Early detection of symptomatic cancer in primary care in Ireland: a protocol for a research prioritisation exercise

Benjamin M. Jacob; Laura O'Connor; Barbara Clyne; Heather Burns; Surour Alneyadi; Primary Care PPI Group (HRB Primary Care Clinical Trials Network); Richard D Neal; Patrick Redmond

doi:10.12688/hrbopenres.13749.2

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Study Protocol

Revised

Early detection of symptomatic cancer in primary care in Ireland: a protocol for a research prioritisation exercise

[version 2; peer review: 1 approved, 2 approved with reservations]

Benjamin M. Jacob ¹, Laura O'Connor², Barbara Clyne³, [...] Heather Burns⁴, Surour Alneyadi¹, Primary Care PPI Group (HRB Primary Care Clinical Trials Network), Richard D Neal⁵, Patrick Redmond¹

Benjamin M. Jacob ¹, Laura O'Connor², [...] Barbara Clyne³, Heather Burns⁴, Surour Alneyadi¹, Primary Care PPI Group (HRB Primary Care Clinical Trials Network), Richard D Neal⁵, Patrick Redmond¹

PUBLISHED 11 Nov 2025

Author details Author details

¹ Department of General Practice, RCSI University of Medicine and Health Sciences, Dublin, Ireland
² HRB Primary Care Clinical Trials Network Ireland, University of Galway, Galway, Ireland
³ Department of Public Health & Epidemiology, RCSI University of Medicine and Health Sciences, Dublin, Ireland
⁴ National Cancer Control Programme, Health Service Executive, Dublin, Ireland
⁵ Department of Health and Community Sciences, Faculty of Health and Life Sciences, University of Exeter, Exeter, UK

Benjamin M. Jacob
Roles: Conceptualization, Methodology, Project Administration, Visualization, Writing – Original Draft Preparation, Writing – Review & Editing

Laura O'Connor
Roles: Methodology, Writing – Review & Editing

Barbara Clyne
Roles: Writing – Review & Editing

Heather Burns
Roles: Writing – Review & Editing

Surour Alneyadi
Roles: Writing – Review & Editing

Richard D Neal
Roles: Writing – Review & Editing

Patrick Redmond
Roles: Conceptualization, Funding Acquisition, Methodology, Project Administration, Supervision, Writing – Original Draft Preparation, Writing – Review & Editing

OPEN PEER REVIEW

REVIEWER STATUS

Abstract

Background

Cancer is a significant cause of morbidity, mortality, and economic loss in Ireland. It is important that cancer research funding is directed in accordance with the values of a wide variety of stakeholders, so as to ultimately deliver tangible benefits to cancer patients. The aim of this study is to achieve consensus among key stakeholders (including patients, caregivers, healthcare professionals, policymakers and academics) regarding research priorities in the area of early detection of symptomatic cancer in primary care in Ireland.

Methods

A research prioritisation exercise adapted from the James Lind Alliance (JLA) consensus framework will be used to enable all key stakeholders to identify and prioritise research questions. This involves the following stages: (1) setting up a steering group and priority setting partnership, (2) gathering potential research questions via an online survey, (3) processing, categorising, and summarising these research questions, (4) identifying the unanswered research questions, (5) determining the top 10 research priorities via a consensus workshop.

Results

The following outcomes will be reported: (1) a “Top 10” list of the most important research questions in early detection of symptomatic cancer in primary care; (2) a list of unanswered research questions which ranked outside of the Top 10; (3) a list of research questions which were proposed but considered to be already answered by a panel of academics working in the field.

Conclusions

The co-production of consensus derived research questions in early cancer detection will provide a platform for both funders and researchers to concentrate on the most significant issues to stakeholders, especially patients and their doctors.

Keywords

Research priority setting; Patient and Public Involvement; Primary care; General Practice; Early Detection of Cancer; Ireland

Corresponding author: Benjamin M. Jacob

Competing interests: No competing interests were disclosed.

Grant information: Part-funded by the Irish Cancer Society Translational Cancer Research Networking Award (TCRNA22RED).
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Copyright: © 2025 Jacob BM 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: Jacob BM, O'Connor L, Clyne B et al. Early detection of symptomatic cancer in primary care in Ireland: a protocol for a research prioritisation exercise [version 2; peer review: 1 approved, 2 approved with reservations]. HRB Open Res 2025, 6:52 (https://doi.org/10.12688/hrbopenres.13749.2) First published: 13 Sep 2023, 6:52 (https://doi.org/10.12688/hrbopenres.13749.1) Latest published: 11 Nov 2025, 6:52 (https://doi.org/10.12688/hrbopenres.13749.2)

Revised Amendments from Version 1

This updated study protocol reflects revisions in response to peer reviewer feedback. Changes were made to improve clarity, strengthen rationale for methodology, and ensure consistent terminology throughout. Key sections have been reconstructed, including the rationale, aims and objectives, and overall scope of the study. The introduction now incorporates more national data on cancer incidence and statistics and inequalities in Ireland, acknowledging the continued rise in cancer occurrence since the previous version. References have been updated.

The healthcare context section has been expanded. These additions strengthen the study for sampling strategies that promote broader inclusion and representation. By reflecting the diversity of healthcare access and experiences in Ireland, the revisions support a study population that is more representative of the Irish public, enhancing both the inclusivity of recruitment and the relevance of the workshop in shaping the Top 10 protocol nationwide.

These contextual updates also underpin refinements to the recruitment strategy and the design of the consensus workshop, enabling a wider range of perspectives to be included. Recruitment pathways are now more clearly defined and expanded to engage networks across the continuum of cancer care, including clinical, academic, community, patient and PPI groups. 
The online survey (Table 1) has been revised, adding two more general yes/no questions (Questions 7 and 8) and a free-text box for participants interested in joining the workshop.

Finally, the author list has been updated to reflect new contributions to the revised protocol.

See the authors' detailed response to the review by Xiaoyu Zong
See the authors' detailed response to the review by Kevin Monahan
See the authors' detailed response to the review by Yasemin Hirst

Introduction

Cancer imposes a significant healthcare burden on Ireland with an average of 35,825 invasive cancers diagnosed annually between 2018–2020¹. Cancers diagnosed at an advanced stage are associated with poor prognosis². Early detection—i.e., finding tumours before they spread—offers the greatest potential for cure, in addition to reducing morbidity and the cost of treatment².

In addition to cancer accounting for 5% of all health expenditure in Ireland³, cancer research is a major destination for health research funds⁴. Research funding is not allocated in proportion to the burden of disease nor its potential impact on population health^5–7. It is known to be biased towards existing areas of research, influenced by the capacity and ‘track record’ of successful researchers^5,6. “Early cancer detection, diagnosis and prognosis” research receives 16% of all cancer research funding in the UK, with “Biology” and “Treatment” sectors each receiving double this amount⁸. Primary care research, the key player in early cancer detection^9–11, is known to be underfunded relative to laboratory and secondary care research^12–16. Early detection of symptomatic cancer highlights the unique role of primary care professionals in recognizing and triaging early-stage symptoms. While asymptomatic patients benefit from prevention and screening programs managed outside primary care, symptomatic patients must be seen by a physician to ensure timely evaluation and referral. In Ireland, patients from deprived populations face a 40% higher five-year cancer mortality, with additional inequalities linked to geography, education, and screening participation, while data on marginalized and migrant groups remain limited^17,18.

Research prioritisation exercises aim to address this mismatch and highlight (to researchers, funders, and industry) questions of most interest and relevance to key stakeholders¹⁹. The process involves identifying research priorities among a diverse stakeholder group, mapping corresponding gaps in the evidence, and ranking them by importance in accordance with the priorities of the stakeholders²⁰. There is evidence that this leads to efficient allocation of funding resources and decreases research waste^21–23.

The James Lind Alliance (JLA) is a British initiative, established in 2004, which seeks to “bring patient, carers and clinicians together to identify and prioritise the unanswered questions they want health research to address” in groups known as “Priority Setting Partnerships” (PSPs)^20,24,25. In the UK, in 2019, the “Detecting Cancer Early PSP” produced a “Top 10” list of research questions in this area: five related to testing for cancer, three related to using patient data more effectively, one related to identifying social risk factors for late diagnosis, and one related to tumour pathology^25,26.

Rationale, aims and objectives

However, given the substantial differences in primary healthcare contexts between the UK and Ireland^27,28, it is important to develop a consensus around research priorities in an Irish setting. The aim of this study is to achieve consensus regarding the shared research priorities of patients, caregivers, healthcare professionals and academics in relation to early detection of symptomatic cancer in primary care in Ireland. The JLA has effectively captured research priorities from the perspectives of patients, carers, and clinicians, promoting relevance, transparency, and trust²⁹. Its structured, well-established process is feasible in Ireland and produces stakeholder-informed priorities that enhance research impact, uptake, and collaboration³⁰.

Methods

A research prioritisation exercise will be conducted, informed by the JLA framework, comprising an online survey, literature review, interim priority setting, and in-person consensus workshop. We will utilise the standardised reporting guideline for priority setting of health research (REPRISE)³¹. The six stages of the prioritisation exercise are illustrated in Figure 1.

Figure 1. Stages of the research prioritisation exercise.

Beneficiary

The ultimate beneficiary of the research priority setting will be the Irish public who will gain from any resulting improvements to cancer care which permit earlier detection, thereby allowing more effective treatment and better outcomes³².

Scope

The scope of this research prioritisation exercise is limited to the early detection of symptomatic primary cancer in adults in primary care in Ireland

By “early detection of symptomatic primary cancer,” we are excluding “cancer prevention” and “screening”, which are interventions intended for asymptomatic populations and are primarily carried out by public health, though primary care often plays a supporting role³⁴. We are also excluding cancer recurrence, as surveillance in this context is led by secondary care (typically Oncology), meaning that any research or solutions would need to be developed in co-partnership with that discipline. By “primary care,” we mean all health or social care services available in the community, outside of hospitals, including general practitioners (GPs), Public Health Nurses, and other services that provide a single point of contact with the health system³³.

Ireland is a sovereign state often referred to as the “Republic of Ireland”, and should not be confused with “Northern Ireland” which is one of four “nations” which make up the United Kingdom.

Healthcare context

The Irish primary healthcare system is characterised by mixed public/private funding — GP visits are free for only 40% of residents (roughly the poorest one-third of society, under 6s, over 70s and those with eligible medical conditions) with either a “medical card” or a “GP visit card”^27,35. The remainder pay €53 on average to visit the GP³⁶. Population-based cancer screening programmes are offered for breast, cervical and colorectal cancer, which are run by the National Screening Service (NSS)^27,37. Universal access to cancer investigation, diagnosis and treatment is delivered by the Health Service Executive (HSE)^38,39, however, private healthcare also plays a role in the provision of cancer diagnostics and cancer treatment for those who can afford it²⁷. While the Irish HSE and the UK’s National Health Service (NHS) share structural similarities in cancer care, such as GP referral to hospitals and provision of free assessment and treatment, differences in funding models, access pathways, and referral processes mean that research priorities may differ substantially between the two jurisdictions^40,41.

