Fiona Miller | University of Toronto (original) (raw)

Papers by Fiona Miller

The cost of whole genome sequencing is dropping rapidly. There has been a great deal of enthusias... more The cost of whole genome sequencing is dropping rapidly. There has been a great deal of enthusiasm about the potential for this technological advance to transform clinical care. Given the interest and significant investment in genomics, this seems an ideal time to consider what the evidence tells us about potential benefits and harms, particularly in the context of health care policy. The scale and pace of adoption of this powerful new technology should be driven by clinical need, clinical evidence, and a commitment to put patients at the centre of health care policy. The Perspective section provides experts with a forum to comment on topical or controversial issues of broad interest.

Canadian Journal of Public Health-revue Canadienne De Sante Publique, Sep 1, 2004

We define social theory as: a general, systematic organization of concepts providing an understan... more We define social theory as: a general, systematic organization of concepts providing an understanding of a particular subject matter in relation to social aspects of life.

BMC Health Services Research, Jul 30, 2009

Background: Molecular oncology testing (MOT) to detect genomic alterations underlying cancer hold... more Background: Molecular oncology testing (MOT) to detect genomic alterations underlying cancer holds promise for improved cancer care. Yet knowledge limitations regarding the delivery of testing services may constrain the translation of scientific advancements into effective health care. Methods: We conducted a cross-sectional, self-administered, postal survey of active cancer physicians in Ontario, Canada (N = 611) likely to order MOT, and cancer laboratories (N = 99) likely to refer (i.e., referring laboratories) or conduct (i.e., testing laboratories) MOT in 2006, to assess respondents' perceptions of the importance and accessibility of MOT and their preparedness to provide it. Results: 54% of physicians, 63% of testing laboratories and 60% of referring laboratories responded. Most perceived MOT to be important for treatment, diagnosis or prognosis now, and in 5 years (61%-100%). Yet only 45% of physicians, 59% of testing labs and 53% of referring labs agreed that patients in their region were receiving MOT that is indicated as a standard of care. Physicians and laboratories perceived various barriers to providing MOT, including, among 70% of physicians, a lack of clear guidelines regarding clinical indications, and among laboratories, a lack of funding (73%-100%). Testing laboratories were confident of their ability to determine whether and which MOT was indicated (77% and 82% respectively), and perceived that key elements of formal and continuing education were helpful (75%-100%). By contrast, minorities of physicians were confident of their ability to assess whether and which MOT was indicated (46% and 34% respectively), and while majorities considered various continuing educational resources helpful (68%-75%), only minorities considered key elements of formal education helpful in preparing for MOT (17%-43%). Conclusion: Physicians and laboratory professionals were enthusiastic about the value of MOT for cancer care but most did not believe patients were gaining adequate access to clinically necessary testing. Further, our results suggest that many were ill equipped as individual stakeholders, or as a coordinated system of referral and interpretation, to provide MOT. These challenges should inspire educational, training and other interventions to ensure that developments in molecular oncology can result in optimal cancer care.

BMJ Open, Feb 1, 2019

Purpose Efforts are needed to reduce gendered inequities and improve health and well-being for wo... more Purpose Efforts are needed to reduce gendered inequities and improve health and well-being for women. Patientcentred care (PCC), an approach that informs and engages patients in their own health, is positively associated with improved care delivery, experiences and outcomes. This study aimed to describe how PCC for women (PCCW) has been conceptualised in research. Methods We conducted a theoretical rapid review of PCCW in four health conditions. We searched MEDLINE, EMBASE, CINAHL, SCOPUS, Cochrane Library and Joanna Briggs index for English-language articles published from January 2008 to February 2018 inclusive that investigated PCC and involved at least 50% women aged 18 or older. We analysed findings using a six-domain PCC framework, and reported findings with summary statistics and narrative descriptions. results After screening 2872 unique search results, we reviewed 51 full-text articles, and included 14 (five family planning, three preventive care, four depression, one cardiovascular disease and one rehabilitation). Studies varied in how they assessed PCC. None examined all six PCC framework domains; least evaluated domains were addressing emotions, managing uncertainty and enabling self-management. Seven studies that investigated PCC outcomes found a positive association with appropriate health service use, disease remission, health self-efficacy and satisfaction with care. Differing views about PCC between patients and physicians, physician PCC attitudes and geographic affluence influenced PCC. No studies evaluated the influence of patient characteristics or tested interventions to support PCCW. Conclusion There is a paucity of research that has explored or evaluated PCCW in the conditions of interest. We excluded many studies because they arbitrarily labelled many topics as PCC, or simply concluded that PCC was needed. More research is needed to fully conceptualise and describe PCCW across different characteristics and conditions, and to test interventions that improve PCCW. Policies and incentives may also be needed to stimulate greater awareness and delivery of PCCW.

