Chapter IV. Socio-medical environment around the person’s/patient’s needs
Chapter IV. Socio-medical environment around the person’s/patient’s needs
This chapter is organized around three main areas that are seen to constitute the medico-social environment in which self-care takes place. Firstly, having asked patient and consumer representatives about their attitudes and wishes regarding self-care, the other stakeholders were consulted, as a means of complementing this data. Second, a short section on the internet and role of new eHealth and mHealth tools is added, for the sake of completeness, although the impact on the healthcare system and citizens’ health and behaviour of these potentially important factors is difficult to evaluate at this time. Finally, a brief review of current policy trends which may influence the direction of subsequent policy recommendations in Chapter Vl.
The key outputs from the survey of patients and consumers relate to their agreement with the proposed definition and perception of the barriers to self-care (Q6/8 and Q.12 in the survey. See Appendix). Secondly, their perception of the role of education in furthering self-care and who or what might facilitate it (Q.18/9). Thirdly, tools to ensure health information is based on evidence and what is needed to promote an environment that encourages self-care (Q 23 and 24) and finally the question (Q.25) of how the self-care needs of vulnerable, disadvantaged or hard to reach population groups could be addressed.
These issues formed the basis of the consultation described below and were fed into the focus group session, the minutes of which are also contained in a second Appendix.
A consultation with insurers, healthcare professionals and all stakeholders that are in the immediate environment and need to support persons’/patients’ needs and/or may be affected by the necessary adaptations to enhance self-care, revealed similar views in terms of target groups and generally there is agreement as to what a supportive environment would include.
The stakeholders consulted were twofold. First we consulted stakeholders that were part of a platform of experts on self-care that was set-up during the EU tender on the promotion of self-care systems in the European Union (PiSCE) (Table 1). Their views were assimilated into the development of the three WPs via the process of communication described in the inception report (pp.21-23) and in the final report. Second, we consulted other relevant stakeholders via a focus group. These were outside the platform but their organization may play a role in the promotion of self-care (Table 2).
Table 1. Platform of experts
|2||Dr David Somekh||EHFF|
|6||Haske van Veenendal||CBO|
|7||Dr Jacques de Haller||CPME|
|8||Charan Nelander||DCHE, ENOPE|
|12||Ales Bourek||Masaryk University|
|14||Jacqueline Bowman||Third-i Stakeholder Engagement|
|15||Alan Quirk||Royal College of Psychiatry|
|16||Bo Bergman||Chalmers University|
|17||Kristine Sorensen||Maastricht University|
|20||Herwig Ostermann||Austrian Institute of Health|
|23||Dr. Danica Rotar Pavlič||EFPC|
|24||Kristina Zgodavova||Technical University of Kosice|
Table 2. Focus group participants
|Luc Besson||European Pharmaceutical Students’ Association|
|Bianca Ferraiolo||Active Citizenship Network|
|Dr Valentina Hafner||Independent consultant for Safety of Patients and Services|
|Judith Liddell||European Federation of Dieticians|
|Athanasios Vaiopoulos||European Medical Students’ Association|
|Frank Vanbiervield||Medecins du Monde|
|Jacqueline Bowman||Third-i stakeholder engagement|
|Dr Jacques de Haller||CPME|
Figure 8. Types of stakeholders represented in the focus group
Key outcomes from the focus group discussion:
In relation to the group’s general views on self-care, themes that arose were empowering patients by instilling confidence based on training which would include helping them be more ‘internet-savvy’ in terms of judging the quality of information, empowerment through knowing when to access professional advice, good inter-professional cooperation and structural issues which can influence self-care such as perverse incentives related to employment contracts.
In regard to both promoting self-care and ensuring safety, it was felt that ‘pull’ rather than ‘push’ methods should be used. Again, the need to build in self-care actions that went beyond self-medication was emphasized as well as the need to educate doctors as much as patients to change their behaviours (e.g. good communication, not fostering dependency or disempowering patients). Finally, that safety had to be paid attention to, although inevitably, this creates a tension in terms of change and speed of change which inevitably carries risk.