1: PSP Steering group

In the JLA framework, the entire research prioritisation project—known as a “Priority Setting Partnership” (PSP)—is designed and conducted by a “PSP Steering Group”, a stakeholder group representing patients, carers and clinicians, whose meetings are chaired by a JLA adviser. Due to resource constraints, our steering group will be convened via a parallel initiative to establish a permanent stakeholder group to support primary care cancer research in Ireland⁴². While the primary care cancer research stakeholder group will have a broad membership, the research prioritisation steering group will comprise a subgroup of PPI and clinician stakeholders, and members of the research team. Reimbursement for PPI contributors will be funded through a grant from the Irish Cancer Society. This is consistent with the JLA principles that there is a “balanced inclusion of patient, carer and clinician interests” with “exclusion of non-clinician researchers from voting” and “exclusion of significant competing [i.e., corporate] interests”²⁵. Additionally, co-authors LOC and the Primary Care PPI group have given input to this protocol based on their experience of a JLA supported PSP, currently being undertaken by the HRB Primary Care Clinical Trials Network³⁶.

The main roles of the steering group will be (1) providing guidance on the selection and wording of the questions in the online survey, (2) providing guidance on its dissemination, (3) offering oversight of the processing of responses in the interim priority-setting stage, and (4) providing guidance on the running of the consensus workshop.

2: Online survey

Firstly, an online survey was developed and piloted with PPI input alongside JLA framework for specific terminology to ensure clarity, sensitivity, and overall flow. The survey administered through REDCap an electronic data software, will be conducted to identify aspects of early detection of cancer in primary care research perceived as important– Table 1^43,44.

Table 1. Online questionnaire.

Section 1 (Experience of cancer)
[1] What is your main experience of cancer?	Cancer patient / Carer to a cancer patient / Other personal experience of cancer / Doctor / Allied health professional / Researcher / Policy or advocacy work / Other professional experience of cancer
Section 2 (Research ideas)
[2] Think about someone you know who has experienced cancer (perhaps it’s you). Reflect on the time between the first signs of cancer and the diagnosis. Could their cancer have been diagnosed earlier? How? Please tell us your ideas.	[Free-text answer]
[3] Think about the role played by “primary care professionals” This means any healthcare worker in your community e.g. GPs, GP nurses, Public Health Nurses, Pharmacists, Dentists What research should we be doing to help these professionals detect cancer earlier?	[Free-text answer]
Section 3 (Basic information)
[4] Age?	Less than 20 / 20-29 / 30-39 / 40-49 / 50-59 / 60-69 / 70-79 / 80+
[5] Gender?	Male / Female / Other
[6] Do you live in the Republic of Ireland?	Yes / No
[7] Have you previously lived in the Republic of Ireland for 1 year or more, as an adult?	Yes/No
[8] Do you have experience of healthcare in the Republic of Ireland (e.g., attending a GP or Dentist)	Yes/No
As a patient, carer, clinician or policymaker, you are eligible to participate in an in-person workshop (Phase 2). In this workshop, a group of 30 stakeholders will work together to create a Top 10 list of the most important research ideas produced by this survey (Phase 1). If you are interested, please provide your email address and you will be contacted by the research team with more information. (If you are not interested, leave the box blank.)

Recruitment. Recruitment will be targeted at patients, carers, clinicians, policymakers, and academics based primarily in Ireland that self-identify as being interested in early detection of symptomatic cancer. The survey will be sent via established mailing lists, professional networks (which refer to professionals who share the same or related field scope), collaborator networks, and social media channels. Key primary care professional networks include Irish College of General Practitioners (ICGP), the Association of University Departments of General Practitioners (AGPI), and Irish General Practice Nurses Educational Association (IGPNEA) and the cancer care professional networks include the National Cancer Control Programme (NCCP), Irish Cancer Society, and Marie Keating Foundation. Through the Primary Care Research into Cancer (PRiCAN) research group’s collaborator networks, the survey will be disseminated to the ARQ research network – a network of 75 primary care practices in Irish Primary Care, and more general organisations representing vulnerable and under-represented populations—including ethnic minorities, people with intellectual or physical disabilities, and those with hearing or visual impairments—to ensure inclusive participation. Social media and informal networks will also be used to extend reach beyond traditional healthcare and academic channels, supporting broad engagement across diverse socioeconomic groups and healthcare pathway which aids in representing the Irish population.

Advertising will include a video explaining the content and aims of the research prioritisation exercise, which is compatible for multiple languages with closed captions to accommodate participants who may benefit from clear, multi-format communication. The survey period will be for 6 weeks, with an extension if required to achieve a minimum of 25–30 unique research questions, in keeping with JLA advice regarding the typical number included in the final prioritisation workshop^25,45.

Content. The survey, developed with PPI input, will collect information, via a mixture of closed and open questions on the participant’s experience of cancer and their proposed research ideas (Table 1). Questions about participant demographics are placed at the end, to confirm broad circulation of the survey.

3: Processing survey responses

The survey results to the open-ended questions will be extracted and analysed using qualitative analysis software NVivo via the following steps: (1) removal of unintelligible or inappropriate responses; (2) paraphrasing responses into a question format where needed, (3) merging of duplicate questions into a single question, and (4) removal of research questions outside the scope. This will yield a list of unique questions. Steering group members will review the list of questions to ensure they are a true reflection of initial submissions and are worded clearly.

Survey responses related to paediatric cancers, other areas of the cancer continuum (e.g., screening, treatment or survivorship), or cancer control outside of a community setting will not automatically be deemed out-of-scope. Rather, the authors will attempt to narrow the scope of the proposed research question, and only if this is unsuccessful will the survey response be excluded. Exclusions based on scope will be reported in an appendix.

4: Identifying unanswered questions

The research questions will then be checked against the existing evidence base. To expedite the process, the list will be sent to academic and clinical colleagues working in early cancer detection. If a systematic review or meta-analysis definitively answers a proposed research question, and is applicable to an Irish context, this question will be removed, given agreement of the steering group. Where uncertainty remains (as to existence of an adequate study or clinical guideline), a literature review will be conducted. Where the steering group cannot agree on the existence of research which adequately answers a research question, that question will be included. Methodology-specific quality assessment tools, such as those produced by the National Institute for Health⁴⁶, will be used if necessary.

5: Interim priority setting

It is likely that the resulting longlist of unanswered research questions remains too long to allow feasible discussion by the workshop participants (in the research prioritisation literature, 20–30 questions is typical)^25,45. Hence, JLA PSPs often utilise a process called “interim priority setting” whereby the longlist of research questions is subject to a prioritisation exercise, remotely, prior to the workshop^25,45. In our case, we will ask the already-identified workshop participants (rather than the wider public due to time constraints) to rank their top 20 questions^25,45. The questions featuring the lowest number of votes will be excluded in order to produce a shortlist of approximately 20 questions.

6: Consensus workshop

Finally, we will convene a workshop, the purpose of which is to take the 20-item shortlist produced by the interim priority setting stage and produce, via consensus exercises, a ranked “Top 10” of research priority questions for detecting cancer early.

Recruitment. Recruitment will begin during the survey phase, when respondents from the eligible stakeholder groups (patient, carer, clinician, academic, policymaker) will be invited to participate in a consensus workshop. Targeted invitations to attend the workshop will also be circulated by the same channels utilised when advertising the survey (mailing lists, professional networks, and collaborator networks). They will be provided with a participant information leaflet and a video explaining what the workshop entails. Furthermore, a short video will also be produced to promote the event and shared on social media to raise awareness. Invitations will be extended to participants who complete the survey in full and consent to be contacted for more information about the in-person workshop.

A minimum of five stakeholders will be recruited in each of three broad stakeholder groups: (1) patients and carers; (2) clinicians; (3) academics and policymakers. Enrolment will be limited to ensure that no one of these groups consists of more than 50% of the total participants. As per the approved ethics and consent documentation workshop participants must be: English-speaking, with personal or professional experience of cancer care in the Irish healthcare service, 18 years or older, and able to provide informed consent to participate. Where possible, in the scenario where the workshop is oversubscribed, in addition to achieving balance between stakeholder groups, we will seek to include a diversity of age, gender, and cancer type. Participants will be reimbursed for travel expenses.

Format. At the workshop, which will be coordinated by the research team, the participants will be divided into small groups (5–10) with at least 1–2 members from each stakeholder group, and will engage in multiple rounds of small group discussions and ranking exercises in accordance the procedures outlined in the JLA Guidebook²⁵. The workshop will culminate with a whole group review with the intention of arriving at a finalised Top 10 list.

The in-person workshop encourages the participants to voice their own beliefs regarding the relative importance of various research questions. The iterative nature of the process will allow the participants to reflect upon and integrate the opinions of others (especially those from different stakeholder groups) such that the group converges on a consensus position and a finalised Top 10 list.

Results

We will report (1) a “Top 10” list of the most important research questions in early cancer detection in primary care, as determined by the process, and (2) the number of research questions or topics considered, highlighting the numbers removed at each stage of the process.

We will describe the selection, structure and characteristics of the steering group responsible for “initiating, developing, and guiding the process of priority setting”, in accordance with REPRISE guidance. In addition, we will describe the characteristics of stakeholders involved in the research prioritisation workshop: their stakeholder group designation, their demographic characteristics, as well as their areas of interest, expertise, and institutional affiliations where appropriate.

Finally, we will also detail, in an appendix, the following: (1) a list of unanswered research questions which ranked outside of the Top 10 or were excluded by the interim priority setting; (2) a list of research questions which were proposed but considered to be already answered by a panel of academics working in the field; (3) a list of research questions which were proposed but considered to be out-of-scope by the steering group.

Dissemination

In addition to a peer-reviewed open access publication and academic conference presentations, we will also disseminate the findings to a broad range of professional networks with relevance to early cancer detection or primary care research. Moreover, we intend to promote the top ten research priorities at a public event focusing on cancer control in primary care.

The steering group will identify appropriate audiences to engage when sharing the results, such as researchers, funders, and patient and clinical communities, highlighting opportunities to contribute evidence to answer the newly identified research priorities, and opportunities to work with policymakers and clinicians to ensure findings are translated into practice.

Study status

At the time of original submission, planning of the online survey was underway, but the survey had not yet been released to the public. At the time of peer review resubmission, the online survey, developed with PPI and a pilot phase input, has been released to the public. During the initial submission, the survey was still in the planning stage and not yet available. Following refinement to improve clarity, accessibility, and inclusivity through supplemental materials, the survey is live, with data collection ongoing; however, responses have not yet been processed.