BMC Health Services Research

Background While processes of adoption and the impacts of various health technologies have been e... more Background While processes of adoption and the impacts of various health technologies have been extensively studied by health services and policy researchers, the influence of policy makers’ governing styles on these processes have been largely neglected. Through a comparative analysis of non-invasive prenatal testing (NIPT) in the Canadian provinces of Ontario and Quebec, this article examines how decisions about this technology were shaped by contrasting political ideologies, resulting in vastly different innovation and adoption strategies and outcomes. Methods A comparative qualitative investigation comprising of a document analysis followed by semi-structured interviews with key informants. Interview participants were researchers, clinicians, and private sector medical laboratory employees based in Ontario and Quebec, Canada. Interviews were conducted both in person and virtually– owing partly to the COVID-19 pandemic – to garner perspectives regarding the adoption and innovatio...

Canadian Family Physician

This article is eligible for Mainpro+ certified Self-Learning credits. To earn credits, go to www... more This article is eligible for Mainpro+ certified Self-Learning credits. To earn credits, go to www.cfp.ca and click on the Mainpro+ link.

Canadian Family Physician

Exclusivement sur le web Commentaire Agir contre le changement climatique pour un avenir plus sai... more Exclusivement sur le web Commentaire Agir contre le changement climatique pour un avenir plus sain Le rôle essentiel des soins primaires au Canada

Tecnoscienza : Italian Journal of Science & Technology Studies, 2019

: A core aspect of the entrepreneurial hospital is the mobilisation of the means of care beyond c... more : A core aspect of the entrepreneurial hospital is the mobilisation of the means of care beyond care itself. In previous work, we showed how the entrepreneurial hospital uses its unique access to patient populations, whose health needs make them available, in order to facilitate research into therapeutic, diagnostic, or service delivery innovation. It ‘entrepreneurialises’ care, we argued, to meet research needs. What may be less obvious in this process, however, is that research, too, is entrepreneurialised to meet care needs. That is, the entrepreneurial hospital not only constitutes its patient populations and care infrastructure as distinctive assets that serve its entrepreneurial aims, but also positions its entrepreneurial aims as a decisive element in the service of care. This article develops the concept of the entrepreneurial hospital to help theorise biobanking. It foregrounds the views of biobankers – drawing from our ethnographic research and especially our interviews wi...

BackgroundDecision impact studies have become increasingly prevalent in oncology in recent years,... more BackgroundDecision impact studies have become increasingly prevalent in oncology in recent years, particularly in breast cancer prognostic research. Such studies, which aim to evaluate the impact of a test on clinical decision-making, appear to be a new form of knowledge with the potential to impact clinical practice and regulatory decision-making in genomic medicine. Yet their origins, intended purpose and usage have not yet been explored. The objectives of this review are to identify and characterize decision impact studies in genomic medicine in cancer care. This review is comprised of two parts. First, we will conduct a scoping review to catalogue the characteristics of decision impact studies. The scoping review will be followed by a bibliometric analysis to understand the role of actors and institutions in the production and dissemination of this new knowledge, by identifying influential articles, authors, global research trends and collaboration networks. MethodsWe will condu...

