefits and challenges of involvement, is scant. Our research addresses this gap. To explore the personal impact of involvement on the lives of service users affected by cancer. We conducted eight focus groups with user groups supplemented by nine face-to-face interviews with involved individuals active at a local, regional and national level. Thematic analysis was conducted both independently and collectively. Sixty-four participants, engaged in involvement activities in cancer services, palliative care and research, were recruited across Great Britain. We identified three main themes: (i) 'Expectations and motivations for involvement'- the desire to improve services and the need for user groups to have a clear purpose, (ii) 'Positive aspects of involvement'- support provided by user groups and assistance to live well with cancer and (iii) 'Challenging aspects of involvement'- insensitivities and undervaluing of involvement by staff. This study identified that involvement has the capacity to produce varied and significant personal impacts for involved people. Involvement can be planned and implemented in ways that increase these impacts and that mediates challenges for those involved. Key aspects to increase positive impact for service users include the value service providers attach to involvement activities, the centrality with which involvement is embedded in providers' activities, and the capacity of involvement to influence policy, planning, service delivery, research and/or practice.

Research paper thumbnail of Late Complications from Chemoradiotherapy for Cervical Cancer: Reflections from Cervical Cancer Survivors 10 Years after the National Cancer Institute Alert

Clinical Oncology, 2010

Around 10 years ago, the US National Cancer Institute issued an unprecedented clinical alert stat... more Around 10 years ago, the US National Cancer Institute issued an unprecedented clinical alert stating that chemoradiotherapy should be considered for women with cervical cancer instead of radiotherapy alone . This was based on the results of five randomised trials, each of which showed a benefit of chemoradiotherapy on survival. Since that recommendation, cisplatin-based chemoradiotherapy has become the standard of care in many countries for women with high-risk early stage and locally advanced cervical cancer. However, a number of important questions remained and there were concerns among the clinical community regarding the late effects of chemoradiotherapy, which anecdotally seemed to be worse than with radiotherapy alone .

Research paper thumbnail of Identifying the impact of service user involvement on the lives of people affected by cancer

Page 1. Identifying the impact of service user involvement on the lives of people affected by can... more Page 1. Identifying the impact of service user involvement on the lives of people affected by cancer FINAL REPORT A research study commissioned by Macmillan Cancer Support Phil Cotterell, Gwen Harlow, Carolyn Morris, Peter Beresford, ...