Conclusion and implications

By this research prioritisation exercise, we will produce a consensus statement on the most important research questions pertaining to early cancer detection in primary care in Ireland, based meaningfully and transparently on the values and experience of patients, carers and clinicians. This will be used to encourage funders, researchers, and industry to focus their attention and resources on issues of importance to these groups.

Ethics

Ethical approval granted by the RCSI REC (Ethics Review Code: 202210025).

Data availability

No data are associated with this article.

Faculty Opinions recommended

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Version 2

VERSION 2 PUBLISHED 13 Sep 2023

Author details Author details

Benjamin M. Jacob
Roles: Conceptualization, Methodology, Project Administration, Visualization, Writing – Original Draft Preparation, Writing – Review & Editing

Laura O'Connor
Roles: Methodology, Writing – Review & Editing

Barbara Clyne
Roles: Writing – Review & Editing

Heather Burns
Roles: Writing – Review & Editing

Surour Alneyadi
Roles: Writing – Review & Editing

Richard D Neal
Roles: Writing – Review & Editing

Patrick Redmond
Roles: Conceptualization, Funding Acquisition, Methodology, Project Administration, Supervision, Writing – Original Draft Preparation, Writing – Review & Editing

Competing interests

No competing interests were disclosed.

Grant information

Part-funded by the Irish Cancer Society Translational Cancer Research Networking Award (TCRNA22RED).
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Article Versions (2)

version 2

Revised

Published: 11 Nov 2025, 6:52

https://doi.org/10.12688/hrbopenres.13749.2

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Published: 13 Sep 2023, 6:52

https://doi.org/10.12688/hrbopenres.13749.1

© 2025 Jacob BM 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.

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Jacob BM, O'Connor L, Clyne B et al. Early detection of symptomatic cancer in primary care in Ireland: a protocol for a research prioritisation exercise [version 2; peer review: 1 approved, 2 approved with reservations]. HRB Open Res 2025, 6:52 (https://doi.org/10.12688/hrbopenres.13749.2)

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Key to Reviewer Statuses VIEW HIDE

ApprovedThe paper is scientifically sound in its current form and only minor, if any, improvements are suggested

Approved with reservations A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit.

Not approvedFundamental flaws in the paper seriously undermine the findings and conclusions

Version 2

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PUBLISHED 11 Nov 2025

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Reviewer Report 12 Nov 2025

Yasemin Hirst, Applied Health Research Hub,, University of Central Lancashire, Preston, England, UK

Approved

https://doi.org/10.21956/hrbopenres.15726.r51372

Thank you for the revised protocol. Happy ... Continue reading

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Version 1

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PUBLISHED 13 Sep 2023

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Reviewer Report 19 Sep 2024

Yasemin Hirst, Applied Health Research Hub,, University of Central Lancashire, Preston, England, UK

Approved with Reservations

https://doi.org/10.21956/hrbopenres.15040.r37176

Many thanks for the opportunity to review this protocol paper that aims to carry out a research prioritisation exercise following the JLA framework in Ireland.

It is a well-written protocol that provides a broad detail about the healthcare context in Ireland and cancer outcomes.

It would be great, if data exists, to include some details about the inequalities in cancer diagnosis in Ireland specific to routes to diagnosis and primary care. If this data is not available, perhaps it is important to highlight why it is important to investigate symptomatic primary care pathway. I think what is missing here is a summary of what we know vs what we don't know to build the need for the priority setting.

The paper also highlights the differences between the UK and Ireland healthcare system, are there differences for suspected cancer referral pathways too?

Methodologically, my main query relates to the inclusion criteria of respondents and in fact exclusion of those who are often under-represented in health research.I would encourage the authors to either justify the exclusion or ensure that they have representation from vulnerable communities e.g. d/Deaf, learning disabilities, physical disabilities, ethnic minorities, refugees, people with mental illness etc. Inclusion of these populations would be important to challenge whether the priorities are not widening inequalities because they do not capture inequities in healthcare. Capturing a detailed sociodemographic data throughout the project would help with the generalisability as well as minimise bias.

Q2 in the online questionnaire, I believe this survey was developed with the PPI input, however I have some concerns about the wording and potential distress it may cause for some people especially if the cancers may have been asymptomatic for a long period of time and resulted a late stage diagnosis. Perhaps it would be better to ask people what could be done to improve cancer diagnosis after an individual presents in primary care with symptoms that could be a sign of cancer. This gives better focus on the primary care interval and removes any guilt or concerns people might have about the patient interval before the diagnosis which might also relate to delays in presentation. The main reason I'm highlighting this because people are asked to reflect on their journey.

My personal opinion, the word "detect" indicates that the individual has been exposed to a diagnostic tool or an investigation. The words early detection and diagnosis are used interchangeably in the context of cancer research and new/media, I would encourage the authors to define these carefully and follow expert consensus. I do not agree with the statement re early detection is the first diagnosis of cancer. It would be good to have a reference to their statement and it might be good to define it as part of their consensus. Cancer Research UK might have a well-structured definition.

Minor amendment, PIS is referred to as patient information sheet, this should be revised as participant information sheet.

Is the rationale for, and objectives of, the study clearly described?

Yes
Is the study design appropriate for the research question?

Yes
Are sufficient details of the methods provided to allow replication by others?

Yes
Are the datasets clearly presented in a useable and accessible format?

Not applicable

Competing Interests: No competing interests were disclosed.

Reviewer Expertise: Cancer prevention and early diagnosis, population health, mixed methods research

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above.

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Author Response 14 Nov 2025

Benjamin Jacob, Department of General Practice, RCSI University of Medicine and Health Sciences, Dublin, Ireland

14 Nov 2025

Author Response
Thank you very much for your thoughtful and sensitive feedback on our protocol. We deeply appreciate the time you have taken to engage with this work, and we value the opportunity ... Continue reading
Thank you very much for your thoughtful and sensitive feedback on our protocol. We deeply appreciate the time you have taken to engage with this work, and we value the opportunity to respond to the important questions you have raised. Below, we provide clarification and detail on each of your points, and have also updated our protocol accordingly.

In response to your question about existing data and inequalities, we have drawn on several key sources, including the European Cancer Inequalities Registry’s Country Cancer Profile 2023 and the Cancer Inequalities in Ireland: National Cancer Strategy 2017–2026. These data show that patients from deprived populations in Ireland face a 40% higher five-year cancer mortality rate. Inequalities are also linked to geography, education, and screening participation. Evidence for marginalized and migrant populations remains limited, but existing literature highlights barriers such as language, cultural differences, and lack of awareness that may hinder outcomes. Our introduction has been updated to highlight these inequalities. In addition, Ireland's National Cancer Strategy 2017–2026 specifically acknowledges these gaps and outlines objectives to reduce health inequalities through targeted interventions, inclusive policies, and sustained investment, with the aim of achieving equitable cancer care across all populations by 2026.

You asked about differences in suspected cancer referral pathways between the UK and Ireland. To address this, we have expanded the healthcare context section of our protocol as follows: “The Irish Health Service Executive (HSE) and the UK’s National Health Service (NHS) share similarities in cancer care structures, including GP referral to hospitals and provision of free assessment and treatment. However, differences in funding models, access pathways, and referral processes mean that research priorities can diverge significantly.”

For a more detailed example: In the UK, patients suspected of having cancer can be referred through the “two-week wait” pathway, which ensures specialist review within 14 days and treatment initiation within 62 days. This system benefits from standardized referral pathways, electronic referrals, and wide regional consistency (information can be found at Cancer Research UK and NHS). Whereas in Ireland, patients are typically referred to Rapid Access Clinics (RACs) for cancers such as lung and prostate. Access routes vary, and waiting times can differ regionally. Ireland currently has nine designated cancer centres and eight RACs (HSE).

In response to methodology and inclusion, we recognise the importance of inclusivity in health research, particularly for groups that are often under-represented. In designing this study, we aimed to reach diverse communities through both the survey and workshops.

Targeted dissemination: We engaged community organisations and advocacy groups representing people from ethnic minority backgrounds, refugees, individuals with mental illness, those with physical or learning disabilities, and those with visual or hearing impairments.

Accessible materials: We produced closed-captioned videos in multiple languages, easy-to-read newsletters, flyers, explainer videos, and step-by-step guides. These were additionally distributed through cancer organisations across all counties in Ireland (2–3 per county).

Wider reach: We also used social media (X, LinkedIn, Instagram) to extend participation beyond academic and clinical circles.

Our inclusion criteria were deliberately broad to capture a range of lived experiences. Survey monitoring has been ongoing to ensure wide representation, reduce bias, and strengthen generalisability. We acknowledge, however, that limitations exist. For workshops, our ethics approval and available resources did not allow us to provide live interpreters. Following James Lind Alliance guidance, our initial plan involves in-person workshops. We are committed to transparently reporting who we did and did not reach, and to highlighting where future work is needed to address inequities in research participation. Thank you for highlighting the importance of sensitivity in survey design. We want to reassure you that it was not our intention to cause distress or guilt. To minimise this risk, the survey wording was reviewed and refined with input from a Patient and Public Involvement (PPI) group comprising people with lived experience of cancer. Then, a pilot phase was conducted with participants who had received a cancer diagnosis; all approved the terminology and phrasing used. The survey’s purpose is to provide individuals affected by cancer with an opportunity to reflect on their experiences in a respectful and supportive way. We are grateful for your reminder of the need for careful consideration of language, and we have ensured this remains a central focus throughout.

By “early detection we mean patient that seek intervention when they experience symptoms for the first time and get checked by their primary care physicians. While some academic groups use the term early detection to encompass both screening and symptomatic detection, in this study we focus solely on the latter. The terminology has been updated in our protocol. Lastly, thank you for your kind edit we have fixed PIS to represent participant information sheet.
Thank you very much for your thoughtful and sensitive feedback on our protocol. We deeply appreciate the time you have taken to engage with this work, and we value the opportunity to respond to the important questions you have raised. Below, we provide clarification and detail on each of your points, and have also updated our protocol accordingly.

In response to your question about existing data and inequalities, we have drawn on several key sources, including the European Cancer Inequalities Registry’s Country Cancer Profile 2023 and the Cancer Inequalities in Ireland: National Cancer Strategy 2017–2026. These data show that patients from deprived populations in Ireland face a 40% higher five-year cancer mortality rate. Inequalities are also linked to geography, education, and screening participation. Evidence for marginalized and migrant populations remains limited, but existing literature highlights barriers such as language, cultural differences, and lack of awareness that may hinder outcomes. Our introduction has been updated to highlight these inequalities. In addition, Ireland's National Cancer Strategy 2017–2026 specifically acknowledges these gaps and outlines objectives to reduce health inequalities through targeted interventions, inclusive policies, and sustained investment, with the aim of achieving equitable cancer care across all populations by 2026.

