We know that people in rural and remote communities (including those in Scotland) tend to die of cancer more often than those living in urban areas and tend to live for fewer years after being diagnosed. However, we do not really know why this is and it seems likely that there is more than one reason. Moreover, not all rural and remote areas are the same, and different areas may face different challenges. We need to better understand what is going on: we can do this by checking available research studies, and also by considering the views of patients and health care professionals diagnosed with cancer.
This study has both short- and long-term aims. The short-term aim is to find out what we should prioritise in future research so we can focus on what is more likely to improve the lives of patients with cancer in rural and remote communities.
We will achieve our short-term aim by summarising what has been published worldwide and in Scotland. Then, we will compare these data with challenges mentioned by health care professionals in Northeast Scotland (we have already contacted them via email and have put the data together) to identify areas that require more research. The research team will then prepare a long list of priorities for future research, and share this with a patient and public research interest group at the University of Aberdeen. This will be done to compare these priorities and to ensure we have taken into account issues that patients and the public see as important. We will then do an online study called a Delphi study, in which health care professionals and cancer survivors (the “experts”) will agree on which issues they see as most important. Together, they will reduce the list of priorities to up to 30 items. Finally, we will have a face-to-face workshop with 20 experts (health care professionals and cancer survivors) to reduce this list to “top 10 priorities”.
The study’s long-term aim is to source additional financial support to work on the top 10 priorities, so we can make a real, long-term difference to people diagnosed with cancer in rural and remote communities in Northeast Scotland.
The study has two workstreams (Figure 1) and covers key areas described by the James Lind Alliance1 when setting priorities: gather evidence uncertainties, summarise responses and check the evidence (addressed by Workstream 1), and interim priority setting and workshop (addressed by Workstream 2).
Figure 1. Study workstreams and outputs
Workstream 1 comprises:
- An umbrella review (also called systematic review of reviews) to identify rural cancer outcomes worldwide, in addition to variations across different rural areas, and rural-urban variation.
- A scoping review (which adopts a systematic approach and aims to map the evidence) to identify rural cancer outcomes within Scotland, and within-country variation.
- Use of existing evidence from a scoping consultation (carried out in early 2023) with health care professionals in rural areas in Scotland – this identified key challenges when caring for patients in rural and remote areas.
- Identification of areas for which there is most uncertainty and creation of a long-list of priorities for future cancer research.
- Consultation with patients and the public to ensure long-list of priorities is in line with what they see as important.
Workstream 2 comprises:
- An online Delphi study for interim priority setting. The list of priorities developed in Workstream 1 will inform a questionnaire for the Delphi study. We will recruit up to 40 experts, including 1) cancer survivors 2) key staff at Cancer Networks, 3) GPs and practice nurses, and 4) secondary care professionals in rural and remote areas (focusing on Northeast Scotland). We aim to reach consensus on what the top 30 priorities should be.
- A face-to-face workshop (the final stage of priority setting) with up to 20 participants (including health care professionals and cancer survivors). The group will agree the top 10 issues to be prioritised in further research. This evidence will be used to develop grant applications for larger programmes of work.
Scoping review: We have finished screening over 2300 publications and identified several eligible studies in Scotland. We are now extracting data from these studies and analysing all the information.
Umbrella Review: We have reviewed over 11,000 publications for relevance and are now checking full-text of almost 300 of them to identify eligible studies. This will be followed by extracting and analysing the data.
We will keep on updating this page with our progress, so watch this space!
Study results will be published in peer-reviewed scientific journals – we will also add details here in due course.