AN ACADEMIC RESEARCHER’S VIEW OF SELF-CARE R&D PRIORITIES

With the increasing pressure on the Welfare State in the UK and other European countries, policy makers are increasingly looking to Self-Care as a means to empower individuals to live longer and healthier lives, whilst helping curb unnecessary spending and over-reliance on health systems. Yet self-care remains a broad and somewhat nebulous concept to most as it covers a wide spectrum of ideas and activities ranging from cognition and health literacy, to empowerment and evidence-based decision making and rationing of resources. This makes self-care an exciting but also a challenging area to study.

Self-care has been extensively defined and considered by various academic groups and conceptualised from several different perspectives. Paradoxically, the academic exercise of understanding self-care as a broad concept has not as yet resulted in a definitive canon of evidence that makes the absolute case for self-care and its realised benefits in the real-world setting. It is therefore necessary to move away from self-care as a purist academic pursuit to an applied field of research.

Research into self-care necessarily implies a mixed methods approach that takes into account the study of contextual factors and microdata using a combination of qualitative and quantitative research methods, whereas the multidisciplinary nature of self-care illustrates many levers that could be used to affect change. However, pilot initiatives proposing a change in more than one variable at a time are not recommended because this confounds real scientific study, thereby resulting in weak or non-generalizable conclusions. How then can we consolidate these challenges between theory and practice to advance our understanding and application of self-care in the contemporary setting?

This paradox coupled to existing gaps in our knowledge illustrates some R&D priorities for self-care in four broad categories:

1. Applied research that makes the absolute case for self-care. Research should advance our understanding of how self-care can benefit the wider health economy, to include health economic modelling and cost-benefit analysis as well as a means to improve tangible and intangible benefits (i.e. health spending; Quality Adjusted Life Year (QALY); improved quality of life; improved health and wellbeing overall etc.). Because self-care is a complex area of study, the body of evidence should draw from various example and initiatives across a range of different settings (i.e. community care, primary care setting etc.,) involving self-care for patients with LTCs and otherwise healthy individuals through the life span of an individual as opposed to studying one disease category for one age group in only one setting.
2. Development of a pragmatic framework to support the evaluation of Self Care interventions. There currently does not exist a validated framework that supports the objective evaluation of self-care pilots and interventions. Because self-care is multidisciplinary, a suitable framework should enable the evaluation of various categories and dimensions, including PESTLE, econometric analysis and quality of life indicators. A suitable evaluation framework could also support commissioners in the early design stages of self-care interventions by highlighting a clear requirement for meaningful data collection using suitable data collection instruments to enable objective evaluation of outcomes following implementation.
3. Identification of extant barriers and drivers to the widespread adoption of evidence-based self-care praxis. This could be done by investigating the role of digital health, eHealth and mobile health interventions on individual lifestyle choices and behaviours tenable to improve health literacy, and the practice of self-care for improved mental health and wellbeing for example. Dissolving extant barriers will support the folding of self-care into the culture and fabric of society such that its application becomes a legitimate and conscious lifestyle choice we feel empowered to make as active and cognizant members of the community.
4. Policy research and realignment of incentives to support self-care initiatives that are considered from the perspective of funding of outcomes as opposed to activities. Research streams could potentially focus on how best to consider self-care holistically to promote a ‘health in all policies’ approach by configuring and investing in the right infrastructure, including urban design factors that promote effective self-care.

Addressing these research priorities will ensure that self-care can shift away from purist academic thinking to a translational research model where it is tested as an applied concept. However, for this to happen the prevailing attitude and conceptions of health commissioners and policy makers needs to shift to enable a sustained investment into complex self-care interventions and proof of concept pilots to determine how best theoretical self-care approaches could posit in the real-world setting.

To this end, the Imperial College London Self Care Academic Research Unit (SCARU) was established in collaboration with the Self Care Forum and the International Self Care Foundation to support a progressive research agenda in the domain of self-care. SCARU aims to become a leading academic base for self-care, and will work with other national and international research partners, commissioners of health, technology leaders and patient groups to advance our understanding of self-care as an applied concept fit for 21^st Century society.

Dr Austen El-Osta

Austen El-Osta is Acting Director of the Self Care Academic Research Unit (SCARU), Imperial College London School of Public Health.