Chapter II. Existing EU policy on self-care
Chapter II. Existing EU policy on self-care
The first step towards a well-connected and well-informed route of analysis leading to future recommendations and policy options is to map out existing policies, understand existing links and where they are situated in the policy cycle: agenda-setting, policy formulation, legitimation, implementation, evaluation, policy maintenance, succession or termination.
A list of related policy dimensions leads to a proper evaluation of trade-offs, and helps to explore unintended consequences, not only direct impacts. According to Canoy, Lerais and Schokkaert such a mapping ‘offers a frame of reference for organizing the reflection on the policy proposal among the various organizations and social groups’ (Canoy, Lerais, Schokkaert, 2010, p. 393).
Figure 3 maps existing and related EU policies on/to self-care, namely: health literacy, access to healthcare, patient safety, self-medication, long-term conditions and patient empowerment. An analysis of the evolution behind each of these policies can place them at a more advanced or less advanced stage within the policy cycle.
Figure 3. Existing EU Policies and respective actions on Self-Care
Table 1. Existing policies: instruments, policy cycle, stage of development
|Related policies||Main instruments||Policy cycle||Stage of development|
|Health literacy||EU projects (HLS-EU, IROHLA, EIPAHA)||Agenda-setting||Incipient|
|Self-care and long-term conditions||EU project||Agenda-setting||Incipient|
|Patient empowerment||EU tender, EU projects||Agenda-setting||Incipient|
|Access to healthcare||Legislative (Cross-Border Healthcare Directive, Racial Discrimination Directive)EU platforms||Policy formulation||Medium|
|Patient safety||LegislativeDeclarations (capacity and consensus building)Joint Action, EU projects||Implementation – Policy succession/maintenance||Advanced|
|Self-medication||LegislativeSelf-regulatory process (CSR)||Policy succession||Advanced|
Table 1 identifies the main instruments driving policies forward to advance in their cycle but it does not take into account the interaction between these policies. To do so, it is necessary to see the policy-making system as a collection of numerous policy cycles and due to this predictability of outcomes decreases.
Figure 3 maps to a great extend the the full range of initiatives under each policy related to self-care. Health literacy, long-term care and patient empowerment are at an incipient stage of the policy cycle where different projects identify problems and give an account of needs and ways forward towards policy formulation. Access to healthcare is part of a broader framework and it is a policy that has gained much terrain at EU level but lacks implementation. Patient safety is at a more advanced policy stage on the one hand due to existing legislation (soft law) and on the other due to the high interest received from member states. Last but not least, self-medication is the predecessor of self-care stripped out of activation and learning mechanisms of management and with a view of enforcing what delimits prescription and non-prescription medicines and their governance. It is situated at an advanced degree of development due to legislation and self-regulatory initiatives.
II.1 Degree of connectivity
II.1.1 Perception of self-care
Given the different stages of development, the logical question is to understand the degrees of connectivity/potential linkages between all the policy areas and their role in self-care. What at policy level is the fine grained distinction between self-care and self-management? How would patient empowerment and health literacy play a role to improve self-care rates in the EU and what added value does it have for EU level action? Last but not least how can the patient safety and access policy frameworks bring their contribution and what are the necessary facilitators?
Patient empowerment, self-management, health literacy, self-medication and access to healthcare all have a direct contribution towards better self-care. Patient safety at EU policy level through consensus between member states and stakeholders, indirectly impinges on self-care through such mechanisms as pharmacovigilance and self-care directly benefits from better access via tools that: inform, enable and facilitate the patient in the healthcare pathway.
Self-care is defined as “the actions people take for themselves, their children and their families to prevent and care for minor ailments and long-term conditions and maintain health and well-being after an acute illness or discharge from hospital” (UK Department of Health, 2005). A policy brief written for the WHO European Ministerial Conference on Health System in 2008, Where are the patients in decision-making about their own care?, states that it is vital to support these actions, as they already are a prevalent form of health care.
The Eurobarometer Qualitative Study on Patient Involvement (2012) asked both patients and practitioners about their views on self-care. The study concluded: ‘the findings from this qualitative study indicate that patient involvement, in the sense of having patients at the heart of the healthcare process (i.e. patient-centred care), seems poorly understood by many professionals and patients across the EU, with only limited concrete ideas and activities which substantiate the concept in real healthcare practices’.
‘Patient involvement’ was sometimes interpreted as something practitioners did to patients rather than something patients did themselves: according to practitioners, it meant informing patients and explaining diagnoses, conditions and treatment options, as well as educating patients about a healthy lifestyle.