More general points were: a greater proportion of healthcare budget allocated to education and prevention, health literacy as the entry point to self-care, a concern from some quarters about risks associated with use of OTC medications and finally, a recognition of possible linkage points to other EU policies, such as links to EP Intergroups, cooperation with OECD and WHO, the Expert Group on Health Inequalities, the European Semester and work on access to healthcare and healthcare indicators.
The last part of the session was a discussion on the draft policy proposals which feature as the main recommendations in Chapter VI. The group endorsed and added suggestions to the draft proposals.
As a further consultative exercise, the explicit views of a small number of the stakeholders were sought on what they saw as the necessary adaptation of the current system, to foster self-care.
Viewpoint of: NECESSARY ADAPTATIONS
|Pharmacists||Community pharmacists offer advice on common complaints, such as coughs and colds, pain, skin conditions and digestive problems, and are the primary source of advice on medicines available without prescription.
Community pharmacists play an essential role in health education and ultimately ensure effective and safe self-care.
In order to better respond to changing needs of patients and health systems, we must manage medication and take more control and responsibility for the people in our care. Educate patients about their treatment and empower them to self-manage their condition.
As experts in medicines, pharmacists are known as an accessible and trusted source of advice and treatment, subject to common training standards across Europe and to professional and ethical obligations. As health professionals, they are first committed to act in the public interest rather than with a purely economic objective. Therefore it is important to ensure that certain safeguards are in place, so pharmacists can act independently.
(Extracted from: European Community Pharmacy Blueprint. PGEU 2012)
|Industry||AESGP on behalf of the Industry would make the following essential points:
First, the management of self-limiting ailments we all agree is where self-care can avoid the need for unnecessary use of healthcare resources if/when people/patients are informed and empowered.
In addition, the management of chronic diseases – sometimes after an initial medical diagnosis – has become part of self-care and by that a more holistic definition is required here. It is the actions that patients perform themselves that are at the core of self-care and this includes self-medication.
A more holistic definition of self-care includes preventative self-care and healthy life-styles as well as managing self-limiting conditions within reasonable boundaries and the patient-doctor relation is just one avenue for the effective promotion of such self-care. There are others and they need to be identified and acknowledged.
In order to make the self-care concept work there is a need for a proportionate legislative and regulatory framework which allows adequate protection for people/patients but also facilitates availability of new products e.g. by switching from prescription to non-prescription status.
Commercial actors in the self-care industry have a legitimate role to play in supporting and advancing self-care and can do so responsibly. The promotional activities of companies in the area of self-care are closely regulated and play an important role in making citizens aware of the availability of self-care options; advertising plays a legitimate and important role in raising awareness of available treatment options.
From the insurer’s viewpoint it means more focus on the patients’ everyday activities as supposed to providing health care services by the service providers. The biggest changes would have to take place for the health care service providers, where the crucial element would be a larger scope than just the curing process, including informing patients, and patient empowerment. Health insurance funds can help with providing necessary clinical guidelines, monitoring, etc. The self-care perspective from the insurer’s viewpoint is to provide the patient with enough support, so that the patient knows how to take care of him/herself, and knows how to approach the health care system in order to get the right help.
Clinical guidelines for patients, an updated Information system using the most appropriate channels, as well as supporting developing patient portals and self-help decision tools, are the key elements.
From the patient perspective, self-management is a key element of patient-centred care. In chronic conditions, the management of the condition is mostly handled by the patient in the home and in the community, so patients already “self-manage” for most of the time.
Self-management does not mean leaving the patient to cope on their own, but rather a holistic approach providing the appropriate support and tools according to each person’s individual needs and preferences. Through this patients can develop the confidence, self-efficacy and skills to take control of the daily management of their illness and attain the greatest possible quality of life. It also aims to make the best use of all available resources.
In some disease-areas a so-called guided self-management approach is widely used. Yet, overall, these services are still not available to patients consistently across countries and disease areas.
