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PPI; intellectual disabilities; values
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McCarron M, Foley M, Fitzpatrick M et al. Utilizing a values framework in the Implementation of Public Patient Involvement: IDS-TILDA as a case study [version 1; peer review: awaiting peer review]. HRB Open Res 2025, 8:114 (https://doi.org/10.12688/hrbopenres.14183.1)
NOTE: If applicable, it is important to ensure the information in square brackets after the title is included in all citations of this article.
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Method Article
Utilizing a values framework in the Implementation of Public Patient Involvement: IDS-TILDA as a case study
[version 1; peer review: awaiting peer review]
PUBLISHED 24 Oct 2025
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This article is included in the TILDA gateway.
This article is included in the Public and Patient Involvement collection.
Abstract
Corresponding author:
Philip McCallion
Competing interests:
No competing interests were disclosed.
Grant information:
This research was funded by the Health Research Board Ireland [IDS-TILDA-2025-001] and the Department of Children, Disability and Equality.
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Copyright:
© 2025 McCarron M et al.
This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
How to cite: McCarron M, Foley M, Fitzpatrick M et al. Utilizing a values framework in the Implementation of Public Patient Involvement: IDS-TILDA as a case study [version 1; peer review: awaiting peer review]. HRB Open Res 2025, 8:114 (https://doi.org/10.12688/hrbopenres.14183.1)
First published: 24 Oct 2025, 8:114 (https://doi.org/10.12688/hrbopenres.14183.1)
Latest published: 24 Oct 2025, 8:114 (https://doi.org/10.12688/hrbopenres.14183.1)
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Introduction
In recent years, there has been a concerted effort to ensure that Public and Patient Involvement (PPI) is a central feature in all research. Such efforts have been highlighted by the Health Research Board (HRB) in Ireland, the National Institute for Health Research (NIHR) in the United Kingdom (UK), the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), and the Patient-Centered Outcomes Research Institute (PCORI) in the United States (US). Each of these organisations now require plans for how PPI and the building of co-researcher relationships will be included in any newly commissioned research.
Genuine and purposeful PPI occurs when individuals are meaningfully and actively involved in the research process at all stages, including governance, priority setting, conducting the research, dissemination and applying the resulting knowledge (Alm, 2010; Chapman & McNulty, 2004; Irish Health Research Forum, 2015; Irish Health Research Forum, 2022). The aim of PPI includes the improvement of service quality and enhancing accountability for public spending (Savory, 2010). PPI does not encompass a specific set of parameters; it occurs, rather, on a spectrum where the level of involvement can range from a minimal “receipt of information” up to full and ongoing partnership. This includes where research is initiated and led by the patient or other interested and involved members of public (See Figure 1).
Figure 1. Spectrum of Public and Patient Involvement (Irish Health Research Forum, 2015).
Definitions of PPI reflect principles from inclusive research – i.e., seeking intentional involvement of people closest to an issue or problem as experts on the topic under study. The implementation of PPI is also influenced by participatory research ideas, where integrating scientific investigation with community education and political action creates partnerships of community members and researchers. The enhanced understanding of community problems which results, alongside the empowerment of community members, democratises research and leads to shared solutions. Finally, there are perspectives of emancipatory research included, particularly when the participants in PPI are disadvantaged and previously marginalised. These perspectives seek to correct power imbalances between researchers and those being researched, increase sharing of control of the research process, and support social action and policy outcomes that will improve participants’ ability to pursue and achieve desired lives. This approach is of particular concern to participants when working with people with disabilities (Ferretti et al., 2011; Noel, 2016; Walmsley, 2004).
Methods
A case study approach was utilized to examine the role of PPI in the conceptualization, implementation and dissemination of findings from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA).
Ethical Review: Data utilized in the case study is included in the overall ethical approval and the written informed consent for the IDS-TILDA obtained for each wave of the study from the Trinity College Dublin Health Sciences Ethical Committee.
Case Study: The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a nationally representative study of adults over the age of 40 in Ireland, is a study that represents such an amalgamation (McCarron et al., 2023). IDS-TILDA will be used as a case study providing a roadmap and practical guide on what Patient and Public Involvement (PPI) means and involves, and contributing practical suggestions and examples of utilising PPI across the research cycle. It will also illustrate the value base that underpins the application of PPI approaches and innovations that ensure real and meaningful involvement of people with an intellectual disability.
