Establishing a stakeholder group for primary care focused cancer research in Ireland.
Authors
| Affiliation | ORCID ID | |
| Benjamin Jacob | Dept. of General Practice, RCSI University of Medicine and Health Sciences | 0000-0003-1119-064X |
| Heather Burns | HSE National Cancer Control Programme | 0000-0003-3686-3898 |
| Barbara Clyne | Dept. of Public Health & Epidemiology, RCSI University of Medicine and Health Sciences | 0000-0002-1186-9495 |
| Laura O’Connor | HRB Primary Care Clinical Trials Network | |
| Primary Care PPI Group | HRB Primary Care Clinical Trials Network | |
| Kathleen Bennett | Data Science Centre, RCSI University of Medicine and Health Sciences | 0000-0002-2861-7665 |
| Patrick Redmond | Dept. of General Practice, RCSI University of Medicine and Health Sciences | 0000-0002-3929-2018 |
Keywords
Stakeholder engagement; Patient and public involvement; Steering group; Primary care; Cancer research; Research funding; Ireland.
Funding
Benjamin Jacob was funded by a HSE/ICGP Post CSCST Fellowship Award to conduct this work. Barbara Clyne is funded by a Health Research Board (HRB) Emerging Investigator Award (EIA-2019–09).
Conflict of interest
None declared.
Ethics
The Research Ethics Committee at RCSI granted approval for this project (REC202301024)
Abstract
Introduction
Currently, no group specifically supports and coordinates primary care focused cancer research in Ireland. The aim of this project is to establish an inclusive stakeholder group for primary care focused cancer research in Ireland, to coordinate research efforts and build capacity in researchers and institutions.
Methods
We will convene a stakeholder group, recruiting individuals with personal and professional experience of cancer care in a community setting. “Core stakeholders”—patients, clinicians, researchers, and policymakers—will attend regularly. Additional “specialist stakeholders”, such as representatives of secondary care, private healthcare, health insurance, industry, cancer charities, and health research funders, will participate on an ad hoc basis.
An e-Delphi consensus process will be used to assess the stakeholders’ views on: (1) the relevance and importance of primary care focused cancer research; (2) the potential role and scope of the stakeholder group; (3) how best to engage with lived experience stakeholders and healthcare professionals affected by the research; (4) how best to disseminate results and advocate for translation of findings into practice. Round 1 will be open-ended and will invite the independent suggestions of stakeholders; in Round 2 and 3, group members will vote on the inclusion of these suggestions in a position statement by the group, with consensus defined as ≥75% agreement.
Discussion
The formation of a broad stakeholder group to support primary care focused cancer research will ensure research is relevant, patient centred, and more readily translated into practice. It is also hoped that the group will support capacity building and strategic planning in this important research space.