The findings of this overarching study of 10 BRACE evaluations in respect of research are presented with two distinct but sometimes overlapping audiences in mind:
- health services researchers
- health research funders
Implications for health services researchers
A strong theme throughout this study is the need to routinely take into account when designing, undertaking, and reporting on health services research and evaluation that many people are living with multiple long-term conditions. There is therefore a need for the proposed policy guidance referred to in Theme 6 to be translated into criteria that can be used by researchers to ensure that their studies are properly taking account of the needs of people living with multiple long-term conditions in much the same way that PPI, or research inclusion, are expected to be woven into health services evaluation proposals and protocols.104,105 The development of explicitly pragmatic research designs that reflect the likely user group(s) of an intervention have supported inclusion of otherwise excluded populations.28 Utilising the typology of evaluations (see Table 2) to situate studies or organise reviews can also help researchers account for if and how their work are taking into account people living with multiple long-term conditions; other suggestions for criteria are set out in Box 12.
- How might the proposed intervention in your evaluation affect people living with multiple (two or more) long-term conditions?
- Where is your study located within the typology (shown in Table 2) of evaluations of innovations for people living with multiple long-term conditions?
- Is this population group a central focus of the study and, if so, how will they be involved in its design, operation and reporting?
- If people living with multiple long-term conditions are not the central focus of the study, how will you explore the impact of the intervention on this group?
- Could you include specific research questions, broader samples, secondary data analysis or other approaches that would enable exploration of the implications for people living with multiple long-term conditions?
- Are people living with multiple long-term conditions and their carers involved in your patient and public involvement and engagement arrangements for the evaluation, including in scoping research questions, methods, outcome measures and dissemination?
- If you are measuring patient and/or carer experience, does this include the individual user’s perspective on how well their care is co-ordinated across sectors, organisations and services in respect of all the long-term conditions they may be living with?
These criteria could provide a specific multiple long-term conditions focus to prior advice and checklists proposed for the evaluation of innovations intended to improve health care, as in Bardsley et al.’s review106 of the experience of undertaking over 30 studies of community-based interventions intended to deliver more integrated care. That synthesis of evaluation practice warned in particular of the perils of assuming that a measure such as ‘avoided emergency admissions to hospital’ would demonstrate ‘success’ and the importance of tracking care across services and sectors, using linked data where possible.
A further implication for researchers of our overarching analysis of how the needs of people with multiple long-term conditions are attended to within evaluations is the importance of exploring diverse ways of undertaking patient and carer research within rapid evaluations. This includes how to identify the group of patients living with multiple long-term conditions, for example, through GP practice registers, routine hospital episode statistics data, national patient surveys, or NHS trust patient administration systems. Organisations, practices and professionals do not commonly tag or identify this group. It would seem to be a priority to address this, so that people with multiple long-term conditions (often a majority group within a patient population) can be assured that sufficient research, policy and practice attention will be paid to them and their needs.
Implications for health services research funders
Research funding needs to attend systematically to the needs of people living with multiple long-term conditions. It is therefore desirable that research funders explore how the needs of this population can best be threaded through research studies in a systematic manner that profiles their importance and ‘being the standard’. One example of how this might be addressed is the approach used previously by the NIHR HSDR Programme (and other NIHR programmes) to offer funding to commissioned research teams for enhancements known as ‘studies within a project’107 that address the needs of people with multiple long-term conditions. Another approach that could be taken would be to require that criteria like those set out in Box 12 be used when scoping and designing an evaluation of a service innovation, along with subsequent reporting of the impact on and experience of people with multiple long-term conditions.
This overarching study in itself points to the potential for substantial, multiyear analysis to be carried out on the basis of a series of shorter-term, focused evaluations, provided that there is resource and commitment on behalf of research commissioners to doing the synoptic thematic work. This enables another axis of learning over and above that which emerges from individual projects, and is arguably another application of the NIHR ‘studies within a project’ approach, being perhaps a ‘study across linked projects’ analysis.
Above all, we conclude that there needs to be a constant challenge to the single-specialty or -condition focus of studies. While such a focus will sometimes be justified, on other occasions there will be significant potential to explore the implications of a service innovation for a broader population including those with multiple long-term conditions, and to be alive to the consequences for this group.
We have identified a need for the health services research community to profile more assertively the evidence of what service innovations work, even if long known. While policy-makers may prefer to highlight the ‘shiny new’ service innovation, too often these are not sustained beyond a pilot phase, nor in a widespread manner. Innovations for people living with multiple long-term conditions could include ‘less exciting’ improvements that help to resolve the long-standing struggle in the NHS for better patient administration and communication. Too often, rather than explore why it has been so hard to make arguably unexciting but important changes, researchers are drawn by policy priorities to the as yet unproven ‘fad or fashion’.53 Skills in evidence synthesis and information science need to be more widely available to research teams, as evidence needed to scope a new study may be located within research from a different service or sector, international experience or evaluation material published in non-traditional formats.
A third implication for research funders, and indeed the broader health services research community, is to commission more implementation research to explore and (as appropriate to the innovation) support sustained spread of promising innovations beyond pilots and trials. There is a need to build ever stronger connections across funding programmes so that innovations can routinely draw on expertise in cultural and behavioural change, service development and improvement, adapting professional roles, and other organisational matters, to ensure the best possible chances of exploring sustainability and spread of innovation.
Finally, we list in Box 13 some areas of uncertainty related to the care of people with multiple long-term conditions that arose from our overarching study and that we share as possible topics for the commissioning of future research.