IDS-TILDA is the first study to directly compare the ageing experience for people with an intellectual disability to general population, by working in tandem with The Irish Longitudinal Study on Ageing (TILDA). IDS-TILDA has published the report on the fifth wave of data collection (McCarron et al., 2023) providing information on the health, economic and social and environmental circumstances of a representative group of adults with intellectual disability who are growing older in Ireland. Through its linkage with the larger general population study, there is an opportunity to examine health, mental health, community living and engagement issues for both people with intellectual disability and the general population as they age. There is also an opportunity to consider issues unique to people with intellectual disabilities, particularly issues that they themselves have identified as of concern.
The key aims of IDS-TILDA are:
1. To understand the health characteristics of people ageing with an intellectual disability.
2. To examine the service needs and health service utilisation of people ageing with an intellectual disability.
3. To identify disparities in the health status of adults with an intellectual disability as compared to TILDA findings for the general population.
4. To support evidence-informed policies, practices and evaluation.
The conceptual framework underpinning IDS-TILDA spans a broad range of life domains, from physical and mental health to social inclusion and community participation (See Figure 2).
Figure 2. IDS-TILDA Conceptual Framework.
The original study sample was age-stratified and drawn randomly and anonymously from the National Intellectual Disability Database (NIDD), recruiting a study sample of 753 participants for Wave 1.
Now moving towards its sixth wave of data collection, it is important to remember that the origins of IDS-TILDA were groundbreaking. Before IDS-TILDA, there were few quantitative considerations of the aging of people with intellectual disabilities. Those that were undertaken were usually cross-sectional. They gathered data from proxy informants or from case records and they tended to target people with intellectual disabilities who were in residential settings, or who represented a particular level of risk (e.g. those with dementia (Lin et al., 2016). The differences in the needs of people with intellectual disabilities as compared to the general population were emphasised, but there was, as yet, no systematic effort to make comparisons.
Findings
PPI Participants Shaping the Study. Although a longitudinal approach and direct comparisons were considered desirable, there were concerns that: it would not be possible to accumulate a sufficiently large sample across levels of intellectual disability and living situations; assumed early mortality would mean cohorts could not be sustained; people with intellectual disability would not be able and would not be interested in participating in the lengthy protocols typical of longitudinal studies; and few individuals with intellectual disabilities would be able to personally complete those protocols – meaning proxies would have to be used, therefore posing problems in any data gathering on personal preferences or subjective experiences of ageing (Garcia et al., 2020; Lauer & McCallion, 2015; McCarron et al., 2015; Santoro et al., 2022). Although well intentioned, these research community concerns had the potential to continue to exclude people with intellectual disabilities from longitudinal studies that were increasingly informing public policy, health policy and healthy ageing strategies for people who were ageing. By beginning with a PPI emphasis – talking and engaging with people with intellectual disabilities and their family and staff carers – IDS-TILDA believed that inclusion and participation were possible, desirable and potentially beneficial both for people with intellectual disabilities themselves and for the advancement of a research process. It also required openness to people with intellectual disabilities and their family and staff carers becoming partners and influencing the various stages of the research process.
Very often, researchers interchangeably use the terms involvement, engagement, and participation. These are very different concepts where: (a) participation, for example, would have simply meant enrolling people with an intellectual disability and obtaining their consent to become participants in the IDS-TILDA study; (b) engagement would have involved sharing knowledge about the IDS-TILDA study with key stakeholders, including people with an intellectual disability, services-providers and the wider intellectual disability sector and; (c) involvement, which in this case meant the IDS-TILDA research team working in collaboration and partnership with people with an intellectual disability, staff caregivers, families, intellectual disability organisations and policy makers, in the planning, identification and prioritising of what data was important to collect. They were also involved in: designing the protocol and making reasonable adjustments to ensure that people with intellectual disability were empowered to participate; deciding how best to manage, conduct and administer the research protocol; analyse and interpret data; and the dissemination and translation of research. Participation and engagement were important, but involvement was the goal for PPI.