It was reported that patient involvement in healthcare had increased in many countries over the last ten years. Practitioners described patients playing a greater role in prevention, and searching for information about symptoms, conditions and treatments on the Internet.
Being well-informed about health was linked to patients’ greater involvement in health care. In all countries, practitioners and patients reported that patients were now better- informed due largely to the development of the Internet. This was accessible to virtually all patients interviewed. Almost all patients had used the Internet to access healthcare information, and a few had found support in online patient forums. Patients rated their ability to be discerning and responsible about information found on the Internet more highly than practitioners did.
Self-care was widely associated with “following doctors’ orders”, the issue of compliance which is seen throughout the results of this study. Some chronic patients reported more active self-care. Respondents were asked about the role of patients in ‘self-care’ in either treatment or recuperation. There was near-unanimous agreement across all countries, amongst both practitioners and patients, that it is self-evident that persons/patients have a role in ‘self-care’.
Self-care was presented to respondents as follows: “You are given a role in “self-care” in the treatment or in the recuperation period (for example: doing exercises, taking medication)” and respondents usually described it in terms of medical compliance – patients were often described as being involved in self-care in terms of keeping healthcare appointments, taking medication or carrying out exercises prescribed by physiotherapists. In other countries, self-care was described in terms of following a healthy diet and lifestyle.
II.1.2.The management of self-limiting ailments
While at first sight the difference between self-care and self-management is not apparent, it is useful to propose that self-management refers to long term conditions whereas self-care is associated with the treatment of minor ailments. In this sense, it is still important to draw a parallel and see where transferability provides added value as models of self-management are more developed and ingrained in practice.
- Transferability of proven self-management models of chronic conditions towards self-care for minor ailments
According to the policy brief, Where are the patients in decision-making about their own care?, 30 percent of Europeans suffer from long-standing illnesses which makes the management of these diseases a priority. When people with chronic diseases seek help, they need support with enhancing their self-management skills. This is why literature suggests that it is vital to promote self-reliance. The goal of the self-management support is to enable patients to manage their illness, carry out their normal roles and activities and manage the emotional effects of their illness. Policy-makers are now seeking methods to shift resources to the community in order to manage more effectively the treatment of chronically ill patients. The Chronic Care Model, where people are empowered to manage their own health by providing them with effective self-management support for long term health problems is an example of this kind of action.
Patients with chronic diseases are proven to benefit from learning from others with the same chronic condition (lay-led self-management). These kind of often volunteer-run self-help programs can, for instance, raise awareness in knowledge, coping behavior and also stimulate short-term improvements in symptoms.
As such the transferable aspect from the Chronic Care Model to a ‘Self-Care Model’ refers to the ‘productive interaction’ end result to be achieved: on the one hand, an informed, activated person/patient and on the other hand a prepared, proactive, practice team be it within the healthcare system which is most of the case for patients with chronic conditions or more widely the community, the pharmacist, the social carer or family which is the case for the self-care of minor ailments. Please see figure 4 below that shows the visualization of the Chronic Care Model.
Figure 4 The Chronic Care Model
Of course self-care should always address cases where the intervention of a doctor is necessary in order to avoid complications arising from self-misdiagnosis of a minor ailment.
- In conclusions, we retain the ‘productive interaction’ concept from the Chronic Care Model.
Furthermore, active education and teaching practical skills have proven to be most productive to achieve effective self-management.
Written information on its own is rarely effective with changing people’s behavior or producing better health outcomes. Instead, active education and teaching practical skills are found to be productive. This kind of approach can be delivered by computers; interactive applications are shown to increase patient knowledge, abilities and health behavior, while patients also feel they receive satisfactory social support.
A study showcasing diabetes management highlights that efficient self-management education programs are the ones that are intensive and longest with duration, while they are also integrated into the health care system and reinforced by health care professionals (Deaking et. al., 2005). The policy brief states that effort should be placed on providing opportunities for patients to develop practical skills and gain confidence in their abilities to manage their own health. In order to achieve this, participative learning styles should be preferred over traditional didactic methods.
- These participative learning programs may be extended towards enhancing self-care skills for minor ailments. As such, we retain from this example, the need for participative education programs within the community.
- Health literacy
Further to the transferability of ‘participative learning’ and ‘productive interaction’ concepts from the area of self-management to that of self-care for minor ailments, EU health literacy and patient empowerment policies play a significant role to the development of a future EU self-care policy for minor ailments.
