Data and information needs of policymakers for palliative cancer care: a multi-country qualitative study

Abstract

Abstract Background Despite regional efforts to address concerns regarding the burden of advanced cancer in Africa, urgent attention is still required. Widespread issues include late symptom presentation, inaccessibility of palliative care services, limited resources, poor data quality, disparity in data availability, and lack of stakeholder engagement. One way of helping to address these issues is by understanding and meeting the data and information needs of policymakers in palliative cancer care. Aims To explore the views of policymakers regarding data availability, data gaps and preferred data formats to support policy and decision making for palliative cancer care in Nigeria, Uganda and Zimbabwe. Methods A secondary analysis of interview data collected as part of a cross-sectional qualitative study that aimed to explore the data and information needs of patients, policymakers and caregivers in Nigeria, Uganda and Zimbabwe. Framework analysis, guided by the MEASURE evaluation framework, was used to qualitatively analyse the data. Results Twenty-six policymakers were recruited. The policymakers data and information concerns are aligned to the MEASURE evaluation framework of data and information use and include; assessing and improving data use (e.g. low prioritisation of cancer); identifying and engaging the data user (e.g. data processes); improving data quality (e.g. manual data collection processes); improving data availability (e.g. the accessibility of data); identifying information needs (e.g. what is ‘need to know’?); capacity building in core competencies (e.g. skills gaps); strengthening organisational data demand and use (e.g. policy frameworks); monitoring, evaluating and communicating of data demand and use (e.g. trustworthiness of data). Conclusions We present evidence of data sources, challenges to their access and use, guidance on data needs for policymakers, and opportunities for better engagement between data producers, brokers and users. This framework of evidence should inform the development of strategies to improve data access and use for policy and decision making to improve palliative cancer services in participating countries with relevance to the wider region.

Keywords

• Cancer
• Palliative care
• Sub-Saharan Africa
• Policymaker
• Decision making