Journal of Community Genetics, 2021

Our purpose was to explore genetics health professionals' (GHPs) expectations of primary care pro... more Our purpose was to explore genetics health professionals' (GHPs) expectations of primary care providers' (PCPs) role in genomic medicine now and in the future. Focus groups/interviews were conducted with GHPs in Ontario, Canada. Recordings were transcribed and analysed using qualitative descriptive analysis. Five focus groups (6 clinical geneticists, 24 genetic counselors, 1 nurse, 4 laboratory staff, 3 genetics program administrators) and 3 interviews (nurses) were conducted. GHPs described a key role for PCPs in genomic medicine that could be enhanced if GHPs and PCPs worked together more effectively, making better use of GHPs as a scarce specialist resource, improving PCP knowledge and awareness of genomics, and increasing GHPs' understanding of primary care practice and how to provide PCPs meaningful education and support. Health system change is needed to facilitate the GHP/PCP relationship and improve care. This might include: PCPs ordering more genetic tests independently or with GHP guidance prior to GHP consultations, genomic expertise in primary care clinics or GHPs being accessible through buddy systems or virtually through telemedicine or electronic consultation, and developing educational materials and electronic decision support for PCPs. Our findings highlight need for change in delivering genomic medicine, which requires building the relationship between GHPs and PCPs, and creating new service delivery models to meet future needs.

BMJ Quality & Safety, 2020

Frontiers in Genetics, 2019

Preparing Primary Care for Genomics Carroll et al. Conclusion: FPs lack confidence in GM skills n... more Preparing Primary Care for Genomics Carroll et al. Conclusion: FPs lack confidence in GM skills needed for practice, particularly in emerging areas of GM. They see their role as making appropriate referrals, are somewhat optimistic about the contribution GM may make to patient care, but express caution about its current clinical benefits. There is a need for evidence-based educational resources integrated into primary care and improved communication with genetic specialists.

Health Research Policy and Systems, 2018

Background: Interest in public involvement in health research projects has led to increased atten... more Background: Interest in public involvement in health research projects has led to increased attention on the coordination of public involvement through research organisations, networks and whole systems. We draw on previous work using the 'health research system' framework to explore organisational actors and stewardship functions relevant to governance for public involvement. Methods: To inform efforts in Ontario, Canada, to mobilise public involvement across the provincial health research enterprise, we conducted an exploratory, qualitative descriptive study of efforts in two jurisdictions (England, United Kingdom, and Alberta, Canada) where there were active policy efforts to support public involvement, alongside jurisdiction-wide efforts to mobilise health research. Focusing on the efforts of public sector organisations with responsibility for funding health research, enabling public involvement, and using research results, we conducted in-depth, semi-structured interviews with 26 expert informants and used a qualitative thematic approach to explore how the involvement of publics in health research has been embedded and supported. Results: We identified three sets of common issues in efforts to advance public involvement. First, the initial aim to embed public involvement leveraged efforts to build self-conscious research 'systems', and mobilised policy guidance, direction, investment and infrastructure. Second, efforts to sustain public involvement aimed to deepen involvement activity and tackle diversity limitations, while managing the challenges of influencing research priorities and forging common purpose on the evaluation of public involvement. Finally, public involvement was itself an influential force, with the potential to reinforceor complicatethe ties that link actors within research systems, and to supportor constrainthe research system's capacity to serve and strengthen health systems. Conclusions: Despite differences in the two jurisdictions analysed and in the organisation of public involvement within them, the supporters and stewards of public involvement sought to leverage research systems to advance public involvement, anticipated similar opportunities for improvement in involvement processes and identified similar challenges for future involvement activities. This suggests the value of a health research system framework in governance for public involvement, and the importance of public involvement for the success of health research systems and the health systems they aim to serve.

Canadian Medical Association Journal, 2019

Evidence & Policy, 2019

Background:Despite broad scientific consensus about the importance of the early years in the life... more Background:Despite broad scientific consensus about the importance of the early years in the lifelong health and wellbeing of children, there is debate about whether and how healthcare professionals can optimise early child development through monitoring or screening. The evidence in support of a systematic population-level intervention is disputed, which is reflected in the diversity of approaches to developmental screening internationally. Methods:Using a case-study design, and interpretive qualitative methods, we explored how Canadian experts in child health (n=39): a) rationalise why they do, or would, pursue population-level developmental screening; b) articulate the policy goals of such an intervention, and; c) justify the practice with reference to evidence. Findings:Respondents identified three distinct framings, or policy agendas, for what developmental screening can and should seek to achieve, specifically: 1) as medical intervention, facilitating the early identification ...

