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Article ; Online: Reporting of PPI and the MCID in phase III/IV randomised controlled trials-a systematic review.

Brennan, Joseph / Poon, Michael T C / Christopher, Edward / Fulton, Olivia / Porteous, Carol / Brennan, Paul M

2023 Volume 24, Issue 1, Page(s) 370

Abstract: Background: Patient and public involvement (PPI) in clinical trial design contributes to ensuring the research objectives and outcome measures are relevant to patients. The minimal clinically important difference (MCID) in the primary outcome influences ...

Abstract	Background: Patient and public involvement (PPI) in clinical trial design contributes to ensuring the research objectives and outcome measures are relevant to patients. The minimal clinically important difference (MCID) in the primary outcome influences trial design and feasibility and should be predicated on PPI. We aimed to determine current practice of reporting PPI and the MCID in phase III/IV randomised controlled trials (RCTs). Methods: Following a search of Medline, Embase, and the Cochrane Central Register of Controlled Trials, we included primary publications of phase III/IV RCTs, in English, inclusive of any medical specialty or type of intervention, that reported a health-related outcome. We excluded protocols and secondary publications of RCTs. We extracted RCT characteristics, the use of PPI, and use of the MCID. Results: Between 1 July 2019 and 13 January 2020, 123 phase III/IV RCTs matched our eligibility criteria. Ninety percent evaluated a medical rather than surgical intervention. Oncology accounted for 21% of all included RCTs. Only 2.4% (n = 3) and 1.6% (n = 2) RCTs described PPI and the MCID respectively. Conclusions: PPI and the MCID are poorly reported, so it is uncertain how these contributed to trial design. Improvement in the reporting of these items would increase confidence that results are relevant and clinically significant to patients, contributing to improving the overall trial design. Trial registration: Not registered.
MeSH term(s)	Humans ; Minimal Clinically Important Difference ; Outcome Assessment, Health Care ; Randomized Controlled Trials as Topic
Language	English
Publishing date	2023-05-31
Publishing country	England
Document type	Systematic Review ; Journal Article ; Review
ZDB-ID	2040523-6
ISSN	1745-6215 ; 1468-6694 ; 1745-6215
ISSN (online)	1745-6215
ISSN	1468-6694 ; 1745-6215
DOI	10.1186/s13063-023-07367-0
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Patient and public involvement in research: the need for budgeting PPI staff costs in funding applications.

De Simoni, Anna / Jackson, Tracy / Inglis Humphrey, Wendy / Preston, Jennifer / Mah, Heather / Wood, Helen E / Kinley, Emma / Gonzalez Rienda, Laura / Porteous, Carol

Research involvement and engagement

2023 Volume 9, Issue 1, Page(s) 16

Abstract: Background: Patient and Public Involvement (PPI) groups are becoming more established as collaborators with academic researchers and institutions to ensure that research is important and relevant to end users, and to identify areas that might have ... ...

Abstract	Background: Patient and Public Involvement (PPI) groups are becoming more established as collaborators with academic researchers and institutions to ensure that research is important and relevant to end users, and to identify areas that might have ethical considerations, as well as to advise on solutions. The National Institute for Health and Care Research UK Standards for Public Involvement in Research embody best practice for PPI, including support and learning opportunities that build confidence and skills for members of the public to play an invaluable and mutually productive role in research. However, the pivotal role of research and professional services (management and administrative) staff within academic institutions for sustaining and making this involvement successful is often overlooked. Main body: It takes significant effort to develop and sustain effective PPI in research. The six UK Standards for Public Involvement highlight the need for consistent, inclusive, well-governed and mutually respectful working relationships to sustain effective PPI contributions in health research. Productivity across a team of lay and academic members requires organisation and experience of implementing these standards by a dedicated PPI team, yet advice on PPI finances is usually focused on costs for patient panel members, and budgets in funding applications rarely consider the wider PPI team behind this involvement. As an exemplar, we reflect on how the Asthma UK Centre for Applied Research (AUKCAR) has developed a dedicated PPI Platform, with guidance for how PPI should be embedded throughout the research lifecycle, and detailed information to support the costing of PPI in funding applications. AUKCAR's work with established researchers, as well as Early Career Researchers and PhD students, is at the heart of a campaign to raise awareness of the importance of PPI in effective research planning. Conclusion: Focusing attention on the staff behind best practice involvement in health research may stimulate a much-needed discussion to ensure flourishing PPI capacity, with significant patient and public benefit. With adaptation, the PPI expertise within AUKCAR can be translated more widely.
Language	English
Publishing date	2023-03-25
Publishing country	England
Document type	Letter
ZDB-ID	2834246-X
ISSN	2056-7529 ; 2056-7529
ISSN (online)	2056-7529
ISSN	2056-7529
DOI	10.1186/s40900-023-00424-7
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Article: Towards a feminist philosophy of engagements in health-related research.