Health literacy refers to the ability to access, evaluate, understand and use health information in order to make sound decisions about health and healthcare. It has been recently defined as “people’s knowledge, motivation and competencies to access, understand, appraise, and apply health information in order to make judgments and take decisions in everyday life concerning healthcare, disease prevention and health promotion to maintain or improve quality of life during the life course.” Low health literacy is associated with health inequalities; it tends to result in weaker health and poses a bigger risk for hospitalization. Although more research is needed on the costs of limited health literacy, these have been estimated to be 3-5% of total healthcare cost at system level.
To make informed decisions about their health and treatment, it is vital that people can access all the relevant information they need in an easily understandable format. The health literate person is then able to process, appraise and apply the information to her or his own personal circumstances. This is usually defined as “functional” health literacy. More advanced levels of health literacy are “interactive” health literacy (the cognitive, literacy and social skills that enable active participation in healthcare) and “critical” health literacy – the ability to critically analyse and use information to participate in actions that overcome structural barriers to health.
The European Health Literacy Study (HLS-EU) recently showed that limited health literacy is a challenge in several countries in Europe: on average, 47% of the respondents across 8 countries had limited health literacy. The levels differed considerably between the countries surveyed, but the research showed that health literacy is a problem not only for particular vulnerable groups, but also for the general population and society at large.
People with low health literacy skills can be targeted with special information and education campaigns. Three key objectives can be found in health literacy interventions: providing information and education, encouraging the use of health care resources and tackling health inequalities. Health literacy is quintessential to patient empowerment and it has been proven to bring savings to health costs.
However, health literacy is not only a question of individual skills: it is a relational concept and a systems issue. Health literacy implies enhancing the interaction between people and their environments and addressing the power balance between service users and providers, or laypeople and specialists. Developing health literate settings – whether in healthcare or in education, employment or media – is vital. (WHO, 2013)
- Patient empowerment and self-care
The Epposi Self-care barometer 2013 was a survey carried out in 10 EU countries which asked respondents how they perceive the importance and benefits of self-care in managing and preventing their conditions and diseases, including minor ailments. It also asked whether respondents feel responsible for their own health and if they feel confident in doing so. The main findings were:
- Nine out of ten respondents see self-care as a vital part of the management and prevention of chronic conditions and diseases, including minor ailments
- Most respondents view improved health and quality of life, prevention and management of their conditions and diseases as the benefits of self-care, followed by greater independence, productivity and individual satisfaction
- Consumers are willing to take care of their own health and the majority agree that it is their responsibility to do so. The highest score for this is in Northern countries
- However, less than one in five respondents feel very confident to take care of their own health, ranging from 17% in Northern countries to 11% in the Eastern countries
- Health literacy is pivotal. Better knowledge, skills and capacities for self-care are closely linked to confidence and willingness to undertake responsibility for their own health
- The findings confirm the diversity of available information sources for self-care but healthcare professionals still play a fundamental role. The lower the perceived knowledge, skills and capacities for self-care, the higher the dependence on healthcare professionals for information.
The policy implications discussed in the recommendations of this report will be referred to in the final chapter (VI), below.
The findings of the study: Empowering patients in the management of chronic diseases (2014) (EMPATHiE) help to clarify the relationship between health literacy, self-care and self-management and patient empowerment. The study defined the empowered patient as having control over the management of their condition in daily life. They take action to improve the quality of their life and have the necessary knowledge, skills, attitudes and self-awareness to adjust their behaviour and to work in partnership with others where necessary, to achieve optimal well-being. Empowerment interventions aim to equip patients (and their informal caregivers whenever appropriate) with the capacity to participate in decisions related to their condition to the extent that they wish to do so; to become “co-managers” of their condition in partnership with health professionals; and to develop self-confidence, self-esteem and coping skills to manage the physical, emotional and social impacts of illness in everyday life.
In this context the model had three components: education, self-management and shared decision making. An important point made was that education included both greater health literacy on the part of the patient with chronic illness but also ensuring that healthcare professionals had the requisite skills to foster effective self-management and shared decision-making. As was discussed earlier, on the principle that care is on a continuum from healthy lifestyles through minor conditions to chronic illness and in-hospital care, the same principles can copy across from self-management of chronic conditions to self-care in minor conditions. There seems to be a very close relationship between the concept of self-management and self-care, especially in the field of chronic illness. In less severe or minor conditions, maintaining wellness/prevention seems more of an issue. What the EMPATHiE model helps clarify is the inter-relationship between health literacy, education of professionals and joint decision-making. As will be commented on later, for chronic care, the last mentioned process tends to be between medical professional and patient, for minor conditions it might be between patient and another professional such as a pharmacist.