Health Research Policy and Systems, 2018

Background: Growing interest in public involvement in health research has led to organisational a... more Background: Growing interest in public involvement in health research has led to organisational and policy change. Additionally, an emerging body of policy-oriented scholarship has begun to identify the organisational and network arrangements that shape public involvement activity. Such developments suggest the need to clearly conceptualise and characterise public involvement in health research in terms of governance. Methods: We drew on an established health research system framework to analyse governance functions related to public involvement, adapting scoping review methods to identify evidence from a corpus of journal papers and policy reports. We drew on the logics of aggregation and top down configuration, using a qualitative interpretive approach to combine and link findings from different studies into framework categories. Results: We identified a total of 32 scholarly papers and 13 policy reports (n = 45 included papers) with relevance to governance for public involvement. Included papers were broadly consonant in identifying the need for activity to specify and support public involvement across all four governance functions of stewardship, financing, creating and sustaining resources, and research production and use. However, different visions for public involvement, and the activity required to implement it and achieve impact, were particularly evident with respect to the stewardship function, which seeks to set overall directions for research while addressing the potentially competing demands of a system's many constituents. Conclusions: A governance perspective has considerable value for public involvement in health research systems, supporting efforts to coordinate and institutionalise the burgeoning public involvement enterprise. Furthermore, it highlights challenges for what is, ultimately, a highly political intervention, suggesting that diverse publics must be both involved within health research systems and enrolled as governors of them.

International Journal of Integrated Care, 2017

Emerging Technologies for Diagnosing Alzheimer's Disease, 2016

High expectations accompany developments in genomics, but responsible diagnostic innovation faces... more High expectations accompany developments in genomics, but responsible diagnostic innovation faces many impediments. Drawing on observations of a feasibility study of personalized cancer care, the authors highlight the informally regulated nature of diagnostic innovation systems, where translational imperatives blur clinical and research aims, key regulatory institutions are bypassed, and other cognitive, normative, and regulative institutions encourage attention to test performance, rather than patient outcomes. In these socio-technical systems of limited accountability, intentions to help patients and act ethically are not subject to test; instead, presumptions of benefit and duty are stabilized within material and organizational routines to produce diagnostic innovations of questionable value. Wider patient and public engagement, together with robust, legitimate, and accountable regulatory regimes will be required to truly ‘innovate with care’.

The cost of whole genome sequencing is dropping rapidly. There has been a great deal of enthusias... more The cost of whole genome sequencing is dropping rapidly. There has been a great deal of enthusiasm about the potential for this technological advance to transform clinical care. Given the interest and significant investment in genomics, this seems an ideal time to consider what the evidence tells us about potential benefits and harms, particularly in the context of health care policy. The scale and pace of adoption of this powerful new technology should be driven by clinical need, clinical evidence, and a commitment to put patients at the centre of health care policy. The Perspective section provides experts with a forum to comment on topical or controversial issues of broad interest.

Canadian Journal of Public Health-revue Canadienne De Sante Publique, Sep 1, 2004

We define social theory as: a general, systematic organization of concepts providing an understan... more We define social theory as: a general, systematic organization of concepts providing an understanding of a particular subject matter in relation to social aspects of life.

BMC Health Services Research, Jul 30, 2009

Background: Molecular oncology testing (MOT) to detect genomic alterations underlying cancer hold... more Background: Molecular oncology testing (MOT) to detect genomic alterations underlying cancer holds promise for improved cancer care. Yet knowledge limitations regarding the delivery of testing services may constrain the translation of scientific advancements into effective health care. Methods: We conducted a cross-sectional, self-administered, postal survey of active cancer physicians in Ontario, Canada (N = 611) likely to order MOT, and cancer laboratories (N = 99) likely to refer (i.e., referring laboratories) or conduct (i.e., testing laboratories) MOT in 2006, to assess respondents' perceptions of the importance and accessibility of MOT and their preparedness to provide it. Results: 54% of physicians, 63% of testing laboratories and 60% of referring laboratories responded. Most perceived MOT to be important for treatment, diagnosis or prognosis now, and in 5 years (61%-100%). Yet only 45% of physicians, 59% of testing labs and 53% of referring labs agreed that patients in their region were receiving MOT that is indicated as a standard of care. Physicians and laboratories perceived various barriers to providing MOT, including, among 70% of physicians, a lack of clear guidelines regarding clinical indications, and among laboratories, a lack of funding (73%-100%). Testing laboratories were confident of their ability to determine whether and which MOT was indicated (77% and 82% respectively), and perceived that key elements of formal and continuing education were helpful (75%-100%). By contrast, minorities of physicians were confident of their ability to assess whether and which MOT was indicated (46% and 34% respectively), and while majorities considered various continuing educational resources helpful (68%-75%), only minorities considered key elements of formal education helpful in preparing for MOT (17%-43%). Conclusion: Physicians and laboratory professionals were enthusiastic about the value of MOT for cancer care but most did not believe patients were gaining adequate access to clinically necessary testing. Further, our results suggest that many were ill equipped as individual stakeholders, or as a coordinated system of referral and interpretation, to provide MOT. These challenges should inspire educational, training and other interventions to ensure that developments in molecular oncology can result in optimal cancer care.

