# Breast cancer research gaps: a questionnaire-based study to determine overall priorities and compare the priorities of patients, the public, clinicians and scientists

## TL;DR

This study shows that patients, the public, and clinicians prioritize breast cancer research differently than scientists, emphasizing the need for patient and public involvement in research funding decisions.

## Contribution

The study compares research priorities across four stakeholder groups in breast cancer care using a novel questionnaire-based approach.

## Key findings

- Patients, the public, and clinicians ranked 'better prevention' as a top priority, while scientists ranked it sixth.
- Patients prioritized research into alternative to mammograms and diagnostic blood tests more than clinicians.
- Scientists had moderate agreement with patients compared to the public and clinicians.

## Abstract

This study aims to prioritise the themes identified from the three gap analyses performed by a combination of scientists, clinicians, patients and members of the public to determine areas in breast cancer care where research is lacking. We also aimed to compare the priorities of areas of agreed research need between patients, the public, clinicians and scientists.

A cross-section of patients, public, clinicians and scientists completed a prioritisation exercise to rank the identified themes where research is lacking in breast cancer care.

Patients, clinicians and scientists who have experienced, managed or worked in the field of breast cancer and members of the public.

The research areas identified in the Breast Cancer Campaign, Association of Breast Surgery and North West Breast Research Collaborative gap analyses were outlined as 22 themes in lay terminology. Patients, members of the public, clinicians and scientists were invited to complete the prioritisation exercise, on paper or electronically, ranking the themes from 1 to 22. Comparisons were made with arithmetic mean ranking.

Of the 510 prioritisation exercises completed, 179 (35%) participants were patients, 162 (32%) public, 43 (8%) scientists and 122 (24%) clinicians. The theme ranked of highest priority overall was ‘better prevention’ (arithmetic mean rank 6.4 (SE 0.23)). ‘Better prevention’ was ranked top or second by patients, public and clinicians (7 (0.39), 4.7 (0.34) and 6.8 (0.5), respectively), however, scientists ranked this as their sixth most important factor (7.7 (0.92)). The public and clinicians had good agreement with patients (r=0.84 and r=0.75, respectively), whereas scientists had moderate agreement with patients (r=0.65). Certain themes were ranked significantly differently by participant groups. Compared with clinicians, patients prioritised research into ‘alternative to mammograms’, ‘diagnostic (cancer) blood test’ and ‘rare cancers’ (OR 2.1 (95% CI 1.3 to 3.5), p=0.002, OR 2.1 (95% CI 1.3 to 3.5), p=0.004 and OR 1.7 (95% CI 1.1 to 2.8), p=0.03). Compared with scientists, patients deprioritised ‘better laboratory models’ (OR 0.4 (95% CI 0.2 to 0.8), p=0.01).

This study demonstrates that patients, public, clinicians and scientists have different research priorities, with scientists being a particular outlier. This highlights the need to ensure the engagement of patients and public in research funding prioritisation decisions.