Erikainen, Sonja / Stewart, Ellen / Filipe, Angela Marques / Chan, Sarah / Cunningham-Burley, Sarah / Ilson, Sophie / King, Gabrielle / Porteous, Carol / Sinclair, Stephanie / Webb, Jamie

Wellcome open research

2022 Volume 6, Page(s) 58

Abstract: Engagement with publics, patients, and stakeholders is an important part of the health research environment today,and different modalities of 'engaged' health research have proliferated in recent years. Yet, th ere is no consensus on what, exactly, ' ... ...

Abstract	Engagement with publics, patients, and stakeholders is an important part of the health research environment today,and different modalities of 'engaged' health research have proliferated in recent years. Yet, th ere is no consensus on what, exactly, 'engaging' means, what it should look like, and what the aims, justifications, or motivations for it should be. In this paper, we set out what we see as important, outstanding challenges around the practice and theory of engaging and consider the tensions and possibilities that the diverse landscape of engaging evokes. We examine the roots, present modalities and institutional frameworks that have been erected around engaging, including how they shape and delimit how engagements are framed, enacted, and justified. We inspect the related issue of knowledge production within and through engagements, addressing whether engagements can, or should, be framed as knowledge producing activities. We then unpack the question of how engagements are or could be valued and evaluated, emphasising the plural ways in which 'value' can be conceptualised and generated. We conclude by calling for a philosophy of engagements that can capture the diversity of related practices, concepts and justifications around engagements, and account for the plurality of knowledges and value that engagements engender, while remaining flexible and attentive to the structural conditions under which engagements occur. Such philosophy should be a feminist one, informed by feminist epistemological and methodological approaches to equitable modes of research participation, knowledge production, and valuing. Especially, translating feminist tools of reflexivity and positionalityinto the sphere of engagements can enable a synergy of empirical, epistemic and normative considerations in developing accounts of engaging in both theory and praxis. Modestly, here, we hope to carve out the starting points for this work.
Language	English
Publishing date	2022-02-10
Publishing country	England
Document type	Journal Article
ISSN	2398-502X
ISSN	2398-502X
DOI	10.12688/wellcomeopenres.16535.2
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Article ; Online: Feasibility and ethics of using data from the Scottish newborn blood spot archive for research.

Communications medicine

2022 Volume 2, Page(s) 126

Abstract: Background: Newborn heel prick blood spots are routinely used to screen for inborn errors of metabolism and life-limiting inherited disorders. The potential value of secondary data from newborn blood spot archives merits ethical consideration and ... ...