BMJ Open, Feb 1, 2019

Purpose Efforts are needed to reduce gendered inequities and improve health and well-being for wo... more Purpose Efforts are needed to reduce gendered inequities and improve health and well-being for women. Patientcentred care (PCC), an approach that informs and engages patients in their own health, is positively associated with improved care delivery, experiences and outcomes. This study aimed to describe how PCC for women (PCCW) has been conceptualised in research. Methods We conducted a theoretical rapid review of PCCW in four health conditions. We searched MEDLINE, EMBASE, CINAHL, SCOPUS, Cochrane Library and Joanna Briggs index for English-language articles published from January 2008 to February 2018 inclusive that investigated PCC and involved at least 50% women aged 18 or older. We analysed findings using a six-domain PCC framework, and reported findings with summary statistics and narrative descriptions. results After screening 2872 unique search results, we reviewed 51 full-text articles, and included 14 (five family planning, three preventive care, four depression, one cardiovascular disease and one rehabilitation). Studies varied in how they assessed PCC. None examined all six PCC framework domains; least evaluated domains were addressing emotions, managing uncertainty and enabling self-management. Seven studies that investigated PCC outcomes found a positive association with appropriate health service use, disease remission, health self-efficacy and satisfaction with care. Differing views about PCC between patients and physicians, physician PCC attitudes and geographic affluence influenced PCC. No studies evaluated the influence of patient characteristics or tested interventions to support PCCW. Conclusion There is a paucity of research that has explored or evaluated PCCW in the conditions of interest. We excluded many studies because they arbitrarily labelled many topics as PCC, or simply concluded that PCC was needed. More research is needed to fully conceptualise and describe PCCW across different characteristics and conditions, and to test interventions that improve PCCW. Policies and incentives may also be needed to stimulate greater awareness and delivery of PCCW.

BMC Health Services Research

Background While processes of adoption and the impacts of various health technologies have been e... more Background While processes of adoption and the impacts of various health technologies have been extensively studied by health services and policy researchers, the influence of policy makers’ governing styles on these processes have been largely neglected. Through a comparative analysis of non-invasive prenatal testing (NIPT) in the Canadian provinces of Ontario and Quebec, this article examines how decisions about this technology were shaped by contrasting political ideologies, resulting in vastly different innovation and adoption strategies and outcomes. Methods A comparative qualitative investigation comprising of a document analysis followed by semi-structured interviews with key informants. Interview participants were researchers, clinicians, and private sector medical laboratory employees based in Ontario and Quebec, Canada. Interviews were conducted both in person and virtually– owing partly to the COVID-19 pandemic – to garner perspectives regarding the adoption and innovatio...

Canadian Family Physician

This article is eligible for Mainpro+ certified Self-Learning credits. To earn credits, go to www... more This article is eligible for Mainpro+ certified Self-Learning credits. To earn credits, go to www.cfp.ca and click on the Mainpro+ link.