The study had four phases, a literature search on best practices in patient empowerment, a multi-stakeholder survey across MS on barriers and facilitators for empowerment, using both focus groups and an on-line survey, a study of transferability of good practices, and development of potential scenarios for future EU collaboration on the subject.
The majority of the high quality systematic review identified dealt with examples of good practice for patients with diabetes, chronic cardiovascular and chronic respiratory disease. Half of these related to self-management and the majority of the rest were to do with communication (education) and health literacy. Out of the study of barriers and facilitators, the top five issues identified were: that the professional has enough time for the patient; that the former has a holistic view of health, that health professionals work together and that healthcare provision is well coordinated. Finally, that the patient feels responsible for his/her health.
The study of transferability of good practices needs to be seen in the context of the subsequent study of transferability carried out as part of the cost-benefit analysis tender which was the predecessor of and complement to this present study. The former transferability WP looked in depth at context, content and process both at the initiating site and the place where the practice was to be transferred, to identify barriers to effective transfer.
Finally, and of direct relevance to Chapter Vl of this report, following an extensive stakeholder consultation process, four scenarios were developed from the results, which included the key feasibility criteria (e.g. effort to start collaboration, perceived costs, EU added value and perceived risks). These four scenarios were rated to be capable of implementation at least partly and were seen as likely to be at least moderately effective in achieving patient empowerment. Moreover, all scenarios were rated as able to provide at least medium or high “EU added value”.
The four scenarios are the following:
- The informed patient
Ensuring that patients and citizens have easy access to information and health literacy covering all aspects of health, including prevention, treatment options, evidence-base for different treatments, and lifestyle advice
- New professional skills, knowledge and attitudes
European collaboration focuses on ensuring that health professionals have the right skills, knowledge and attitudes to practice patient-centred healthcare, providing an enabling context for patient empowerment.
- Self-management supported by technology
eHealth solutions, such as telemedicine, electronic health records and remote monitoring are mainstreamed into an integrated care approach. European collaboration focuses on developing and implementing ICT resources and tools for patients and professionals to support patient empowerment through self-monitoring and self-management
- Transparent quality data for patient choice
European collaboration focuses on facilitating patient choice through making available transparent and comparable information on quality of care.
The report concludes that interventions targeted to patient empowerment tend to carry out positive results and that a stronger evaluative work at meso and macro level initiatives is desired.
Analyzing practice success and failure factors is crucial. It is also recommended that future work at European level could, for instance, focus on education of patients and the public and on an improved education of healthcare professionals. Furthermore, an EU level collaboration among vital stakeholders (patients, consumers and health professionals) and a European network for facilitating patient empowerment could be beneficial.
The study confirms that there is a strong interest among stakeholders to collaborate on patient empowerment at a European level. From the EU collaboration, stakeholders wish concrete actions, actions which preferably are linked to the existing initiatives. A European strategy and action plan on patient empowerment as a starting point is welcomed by the vast majority of stakeholders, as well as a common reciprocity of best practices and tools, development of common indicators and an improved evidence base concerning patient empowerment. The current initiatives (e.g. PaSQ JA and European Innovation Platform on Active Ageing) enable synergies and the contribution from the work that is already underway.
A base to build effective strategies for informing and empowering patients and involving them in their own health care is set, even though there are those who still question the financial benefit of such policies, despite the substantial body of work which confirms the improvement of health outcomes associated with patient empowerment. A recently commissioned report from the Expert Panel on Effective Ways on Investing in Health (EXPH) on ‘the Future EU Agenda on quality of health care with a special emphasis on patient safety (2014)’ identified five core aspects of health quality, of which one was ‘person/patient centeredness’. Their comments on this topic seem relevant to the theme of this report and will be quoted at some length as they cover a number of the issues so far addressed here.
‘Patients, families and people, should have the possibility to actively participate in the process of care and self-care, particularly for chronic conditions, health promotion, disease prevention, and patient safety activities. The patients (the persons, if we consider that a person can have health conditions that can be improved through their life) are, in this respect, active participants in the process. So, the services have not only to be developed “for” individuals and populations, but also “with” and “through” individuals and populations. It is not only a question of “expectations”, but also of empowering and increasing the capacity of individuals/patients to be able to care for themselves in partnership with professionals (e.g. in relation to diabetes, mental disorders, ageing with autonomy, etc.) and to achieve the “goals” in their lives that are relevant to them.’