Abstract	Background: Newborn heel prick blood spots are routinely used to screen for inborn errors of metabolism and life-limiting inherited disorders. The potential value of secondary data from newborn blood spot archives merits ethical consideration and assessment of feasibility for public benefit. Early life exposures and behaviours set health trajectories in childhood and later life. The newborn blood spot is potentially well placed to create an unbiased and cost-effective population-level retrospective birth cohort study. Scotland has retained newborn blood spots for all children born since 1965, around 3 million in total. However, a moratorium on research access is currently in place, pending public consultation. Methods: We conducted a Citizens' Jury as a first step to explore whether research use of newborn blood spots was in the public interest. We also assessed the feasibility and value of extracting research data from dried blood spots for predictive medicine. Results: Jurors delivered an agreed verdict that conditional research access to the newborn blood spots was in the public interest. The Chief Medical Officer for Scotland authorised restricted lifting of the current research moratorium to allow a feasibility study. Newborn blood spots from consented Generation Scotland volunteers were retrieved and their potential for both epidemiological and biological research demonstrated. Conclusions: Through the Citizens' Jury, we have begun to identify under what conditions, if any, should researchers in Scotland be granted access to the archive. Through the feasibility study, we have demonstrated the potential value of research access for health data science and predictive medicine.
Language	English
Publishing date	2022-10-06
Publishing country	England
Document type	Journal Article
ISSN	2730-664X
ISSN (online)	2730-664X
DOI	10.1038/s43856-022-00189-2
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Article ; Online: Challenges to remaining at work with common health problems: what helps and what influence do organisational policies have?

Buck, Rhiannon / Porteous, Carol / Wynne-Jones, Gwenllian / Marsh, Katie / Phillips, Ceri J / Main, Chris J

Journal of occupational rehabilitation

2011 Volume 21, Issue 4, Page(s) 501–512

Abstract: Introduction: Common health problems have a significant impact on work productivity (presenteeism), and sickness absence. The aim of this study was to examine the attitudes and beliefs of employees in the public sector about common health problems and ... ...

Abstract	Introduction: Common health problems have a significant impact on work productivity (presenteeism), and sickness absence. The aim of this study was to examine the attitudes and beliefs of employees in the public sector about common health problems and work using the Flags system as a conceptual framework to identify problems and potential solutions. Method: 63 employees took part in 14 focus groups in two public sector organisations. Discussions were audio-recorded, transcribed, and analysed thematically using NVivo. Results: The study confirmed the importance of heath-focused clinical factors (Yellow flags), perceptions of work (Blue flags), and more objective characteristics of work and organisational policies (Black flags), which emerged as major themes. The social and moral norms surrounding sickness absence and presenteeism were frequently discussed, including the impact of absence on colleagues, guilt, legitimising illness, and trust. There were interactions between the different Flags, often mediated by managers via their relationships with employees and their role in implementing organisational policy. Conclusions: The Flags system was useful as a conceptual framework in this context for identifying a number of obstacles to working with health problems, many of which were potentially modifiable on worker, workplace, or wider systems levels.
MeSH term(s)	Absenteeism ; Adult ; Attitude to Health ; Efficiency ; Female ; Focus Groups ; Health Behavior ; Health Status ; Humans ; Interpersonal Relations ; Male ; Middle Aged ; Organizational Culture ; Organizational Policy ; Sick Leave ; Social Environment ; Work/physiology ; Work/psychology ; Workload ; Workplace/organization & administration
Language	English
Publishing date	2011-02-17
Publishing country	Netherlands
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	1171536-4
ISSN	1573-3688 ; 1053-0487
ISSN (online)	1573-3688
ISSN	1053-0487
DOI	10.1007/s10926-011-9288-2
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Article ; Online: Description and evaluation of the first national patient and public involvement day for thyroid eye disease in the United Kingdom.

Smith, Henry B / Porteous, Carol / Bunce, Catey / Bonstein, Karen / Hickey, Janis / Dayan, Colin M / Adams, Gill / Rose, Geoff E / Ezra, Daniel G

Thyroid : official journal of the American Thyroid Association

2014 Volume 24, Issue 9, Page(s) 1400–1406

Abstract: Background: To ensure appropriate patient-focused outcomes, the National Institute for Health Research (NIHR) in the United Kingdom has made consultation with patients, caregivers, and the public a prerequisite to providing research funding. One method ... ...