Canadian Family Physician

Exclusivement sur le web Commentaire Agir contre le changement climatique pour un avenir plus sai... more Exclusivement sur le web Commentaire Agir contre le changement climatique pour un avenir plus sain Le rôle essentiel des soins primaires au Canada

Tecnoscienza : Italian Journal of Science & Technology Studies, 2019

: A core aspect of the entrepreneurial hospital is the mobilisation of the means of care beyond c... more : A core aspect of the entrepreneurial hospital is the mobilisation of the means of care beyond care itself. In previous work, we showed how the entrepreneurial hospital uses its unique access to patient populations, whose health needs make them available, in order to facilitate research into therapeutic, diagnostic, or service delivery innovation. It ‘entrepreneurialises’ care, we argued, to meet research needs. What may be less obvious in this process, however, is that research, too, is entrepreneurialised to meet care needs. That is, the entrepreneurial hospital not only constitutes its patient populations and care infrastructure as distinctive assets that serve its entrepreneurial aims, but also positions its entrepreneurial aims as a decisive element in the service of care. This article develops the concept of the entrepreneurial hospital to help theorise biobanking. It foregrounds the views of biobankers – drawing from our ethnographic research and especially our interviews wi...

BackgroundDecision impact studies have become increasingly prevalent in oncology in recent years,... more BackgroundDecision impact studies have become increasingly prevalent in oncology in recent years, particularly in breast cancer prognostic research. Such studies, which aim to evaluate the impact of a test on clinical decision-making, appear to be a new form of knowledge with the potential to impact clinical practice and regulatory decision-making in genomic medicine. Yet their origins, intended purpose and usage have not yet been explored. The objectives of this review are to identify and characterize decision impact studies in genomic medicine in cancer care. This review is comprised of two parts. First, we will conduct a scoping review to catalogue the characteristics of decision impact studies. The scoping review will be followed by a bibliometric analysis to understand the role of actors and institutions in the production and dissemination of this new knowledge, by identifying influential articles, authors, global research trends and collaboration networks. MethodsWe will condu...

Journal of Community Genetics, 2021

Our purpose was to explore genetics health professionals' (GHPs) expectations of primary care pro... more Our purpose was to explore genetics health professionals' (GHPs) expectations of primary care providers' (PCPs) role in genomic medicine now and in the future. Focus groups/interviews were conducted with GHPs in Ontario, Canada. Recordings were transcribed and analysed using qualitative descriptive analysis. Five focus groups (6 clinical geneticists, 24 genetic counselors, 1 nurse, 4 laboratory staff, 3 genetics program administrators) and 3 interviews (nurses) were conducted. GHPs described a key role for PCPs in genomic medicine that could be enhanced if GHPs and PCPs worked together more effectively, making better use of GHPs as a scarce specialist resource, improving PCP knowledge and awareness of genomics, and increasing GHPs' understanding of primary care practice and how to provide PCPs meaningful education and support. Health system change is needed to facilitate the GHP/PCP relationship and improve care. This might include: PCPs ordering more genetic tests independently or with GHP guidance prior to GHP consultations, genomic expertise in primary care clinics or GHPs being accessible through buddy systems or virtually through telemedicine or electronic consultation, and developing educational materials and electronic decision support for PCPs. Our findings highlight need for change in delivering genomic medicine, which requires building the relationship between GHPs and PCPs, and creating new service delivery models to meet future needs.

BMJ Quality & Safety, 2020

Frontiers in Genetics, 2019

Preparing Primary Care for Genomics Carroll et al. Conclusion: FPs lack confidence in GM skills n... more Preparing Primary Care for Genomics Carroll et al. Conclusion: FPs lack confidence in GM skills needed for practice, particularly in emerging areas of GM. They see their role as making appropriate referrals, are somewhat optimistic about the contribution GM may make to patient care, but express caution about its current clinical benefits. There is a need for evidence-based educational resources integrated into primary care and improved communication with genetic specialists.