‘This new paradigm, derived from the best education of people, and the demographic and epidemiological transitions, must not be confounded with the inappropriate shifting of responsibility to patients, or with the reduction of public health resources in times of crisis. Nor is it that the patient has to assume the role of health professionals, or that computer programmes (apps) might replace health services of high quality. Better informed and empowered patients (user, person) will be able to maintain optimal well-being and will manage their health condition more effectively in the context of everyday life, with appropriate support of health professionals working in a well-funded and structured health care system. This could also imply the option to choose not to receive the treatment proposed. The empowered patient may choose not to participate (be involved) leaving decisions to the health professionals or, in other circumstances, the empowered patient may choose the ‘no treatment’ option (provided their conditions enable them to do so).’
While empowerment is thus promoted it can be seen that health literacy, a key component, is fundamental. As Coulter et al (2008) conclude ‘because health literacy is central to enhancing the involvement of patients in their care (including self-care, in this study), all strategies to strengthen patient engagement should aim to improve health literacy. If the problem of health literacy is not dealt with inequalities could widen. Knowledge and understanding improve when health professionals engage patients actively in their care, leading to better outcomes.’ As we shall see later, for self-care in minor conditions such professionals might not always be doctors.
II.1.3 Patient safety policy contribution to self-care: direct communication with member states
Both patient safety and access policies at EU level offer an existing infrastructure to link self-care for minor ailments. The Expert Platform on Patient Safety and Quality of Care is such an example as it offers a forum of communication with member states and it already discusses related areas such as patient empowerment. Self-care for minor ailments could be planned within this forum and with direct input from member states and European stakeholders present. The Council conclusions of 1 December 2014 noted that ‘patient empowerment and involvement are recognized as an essential part of good quality and safety of care and require an effort by Member States to exchange cross-country knowledge and effective tools;’ ( EPSCO Council Conclusions, December 2014, p.3, par 22).
II.1.4 Self-medication policy and self-care
A report of the Working Group on Promoting Good Governance on Non-Prescription Drugs in Europe issued in June 2013 describes in depth the role of competent authorities, pharmaceutical companies, consumers and patients, and health professionals in facilitating uptake and proper use of non-prescription medicines. Self-medication is an important aspect of self-care in general and as such the matter is to facilitate access to medicines and inform persons/patients when it is necessary to self-medicate.
In terms of access to medicines, when member states consider a switch from a prescription to a non-prescription medicine, the report recommends five main elements to take into account: 1. safety, ease of use and possibility to monitor the switched products; 2. responding to the needs/demands of citizens and health professionals, in particular, in terms of patient empowerment, timely access, access to improved treatments and improved quality of life 3. an agreement of healthcare professionals; 4. a clear beneficial impact on public health; 5. fulfilling unmet needs and addressing conditions that would otherwise remain untreated (2013, p. 38).
The report also recommends further pharmacovigilance in case of switches, early collaboration with healthcare professionals, the need for safety evidence as well as knowledge and information of persons/patients concerning the correct use of the medicine.
- Horizon 2020
In the current financial programming for research, Horizon 2020 the allocated financing in the area of self-care is around 7% of the overall budget under health. This is divided as follows:
- PHC 26 – 2014: Self-management of health and disease: citizen engagement and
- PHC 27 – 2015: Self-management of health and disease and patient empowerment supported by ICT
- PHC 28 – 2015: Self-management of health and disease and decision support systems based on predictive computer modelling used by the patient him or herself
While results from these projects may not be available for some time, it is clear that such work potentially complements the policy directions sought here and also helps to bridge the gap between conventional health approaches and the drive to develop innovative use of eHealth tools to change the models of healthcare delivery for the better.
- Third Health Programme
The Third Health Programme 2014-2020 allocates 449.4 million Euros towards four main objectives out of which three are relevant for self-care:
- Promote health, prevent diseases and foster supportive environments for healthy lifestyles taking into account the ‘health in all policies’ principle,
- Contribute to innovative, efficient and sustainable health systems,
- Facilitate access to better and safer healthcare for Union citizens.
For 2015, about 4.1 million Euros could also contribute to the promotion of self-care or intermediate goals:
- Prevention of frailty – 3.5 millon Euros (action with member states authorities)
- Economics of prevention – grant to OECD – 600.000 Euros
- Comparative assessment of the accessibility of healthcare services (Thematic priority 4.3. of Annex I to the Programme Regulation).
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 Austria, Bulgaria, Germany, Greece, Ireland, Netherlands, Poland and Spain.