Empowerment is another term that is not always understood by researchers. Empowerment is not something “given” by the researcher to participants. Empowerment emerges from experiences of participation, encouraging confidence and the realisation of self-determination (McCallion & Ferretti, 2017). In IDS-TILDA, the valuing and promotion of each of the preceding values over time contributed to the building of empowered practice by PPI collaborators and the assuming of larger roles in the research cycle as each data collection wave of IDS-TILDA was implemented.
Ideas of involvement and empowerment in IDS-TILDA meant dividing the research cycle into project stages consistent with the approach recommended by the HRB (See Figure 3): identifying and prioritising; designing; undertaking/management; analysing and interpreting; and disseminating and implementing. Establishing these stages required the identification and negotiation of distinct roles with participants, thereby creating a roadmap for decision-making in the design and operation of the project and guaranteeing quality assurance and continuous improvement of processes as the project progressed.
Figure 3. Research Cycle: Adapted from the Health Research Board.
The Research Cycle for IDS-TILDA began with PPI and incorporated PPI principles throughout. IDS-TILDA advanced PPI, and its own success, by relying upon participatory and emancipatory approaches. As a longitudinal study, there were also opportunities to revisit, build and refine its processes, expand PPI participant roles, and allow empowered participation to increasingly emerge.
From its inception, the preparation for such involvement benefited from IDS-TILDA adopting an inclusive research approach embedded in a co-created values framework developed early in the study (See Figure 4). These values were: inclusion; promotion of people with intellectual disabilities; person centeredness; empowerment; contributions to the lives of people with intellectual disability; choice; and promotion of people with intellectual disabilities. In each stage of the research cycle these values advanced PPI and enriched the study.
Figure 4. IDS-TILDA Values Framework.
Identifying and Prioritising
Key PPI activities: Service-users, carers and members of the public help inform research priorities.
Prior to the launch of IDS-TILDA, as happens often in such studies, a pilot study assessed the readiness and interest in such a project. Once that was established, the feasibility of the sampling and recruitment strategies needed to be considered – i.e. what should and could be measured; how acceptable were the intended measures to participants; and ascertaining the likelihood of completing the proposed measures with people with intellectual disabilities. However, here that would be considered a second step; the first was to engage with people with intellectual disabilities and their carers. Through a series of events across the country, there was engagement around what ageing meant and the desire for such a study. An art competition supported designing a study logo that represented what people with intellectual disabilities viewed as the most important issues of ageing. People’s designs were based on the theme of “Healthy Happy Ageing & Wellbeing” and from the final nine entries, a winning design was selected (See Figure 5).
The designers of the logo wanted to highlight the importance of friendship and thus included the image of two friends holding hands “to step out for a brisk walk together”. They explained that the colours, yellow and pink, were chosen to symbolise young and old. The logo represents two friends dressed in pink and yellow stepping out of their front doors to go for a brisk walk. The outstretched arms in front of each door complete the letter ‘H’. There is one ‘H’ for ‘Healthy’: “Health is important because being healthy makes you feel alive,” and one ‘H’ for ‘Happy’. The ‘W’ stands for Wellness, and the letter ‘A’ between the feet of the two people represents the word ‘Ageing’. These ideas were a beginning point for the consideration of the study content.
Figure 5. The winning IDS-TILDA logo.
Inclusion and involvement were additional key values and at the suggestion of people with intellectual disabilities, IDS-TILDA asked people to send photographs of ‘What does ageing mean to you?’ All photos either featured a person with intellectual disability or were taken by a person with intellectual disability. Over 240 entries were received and organised into a national photographic exhibition entitled ‘Celebrating Ageing in Persons with Intellectual Disability.’ It was first exhibited at the official launch of the IDS-TILDA study and afterwards at venues throughout the country. Following the success of the exhibition, individuals with intellectual disabilities were asked to submit their instrumental music performances. A DVD to promote the study, the exhibit and the resulting design was produced by a camera club comprised of people with intellectual disabilities. This was also widely circulated.