Health Research Policy and Systems, 2018

Background: Interest in public involvement in health research projects has led to increased atten... more Background: Interest in public involvement in health research projects has led to increased attention on the coordination of public involvement through research organisations, networks and whole systems. We draw on previous work using the 'health research system' framework to explore organisational actors and stewardship functions relevant to governance for public involvement. Methods: To inform efforts in Ontario, Canada, to mobilise public involvement across the provincial health research enterprise, we conducted an exploratory, qualitative descriptive study of efforts in two jurisdictions (England, United Kingdom, and Alberta, Canada) where there were active policy efforts to support public involvement, alongside jurisdiction-wide efforts to mobilise health research. Focusing on the efforts of public sector organisations with responsibility for funding health research, enabling public involvement, and using research results, we conducted in-depth, semi-structured interviews with 26 expert informants and used a qualitative thematic approach to explore how the involvement of publics in health research has been embedded and supported. Results: We identified three sets of common issues in efforts to advance public involvement. First, the initial aim to embed public involvement leveraged efforts to build self-conscious research 'systems', and mobilised policy guidance, direction, investment and infrastructure. Second, efforts to sustain public involvement aimed to deepen involvement activity and tackle diversity limitations, while managing the challenges of influencing research priorities and forging common purpose on the evaluation of public involvement. Finally, public involvement was itself an influential force, with the potential to reinforceor complicatethe ties that link actors within research systems, and to supportor constrainthe research system's capacity to serve and strengthen health systems. Conclusions: Despite differences in the two jurisdictions analysed and in the organisation of public involvement within them, the supporters and stewards of public involvement sought to leverage research systems to advance public involvement, anticipated similar opportunities for improvement in involvement processes and identified similar challenges for future involvement activities. This suggests the value of a health research system framework in governance for public involvement, and the importance of public involvement for the success of health research systems and the health systems they aim to serve.

Canadian Medical Association Journal, 2019

Evidence & Policy, 2019

Background:Despite broad scientific consensus about the importance of the early years in the life... more Background:Despite broad scientific consensus about the importance of the early years in the lifelong health and wellbeing of children, there is debate about whether and how healthcare professionals can optimise early child development through monitoring or screening. The evidence in support of a systematic population-level intervention is disputed, which is reflected in the diversity of approaches to developmental screening internationally. Methods:Using a case-study design, and interpretive qualitative methods, we explored how Canadian experts in child health (n=39): a) rationalise why they do, or would, pursue population-level developmental screening; b) articulate the policy goals of such an intervention, and; c) justify the practice with reference to evidence. Findings:Respondents identified three distinct framings, or policy agendas, for what developmental screening can and should seek to achieve, specifically: 1) as medical intervention, facilitating the early identification ...

Health Research Policy and Systems, 2018

Background: Growing interest in public involvement in health research has led to organisational a... more Background: Growing interest in public involvement in health research has led to organisational and policy change. Additionally, an emerging body of policy-oriented scholarship has begun to identify the organisational and network arrangements that shape public involvement activity. Such developments suggest the need to clearly conceptualise and characterise public involvement in health research in terms of governance. Methods: We drew on an established health research system framework to analyse governance functions related to public involvement, adapting scoping review methods to identify evidence from a corpus of journal papers and policy reports. We drew on the logics of aggregation and top down configuration, using a qualitative interpretive approach to combine and link findings from different studies into framework categories. Results: We identified a total of 32 scholarly papers and 13 policy reports (n = 45 included papers) with relevance to governance for public involvement. Included papers were broadly consonant in identifying the need for activity to specify and support public involvement across all four governance functions of stewardship, financing, creating and sustaining resources, and research production and use. However, different visions for public involvement, and the activity required to implement it and achieve impact, were particularly evident with respect to the stewardship function, which seeks to set overall directions for research while addressing the potentially competing demands of a system's many constituents. Conclusions: A governance perspective has considerable value for public involvement in health research systems, supporting efforts to coordinate and institutionalise the burgeoning public involvement enterprise. Furthermore, it highlights challenges for what is, ultimately, a highly political intervention, suggesting that diverse publics must be both involved within health research systems and enrolled as governors of them.

International Journal of Integrated Care, 2017

Emerging Technologies for Diagnosing Alzheimer's Disease, 2016

High expectations accompany developments in genomics, but responsible diagnostic innovation faces... more High expectations accompany developments in genomics, but responsible diagnostic innovation faces many impediments. Drawing on observations of a feasibility study of personalized cancer care, the authors highlight the informally regulated nature of diagnostic innovation systems, where translational imperatives blur clinical and research aims, key regulatory institutions are bypassed, and other cognitive, normative, and regulative institutions encourage attention to test performance, rather than patient outcomes. In these socio-technical systems of limited accountability, intentions to help patients and act ethically are not subject to test; instead, presumptions of benefit and duty are stabilized within material and organizational routines to produce diagnostic innovations of questionable value. Wider patient and public engagement, together with robust, legitimate, and accountable regulatory regimes will be required to truly ‘innovate with care’.