Abstract	Background: To ensure appropriate patient-focused outcomes, the National Institute for Health Research (NIHR) in the United Kingdom has made consultation with patients, caregivers, and the public a prerequisite to providing research funding. One method of encouraging engagement with research is through patient and public involvement (PPI) events. We describe the planning and implementation of a PPI day for thyroid eye disease (TED) and evaluate our own event using feedback from delegates. Methods: The Moorfields NIHR Biomedical Research Centre, in partnership with TED charities, arranged the first national PPI day for TED in the United Kingdom. The event included didactic lectures; pre-event and postevent questionnaires; an exhibition with stalls, posters, and an interactive voting wall to determine research priorities; focus group sessions to explore patient experiences and perceptions of research; and one-on-one interviews recording individual patient stories. Results: Of 100 attendees, 70 completed questionnaires. When asked whether the day had provided what they wanted, 48 of 52 (92%) said yes; 3 of 52 (6%) said no. Overall 6 of 52 (12%) rated the event as good; 28 of 52 (54%), very good; and 18 of 52 (34%), excellent. Thirty-six patients registered to participate in further research, identifying "finding the cause for TED," "improving psychological support," and "achieving a better cosmetic outcome" as key priorities. A poor understanding of TED among medical professionals was a common complaint. Conclusions: The event received positive feedback and achieved its key objective of engaging patients, researchers, and clinicians in a two-way discussion about research priorities and improved study design. An invaluable insight was gained into patients' needs for a better quality of life, and we have demonstrated that important data can be captured from such events, providing an evidential basis consistent with the NIHR principles of patient-centered research.
MeSH term(s)	Adult ; Aged ; Female ; Graves Ophthalmopathy ; Humans ; Male ; Middle Aged ; Patient Participation ; Surveys and Questionnaires ; United Kingdom
Language	English
Publishing date	2014-07-21
Publishing country	United States
Document type	Evaluation Study ; Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	1086044-7
ISSN	1557-9077 ; 1050-7256
ISSN (online)	1557-9077
ISSN	1050-7256
DOI	10.1089/thy.2014.0200
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Article ; Online: What happens to work if you're unwell? Beliefs and attitudes of managers and employees with musculoskeletal pain in a public sector setting.

Wynne-Jones, Gwenllian / Buck, Rhiannon / Porteous, Carol / Cooper, Lucy / Button, Lori A / Main, Chris J / Phillips, Ceri J

Journal of occupational rehabilitation

2010 Volume 21, Issue 1, Page(s) 31–42

Abstract: Introduction: Musculoskeletal complaints can impact on work in terms of productivity, sickness absence and long term incapacity for work. While employee attitudes and knowledge can drive absenteeism and presenteeism behaviour, managers also play an ... ...

Abstract	Introduction: Musculoskeletal complaints can impact on work in terms of productivity, sickness absence and long term incapacity for work. While employee attitudes and knowledge can drive absenteeism and presenteeism behaviour, managers also play an important role in influencing this via the quality of their relationships with employees and their role in implementing organisational policies and procedures. The aims of this study were to investigate the beliefs and attitudes of managers and employees with musculoskeletal pain about sickness absence, presenteeism, and return to work and to identify areas of consensus and conflict. Methods: 18 employees with musculoskeletal pain and 20 managers from two large public sector organisations in South Wales, UK, took part in individual face-to-face interviews. Data were analysed thematically using NVivo. Results: Employees' and managers' reports indicated that there was a strong culture of presenteeism in these organisations. Establishing the legitimacy of complaints was a salient theme for both managers and employees, although their views were in conflict. Employees reported feeling that contact with employers was intrusive when sickness absence was legitimate. Managers were supportive of those who they felt were 'genuinely' unwell, but also cited examples of people 'working the system' and not reporting absences appropriately. Conclusions: These issues require careful consideration of the rights and responsibilities of both employees and employers, where strategies for improving communication, trust, and creating an environment conducive to successful return to work need to be investigated.
MeSH term(s)	Absenteeism ; Adult ; Chronic Disease ; Employment/psychology ; Female ; Health Knowledge, Attitudes, Practice ; Humans ; Interpersonal Relations ; Interviews as Topic ; Male ; Middle Aged ; Musculoskeletal Diseases/rehabilitation ; Organizational Policy ; Personnel Management ; Public Sector ; Qualitative Research ; Socioeconomic Factors ; Surveys and Questionnaires ; United Kingdom ; Workplace/psychology ; Young Adult
Language	English
Publishing date	2010-07-03
Publishing country	Netherlands
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	1171536-4
ISSN	1573-3688 ; 1053-0487
ISSN (online)	1573-3688
ISSN	1053-0487
DOI	10.1007/s10926-010-9251-7
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Article ; Online: Consensus Statement on Public Involvement and Engagement with Data Intensive Health Research.

