TY - JOUR
AU - M. A. Durand
AU - B. Erens
AU - G. Wistow
AU - T. Hoomans
AU - T. Manacorda
AU - N. Mays
A1 - 
AB - ObjectivesBetter integrated health and social or long-term care is high on government policy agendas in many countries. In England, successive pilot programmes, with related national evaluations, have been introduced to better integrate care to meet the needs of people requiring multi-agency help. However, researchers evaluating such programmes both in England and internationally face a daunting number of challenges produced by service delivery and research regulatory systems. This paper analyses the challenges encountered in seeking to undertake a prospective quasi-experimental evaluation of the impacts of community based multi-disciplinary teams (MDTs) on patient experience and outcomes, as part of a wider evaluation of the Integrated Care and Support Pioneers programme. The paper also identifies a number of general lessons for research commissioners, study site participants, and those tasked with undertaking such evaluative research.MethodsWe reviewed our research activities and timelines from the start of the evaluation. We created a narrative history - using reports to the funder, applications to research and ethics regulatory bodies and correspondence with Pioneer sites, regulatory bodies and data providers - to describe the challenges faced and our approaches to attempting to mitigate them.ResultsWe experienced four key challenges: (1) unrealistic commissioner research specifications; (2) negotiating with and recruiting multiple organisations and services at potential study sites; (3) navigating research ethics and governance systems; and (4) recruiting participants for primary data collection and obtaining (with their consent) their linked routine service use data. The first two challenges resulted from the lack of shared understanding of evaluation feasibility and constraints between local health and care system actors and national level commissioners of evaluation, plus no clear incentive for local sites to participate. The third and fourth challenges were the product of multiple, protracted, and unnecessarily risk-averse research approval processes which affected both the nature and quantity of the data we could collect.ConclusionsWe recommend that major changes are made to the regulation of policy research to enable more robust evaluation to take place and that disproportionately high levels of risk aversion in approval processes for non-interventional, low-risk studies are addressed. In addition, the evaluation commissioning process needs to be far better informed at an early stage about which elements in programmes can feasibly be evaluated before research specifications are advertised.
AD - Associate Professor, Policy Innovation and Evaluation Research Unit, Department of Health Services Research and Policy, London School of Hygiene and Tropical Medicine, London, UK.; Visiting Professor in Social Policy, Care Policy and Evaluation Centre, London School of Economics, and Honorary Professor, London School of Hygiene and Tropical Medicine, London, UK.; Assistant Professor, Policy Innovation and Evaluation Research Unit, Faculty of Public Health and Policy, London School of Hygiene and Tropical Medicine, London, UK. RINGGOLD: 156606; Research Fellow, Policy Innovation and Evaluation Research Unit, Faculty of Public Health and Policy, London School of Hygiene and Tropical Medicine, London, UK. RINGGOLD: 156606; Professor of Health Policy and Director, Policy Innovation and Evaluation Research Unit, Department of Health Services Research and Policy, London School of Hygiene and Tropical Medicine, London, UK.
AN - 40682523
BT - J Health Serv Res Policy
C5 - Education & Workforce
CP - 1_suppl
DA - Jul
DO - 10.1177/13558196251349351
DP - NLM
ET - 20250719
IS - 1_suppl
JF - J Health Serv Res Policy
LA - eng
N2 - ObjectivesBetter integrated health and social or long-term care is high on government policy agendas in many countries. In England, successive pilot programmes, with related national evaluations, have been introduced to better integrate care to meet the needs of people requiring multi-agency help. However, researchers evaluating such programmes both in England and internationally face a daunting number of challenges produced by service delivery and research regulatory systems. This paper analyses the challenges encountered in seeking to undertake a prospective quasi-experimental evaluation of the impacts of community based multi-disciplinary teams (MDTs) on patient experience and outcomes, as part of a wider evaluation of the Integrated Care and Support Pioneers programme. The paper also identifies a number of general lessons for research commissioners, study site participants, and those tasked with undertaking such evaluative research.MethodsWe reviewed our research activities and timelines from the start of the evaluation. We created a narrative history - using reports to the funder, applications to research and ethics regulatory bodies and correspondence with Pioneer sites, regulatory bodies and data providers - to describe the challenges faced and our approaches to attempting to mitigate them.ResultsWe experienced four key challenges: (1) unrealistic commissioner research specifications; (2) negotiating with and recruiting multiple organisations and services at potential study sites; (3) navigating research ethics and governance systems; and (4) recruiting participants for primary data collection and obtaining (with their consent) their linked routine service use data. The first two challenges resulted from the lack of shared understanding of evaluation feasibility and constraints between local health and care system actors and national level commissioners of evaluation, plus no clear incentive for local sites to participate. The third and fourth challenges were the product of multiple, protracted, and unnecessarily risk-averse research approval processes which affected both the nature and quantity of the data we could collect.ConclusionsWe recommend that major changes are made to the regulation of policy research to enable more robust evaluation to take place and that disproportionately high levels of risk aversion in approval processes for non-interventional, low-risk studies are addressed. In addition, the evaluation commissioning process needs to be far better informed at an early stage about which elements in programmes can feasibly be evaluated before research specifications are advertised.
PY - 2025
SN - 1355-8196 (Print); 1355-8196
SP - 11s
EP - 24s+
ST - Evaluating health and social care integration in England's Pioneer programme: The challenges of undertaking research in service delivery and research regulatory systems that are not fit for purpose
T1 - Evaluating health and social care integration in England's Pioneer programme: The challenges of undertaking research in service delivery and research regulatory systems that are not fit for purpose
T2 - J Health Serv Res Policy
TI - Evaluating health and social care integration in England's Pioneer programme: The challenges of undertaking research in service delivery and research regulatory systems that are not fit for purpose
U1 - Education & Workforce
U3 - 10.1177/13558196251349351
VL - 30
VO - 1355-8196 (Print); 1355-8196
Y1 - 2025
ER -