You asked about differences in suspected cancer referral pathways between the UK and Ireland. To address this, we have expanded the healthcare context section of our protocol as follows: “The Irish Health Service Executive (HSE) and the UK’s National Health Service (NHS) share similarities in cancer care structures, including GP referral to hospitals and provision of free assessment and treatment. However, differences in funding models, access pathways, and referral processes mean that research priorities can diverge significantly.”

For a more detailed example: In the UK, patients suspected of having cancer can be referred through the “two-week wait” pathway, which ensures specialist review within 14 days and treatment initiation within 62 days. This system benefits from standardized referral pathways, electronic referrals, and wide regional consistency (information can be found at Cancer Research UK and NHS). Whereas in Ireland, patients are typically referred to Rapid Access Clinics (RACs) for cancers such as lung and prostate. Access routes vary, and waiting times can differ regionally. Ireland currently has nine designated cancer centres and eight RACs (HSE).

In response to methodology and inclusion, we recognise the importance of inclusivity in health research, particularly for groups that are often under-represented. In designing this study, we aimed to reach diverse communities through both the survey and workshops.

Targeted dissemination: We engaged community organisations and advocacy groups representing people from ethnic minority backgrounds, refugees, individuals with mental illness, those with physical or learning disabilities, and those with visual or hearing impairments.

Accessible materials: We produced closed-captioned videos in multiple languages, easy-to-read newsletters, flyers, explainer videos, and step-by-step guides. These were additionally distributed through cancer organisations across all counties in Ireland (2–3 per county).

Wider reach: We also used social media (X, LinkedIn, Instagram) to extend participation beyond academic and clinical circles.

Our inclusion criteria were deliberately broad to capture a range of lived experiences. Survey monitoring has been ongoing to ensure wide representation, reduce bias, and strengthen generalisability. We acknowledge, however, that limitations exist. For workshops, our ethics approval and available resources did not allow us to provide live interpreters. Following James Lind Alliance guidance, our initial plan involves in-person workshops. We are committed to transparently reporting who we did and did not reach, and to highlighting where future work is needed to address inequities in research participation. Thank you for highlighting the importance of sensitivity in survey design. We want to reassure you that it was not our intention to cause distress or guilt. To minimise this risk, the survey wording was reviewed and refined with input from a Patient and Public Involvement (PPI) group comprising people with lived experience of cancer. Then, a pilot phase was conducted with participants who had received a cancer diagnosis; all approved the terminology and phrasing used. The survey’s purpose is to provide individuals affected by cancer with an opportunity to reflect on their experiences in a respectful and supportive way. We are grateful for your reminder of the need for careful consideration of language, and we have ensured this remains a central focus throughout.

By “early detection we mean patient that seek intervention when they experience symptoms for the first time and get checked by their primary care physicians. While some academic groups use the term early detection to encompass both screening and symptomatic detection, in this study we focus solely on the latter. The terminology has been updated in our protocol. Lastly, thank you for your kind edit we have fixed PIS to represent participant information sheet.
Competing Interests: None declared. Close
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COMMENTS ON THIS REPORT

Author Response 14 Nov 2025

Benjamin Jacob, Department of General Practice, RCSI University of Medicine and Health Sciences, Dublin, Ireland

14 Nov 2025

Author Response
Thank you very much for your thoughtful and sensitive feedback on our protocol. We deeply appreciate the time you have taken to engage with this work, and we value the opportunity ... Continue reading
Thank you very much for your thoughtful and sensitive feedback on our protocol. We deeply appreciate the time you have taken to engage with this work, and we value the opportunity to respond to the important questions you have raised. Below, we provide clarification and detail on each of your points, and have also updated our protocol accordingly.

In response to your question about existing data and inequalities, we have drawn on several key sources, including the European Cancer Inequalities Registry’s Country Cancer Profile 2023 and the Cancer Inequalities in Ireland: National Cancer Strategy 2017–2026. These data show that patients from deprived populations in Ireland face a 40% higher five-year cancer mortality rate. Inequalities are also linked to geography, education, and screening participation. Evidence for marginalized and migrant populations remains limited, but existing literature highlights barriers such as language, cultural differences, and lack of awareness that may hinder outcomes. Our introduction has been updated to highlight these inequalities. In addition, Ireland's National Cancer Strategy 2017–2026 specifically acknowledges these gaps and outlines objectives to reduce health inequalities through targeted interventions, inclusive policies, and sustained investment, with the aim of achieving equitable cancer care across all populations by 2026.

You asked about differences in suspected cancer referral pathways between the UK and Ireland. To address this, we have expanded the healthcare context section of our protocol as follows: “The Irish Health Service Executive (HSE) and the UK’s National Health Service (NHS) share similarities in cancer care structures, including GP referral to hospitals and provision of free assessment and treatment. However, differences in funding models, access pathways, and referral processes mean that research priorities can diverge significantly.”

For a more detailed example: In the UK, patients suspected of having cancer can be referred through the “two-week wait” pathway, which ensures specialist review within 14 days and treatment initiation within 62 days. This system benefits from standardized referral pathways, electronic referrals, and wide regional consistency (information can be found at Cancer Research UK and NHS). Whereas in Ireland, patients are typically referred to Rapid Access Clinics (RACs) for cancers such as lung and prostate. Access routes vary, and waiting times can differ regionally. Ireland currently has nine designated cancer centres and eight RACs (HSE).

In response to methodology and inclusion, we recognise the importance of inclusivity in health research, particularly for groups that are often under-represented. In designing this study, we aimed to reach diverse communities through both the survey and workshops.

Targeted dissemination: We engaged community organisations and advocacy groups representing people from ethnic minority backgrounds, refugees, individuals with mental illness, those with physical or learning disabilities, and those with visual or hearing impairments.

Accessible materials: We produced closed-captioned videos in multiple languages, easy-to-read newsletters, flyers, explainer videos, and step-by-step guides. These were additionally distributed through cancer organisations across all counties in Ireland (2–3 per county).

Wider reach: We also used social media (X, LinkedIn, Instagram) to extend participation beyond academic and clinical circles.

Our inclusion criteria were deliberately broad to capture a range of lived experiences. Survey monitoring has been ongoing to ensure wide representation, reduce bias, and strengthen generalisability. We acknowledge, however, that limitations exist. For workshops, our ethics approval and available resources did not allow us to provide live interpreters. Following James Lind Alliance guidance, our initial plan involves in-person workshops. We are committed to transparently reporting who we did and did not reach, and to highlighting where future work is needed to address inequities in research participation. Thank you for highlighting the importance of sensitivity in survey design. We want to reassure you that it was not our intention to cause distress or guilt. To minimise this risk, the survey wording was reviewed and refined with input from a Patient and Public Involvement (PPI) group comprising people with lived experience of cancer. Then, a pilot phase was conducted with participants who had received a cancer diagnosis; all approved the terminology and phrasing used. The survey’s purpose is to provide individuals affected by cancer with an opportunity to reflect on their experiences in a respectful and supportive way. We are grateful for your reminder of the need for careful consideration of language, and we have ensured this remains a central focus throughout.

By “early detection we mean patient that seek intervention when they experience symptoms for the first time and get checked by their primary care physicians. While some academic groups use the term early detection to encompass both screening and symptomatic detection, in this study we focus solely on the latter. The terminology has been updated in our protocol. Lastly, thank you for your kind edit we have fixed PIS to represent participant information sheet.
Thank you very much for your thoughtful and sensitive feedback on our protocol. We deeply appreciate the time you have taken to engage with this work, and we value the opportunity to respond to the important questions you have raised. Below, we provide clarification and detail on each of your points, and have also updated our protocol accordingly.

In response to your question about existing data and inequalities, we have drawn on several key sources, including the European Cancer Inequalities Registry’s Country Cancer Profile 2023 and the Cancer Inequalities in Ireland: National Cancer Strategy 2017–2026. These data show that patients from deprived populations in Ireland face a 40% higher five-year cancer mortality rate. Inequalities are also linked to geography, education, and screening participation. Evidence for marginalized and migrant populations remains limited, but existing literature highlights barriers such as language, cultural differences, and lack of awareness that may hinder outcomes. Our introduction has been updated to highlight these inequalities. In addition, Ireland's National Cancer Strategy 2017–2026 specifically acknowledges these gaps and outlines objectives to reduce health inequalities through targeted interventions, inclusive policies, and sustained investment, with the aim of achieving equitable cancer care across all populations by 2026.

You asked about differences in suspected cancer referral pathways between the UK and Ireland. To address this, we have expanded the healthcare context section of our protocol as follows: “The Irish Health Service Executive (HSE) and the UK’s National Health Service (NHS) share similarities in cancer care structures, including GP referral to hospitals and provision of free assessment and treatment. However, differences in funding models, access pathways, and referral processes mean that research priorities can diverge significantly.”

For a more detailed example: In the UK, patients suspected of having cancer can be referred through the “two-week wait” pathway, which ensures specialist review within 14 days and treatment initiation within 62 days. This system benefits from standardized referral pathways, electronic referrals, and wide regional consistency (information can be found at Cancer Research UK and NHS). Whereas in Ireland, patients are typically referred to Rapid Access Clinics (RACs) for cancers such as lung and prostate. Access routes vary, and waiting times can differ regionally. Ireland currently has nine designated cancer centres and eight RACs (HSE).

In response to methodology and inclusion, we recognise the importance of inclusivity in health research, particularly for groups that are often under-represented. In designing this study, we aimed to reach diverse communities through both the survey and workshops.

Targeted dissemination: We engaged community organisations and advocacy groups representing people from ethnic minority backgrounds, refugees, individuals with mental illness, those with physical or learning disabilities, and those with visual or hearing impairments.

Accessible materials: We produced closed-captioned videos in multiple languages, easy-to-read newsletters, flyers, explainer videos, and step-by-step guides. These were additionally distributed through cancer organisations across all counties in Ireland (2–3 per county).

Wider reach: We also used social media (X, LinkedIn, Instagram) to extend participation beyond academic and clinical circles.

Our inclusion criteria were deliberately broad to capture a range of lived experiences. Survey monitoring has been ongoing to ensure wide representation, reduce bias, and strengthen generalisability. We acknowledge, however, that limitations exist. For workshops, our ethics approval and available resources did not allow us to provide live interpreters. Following James Lind Alliance guidance, our initial plan involves in-person workshops. We are committed to transparently reporting who we did and did not reach, and to highlighting where future work is needed to address inequities in research participation. Thank you for highlighting the importance of sensitivity in survey design. We want to reassure you that it was not our intention to cause distress or guilt. To minimise this risk, the survey wording was reviewed and refined with input from a Patient and Public Involvement (PPI) group comprising people with lived experience of cancer. Then, a pilot phase was conducted with participants who had received a cancer diagnosis; all approved the terminology and phrasing used. The survey’s purpose is to provide individuals affected by cancer with an opportunity to reflect on their experiences in a respectful and supportive way. We are grateful for your reminder of the need for careful consideration of language, and we have ensured this remains a central focus throughout.