Aitken, Mhairi / Tully, Mary P / Porteous, Carol / Denegri, Simon / Cunningham-Burley, Sarah / Banner, Natalie / Black, Corri / Burgess, Michael / Cross, Lynsey / van Delden, Johannes Jm / Ford, Elizabeth / Fox, Sarah / Fitzpatrick, Natalie K / Gallacher, Kay / Goddard, Catharine / Hassan, Lamiece / Jamieson, Ron / Jones, Kerina H / Kaarakainen, Minna /

Lugg-Widger, Fiona / McGrail, Kimberlyn / McKenzie, Anne / Moran, Rosalyn / Murtagh, Madeleine J / Oswald, Malcolm / Paprica, Alison / Perrin, Nicola / Richards, Emma Victoria / Rouse, John / Webb, Joanne / Willison, Donald J

International journal of population data science

2019 Volume 4, Issue 1, Page(s) 586

Language	English
Publishing date	2019-02-12
Publishing country	Wales
Document type	Journal Article
ISSN	2399-4908
ISSN (online)	2399-4908
DOI	10.23889/ijpds.v4i1.586
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Article ; Online: Exploring the role of economics in prioritization in public health: what do stakeholders think?

Phillips, Ceri J / Fordham, Richard / Marsh, Kevin / Bertranou, Evelina / Davies, Shân / Hale, Janine / Kingsley, Michael / Parke, Sian / Porteous, Carol / Rance, Jaynie / Warm, Daniel

European journal of public health

2011 Volume 21, Issue 5, Page(s) 578–584

Abstract: Background: Debates surrounding the use of conventional approaches in public health and the existence of perceived barriers to using the results of economic evaluations have led to questions posed as to how to establish priorities within public health ... ...

Abstract	Background: Debates surrounding the use of conventional approaches in public health and the existence of perceived barriers to using the results of economic evaluations have led to questions posed as to how to establish priorities within public health schemes. The aims of this study were therefore to explore the feasibility and validity of economic evaluation techniques in developing priorities within public health programmes and consider the extent to which different presentational approaches are likely to be incorporated into decision-making, from perspectives of relevant stakeholders. Methods: An advisory board, representative of potential users of economic evaluations, was set up to identify preferences for how findings from economic evaluations might be presented to decision makers and to test the impact of different approaches, different outputs and different presentational styles. The board was divided into two groups, each of which was given three hypothetical 'scenarios' to consider. The scenarios comprised descriptions of methods and outputs, with costs, effects, target population and context of intervention constant across all scenarios. Results: The perceived validity of estimates of effectiveness was vitally important, along with sufficient information to gauge whether designs were appropriate and to assess implementation practicalities. Cost-benefit analysis and cost-utility analysis were the preferred approaches despite their complexity, although participants required benchmarks to place net-benefit estimates from cost-benefit analyses into context. Conclusion: Further research is required to substantiate and build on these preliminary findings and collaborations between economists and policy makers are needed to develop clear, rigorous and standard guidance relating to economic evaluation, recognizing the diversity of public health strategies.
MeSH term(s)	Cost-Benefit Analysis ; Decision Making ; Feasibility Studies ; Health Priorities/economics ; Health Promotion/economics ; Health Services Research ; Humans ; Program Evaluation/economics ; Program Evaluation/methods ; Public Health/economics ; Reproducibility of Results
Language	English
Publishing date	2011-10
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	1129243-x
ISSN	1464-360X ; 1101-1262
ISSN (online)	1464-360X
ISSN	1101-1262
DOI	10.1093/eurpub/ckq121
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