Published: 08 November 2022
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- What practical steps can be taken to increase public acceptance of the use of administrative datasets for research to address public health issues and health inequalities?
Administrative datasets provide a valuable resource for research into public health and health inequalities. To aid use of these important datasets, the NIHR Public Health Research (PHR) Programme has previously commissioned a call “Unlocking data to inform public health policy and practice” in October 2020 to better understand the availability and potential of routinely collected administrative data to support evidence-based policy decisions.
Five awards were funded as detailed on the NIHR website:
- Award Number: NIHR133585. Chief Investigator: Tweed. Research Title: Unlocking data to inform public health policy and practice: decision-maker perspectives on the use of cross-sectoral data as part of a whole-systems approach
- Award Number: NIHR133634. Chief Investigator: Franklin. Research Title: Unlocking data to inform public health policy and practice
- Award Number: NIHR133648. Chief Investigator: Wright. Research Title: Whole system data linkage accelerators: a North-South partnership to unlock public health data
- Award Number: NIHR133680. Chief Investigator: Brophy. Research Title: Unlocking data to inform public health policy and practice
- Award Number: NIHR133761. Chief Investigator: Ford. Research Title: Unlocking data to inform public health policy and practice: Exploring barriers and creating solutions for public health intelligence using integrated datasets across Kent, Sussex and Surrey (KSS)
Recommendations from these awards included the need to work with the public to ensure public trust and to build acceptance for use of administrative datasets for public benefit.
DARE UK (Data and Analytics Research Environments UK) has recently published the findings of a UK-wide public dialogue exploring attitudes towards how sensitive data is handled and used in research. DARE UK and Office for Statistics Regulation (OSR) has also just published their report, A UK-wide public dialogue exploring what the public perceive as ‘public good’ use of data for research and statistics.
NIHR’s PHR Programme is keen to take forward the public perspective/ engagement aspect of this issue, to enable best possible use of real world data to enable high-quality research relevant to population health and health inequalities. This call is to commission research and evaluation of interventions to gain public buy-in and acceptance of use of administrative data for the public benefit. Areas of research could include, but are not limited to:
- Evaluations of the effectiveness of public engagement work aimed at addressing public attitudes to sharing their data
- Evaluations of interventions aimed at under-represented and/or disadvantaged groups to ensure better inclusion of vulnerable groups
- Qualitative research to understand public perceptions of the use of administrative datasets
The research and evaluation should be over a period of 18-24 months up to a value of £300K.
A range of study designs and outcome measures can be used. Researchers will need to clearly describe and justify their choice of health outcomes, target population group, as well as the rationale for their methodological approach. Researchers are encouraged to consider additional outcome measures including those relating to the broader determinants of health and health inequalities, which should be specified and justified. Researchers will also need to specify key outcomes and how these will be measured in the short, medium and long term.
Understanding the value of public health interventions – whether outcomes justify their use of resources – is integral to the PHR Programme, where resources relating to different economic sectors and budgets are potentially relevant. The main outcomes for economic evaluation are expected to include health (including health-related quality of life) and the impact on health inequalities as a minimum, with consideration of broader outcomes welcomed. Different approaches to economic evaluation are encouraged as long as they assess the value and distributive impact of interventions. Applications that do not include an economic component should provide appropriate justification.
Researchers are strongly encouraged to ensure that service users, including people with lived experience from the target audience, are involved in the design and planning of the intervention and/or as potential, suitably rewarded, members of the research team. Researchers should demonstrate the relevance of their proposed research to decision-makers and people with lived experiences and they might do this through involving them as costed/rewarded members of the research team. Researchers are encouraged to explain how they will share their findings with policy makers, public health officers, special interest groups, charities, community audiences and other relevant stakeholders.
Researchers are expected to be aware of other studies in this area, development in practice and ensure their proposed research is complementary.
For further information on submitting an application to the PHR Programme, please refer to the Stage 1 guidance notes and PHR supporting information. These can be found by clicking on the relevant commissioned call on the main funding opportunities page. This also includes closing dates and details about how to apply.