Technology can provide self-management support and motivation to patients and carers; patients can, for example, monitor their condition at home through wearable technology, and add information from their own observations to their shared electronic health record. But technology in itself is not enough to empower patients. Changes are needed in the healthcare system at all levels (e.g. embedding shared decision-making and comprehensive self-management support, and increasing health literacy and provision of patient-centred information resources).
|Medical professionals||CPME as the European representative body for Doctors believes that people/patients are at the core of self-care actions and must not be defied as consumers.
CPME encourages doctors to support patient empowerment and health literacy as well as enhance collaboration between health and social care. Patient empowerment and health literacy are two areas where the EU is lagging behind in terms of data and action so they need to a priority of self-care policy (Consensus statement: CPME, EPF, Maastricht University and MSD ‘Making Health Literacy a Priority, April 2013).
The patient-doctor relation is one way of effective promotion of self-care. Empowered patients should be able to rely on the fact that physicians provide assistance, advice and information about self-care, including self-medication.
The principle that treatment needs prior diagnosis is central to medicine and a reliable diagnosis should be the prerequisite of any treatment, also in the field of self-medication.
CPME advises that in the frame of self-care as In any therapeutic situation, circumstances where non-medical healthcare professionals can take therapeutic decisions without consulting a doctor must be strictly limited and defined.
Self-medication with non-prescription drugs is primarily suited for minor ailments, diseases of short duration that are easy to recognise by patients, pharmacists and/or a non-specialist/healthcare professional. Patients should be made aware of the need to consult a physician in situations where self-care needs to be complemented by medical treatment.
Public authorities must provide objective information on medicinal products and their use. Competent authorities, experts that are independent and transparent and the representatives of professional associations are to define the future EU policy through just and unbiased evidence.
CPME recommends that self-care should not become the field of commercial advertising and product promotion. Measures must be implemented to avoid this, as well as any type of conflict of interest and the damaging consequences which can result from the proximity of commercial actors to patients.
(Extracted from: CPME Statement on Self-care: Jan. 2015)
Conclusions: The detailed views of the selected stakeholder groups reflect the different priorities of those that they represent. For example it is evident that the medical group prioritise patient safety and established working relationships over innovation. On the other hand all groups support the notion that inter-professional communication is likely to be a significant element to support better self-care, as is greater health literacy, with special attention to groups where cultural and socio-economic factors create special problems. It is also recognised, as was very evident from the EPPOSI study (see above) that although use of the internet and advice from pharmacists are significant sources of information and advice, medical professionals remain the preferred source of advice, in the majority of users whose views were solicited. All groups are committed to the principle of patient empowerment. Both insurers and by inference industry support a shift from a ‘medical model’ focus to a more holistic view which includes prevention and healthy habits, the latter being something that no group would disagree with. What needs to be more clearly identified is the most effective means by which such information is disseminated and whether this will actually change behaviour and this is the focus of the next two sections within the Chapter.
Patients/citizens use of the internet
The Eurobarometer Qualitative Study on Patient Involvement revealed that patients are using the Internet in search of health care information. Practitioners tend to demonstrate negative attitudes towards the patient’s use of the internet and show concern towards the risk of misinformation. Furthermore, practitioners’ worries are targeted towards the risk of hypochondria. The unregulated online information is a cause of concern as it may raise vexation and mistrust in the relationship between patients and doctors. Yet, some doctors also see the Internet as a useful tool, for instance, when providing community support for chronically ill patients, encouraging preventative behaviours and when used as a tool for post-diagnosis information search.
Patients, on the other hand, seem to be almost solely positive towards the use of Internet and see it as a useful and easy way to gather information. Patients also tend to feel they are able to use the Internet responsibly and in constructive ways. A handful of patients also are aware that online information is not entirely reliable and some also acknowledge the risk of hypochondria. Yet, only few patients admitted that information found online might convince them not to see a doctor for their symptoms.
Recent initiatives have focused on computer-based information and the development of websites, health portals, virtual support groups etc. Online health information has become a popular source for health information, but these sources also have limitations when it comes to equal access. While information in other electronic formats has had mixed results with improving knowledge, they can be effective tools when it comes to improving patients confidence and abilities to be involved in the decision-making process. Using electronic information tools to complement health education in clinical setting, can improve clinical outcomes and, in the end, also have an effect on health behaviour. Furthermore, electronic tools can be helpful with reaching hard-to-access groups.
