In our EHFF Newsletter, posted October 23rd, I promised a review of EHFF’s changing view of the future over the 15 years or so that EHFF has identified as a futures organisation. Here’s the first of the levers for change in the process of healthcare transformation that we had identified.
Even though better collaboration between patients and healthcare professionals made sense, and was backed up by scientific evidence, and despite the tireless work of the doyenne of patient centred care and patient empowerment (PE) , Dr Angela Coulter, it wasn’t until 2013, following lobbying within the European Parliament that the European Commission launched a project proposal, which a consortium of academics and NGOs won, and the EMPATHiE project resulted. EHFF was one of the main drivers behind this bid, in alliance with the Barcelona based Fundacion Avedis Donabedian (FAD). The project results helpfully teased out three overlapping components of PE, better health literacy for both professionals as well as citizens, shared decision making and self-management in chronic diseases (see: https://ehff.eu/the-empathie-project-empowering-patients-in-the-management-of-chronic-diseases/).
Other Commission projects, looking at cost-benefits and self-management methodology followed (see projects PISCE and PROSTEP which we were engaged in also, using the search box on the EHFF website). Since then, PE has become mainstream in research and policy implementation as a terminology but often used to describe quite different concepts (in one Horizon project EHFF was involved in, project leaders used the term to refer to adherence to prescribed medication, in another, to making technical data available to citizens (irrespective of their level of health literacy)).
In 2019 a collaboration between EHFF and Copenhagen University led to a paper: ‘A new understanding of health-related empowerment in the context of an active and healthy ageing’ (BMC Health Services Research (2019) 19:242). The context was, trying to get agreement on the concept for use across the various action groups of a huge European Commission project at that time, the European Innovation Partnership on Active and Healthy Ageing. This paper starts by looking back to the roots of the notion of patient empowerment, in the 1960s. We argued that the ‘power to’ movement had influenced health professionals’ practice. As a reaction to the prevailing paternalism in health care, there were as early as the beginning of the 1960s academics that challenged the prevailing social order. The key elements here were the principles of having choice over issues that affect one’s life, autonomy and pro-active involvement. Over the next few years healthcare started moving from a disease-centred model towards a more person-centred model and this helped challenge the concept of the passive patient.
However, what seemed to be missing (with the advantage of hindsight) was a wider view that saw the citizen and their relations with professionals not solely within the constraints of what might be called ‘sickness-care’ but in the context of health overall i.e. both maintaining good health (sickness prevention for example) as well as ‘healthcare’. We feel that this is the next stage of evolution for the concept because it puts health literacy specifically, from within the umbrella of patient empowerment, as a vital bridge between healthcare and prevention, on the one side enhancing the capacity for a person with illness (especially chronic disease) to co-manage their condition and on the other to encourage the citizen to take responsibility, through their know-how, in maintaining good health, hopefully throughout their life-course and with the support of appropriate professionals where needed.
Currently it seems that there is still a huge gap between efforts to enhance the engagement of the citizen in their own healthcare and efforts to engage citizens in the prevention of sickness and fostering healthy lifestyles.
Future of patient empowerment?
The trends that we have analysed in the last few years, via our sister organisation, the Centre for Empowering Patients and Communities (https://cempac.org/ ) suggest that the umbrella term PE has less value than the labels of the constituent parts, health literacy, joint decision making etc. which are less open to varying interpretations. What matters are the basic values underlying the concept, the citizen/patient having genuine agency within the healthcare context and their views being accordingly respected. How that develops depends very much on wider questions about the value systems in society as a whole and the future of health tech., both of which will be examined in subsequent instalments.
Looking to the future, two significant barriers to progress, especially in the field of promotion of healthy lifestyles, are the inflexibility of the attitudes of healthcare professionals and institutional politics, especially at a government level. On the former side, it’s difficult for the professionals and policy makers to think outside traditional roles (healthcare staff deal with acute and chronic disease at an individual level, public health staff deal with epidemics and maintaining good health, what you might call societal hygiene issues). The introduction of new roles within the health ecosystem would help here, but there are barriers here too, as will be discussed later on in this series.
On the latter side, compartmentalisation tends to prevent or dilute sensible adoption of better legislation and policy in this area. Two straightforward examples; research using health literacy measurement tools across European member states showed significant disparities in the level of health literacy both within states and between them (see: Sørensen et al, HLS-EU Consortium. Measuring health literacy in populations: BMC Public Health. 2013;13:948). What this study can be seen to illustrate is that, to improve overall population health literacy requires among other things, active collaboration between healthcare professionals and educators, something that rarely is possible given the configuration and cultural differences between the two groups.
The other example, which we may return to in a later piece, is how health related policy issues can be sidelined by political economic considerations and by ministerial delivery imperatives reducing the likelihood of collaboration across departments, even when such actions would be of societal benefit. Evidence based action on less healthy food products for example is frequently not acted upon through lobbying by industry with vested interests, using ‘promoting growth’ as a pretext.
Currently, the prospects for change in the short to medium term seem gloomy. This is no reason to stop promoting evidence and commonsense based changes, but we have to retain realistic expectations for the future.