Volume 51, Issue 8, August 2022

Embedding primary healthcare professionals as consumers in cancer research development

Kristi Milley    Sophie Chima    Elysia Thornton-Benko    Jon Emery   
doi: 10.31128/AJGP-11-21-6242   |    Download article
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Primary care research underpins the development and implementation of best clinical practice and health service delivery in the general practice setting. In Australia, general practice is the cornerstone of primary healthcare and primary medical care delivery. It is essential to involve primary healthcare professionals as stakeholders in the development of research questions and study design to ensure relevance and feasibility.1 Primary healthcare provider participation is key to providing research that can be readily translated to improve patient care.2 This commentary describes GP Circle, a unique initiative to integrate primary care professionals early in the development of cancer research.

Embedding primary care provider input faces many challenges

Wizenberg and Gill have summarised the considerable ongoing barriers to building primary care research capacity and the integration of research into practices.3 These barriers endure despite ongoing lobbying and advocacy. Australia, unlike similar countries such as the UK and the Netherlands, does not have any funding to support practice-based research networks.4 Manski-Nankervis et al have emphasised this persistent undervaluing of general practice research.5 A significant loss to primary care research funding support was the loss of funding for the Primary Health Care Research, Evaluation and Development Strategy and its linked organisations, the Australian Primary Health Care Research Institute and the Primary Health Care Research and Information Service. Limited funding, poorly supported academic career pathways and inadequate reimbursement of primary healthcare professionals and practices all contribute to difficulty in embedding primary care representatives in the development of research that will ultimately affect their own clinical setting.5 This disparity in equitable primary care research investment and resourcing is seen globally.6,7

Creating a mechanism for input into research concept development

Recognising these substantial barriers while continuing to strive towards improving general practice engagement is important for developing high-quality primary care research. There is a strong drive to ensure consumer involvement in research. From our perspective, this includes general practitioners (GPs) and other healthcare professionals as the next users of research. Currently, GPs can be involved at various levels in primary care research, but their direct involvement in development prior to implementation is often suboptimal. There is a dearth of support to enable primary healthcare professionals to be engaged more deeply during research development. Many GPs have special interest areas, skills and experience that can inform research concept development from a primary care perspective, aiding a holistic view and further improving the feasibility and implementation of relevant research. To specifically address the importance of engaging with primary care to develop relevant research questions and identify the most appropriate research methodology and intervention design, the Primary Care Collaborative Cancer Clinical Trials Group (PC4) launched GP Circle in mid-2019. GP Circle members were recruited through a variety of methods including face-to-face workshops, GP20 conference promotion, email to medical clinics, brochure drops in clinics participating in PC4 research and short communications in external stakeholder newsletters such as Primary Health Networks and professional organisations including the Australian Primary Health Care Nurses Association. The aim was to recruit GPs, practice nurses and practice managers to better integrate a diverse range of professional voices and experiences into the development of new primary care–based cancer clinical trials. Establishing GP Circle leveraged existing funding and infrastructure through Cancer Australia’s Support for Clinical Trials Program. The initiative created an online national group that participates in discussions about new research and creates opportunities for members to join research teams as a general practice representative, either as an associate investigator or as part of a steering committee. While a formal evaluation of this initiative will be considered in the future, metrics of acceptability include the growth of GP Circle to nearly 30 members. Members have provided input on 20 new projects, with five of these recruiting a GP Circle member to join the research team. Members’ time providing feedback has been reimbursed, and The Royal Australian College of General Practitioners–endorsed budget guide8 provides researchers with a guide for sitting fees and other modalities for recognition of primary healthcare professionals’ contribution to research development.

A bidirectional approach to engagement was maximised, as GPs have reported that one of their strongest incentives for participating in research is to update their knowledge.9 General practice staff applied their in-depth knowledge of primary care processes and unmet needs to inform and develop research proposals, while also receiving information and education on the latest cancer in primary care evidence. To support this, we release a tailored newsletter for members that promotes our cancer in primary care research podcast (Research Round-up), new relevant research articles and educational events of interest. Recognising that lack of time is a key barrier to GP input,9 we have tried to provide flexible input options, using email with a two-week turnaround time.

This endeavour would not have been possible without existing funding and infrastructure, which again highlights the significant impact that the undervaluing of primary care and primary care research has on the capacity to develop high-quality meaningful research. Engagement in GP Circle indicates that this model could work well across all primary care research, illustrating that general practice staff have knowledge and experience that they want to use to support and enhance research. Our experience echoes the current barriers to engaging with primary healthcare providers but also shows the benefit of a small, tailored, grassroots approach to engagement – an approach that recognises the value the whole practice team plays, including practice nurses and managers.

Imagine what could be possible for primary care research in Australia if it received proper support. For example, the National Institute for Health Research, with strong primary care research investment, supported 430 primary care studies in 2019/20 that recruited more than 150,000 participants.10 Primary healthcare is the foundation of our healthcare system and needs greater support and investment to nurture primary healthcare research. Given the paucity of opportunities available to primary care professionals, methods that are welcomed by both primary care professionals and researchers are critical. The GP Circle initiative is a small step towards this as it provides a supported pathway to engage in research concept design. For us, it has helped move further towards stronger partnerships with primary healthcare professionals and general practices to develop new cancer in primary care clinical trials.

Competing interests: SC is the recipient of the Joan Alice Duncan PhD Scholarship.
Provenance and peer review: Not commissioned, externally peer reviewed.
Funding: The Primary Care Collaborative Cancer Clinical Trials Group (PC4) is funded through Cancer Australia’s Support for Cancer Clinical Trials Program Grant.
Corresponding author:
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