The policy brief written for the WHO European Ministerial Conference on Health System in 2008 (see next section) states that appropriate, relevant and reliable health information, which is available at specific milestones, should be provided for patients. Online information does not automatically fill these qualifications, and tools for assessing quality information are useful. It seems that instead of main-stream medical information, patients are interested in aspects such as treatment options, their probability of success and how to best manage their condition.
As a caveat, this policy brief was written at almost the exact time that the iPhone was launched as a product. The last seven years has seen an extraordinary growth in the world-wide ownership of mobile technology, which raises questions as to the authors’ concerns about equality of access to information (although literacy issues remain). Secondly the growth of social media such as Twitter have effects which we are only just starting to understand. To give two examples, while peer-to-peer support remains an important aspect of patient empowerment, traditionally this was via face to face meetings or internet fora. Now for a significant number of young diabetics, certainly in Western Europe, Twitter has become a resource for peer support. Similarly, in terms of reporting of adverse effects of common medications, at least one large pharmaceutical company is scanning Twitter as a source of peer to peer reporting of unwanted side-effects, to support its product development. This is a very rapidly developing area.
Policy options to improve patient involvement in their own care
As Coulter et al comment ‘Governments, health authorities or payers looking to educate, inform and empower patients need to agree on clear goals and a coherent strategy, with actions targeted at. national, regional and organisational levels. The goal is cultural change, and a whole-system approach is therefore needed to strengthen interventions in various settings.’ Policy brief written for the WHO European Ministerial Conference on Health Systems (Coulter, Parsons and Askham: ‘where are the patients in decision-making about their own care?’ for Tallinn conference 2008).
They continue ‘Initiatives at different levels of the system should be mutually reinforcing and well-coordinated. The range and balance of initiatives should be culturally relevant and locally determined, and the vision and strategy must be clearly articulated so that everyone knows what is expected of them. It is not possible to develop a universal policy that works in every setting is but the following initiatives are worth of consideration:’
- Actions at macro level
E.g. legislation concerning protection and promotion of patients’ interests; requiring clinicians to ensure the maximum possible level of patient engagement in their own treatment and ensuring that people are kept informed of their rights and responsibilities. Explicit standards or targets can require care providers to demonstrate their competence in patient education and to provide evidence of patient involvement in decision-making. Coordinated patient survey programmes have been shown to be a useful way of monitoring performance across the system.
- Actions at the meso level
Professional regulation can play a key role. Good practice standards developed by professional bodies can require clinicians to: involve patients in treatment and management decisions; provide them with education and support for self-management; and adopt strategies guided by evidence, to build health literacy.
Standards could also require clinicians to help patients navigate the system and to guide them to appropriate sources of health information and decision aids.
Once again, patient feedback obtained by means of standardized questionnaires can be used to monitor the performance of clinicians and reward good practice. National bodies responsible for professional education, including the development of educational methods, curricula and assessment, should ensure that care providers comply with patient-centred standards.
- Actions at microlevel
Fostering a culture of partnership between health professionals and patients requires professionals to develop a specific set of skills and attributes (see Coulter et al for an extensive list). Patient education needs to become an integral part of professional–patient interactions. This will require effective professional leadership and the development, implementation and evaluation of effective education programmes. Patient confidence and competence in self-management can also be enhanced by providing appropriately targeted telephone and e-mail advice, telephone coaching and counselling, text messaging with prompts and reminders, so-called virtual support (such as interactive web sites and virtual networks), and assistive technologies and self-monitoring equipment. Encouraging patients to play an active role in decisions about their care can be an effective way of ensuring that treatment and disease management are appropriately tailored to the individual.