By “early detection we mean patient that seek intervention when they experience symptoms for the first time and get checked by their primary care physicians. While some academic groups use the term early detection to encompass both screening and symptomatic detection, in this study we focus solely on the latter. The terminology has been updated in our protocol. Lastly, thank you for your kind edit we have fixed PIS to represent participant information sheet.
Competing Interests: None declared. Close
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Reviewer Report 29 Dec 2023

Xiaoyu Zong, School of Medicine in St. Louis, Washington University, Seatle, Washington, USA

Approved with Reservations

https://doi.org/10.21956/hrbopenres.15040.r37439

Jacob et al. aimed to reach a consensus on the prioritization of research regarding cancer detection in primary care with the JLA framework. The author gathered information from key stakeholders, and the protocol was well-structured. By filling the gaps in cancer detection research, the protocol would provide some ideas for the relevant intervention conducted in primary care settings afterward in Ireland.

Some primary concerns:

Rationale - The rationale focused on cancer detection in primary care was underfunded. The author used the situation in the UK as an example and referenced several instances in other countries. However, the benefits, such as the effectiveness and feasibility of studying cancer detection in primary care, and patient outcomes, could be further elaborated.

Scope - Why does the scope emphasize symptomatic adult cancer in primary care? Patients are more likely to seek treatment from primary care when they experience symptoms rather than for preventative purposes.

Online survey - What tools are you planning to use to process the Online questionnaire Section 2 open-ended questions?

Is the rationale for, and objectives of, the study clearly described?

Yes
Is the study design appropriate for the research question?

Yes
Are sufficient details of the methods provided to allow replication by others?

Partly
Are the datasets clearly presented in a useable and accessible format?

Not applicable

Competing Interests: No competing interests were disclosed.

Reviewer Expertise: Cancer risk, cancer survivor, cancer early detection

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Author Response 14 Nov 2025

Benjamin Jacob, Department of General Practice, RCSI University of Medicine and Health Sciences, Dublin, Ireland

14 Nov 2025

Author Response

Thank you very much for providing thoughtful feedback and constructive comments.

Starting with the rationale, we provide a broad overview of our research goal which simply is  to engage patients, caregivers, stakeholders, academics, and clinicians in identifying and ... Continue reading Thank you very much for providing thoughtful feedback and constructive comments.

Starting with the rationale, we provide a broad overview of our research goal which simply is  to engage patients, caregivers, stakeholders, academics, and clinicians in identifying and prioritising questions for future research in early detection of symptomatic cancer in primary care in Ireland. Rather than priming participants with hard facts or predetermined priorities, this approach encourages reflection on personal experiences and perspectives, allowing participants to generate questions that address feasibility, potential benefits, and patient outcomes. Through this process, participants collaboratively contribute to a finalised “Top 10” list of research priorities that is meaningful and relevant to all involved, as suggested by previous James Lind Alliance (JLA) prioritisation exercises.

Research focused on early detection in primary care is particularly important because this stage of the cancer continuum is critical to patient outcomes. Early detection improves survival, reduces treatment-related costs and complications, and enhances system efficiency. Primary care is central to this process, as most patients first present with symptoms to GPs or other community-based clinicians. Interventions in this setting can target both patient behaviour (e.g., recognising symptoms and presenting early) and clinician behaviour (e.g., improving diagnostic processes), offering the potential for substantial improvements in outcomes.

Furthermore, factors influencing early diagnosis include disease-related, patient-related, healthcare professional (HCP), and health system factors, as outlined in the HSE’s National Cancer Control Programme Early Diagnosis of Symptomatic Cancer Plan 2022–2025. Approximately 85% of cancer patients present with symptomatic disease, yet evidence from the UK and Denmark shows that up to 50% of patients with atypical or non-specific symptoms may not trigger urgent referral. This highlights the need to equip HCPs with tools and knowledge to identify early signs. Expanding understanding of disease presentation, combined with national health literacy initiatives, can further support early detection and screening engagement.

Despite the clear importance of early cancer detection, research in primary care remains underfunded in Ireland. While the NCCP outlines plans to improve cancer care, a prioritisation exercise grounded in the experiences of Irish patients and clinicians is uniquely valuable. Capturing participants’ reflections, experiences, and priorities ensures that the resulting Top 10 research questions are both evidence-informed and rooted in the lived experience of those most closely involved in cancer care.
As for the scope, the study specifically targets symptomatic adult cancer in primary care because patients are more likely to present with symptoms rather than for preventative care or screening which directly relates to the asymptomatic patient and are carried out by other entities. This focus addresses a recognised gap in research: early detection in primary care, which is distinct from cancer prevention or screening and is under-studied internationally and in Ireland, making this population and setting a priority for consensus-driven research prioritisation. We have updated the introduction to highlight the importance of symptomatic cancer and primary care role, in addition we have defined the terminology in the scope.

In response to your final question regarding the survey, it includes a mix of multiple-choice and open-ended questions. The multiple-choice questions ensure that responses reflect a representative sample of the Irish population and demographics. Open-ended questions, will be analysed using qualitative software (NVivo) to systematically code and categorise responses, enabling thematic analysis while maintaining transparency.
Thank you very much for providing thoughtful feedback and constructive comments.

Starting with the rationale, we provide a broad overview of our research goal which simply is  to engage patients, caregivers, stakeholders, academics, and clinicians in identifying and prioritising questions for future research in early detection of symptomatic cancer in primary care in Ireland. Rather than priming participants with hard facts or predetermined priorities, this approach encourages reflection on personal experiences and perspectives, allowing participants to generate questions that address feasibility, potential benefits, and patient outcomes. Through this process, participants collaboratively contribute to a finalised “Top 10” list of research priorities that is meaningful and relevant to all involved, as suggested by previous James Lind Alliance (JLA) prioritisation exercises.

Research focused on early detection in primary care is particularly important because this stage of the cancer continuum is critical to patient outcomes. Early detection improves survival, reduces treatment-related costs and complications, and enhances system efficiency. Primary care is central to this process, as most patients first present with symptoms to GPs or other community-based clinicians. Interventions in this setting can target both patient behaviour (e.g., recognising symptoms and presenting early) and clinician behaviour (e.g., improving diagnostic processes), offering the potential for substantial improvements in outcomes.

Furthermore, factors influencing early diagnosis include disease-related, patient-related, healthcare professional (HCP), and health system factors, as outlined in the HSE’s National Cancer Control Programme Early Diagnosis of Symptomatic Cancer Plan 2022–2025. Approximately 85% of cancer patients present with symptomatic disease, yet evidence from the UK and Denmark shows that up to 50% of patients with atypical or non-specific symptoms may not trigger urgent referral. This highlights the need to equip HCPs with tools and knowledge to identify early signs. Expanding understanding of disease presentation, combined with national health literacy initiatives, can further support early detection and screening engagement.

Despite the clear importance of early cancer detection, research in primary care remains underfunded in Ireland. While the NCCP outlines plans to improve cancer care, a prioritisation exercise grounded in the experiences of Irish patients and clinicians is uniquely valuable. Capturing participants’ reflections, experiences, and priorities ensures that the resulting Top 10 research questions are both evidence-informed and rooted in the lived experience of those most closely involved in cancer care.
As for the scope, the study specifically targets symptomatic adult cancer in primary care because patients are more likely to present with symptoms rather than for preventative care or screening which directly relates to the asymptomatic patient and are carried out by other entities. This focus addresses a recognised gap in research: early detection in primary care, which is distinct from cancer prevention or screening and is under-studied internationally and in Ireland, making this population and setting a priority for consensus-driven research prioritisation. We have updated the introduction to highlight the importance of symptomatic cancer and primary care role, in addition we have defined the terminology in the scope.

In response to your final question regarding the survey, it includes a mix of multiple-choice and open-ended questions. The multiple-choice questions ensure that responses reflect a representative sample of the Irish population and demographics. Open-ended questions, will be analysed using qualitative software (NVivo) to systematically code and categorise responses, enabling thematic analysis while maintaining transparency.
Competing Interests: None declared. Close
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Respond or Comment

COMMENTS ON THIS REPORT

Author Response 14 Nov 2025

Benjamin Jacob, Department of General Practice, RCSI University of Medicine and Health Sciences, Dublin, Ireland

14 Nov 2025

Author Response

Thank you very much for providing thoughtful feedback and constructive comments.

Starting with the rationale, we provide a broad overview of our research goal which simply is  to engage patients, caregivers, stakeholders, academics, and clinicians in identifying and ... Continue reading Thank you very much for providing thoughtful feedback and constructive comments.

Starting with the rationale, we provide a broad overview of our research goal which simply is  to engage patients, caregivers, stakeholders, academics, and clinicians in identifying and prioritising questions for future research in early detection of symptomatic cancer in primary care in Ireland. Rather than priming participants with hard facts or predetermined priorities, this approach encourages reflection on personal experiences and perspectives, allowing participants to generate questions that address feasibility, potential benefits, and patient outcomes. Through this process, participants collaboratively contribute to a finalised “Top 10” list of research priorities that is meaningful and relevant to all involved, as suggested by previous James Lind Alliance (JLA) prioritisation exercises.

Research focused on early detection in primary care is particularly important because this stage of the cancer continuum is critical to patient outcomes. Early detection improves survival, reduces treatment-related costs and complications, and enhances system efficiency. Primary care is central to this process, as most patients first present with symptoms to GPs or other community-based clinicians. Interventions in this setting can target both patient behaviour (e.g., recognising symptoms and presenting early) and clinician behaviour (e.g., improving diagnostic processes), offering the potential for substantial improvements in outcomes.

Furthermore, factors influencing early diagnosis include disease-related, patient-related, healthcare professional (HCP), and health system factors, as outlined in the HSE’s National Cancer Control Programme Early Diagnosis of Symptomatic Cancer Plan 2022–2025. Approximately 85% of cancer patients present with symptomatic disease, yet evidence from the UK and Denmark shows that up to 50% of patients with atypical or non-specific symptoms may not trigger urgent referral. This highlights the need to equip HCPs with tools and knowledge to identify early signs. Expanding understanding of disease presentation, combined with national health literacy initiatives, can further support early detection and screening engagement.

