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

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.

Enhancing Global Development of Palliative Care: Insights from Country Experts on ATLANTES Observatory's Role

“…An additional effort in the line of policy briefings and dissemination could be desirable; not in vain, policymakers have a crucial starting point for planning and implementing services at a national level. 31 …”

Challenges for research uptake for health policymaking and practice in low- and middle-income countries: a scoping review

“…Untrained human resources (53,54,105) , lack of research capacity portfolios (83) , low capacity to produce and use evidence (77) , and limited researchers' knowledge about research funding (73,84,108,131) , have all in uenced health evidence to policy translation. Extensive capacity building, at the individual and organisational level (47,52,58,63,76,77,79,84,103,110,111,122,123,142,146,149,152,156) , for skilled human resource for research development (46,47,97,104,105,112,131,144,149) through in-service training (77,78,82,104,105,138) is urgently required to improve use of research evidence. Funders need strong technical skills from researchers and integrated evidence translation (33,102,147) .…”

“…Effective communication of research ndings (41, 48, 58, 59, 68, 70, 74, 76, 77, 79, 89, 97, 101, 113, 120, 131, 133, 138, 142-145, 150, 152) allows policymakers to share their knowledge and experiences (70,79,144) , and engage stakeholders (41,131,142,143,150,152) . Knowledge translation through better packaging of key ndings using plain and easy language (48,74,89,138,145) facilitates active diffusion of innovation (101) .…”

“…Priority setting (5,15,17,22, has been reported to have important impacts on research uptake for policymaking and practice improvement (69,70,75,98,134,139,143,144,148) and needs the involvement of key experts (98,134,139,145) , and policymakers (69,70,107,(144)(145)(146)148) to anticipate organisational need for policymaking (75,80,143,144,148) , and create a shared data administration system (30,98) . Prioritized evidence that is aligned to ideas and actions of political priority (106,109,138) must be made readily available (80,145) .…”

“…These stakeholders should be involved from the inception of project and throughout the research process. Such involvement takes into account local needs, encourages interactions, strengthens relationships, creates mutual accountability and promotes uptake of the evidence for policymaking (68,69,73,77,93,97,144,155) . Likewise, evidence uptake for health policymaking needs strong public-private partnership (58,91,110,115,155) , and advocacy for domestic funding, resource mobilization and collaboration (91,155) .…”