The IDS-TILDA values framework helped to identify and prioritise processes, and advanced PPI principles. Inclusion was an integral facet in the design of the study. Co-designing the logo become an expression of what the study meant to people with intellectual disabilities, and what the study should represent, therefore contributing to a sense of empowerment. The national photographic exhibition captured the unique wishes, desires and concerns about ageing among people with intellectual disabilities, which meant that the design of data collection began from such person-centred values. The raising of awareness, initiating conversations about ageing in people with intellectual disabilities, highlighting the enjoyment of ageing – not just the physical and mental health consequences – and engaging a wide range of people with intellectual disabilities, had the additional practical effects of promoting IDS-TILDA before data collection began. The photographs, music and artwork that exhibited nationwide highlighted the talent and creativity of people with intellectual disability, their contributions and helped promotion of the personhood of people with intellectual disabilities.
The co-creation and use of accessible information sheets and accessible consent forms were essential to promote the informed choice of potential participants on whether they would like to participate in the study. Every effort was made, with the help and advice of people with intellectual disability, to present the information in a clear and accessible manner to help with decision-making.
Designing
Key PPI Activities included helping clarify the research question; co-designing the project; ensuring the methodology was suitable; and assisting with recruitment strategies. People with intellectual disabilities were asked to review and give opinions on preliminary lists of questions. The aim was to discuss the idea of ‘ageing,’ and what it meant to the individuals, to ascertain that the right questions were being asked. Each person could choose to participate in some, all, or none of the activities.
More formally, two advocacy groups comprised of adults with intellectual disabilities volunteered to join the research effort to further examine what should be asked. They offered ideas on how to ensure that all research materials were accessible to people with intellectual disabilities.
A thematic analysis of the discussions in the groups was conducted to identify the key themes about what should be asked about ageing. The questionnaire was developed at the same time as the focus groups were being held, allowing the two to work in tandem. Several themes that emerged from the focus groups confirmed what was already included in the questionnaire, such as, health, happiness, retirement, falls and education. Other themes highlighted issues that were not yet included in the questionnaire, yet which individuals in the focus group felt were essential: e.g. loneliness and perceptions of ageing. In considering this data, members of the research team recognised that perhaps they had been too willing to think that loneliness, in particular, might be too difficult or too uncomfortable a topic for people with intellectual disabilities to discuss, especially if participants did not understand the questions. The focus group participants wanted such issues to be part of the protocol. Sections were added in the questionnaire on both loneliness and perceptions of ageing. Group members also recommended that more questions were needed on transport and on barriers to health care. These were also added.
Turning to methodology, the first group reviewed and advised on showcards using images and symbols that could be used in the study. This was done to increase the numbers of people with intellectual disabilities who could participate independently, or with minimal support, in answering questions. The group recommended where extra images should be added, and in a number of cases they increased response options. The layout of the showcards was also changed based on their recommendations, with images and font size increased, orientation of the showcards changed from portrait to landscape, non-glossy paper used and previous plans for lamination discarded. Suggestions on relevant text, written in accessible language underneath images on the showcards for clarity, were also included.
The second advocacy group reviewed all other accessible materials including: information letters, information packs, consent forms, and appointment cards. In some cases, the relevance of proposed illustrations was questioned, and more suitable images recommended. As with the showcards, the images and text were enlarged. Further review was conducted by members of Ireland’s Plain English Campaign (National Adult Literacy Agency). In this way, all information pertinent to the study was co-created to be as clear as possible. This would allow potential participants to make informed decisions as to whether to participate, which was a key concern for recruitment.
Piloting and feasibility studies are a standard research practice, usually managed by researchers only. Here, the PPI participants were active members of the research group and in the pilot activities, meaning their review, recommendations and insistence of changes greatly improved the final products. Key to maximising the usefulness of this input was demonstrating day-to-day that opinions given were valued. In addition, a formal process was established to organise a meeting for PPI participants to review questions and related materials, make new suggestions, and discuss reactions. Participants then voted on content, presentation methods and ideas on improving accessibility and comprehension, using visual polling cards and coloured stickers to express opinions and votes (See Figure 6). Finally, participants received feed-back on how their questions would be used in the study.
Figure 6. Example of visual polling card in easy-read format.