Despite the clear importance of early cancer detection, research in primary care remains underfunded in Ireland. While the NCCP outlines plans to improve cancer care, a prioritisation exercise grounded in the experiences of Irish patients and clinicians is uniquely valuable. Capturing participants’ reflections, experiences, and priorities ensures that the resulting Top 10 research questions are both evidence-informed and rooted in the lived experience of those most closely involved in cancer care.
As for the scope, the study specifically targets symptomatic adult cancer in primary care because patients are more likely to present with symptoms rather than for preventative care or screening which directly relates to the asymptomatic patient and are carried out by other entities. This focus addresses a recognised gap in research: early detection in primary care, which is distinct from cancer prevention or screening and is under-studied internationally and in Ireland, making this population and setting a priority for consensus-driven research prioritisation. We have updated the introduction to highlight the importance of symptomatic cancer and primary care role, in addition we have defined the terminology in the scope.

In response to your final question regarding the survey, it includes a mix of multiple-choice and open-ended questions. The multiple-choice questions ensure that responses reflect a representative sample of the Irish population and demographics. Open-ended questions, will be analysed using qualitative software (NVivo) to systematically code and categorise responses, enabling thematic analysis while maintaining transparency.
Thank you very much for providing thoughtful feedback and constructive comments.

Starting with the rationale, we provide a broad overview of our research goal which simply is  to engage patients, caregivers, stakeholders, academics, and clinicians in identifying and prioritising questions for future research in early detection of symptomatic cancer in primary care in Ireland. Rather than priming participants with hard facts or predetermined priorities, this approach encourages reflection on personal experiences and perspectives, allowing participants to generate questions that address feasibility, potential benefits, and patient outcomes. Through this process, participants collaboratively contribute to a finalised “Top 10” list of research priorities that is meaningful and relevant to all involved, as suggested by previous James Lind Alliance (JLA) prioritisation exercises.

Research focused on early detection in primary care is particularly important because this stage of the cancer continuum is critical to patient outcomes. Early detection improves survival, reduces treatment-related costs and complications, and enhances system efficiency. Primary care is central to this process, as most patients first present with symptoms to GPs or other community-based clinicians. Interventions in this setting can target both patient behaviour (e.g., recognising symptoms and presenting early) and clinician behaviour (e.g., improving diagnostic processes), offering the potential for substantial improvements in outcomes.

Furthermore, factors influencing early diagnosis include disease-related, patient-related, healthcare professional (HCP), and health system factors, as outlined in the HSE’s National Cancer Control Programme Early Diagnosis of Symptomatic Cancer Plan 2022–2025. Approximately 85% of cancer patients present with symptomatic disease, yet evidence from the UK and Denmark shows that up to 50% of patients with atypical or non-specific symptoms may not trigger urgent referral. This highlights the need to equip HCPs with tools and knowledge to identify early signs. Expanding understanding of disease presentation, combined with national health literacy initiatives, can further support early detection and screening engagement.

Despite the clear importance of early cancer detection, research in primary care remains underfunded in Ireland. While the NCCP outlines plans to improve cancer care, a prioritisation exercise grounded in the experiences of Irish patients and clinicians is uniquely valuable. Capturing participants’ reflections, experiences, and priorities ensures that the resulting Top 10 research questions are both evidence-informed and rooted in the lived experience of those most closely involved in cancer care.
As for the scope, the study specifically targets symptomatic adult cancer in primary care because patients are more likely to present with symptoms rather than for preventative care or screening which directly relates to the asymptomatic patient and are carried out by other entities. This focus addresses a recognised gap in research: early detection in primary care, which is distinct from cancer prevention or screening and is under-studied internationally and in Ireland, making this population and setting a priority for consensus-driven research prioritisation. We have updated the introduction to highlight the importance of symptomatic cancer and primary care role, in addition we have defined the terminology in the scope.

In response to your final question regarding the survey, it includes a mix of multiple-choice and open-ended questions. The multiple-choice questions ensure that responses reflect a representative sample of the Irish population and demographics. Open-ended questions, will be analysed using qualitative software (NVivo) to systematically code and categorise responses, enabling thematic analysis while maintaining transparency.
Competing Interests: None declared. Close
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Reviewer Report 09 Nov 2023

Kevin Monahan, St Mark’s Hospital, Imperial College London, London, England, UK

Approved with Reservations

https://doi.org/10.21956/hrbopenres.15040.r36808

This is a well designed study protocol which will provide a useful strategic perspective on the role of early detection of cancer in the Irish primary care setting. I have a couple of minor queries:

This is a well designed study protocol which will provide a useful strategic perspective on the role of early detection of cancer in the Irish primary care setting. I have a couple of minor queries:

Why select 'early detection' and not also 'prevention' of cancer?
Will clinicians and academics be drawn from primary care and other care providers also? It may be helpful to understand a little more about professional representation and how it will be identified and appropriate i.e. what is meant by 'professional networks'?

Is the rationale for, and objectives of, the study clearly described?

Yes
Is the study design appropriate for the research question?

Yes
Are sufficient details of the methods provided to allow replication by others?

Yes
Are the datasets clearly presented in a useable and accessible format?

Yes

Competing Interests: No competing interests were disclosed.

Reviewer Expertise: Early detection and prevention of cancer

CITE

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Author Response 14 Nov 2025

Benjamin Jacob, Department of General Practice, RCSI University of Medicine and Health Sciences, Dublin, Ireland

14 Nov 2025

Author Response
Thank you for reading the protocol and providing feedback, we appreciate the time spent on reading our protocol. With regards to your first question, the pre-diagnostic cancer continuum comprises three recognised stages: prevention, screening (in asymptomatic individuals), and early detection (in symptomatic individuals). While ... Continue reading
Thank you for reading the protocol and providing feedback, we appreciate the time spent on reading our protocol. With regards to your first question, the pre-diagnostic cancer continuum comprises three recognised stages: prevention, screening (in asymptomatic individuals), and early detection (in symptomatic individuals). While primary care contributes to all three, this study deliberately focuses on early detection in symptomatic patients for two key reasons:

Greater complexity and dual responsibility- Improvements in prevention and Screening are largely driven by patient behaviour change (i.e. lifestyle advice or screening uptake), whereas early detection requires both patient action and clinician decision-making. Primary care settings are usually the first-place patients go to when they feel unwell and present with symptoms, sometimes these symptoms are early signs of cancer, while clinicians must interpret often non-specific signs and decide when to investigate or refer.

Evidence gap and clinical urgency- While prevention (i.e. lifestyle advice, smoking cessation, vaccinations, exercise) and Screening (i.e. bowel, breast, cervical screening programmes) are well-established in primary care in terms of education guidance, screening are run by national programs, like the National Screening Services (NSS). If diagnosed with cancer during these screenings there is a defined patient pathway, and extensive public health infrastructure, Early Detection lacks the same level of structure or support. Prevention and screening operate within organised systems where patients are invited/scheduled for a screening, reminded, and monitored whereas Early Detection relies on unscheduled, symptom-led encounters, which are far more variable and harder to standardise. There is also a balance were patients have to be educated and recognise there symptoms need to be seen and treated by a phyician, as sometimes symptoms could include something as simple as loss of appetite or fatigue, Despite its importance, Early Detection in primary care remains less researched, less protocolised, and more dependent on individual patient–clinician interactions, creating a greater need for investigation.

The introduction has been updated with the line “Early detection of symptomatic cancer highlights the unique role of primary care professionals in recognising and triaging early-stage symptoms. While asymptomatic patients benefit from prevention and screening programs managed outside primary care, symptomatic patients must be seen by a physician to ensure timely evaluation and referral” to reflect this query.

In response to your second question, our recruitment is designed to engage a diverse and inclusive group of patients, carers, clinicians, policymakers, and academics based primarily in Ireland who have an interest in the early detection of symptomatic cancer. This includes both clinicians and academics, but participants are not limited to primary care. We have intentionally kept the inclusion criteria broad to ensure we capture a wide range of perspectives. The prioritisation exercises aim to listen to the community, understand their needs, and identify key priorities in this field. “Professional networks” refers to groups of professionals working in the same or related areas. While key primary care and cancer care networks are highlighted in our updated protocol, we also draw on collaborator networks, other organisations, and social media channels to reach a broader audience of academics and clinicians beyond primary care. In response to this query, we have updated the recruitment methodology section to clarify the meaning of “professional networks” and to expand on some (though not all) of the organisations contacted. Additionally, we have defined “primary care” in line with the HSE definition, referring to all health or social care services available in the community, outside of hospitals, including general practitioners, public health nurses, and other services providing a single point of contact with the health system.
Thank you for reading the protocol and providing feedback, we appreciate the time spent on reading our protocol. With regards to your first question, the pre-diagnostic cancer continuum comprises three recognised stages: prevention, screening (in asymptomatic individuals), and early detection (in symptomatic individuals). While primary care contributes to all three, this study deliberately focuses on early detection in symptomatic patients for two key reasons:

Greater complexity and dual responsibility- Improvements in prevention and Screening are largely driven by patient behaviour change (i.e. lifestyle advice or screening uptake), whereas early detection requires both patient action and clinician decision-making. Primary care settings are usually the first-place patients go to when they feel unwell and present with symptoms, sometimes these symptoms are early signs of cancer, while clinicians must interpret often non-specific signs and decide when to investigate or refer.

Evidence gap and clinical urgency- While prevention (i.e. lifestyle advice, smoking cessation, vaccinations, exercise) and Screening (i.e. bowel, breast, cervical screening programmes) are well-established in primary care in terms of education guidance, screening are run by national programs, like the National Screening Services (NSS). If diagnosed with cancer during these screenings there is a defined patient pathway, and extensive public health infrastructure, Early Detection lacks the same level of structure or support. Prevention and screening operate within organised systems where patients are invited/scheduled for a screening, reminded, and monitored whereas Early Detection relies on unscheduled, symptom-led encounters, which are far more variable and harder to standardise. There is also a balance were patients have to be educated and recognise there symptoms need to be seen and treated by a phyician, as sometimes symptoms could include something as simple as loss of appetite or fatigue, Despite its importance, Early Detection in primary care remains less researched, less protocolised, and more dependent on individual patient–clinician interactions, creating a greater need for investigation.

The introduction has been updated with the line “Early detection of symptomatic cancer highlights the unique role of primary care professionals in recognising and triaging early-stage symptoms. While asymptomatic patients benefit from prevention and screening programs managed outside primary care, symptomatic patients must be seen by a physician to ensure timely evaluation and referral” to reflect this query.

