Mapping the cancer patient information landscape: A comparative analysis of patient groups across Europe and North America

Aim: Little is known about how patient groups provide information for patients. We invited 838 patient groups from Europe and North America to participate in an online survey. Methods: The survey covered: (i) availability, accessibility and quality of information provided; (ii) methods by which patient groups communicate; (iii) ways in which patient groups acquire information and confirm its veracity/accuracy; (iv) how people access information online. Results: European patient groups were significantly less effective in providing medical-related information than their North American counterparts in: clinical trials, potential causes of cancer, medical research, diagnosis/screening, symptoms, treatments (all p < 0.0001); Recommendations of best practice/care (p < 0.03), healthcare services(p = 0.029) and complimentary medicine (p = 0.01). Clinical trials (p = 0.0006), medical research (p = 0.006) and diagnosis/screening (p = 0.0024) were also areas where North American patients were more likely to require medical-related information. Similar patterns emerged for non-medical information with nutrition (<0.0001), watchful waiting (p = 0.0003), self-management of care (p = 0.0003), prevention (p = 0.002) and emotional issues (p = 0.016) being less effectively communicated by European patient groups. Nutrition was also an area where North American patients were more likely to require nonemedical-related information. The main barriers in accessing online information which showed differences between European and North American patients were: perceived lack of need, mainly due to faith in their doctors (p = 0.0001); limited access to the internet (p = 0.0005), limited computer skills (p = 0.02); and lower income (p = 0.027). Conclusion: These results emphasise the more mature nature of cancer patient engagement/information provision in North America, providing valuable insights and guidance to inform development of more robust and effective cancer patient information communication platforms in Europe. (C) 2018 Elsevier Ltd. All rights reserved.