A similar approach guided the development of a health fair where participants would participate in a series of direct health assessments. Members of a PPI panel convened for IDS-TILDA (who are now an on-going group within the research team) and advised upon the organisation of the physical space to be used for the health fair. They took the following points into consideration: the scheduling of appointments; suitability of the location; training of staff; explanation of procedures; approaches to completing physical assessments such as measuring height, weight and blood pressure; availability of supportive accessible materials to explain the assessments; and how staff could be seen as welcoming, enthusiastic and supportive. Feedback from participants completing assessments was also gathered to continually assess quality of delivery and identify processes for improvement.
It was, and continues to be, part of the designing approach that these consultations with groups of PPI participants are repeated as protocols and field worker trainings are revised.
Undertaking/Management
Key PPI activities included assisting in collecting and carrying out interviews; and representation on project steering and governance groups.
A critical role that the PPI participants continue to play is in the training of field interviewers. They also provide feedback on their readiness to complete interviews. Field interviewers themselves have reported on how useful they found this aspect of their preparation:
Meeting the PPI group was really good – I found all the content relevant, in particular having people with ID observing our interviewing skills… so insightful and made me more aware of what I should look out for and how I should act during interviews.
Workers do not successfully complete training unless the PPI participant on the training team agrees.
As the project evolved, persons with intellectual disabilities became full members of the IDS-TILDA steering committee, reviewing all aspects of the management of the project. To prepare for this involvement, a mentor from the research team worked with PPI participants to ensure they were fully informed and prepared, including organising an orientation to assume the role of committee members and ensuring accessible materials were provided. They also responded to requests from PPI participants to ensure they had the required information to participate, could understand the agenda, and felt prepared to contribute to the meeting. Debriefing meetings were routinely facilitated to provide feedback on how PPI participants felt each meeting worked for them, and to ensure they understood and agreed with the resulting decisions. PPI participants also met, and continue to meet, regularly as a panel and are a core component of the management of the project. No new activity is initiated, no changes are made in protocols and no accessible materials or reports are generated without input from this group. Equally, IDS-TILDA benefits from new ideas and challenges emanating from the contributors.
Engagement with PPI participants in the steering committee and the PPI panel has been a feature of each wave of IDS-TILDA. As PPI participant experience has grown, for all research team members, there has been a growing sophistication in the issues raised and in other team members’ ability to offer materials and support needed.
Analysing and interpreting
Key PPI activities here included working with the research team to interpret data and develop themes and priorities.
IDS-TILDA is a quantitative study supported by a statistician, data management and data protection staff, producing descriptive, cross-sectional and longitudinal analyses which often result in peer-reviewed publications and PhD student theses. Regarding these purely as specialised and isolated tasks would allow for missed opportunities to understand the data, identify new questions or knowledge gaps to be addressed, and understand how best to disseminate products for a broad range of constituencies, including people with intellectual disabilities themselves. For these reasons, emerging data is discussed in steering committee meetings (which have PPI representatives) and with the PPI Panel. The questions posed by the PPI participants and their reactions to emerging data have become an important barometer of how well data is being presented and understood. It is a reality check on how well emerging data aligns with lived experience, and is a source for potential new questions in future waves. This further exemplifies that as PPI participant experience has built across the waves of IDS-TILDA, there has been growing sophistication and interest in data and how it is used.
Dissemination
Key PPI activities were informing how best to share and present the findings, and how to write dissemination findings.
People with intellectual disabilities are part of all IDS-TILDA events, both online and in-person, and are part of the discussions and presentations about the issues that affect them. A PPI ambassador, a person with Down syndrome who chairs the PPI panel, holds a paid position within the project, leads many dissemination events, and is a key contributor to dissemination decisions.
Like everybody here, I have dreams for the future. There are things that I want to do, and I know dementia might play a part of my life too. So, when you start talking about dementia, I want to be included in that conversation. I want to be included in the conversation about my future. I want to be empowered so that I can choose how to reduce the risk of dementia (PPI Ambassador).
Such PPI participant involvement has helped shape not just easy-read materials for people with intellectual disability themselves, but has also informed how findings may be translated into interventions and actions to improve the health and lives of people with intellectual disabilities as they age. PPI participants report that involvement helps them feel valued, that they feel they are making a valuable contribution, and are making a difference.
