Box 1.
Workshop discussions summary
MLTC clusters |
In recognition of the tensions between system and patient demands, some kind of stratification or ‘clustering’ of patients was generally preferred by participants as a way of prioritising or differentiating care requirements. However, concerns about ‘actionable clusters’ were paramount, likely taking more of a biopsychosocial approach than currently prevalent in the MLTC clustering literature, where clusters were felt to be largely observational, with findings dependent on the specific statistical method employed. It was not always obvious how these clusters could then be employed to inform clinical practice and outcomes. For example, participants discussed potential for including social circumstances and needs rather than conditions alone. Even separating ‘risk factors’, from ‘symptoms’, from ‘complications’, from ‘individual conditions’ was not considered a straightforward task, either conceptually or using existing data (for example, for targeting specific clusters of patients or intervening at an appropriate point in a predicted trajectory). Improving understanding of clinically relevant clustering might require recording of socioeconomic and lifestyle factors that are currently lacking in many healthcare records, and there was concern about the time and resources available for collecting these data. |
Financial and non-financial incentives for managing MLTC |
Financial incentives were outlined as key for driving provider behaviour, including data collection and system changes supporting clinical practice, for example, extended consultations. Additionally, indicators and standards (for example, treatment targets and clinical guidelines) recorded at system level were perceived as having potentially helped to drive system change previously, particularly if led from a national regulatory body. There was therefore speculation as to whether it was possible to think about which set of indicators might be most useful to monitor and incentivise for MLTC patients. |
Primary care as part of management of MLTC across a wider system |
The theme of ‘complexity’ also carried through to discussions of interactions with the wider care system. Researching the role and amount of responsibility primary care should have in ensuring prevention, and how the primary care agenda should fit with other parts of the system, such as community assets, social prescribing, and the interface with secondary care, were also debated, together with the need to ensure continuity across different formal and informal sectors. |
Measuring appropriate outcomes for MLTC patients |
Similar complexity was also identified in terms of patient outcomes; for example, the potential for needs and goals to vary substantially between individual patients. The ability of conventional measures of benefit, such as health-related quality of life, to capture MLTC-relevant outcomes was questioned. |
Capturing complexity with appropriate study designs |
Optimal study designs were also considered, noting the need for a wider range of comparative study designs than randomised controlled trials that can adequately capture the complexity and variation. Multicomponent ‘system of care’ interventions with interacting elements, increasing use of observational quasi-experimental studies, ‘adaptive platform trials’, systems science approaches, and realist methods were all put forward as potential alternatives to deal with complexity. |
MLTC = multiple long-term conditions.