The European Observatory on Health Systems and Policies report What do we know about the strengths and weakness of different policy mechanisms to influence health behavior in the population? (2014) aims to map what is known of the policy mechanisms that can be used to promote health. For now, taxation and legislation, health education campaigns and mass media campaigns have been popularly used methods. Combinations of several of these methods could also be effective, yet, individuals occasionally tend to be resistant towards changing their habits; some have difficulties with appreciating the risk, while for others social and environmental factors affect their abilities to adapt new behavioral models. The evidence base on what works to influence behaviour, and in what context, is still in development, with many unanswered questions on how best to design new innovative interventions that can complement, and in some instances augment, these well-established mechanisms. Despite there being plenty of policy ideas informed by behavioural economics floating around, more ideas are needed in a health context, and far more evidence is required on their likely effectiveness and cost effectiveness. Nevertheless the application of ‘behavioural economics’ to public health is currently a popular idea e.g. see ‘Applying behavioural insights to health’ UK Cabinet Office 2010 (available on the internet), which as a discussion paper suggests nine different pilot projects on themes ranging from smoking, teenage pregnancies, diet and weight to diabetes management in children, organ donation and social care.
The key messages from the report are:
Traditionally, public health policy has relied on a combination of tools, most frequently health-education and -information campaigns, taxation policies to influence decisions related to health behaviour, and legislation to prohibit unhealthy activities.
While these approaches are effective and have led to many public health improvements, they are blunt instruments; individuals do not always respond to these tools and may even be resistant to changing their behaviours in the face of significant financial benefits. Rational persuasion can have relatively little impact on entrenched habits, particularly if they involve strong peer pressures or even addiction.
In some cases, expansion in the use of strict approaches that limit choice, such as new legislation, can be unpopular with a public that may see some actions as an unnecessary encroachment into matters of personal choice.
A better understanding of factors that influence behaviour change may help in designing public health strategies that reach segments of the population that have been impervious to existing public health strategies.
There is a growing body of knowledge on mechanisms that directly seek to influence health behaviours, recognizing that individual choice and decision-making is influenced by many different factors. Many of these approaches have evolved out of research focused on behavioural economics and psychology.
However, while a lot is known about long-standing public health actions, such as the role of taxation, legislation and health-information campaigns, the evidence base on what works to influence behaviour, and in what context, is still in development; there are many unanswered questions on how best to design new innovative interventions that can complement, and in some instances augment, well-established mechanisms. These mechanisms can also have both positive and negative unintended consequences.
There is little evidence that behaviour-change interventions, for instance those using standard financial incentives for change, or those that use techniques such as commitment contracts, with or without financial incentives, have a long-term impact on objectives such as weight loss. Changes to the environment, to make healthy lifestyle choices more convenient, may have more long-term success, but again there is little long-term evidence available. The shorter the time frame for impact to be achieved, the greater the chance of behaviour change – for example, the benefits of smoking cessation during pregnancy. Other behavioural interventions, for instance changing default decisions, such as having to opt out of organ donation, or reframing information with visual and other cues to address issues of cognitive bias, can also play a role, but information on their effectiveness is limited.
Adopting a more positive approach to health-promotion messages, emphasizing the immediate enjoyment of a healthy lifestyle, is helpful.
Examples of positive public–private-sector partnerships can be identified, especially where a business case for healthy living can be identified.
Given the lack of robust evidence on mechanisms to influence change in health behaviour, it is important that, in planning implementation, an assessment of needs is undertaken and that planners are as specific as possible about the content, target group and provision of theories justifying the action.
While some low-cost actions can be highlighted, it should be stressed that there is little robust information on the effectiveness, let alone the cost effectiveness, of innovative approaches to behaviour change. Therefore, careful evaluation, including analysis of costs, should be embedded into pilot phases of evaluation before scaling up interventions.
In conclusion: in some ways the implementation of public health policy has followed extremely conservative and traditional lines. Whether the effect of financial pressures or the increased use of the internet and mHealth tools will force a shift in delivery in the same way that it is postulated may happen with healthcare delivery in Europe remains a question which only time will answer. What policy recommendations can do, as well as taking into account the best information available, is to look for clues from ongoing parallel activity as to emerging innovation.