Purpose

The aim of the survey was to obtain patients’ perspectives on where they encountered inefficiency in their care, looking at the entire care continuum as well as the broader impact of cancer on their lives. As mentioned previously, the survey made explicit that we defined inefficiency as resources not focused on what matters to patients.

Survey conduct and oversight

The design and conduct of the survey was led by Quality Health, a specialist health and social care survey organisation working with public, private and voluntary sector organisations to understand and improve patients’ experience of their care and treatment. The All.Can international research and evidence working group provided close input and validation for all phases of the survey and analysis.

The survey was conducted internationally, with adapted versions in 10 countries (Australia, Belgium, Canada, France, Italy, Poland, Spain, Sweden, the United Kingdom and United States).

Survey development and patient interviews

The questions included in the survey were developed based on key themes that emerged from a review of the international literature on waste and inefficiency in cancer care, and five explorative in-depth patient interviews. Iterative versions of the survey were revised based on input from the All.Can international research and evidence working group and other professional stakeholders where appropriate, and drawing on Quality Health’s experience of survey design and previous work with cancer patients and patient organisations.

Country-specific surveys were developed, with cognitive testing of the survey done in every country. Surveys were produced in relevant language(s) for each country and comprised both common questions and a maximum of five questions specific to the country. Additionally, an international version of the survey was available in English, French, German and Spanish.

Each country survey was reviewed by the national All.Can initiative where applicable, and the All.Can international research and evidence working group to ensure consistency between the different country versions of the survey.

Post-survey interviews were conducted in seven countries (interviews were not done in France and Spain due to no volunteers). The findings from these interviews served to inform the qualitative analysis and develop patient stories, which are featured across this document.

Recruitment of respondents

The survey was made available online, with only few paper copies distributed. Respondents were recruited mostly via patient organisations and social media (Facebook, Twitter and LinkedIn). A notable exception was in Australia, where the survey was also distributed by cancer nurses at the University of Western Australia hospital.

The survey was available for completion from January to November 2018. The survey was open to current and former cancer patients. Carers were also invited to respond on behalf of patients who were unable to do so themselves. Patients of all ages and cancer types were invited to participate.