In response to your second question, our recruitment is designed to engage a diverse and inclusive group of patients, carers, clinicians, policymakers, and academics based primarily in Ireland who have an interest in the early detection of symptomatic cancer. This includes both clinicians and academics, but participants are not limited to primary care. We have intentionally kept the inclusion criteria broad to ensure we capture a wide range of perspectives. The prioritisation exercises aim to listen to the community, understand their needs, and identify key priorities in this field. “Professional networks” refers to groups of professionals working in the same or related areas. While key primary care and cancer care networks are highlighted in our updated protocol, we also draw on collaborator networks, other organisations, and social media channels to reach a broader audience of academics and clinicians beyond primary care. In response to this query, we have updated the recruitment methodology section to clarify the meaning of “professional networks” and to expand on some (though not all) of the organisations contacted. Additionally, we have defined “primary care” in line with the HSE definition, referring to all health or social care services available in the community, outside of hospitals, including general practitioners, public health nurses, and other services providing a single point of contact with the health system.
Competing Interests: None declared. Close
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Author Response 14 Nov 2025

Benjamin Jacob, Department of General Practice, RCSI University of Medicine and Health Sciences, Dublin, Ireland

14 Nov 2025

Author Response
Thank you for reading the protocol and providing feedback, we appreciate the time spent on reading our protocol. With regards to your first question, the pre-diagnostic cancer continuum comprises three recognised stages: prevention, screening (in asymptomatic individuals), and early detection (in symptomatic individuals). While ... Continue reading
Thank you for reading the protocol and providing feedback, we appreciate the time spent on reading our protocol. With regards to your first question, the pre-diagnostic cancer continuum comprises three recognised stages: prevention, screening (in asymptomatic individuals), and early detection (in symptomatic individuals). While primary care contributes to all three, this study deliberately focuses on early detection in symptomatic patients for two key reasons:

Greater complexity and dual responsibility- Improvements in prevention and Screening are largely driven by patient behaviour change (i.e. lifestyle advice or screening uptake), whereas early detection requires both patient action and clinician decision-making. Primary care settings are usually the first-place patients go to when they feel unwell and present with symptoms, sometimes these symptoms are early signs of cancer, while clinicians must interpret often non-specific signs and decide when to investigate or refer.

Evidence gap and clinical urgency- While prevention (i.e. lifestyle advice, smoking cessation, vaccinations, exercise) and Screening (i.e. bowel, breast, cervical screening programmes) are well-established in primary care in terms of education guidance, screening are run by national programs, like the National Screening Services (NSS). If diagnosed with cancer during these screenings there is a defined patient pathway, and extensive public health infrastructure, Early Detection lacks the same level of structure or support. Prevention and screening operate within organised systems where patients are invited/scheduled for a screening, reminded, and monitored whereas Early Detection relies on unscheduled, symptom-led encounters, which are far more variable and harder to standardise. There is also a balance were patients have to be educated and recognise there symptoms need to be seen and treated by a phyician, as sometimes symptoms could include something as simple as loss of appetite or fatigue, Despite its importance, Early Detection in primary care remains less researched, less protocolised, and more dependent on individual patient–clinician interactions, creating a greater need for investigation.

The introduction has been updated with the line “Early detection of symptomatic cancer highlights the unique role of primary care professionals in recognising and triaging early-stage symptoms. While asymptomatic patients benefit from prevention and screening programs managed outside primary care, symptomatic patients must be seen by a physician to ensure timely evaluation and referral” to reflect this query.

In response to your second question, our recruitment is designed to engage a diverse and inclusive group of patients, carers, clinicians, policymakers, and academics based primarily in Ireland who have an interest in the early detection of symptomatic cancer. This includes both clinicians and academics, but participants are not limited to primary care. We have intentionally kept the inclusion criteria broad to ensure we capture a wide range of perspectives. The prioritisation exercises aim to listen to the community, understand their needs, and identify key priorities in this field. “Professional networks” refers to groups of professionals working in the same or related areas. While key primary care and cancer care networks are highlighted in our updated protocol, we also draw on collaborator networks, other organisations, and social media channels to reach a broader audience of academics and clinicians beyond primary care. In response to this query, we have updated the recruitment methodology section to clarify the meaning of “professional networks” and to expand on some (though not all) of the organisations contacted. Additionally, we have defined “primary care” in line with the HSE definition, referring to all health or social care services available in the community, outside of hospitals, including general practitioners, public health nurses, and other services providing a single point of contact with the health system.
Thank you for reading the protocol and providing feedback, we appreciate the time spent on reading our protocol. With regards to your first question, the pre-diagnostic cancer continuum comprises three recognised stages: prevention, screening (in asymptomatic individuals), and early detection (in symptomatic individuals). While primary care contributes to all three, this study deliberately focuses on early detection in symptomatic patients for two key reasons:

Greater complexity and dual responsibility- Improvements in prevention and Screening are largely driven by patient behaviour change (i.e. lifestyle advice or screening uptake), whereas early detection requires both patient action and clinician decision-making. Primary care settings are usually the first-place patients go to when they feel unwell and present with symptoms, sometimes these symptoms are early signs of cancer, while clinicians must interpret often non-specific signs and decide when to investigate or refer.

Evidence gap and clinical urgency- While prevention (i.e. lifestyle advice, smoking cessation, vaccinations, exercise) and Screening (i.e. bowel, breast, cervical screening programmes) are well-established in primary care in terms of education guidance, screening are run by national programs, like the National Screening Services (NSS). If diagnosed with cancer during these screenings there is a defined patient pathway, and extensive public health infrastructure, Early Detection lacks the same level of structure or support. Prevention and screening operate within organised systems where patients are invited/scheduled for a screening, reminded, and monitored whereas Early Detection relies on unscheduled, symptom-led encounters, which are far more variable and harder to standardise. There is also a balance were patients have to be educated and recognise there symptoms need to be seen and treated by a phyician, as sometimes symptoms could include something as simple as loss of appetite or fatigue, Despite its importance, Early Detection in primary care remains less researched, less protocolised, and more dependent on individual patient–clinician interactions, creating a greater need for investigation.

The introduction has been updated with the line “Early detection of symptomatic cancer highlights the unique role of primary care professionals in recognising and triaging early-stage symptoms. While asymptomatic patients benefit from prevention and screening programs managed outside primary care, symptomatic patients must be seen by a physician to ensure timely evaluation and referral” to reflect this query.

In response to your second question, our recruitment is designed to engage a diverse and inclusive group of patients, carers, clinicians, policymakers, and academics based primarily in Ireland who have an interest in the early detection of symptomatic cancer. This includes both clinicians and academics, but participants are not limited to primary care. We have intentionally kept the inclusion criteria broad to ensure we capture a wide range of perspectives. The prioritisation exercises aim to listen to the community, understand their needs, and identify key priorities in this field. “Professional networks” refers to groups of professionals working in the same or related areas. While key primary care and cancer care networks are highlighted in our updated protocol, we also draw on collaborator networks, other organisations, and social media channels to reach a broader audience of academics and clinicians beyond primary care. In response to this query, we have updated the recruitment methodology section to clarify the meaning of “professional networks” and to expand on some (though not all) of the organisations contacted. Additionally, we have defined “primary care” in line with the HSE definition, referring to all health or social care services available in the community, outside of hospitals, including general practitioners, public health nurses, and other services providing a single point of contact with the health system.
Competing Interests: None declared. Close
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VERSION 2 PUBLISHED 13 Sep 2023

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Version 1 13 Sep 23	read	read	read

Kevin Monahan, Imperial College London, London, UK
Xiaoyu Zong, Washington University, Seatle, USA
Yasemin Hirst, University of Central Lancashire, Preston, UK

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12 Nov 2025 | for Version 2

Yasemin Hirst, Applied Health Research Hub,, University of Central Lancashire, Preston, England, UK

4 Views Cite this report Responses(0)

Approved

Thank you for the revised protocol. Happy with how the authors addressed all my queries.

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

Cancer prevention and early diagnosis, population health, mixed methods research

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.

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33 Views

19 Sep 2024 | for Version 1

Yasemin Hirst, Applied Health Research Hub,, University of Central Lancashire, Preston, England, UK

33 Views Cite this report Responses(1)

Approved With Reservations

Is the rationale for, and objectives of, the study clearly described?

Yes
Is the study design appropriate for the research question?

Yes
Are sufficient details of the methods provided to allow replication by others?

Yes
Are the datasets clearly presented in a useable and accessible format?

Not applicable

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

Cancer prevention and early diagnosis, population health, mixed methods research

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Author Response

14 Nov 2025

Benjamin Jacob, Department of General Practice, RCSI University of Medicine and Health Sciences, Dublin, Ireland

Thank you very much for your thoughtful and sensitive feedback on our protocol. We deeply appreciate the time you have taken to engage with this work, and we value the opportunity to respond to the important questions you have raised. Below, we provide clarification and detail on each of your points, and have also updated our protocol accordingly.

In response to your question about existing data and inequalities, we have drawn on several key sources, including the European Cancer Inequalities Registry’s Country Cancer Profile 2023 and the Cancer Inequalities in Ireland: National Cancer Strategy 2017–2026. These data show that patients from deprived populations in Ireland face a 40% higher five-year cancer mortality rate. Inequalities are also linked to geography, education, and screening participation. Evidence for marginalized and migrant populations remains limited, but existing literature highlights barriers such as language, cultural differences, and lack of awareness that may hinder outcomes. Our introduction has been updated to highlight these inequalities. In addition, Ireland's National Cancer Strategy 2017–2026 specifically acknowledges these gaps and outlines objectives to reduce health inequalities through targeted interventions, inclusive policies, and sustained investment, with the aim of achieving equitable cancer care across all populations by 2026.

You asked about differences in suspected cancer referral pathways between the UK and Ireland. To address this, we have expanded the healthcare context section of our protocol as follows: “The Irish Health Service Executive (HSE) and the UK’s National Health Service (NHS) share similarities in cancer care structures, including GP referral to hospitals and provision of free assessment and treatment. However, differences in funding models, access pathways, and referral processes mean that research priorities can diverge significantly.”

For a more detailed example: In the UK, patients suspected of having cancer can be referred through the “two-week wait” pathway, which ensures specialist review within 14 days and treatment initiation within 62 days. This system benefits from standardized referral pathways, electronic referrals, and wide regional consistency (information can be found at Cancer Research UK and NHS). Whereas in Ireland, patients are typically referred to Rapid Access Clinics (RACs) for cancers such as lung and prostate. Access routes vary, and waiting times can differ regionally. Ireland currently has nine designated cancer centres and eight RACs (HSE).

In response to methodology and inclusion, we recognise the importance of inclusivity in health research, particularly for groups that are often under-represented. In designing this study, we aimed to reach diverse communities through both the survey and workshops.

Targeted dissemination: We engaged community organisations and advocacy groups representing people from ethnic minority backgrounds, refugees, individuals with mental illness, those with physical or learning disabilities, and those with visual or hearing impairments.

Accessible materials: We produced closed-captioned videos in multiple languages, easy-to-read newsletters, flyers, explainer videos, and step-by-step guides. These were additionally distributed through cancer organisations across all counties in Ireland (2–3 per county).

Wider reach: We also used social media (X, LinkedIn, Instagram) to extend participation beyond academic and clinical circles.