As part of the 10-year anniversary of IDS-TILDA, the PPI panel chair produced a short film to speak to the data: IDS-TILDA (2018): https://idstilda.tcd.ie/participantinvolvement/ageingwithpride.php
Similarly, at the recent launch of IDS-TILDA Wave 5, the PPI ambassador gave the final concluding comments of the findings, along with their implication for the health and well-being of people ageing with an intellectual disability.
Scientific advice during the review of funding proposals suggested that the project should invest more in tableau-based visualisations to translate the findings for people with intellectual disabilities and other lay audiences. The PPI ambassador and PPI Panel members considered this recommendation. After viewing some initial visualisations, they disagreed. They insisted instead that there should be more investment in infographics and in short videos, as these were the tools that were accessible to the greatest number of people with intellectual disabilities. This is another example of the progressive movement to disseminate findings to people with intellectual disabilities themselves, and to their families and staff carers. The infographics and videos are distributed to all IDS-TILDA participants. The lessons learned in this ongoing collaboration have also influenced the development of dissemination materials for a range of audiences including a variety of infographics, videos, visualisations, webinars and social media contributions to supplement traditional print reports, conference presentations and peer-reviewed publications.
Implementation
Key PPI activities were building relationships with knowledge-users and policy makers through local user groups.
Retention of subjects is critical to maintaining the power and internal validity of longitudinal research. Attrition is a threat to the generalisability of outcomes and to the ability to detect effects of interest (Gustavson et al., 2012). A key benefit of including PPI participants in all aspects of a study is willingness to stay engaged. Tomlinson et al. (2019) found that being genuinely involved helps build commitment to the study and helps with recruitment and retention. Similarly, McKenna (2015), in a review of studies, found that PPI resulted in greater research impact. For IDS-TILDA, a retention rate of 87.1% of surviving participants (excluding deaths) through the first four waves of data collection over an 11-year period, resulted from relationship-building (McCarron et al., 2022). That relationship-building began in “identifying and prioritising” the early engagement of potential research subjects, as described in the logo competition, photography exhibition and DVD development. On-going engagement was carried out through regular newsletters and short videos; presentations at formal and informal locations where people with intellectual disabilities gather; and the sending of cards at major holidays.
There has also been a changing engagement around policy issues. With each wave of data collection there have been new public policy initiatives and, over time, the growing ability to consider how the implementation of prior policies are, or are not, effecting change in everyday lives. PPI participants are aware of these policy changes and the promised improvements in their lives. They are concerned that promised changes are not being realised and are aware of where additional changes are needed. Engagement around such issues with PPI participants means that IDS-TILDA has been able to move beyond simply documenting if policy changes are being implemented. It has allowed IDS-TILDA to consider for whom, and in what circumstances, change is occurring; what barriers are preventing change; whether barriers are being overcome over time; and whether policy implementation impacts individual lives. This is another example of where the relationship with the PPI panel, and growing inclusion within the research team, has led to increasingly informative discussions, the identification of new areas for investigation, and the generation of questions.
Conclusion
The case example of IDS-TILDA helps to illustrate that PPI is possible for all research subject groups, that the study itself is enriched by this involvement, and that there are successful strategies co-created with the participants to ensure participation will reach the level of genuine involvement in all activities and at all stages of the research cycle. The work for PPI also begins with guiding values created and implemented as part of the conceptualisation of the study. Finally, the work of PPI is not a one-time event but is constantly evolving and requires supportive resourcing, decision-making roles and involvement in the products that result. The journey of IDS-TILDA illustrates that all of this is possible, requires purposeful action and is always a work in progress.
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McCarron M, Foley M, Fitzpatrick M et al. Utilizing a values framework in the Implementation of Public Patient Involvement: IDS-TILDA as a case study [version 1; peer review: awaiting peer review]. HRB Open Res 2025, 8:114 (https://doi.org/10.12688/hrbopenres.14183.1)
NOTE: If applicable, it is important to ensure the information in square brackets after the title is included in all citations of this article.
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