Our inclusion criteria were deliberately broad to capture a range of lived experiences. Survey monitoring has been ongoing to ensure wide representation, reduce bias, and strengthen generalisability. We acknowledge, however, that limitations exist. For workshops, our ethics approval and available resources did not allow us to provide live interpreters. Following James Lind Alliance guidance, our initial plan involves in-person workshops. We are committed to transparently reporting who we did and did not reach, and to highlighting where future work is needed to address inequities in research participation. Thank you for highlighting the importance of sensitivity in survey design. We want to reassure you that it was not our intention to cause distress or guilt. To minimise this risk, the survey wording was reviewed and refined with input from a Patient and Public Involvement (PPI) group comprising people with lived experience of cancer. Then, a pilot phase was conducted with participants who had received a cancer diagnosis; all approved the terminology and phrasing used. The survey’s purpose is to provide individuals affected by cancer with an opportunity to reflect on their experiences in a respectful and supportive way. We are grateful for your reminder of the need for careful consideration of language, and we have ensured this remains a central focus throughout.

By “early detection we mean patient that seek intervention when they experience symptoms for the first time and get checked by their primary care physicians. While some academic groups use the term early detection to encompass both screening and symptomatic detection, in this study we focus solely on the latter. The terminology has been updated in our protocol. Lastly, thank you for your kind edit we have fixed PIS to represent participant information sheet.

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Competing Interests

None declared.

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Reviewer Report

27 Views

29 Dec 2023 | for Version 1

Xiaoyu Zong, School of Medicine in St. Louis, Washington University, Seatle, Washington, USA

27 Views Cite this report Responses(1)

Approved With Reservations

Is the rationale for, and objectives of, the study clearly described?

Yes
Is the study design appropriate for the research question?

Yes
Are sufficient details of the methods provided to allow replication by others?

Partly
Are the datasets clearly presented in a useable and accessible format?

Not applicable

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

Cancer risk, cancer survivor, cancer early detection

Respond to this report

Responses (1)

Author Response

14 Nov 2025

Benjamin Jacob, Department of General Practice, RCSI University of Medicine and Health Sciences, Dublin, Ireland

Thank you very much for providing thoughtful feedback and constructive comments.

Starting with the rationale, we provide a broad overview of our research goal which simply is to engage patients, caregivers, stakeholders, academics, and clinicians in identifying and prioritising questions for future research in early detection of symptomatic cancer in primary care in Ireland. Rather than priming participants with hard facts or predetermined priorities, this approach encourages reflection on personal experiences and perspectives, allowing participants to generate questions that address feasibility, potential benefits, and patient outcomes. Through this process, participants collaboratively contribute to a finalised “Top 10” list of research priorities that is meaningful and relevant to all involved, as suggested by previous James Lind Alliance (JLA) prioritisation exercises.

Research focused on early detection in primary care is particularly important because this stage of the cancer continuum is critical to patient outcomes. Early detection improves survival, reduces treatment-related costs and complications, and enhances system efficiency. Primary care is central to this process, as most patients first present with symptoms to GPs or other community-based clinicians. Interventions in this setting can target both patient behaviour (e.g., recognising symptoms and presenting early) and clinician behaviour (e.g., improving diagnostic processes), offering the potential for substantial improvements in outcomes.

Furthermore, factors influencing early diagnosis include disease-related, patient-related, healthcare professional (HCP), and health system factors, as outlined in the HSE’s National Cancer Control Programme Early Diagnosis of Symptomatic Cancer Plan 2022–2025. Approximately 85% of cancer patients present with symptomatic disease, yet evidence from the UK and Denmark shows that up to 50% of patients with atypical or non-specific symptoms may not trigger urgent referral. This highlights the need to equip HCPs with tools and knowledge to identify early signs. Expanding understanding of disease presentation, combined with national health literacy initiatives, can further support early detection and screening engagement.

Despite the clear importance of early cancer detection, research in primary care remains underfunded in Ireland. While the NCCP outlines plans to improve cancer care, a prioritisation exercise grounded in the experiences of Irish patients and clinicians is uniquely valuable. Capturing participants’ reflections, experiences, and priorities ensures that the resulting Top 10 research questions are both evidence-informed and rooted in the lived experience of those most closely involved in cancer care.
As for the scope, the study specifically targets symptomatic adult cancer in primary care because patients are more likely to present with symptoms rather than for preventative care or screening which directly relates to the asymptomatic patient and are carried out by other entities. This focus addresses a recognised gap in research: early detection in primary care, which is distinct from cancer prevention or screening and is under-studied internationally and in Ireland, making this population and setting a priority for consensus-driven research prioritisation. We have updated the introduction to highlight the importance of symptomatic cancer and primary care role, in addition we have defined the terminology in the scope.

In response to your final question regarding the survey, it includes a mix of multiple-choice and open-ended questions. The multiple-choice questions ensure that responses reflect a representative sample of the Irish population and demographics. Open-ended questions, will be analysed using qualitative software (NVivo) to systematically code and categorise responses, enabling thematic analysis while maintaining transparency.

View more View less

Competing Interests

None declared.

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Reviewer Report

33 Views

09 Nov 2023 | for Version 1

Kevin Monahan, St Mark’s Hospital, Imperial College London, London, England, UK

33 Views Cite this report Responses(1)

Approved With Reservations

This is a well designed study protocol which will provide a useful strategic perspective on the role of early detection of cancer in the Irish primary care setting. I have a couple of minor queries:

Why select 'early detection' and not also 'prevention' of cancer?
Will clinicians and academics be drawn from primary care and other care providers also? It may be helpful to understand a little more about professional representation and how it will be identified and appropriate i.e. what is meant by 'professional networks'?

Is the rationale for, and objectives of, the study clearly described?

Yes
Is the study design appropriate for the research question?

Yes
Are sufficient details of the methods provided to allow replication by others?

Yes
Are the datasets clearly presented in a useable and accessible format?

Yes

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

Early detection and prevention of cancer

Respond to this report

Responses (1)

Author Response

14 Nov 2025

Benjamin Jacob, Department of General Practice, RCSI University of Medicine and Health Sciences, Dublin, Ireland

Thank you for reading the protocol and providing feedback, we appreciate the time spent on reading our protocol. With regards to your first question, the pre-diagnostic cancer continuum comprises three recognised stages: prevention, screening (in asymptomatic individuals), and early detection (in symptomatic individuals). While primary care contributes to all three, this study deliberately focuses on early detection in symptomatic patients for two key reasons:

Greater complexity and dual responsibility- Improvements in prevention and Screening are largely driven by patient behaviour change (i.e. lifestyle advice or screening uptake), whereas early detection requires both patient action and clinician decision-making. Primary care settings are usually the first-place patients go to when they feel unwell and present with symptoms, sometimes these symptoms are early signs of cancer, while clinicians must interpret often non-specific signs and decide when to investigate or refer.
Evidence gap and clinical urgency- While prevention (i.e. lifestyle advice, smoking cessation, vaccinations, exercise) and Screening (i.e. bowel, breast, cervical screening programmes) are well-established in primary care in terms of education guidance, screening are run by national programs, like the National Screening Services (NSS). If diagnosed with cancer during these screenings there is a defined patient pathway, and extensive public health infrastructure, Early Detection lacks the same level of structure or support. Prevention and screening operate within organised systems where patients are invited/scheduled for a screening, reminded, and monitored whereas Early Detection relies on unscheduled, symptom-led encounters, which are far more variable and harder to standardise. There is also a balance were patients have to be educated and recognise there symptoms need to be seen and treated by a phyician, as sometimes symptoms could include something as simple as loss of appetite or fatigue, Despite its importance, Early Detection in primary care remains less researched, less protocolised, and more dependent on individual patient–clinician interactions, creating a greater need for investigation.

The introduction has been updated with the line “Early detection of symptomatic cancer highlights the unique role of primary care professionals in recognising and triaging early-stage symptoms. While asymptomatic patients benefit from prevention and screening programs managed outside primary care, symptomatic patients must be seen by a physician to ensure timely evaluation and referral” to reflect this query.

In response to your second question, our recruitment is designed to engage a diverse and inclusive group of patients, carers, clinicians, policymakers, and academics based primarily in Ireland who have an interest in the early detection of symptomatic cancer. This includes both clinicians and academics, but participants are not limited to primary care. We have intentionally kept the inclusion criteria broad to ensure we capture a wide range of perspectives. The prioritisation exercises aim to listen to the community, understand their needs, and identify key priorities in this field. “Professional networks” refers to groups of professionals working in the same or related areas. While key primary care and cancer care networks are highlighted in our updated protocol, we also draw on collaborator networks, other organisations, and social media channels to reach a broader audience of academics and clinicians beyond primary care. In response to this query, we have updated the recruitment methodology section to clarify the meaning of “professional networks” and to expand on some (though not all) of the organisations contacted. Additionally, we have defined “primary care” in line with the HSE definition, referring to all health or social care services available in the community, outside of hospitals, including general practitioners, public health nurses, and other services providing a single point of contact with the health system.

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Competing Interests

None declared.

Alongside their report, reviewers assign a status to the article:

Approved - the paper is scientifically sound in its current form and only minor, if any, improvements are suggested

Approved with reservations - A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit.

Not approved - fundamental flaws in the paper seriously undermine the findings and conclusions

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Early detection of symptomatic cancer in primary care in Ireland: a protocol for a research prioritisation exercise

Abstract

Background

Methods

Results

Conclusions

Keywords

Revised Amendments from Version 1

Introduction

Rationale, aims and objectives

Methods

Figure 1. Stages of the research prioritisation exercise.

Beneficiary

Scope

Healthcare context

1: PSP Steering group

2: Online survey

Table 1. Online questionnaire.

3: Processing survey responses

4: Identifying unanswered questions

5: Interim priority setting

6: Consensus workshop

Results

Dissemination

Study status

Conclusion and implications

Ethics

Data availability

References

Comments on this article Comments (0)

Open Peer Review

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Open Peer Review

Reviewer Status

Reviewer Reports

Comments on this article

Are you a HRB-funded researcher?

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Early detection of symptomatic cancer in primary care in Ireland: a protocol for a research prioritisation exercise

Abstract

Background

Methods

Results

Conclusions

Keywords

Revised Amendments from Version 1

Introduction

Rationale, aims and objectives

Methods

Figure 1. Stages of the research prioritisation exercise.

Beneficiary

Scope

Healthcare context

1: PSP Steering group

2: Online survey

Table 1. Online questionnaire.

3: Processing survey responses

4: Identifying unanswered questions

5: Interim priority setting

6: Consensus workshop

Results

Dissemination

Study status

Conclusion and implications

Ethics

Data availability

References

Comments on this article Comments (0)

Open Peer Review

Comments on this article Comments (0)

Open Peer Review

Reviewer Status

Reviewer Reports

Comments on this article

Competing Interests Policy

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Are you a HRB-funded researcher?

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