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Background In 2020, a new law on organ donation will come into force in the Netherlands. This law requires people to actively register their choice whether or not to be an organ donor after death. In this opt-out system, people who do not register themselves are automatically considered to be a donor. To inform the general public, the Dutch ministry of Health launched a communication campaign to inform the general audience. However, people with limited health literacy - 1 in three Dutch adults - have difficulties understanding health related information. Therefore, a study was performed to determine the appropriate information content and communication channels to better address the knowledge needs of this specific target group. Methods The study was done through (a) desk research and (b) 6 individual interviews and 4 focus groups with people with limited health literacy (total 30 people). The respondents were recruited through organisations that focus on specific populations with limited health literacy (limited reading and writing skills, minor intellectual disabilities, migrants). Results Most respondents had not heard about the new law on organ donation. Those who were aware of the law did not know what the law entails and what was required of them. The content of the information currently used were generally considered too difficult and abstract and did not give the respondents enough input on which to base a decision whether or not to be an organ donor. People with limited health literacy can mention specific topics on which they want information. Furthermore, they want practical help in registering their choice through the website. As information channels they prefer simple films and narratives of other people. Conclusions People with limited health literacy need more specific information on organ donation and what the new law entails. They have a preference for films and narratives. Furthermore, they need practical help in registering their choice. Key messages Current information on the new Dutch law on organ donation is too difficult and does not address the knowledge needs of people with limited health literacy. Films and narratives are preferred information channels of people with limited health literacy.

Background In the past five years, two inventory studies have been performed in which health literacy policies throughout Europe were described and analyzed: the ‘Study on sound evidence for a better understanding of health literacy in the European Union’(HEALIT4EU, 2015) and the recent HEN-synthesis report on the evidence on existing policies and linked activities and their effectiveness for improving health literacy (2018). In this presentation, data from these two studies will be compared to identify current developments regarding health literacy policy. Methods The descriptive data of both studies were, amongst others, compared with respect to the number of countries with policies or activities regarding health literacy, the geographical distribution over Europe, the content of the policies and level of implementation. Results More countries have developed policies and activities in the domain of health literacy, or are currently in the process of doing so. However, gaps remain in the geographical distribution of policy, and evidence on the effectiveness of policies and activities is still marginal. Conclusions Health literacy is more prominent on the European policy agenda. Rigorous evaluation is needed to demonstrate possible benefits of the policies for individuals, communities and society as a whole.

Aim The aim of this round table is to provide an overview of important recent insights and developments in the domain of health literacy research and policy in Europe. The implications for research, policy and practice will be discussed with the audience. There will be five short presentations: 1. Quick scan of health literacy developments in Europe in the past five years. Jany Rademakers, PhD, Head research department Nivel, Utrecht, Professor Health literacy and patient participation, CAPHRI, Maastricht University, the Netherlands. 2. Health literacy in Childhood and Adolescence; main consortium findings. Orkan Okan, PhD., Senior researcher, project manager HLCA, University of Bielefeld, Germany. 3. From the Health Literacy Survey Europe (HLS-EU) to Measuring Population and Organizational Health Literacy (M-POHL). Jurgen M. Pelikan, PhD Professor em. sociology (University of Vienna), Director, Competence Center Health Promotion in Hospitals and Health Care, at Gesundheit Osterreich GmbH (Austrian Public Health Institute). 4. The development of the social movement of health literacy in Europe and beyond. Kristine Sorensen, PhD, Global Health Literacy Academy, Denmark. 5. Towards holistic health literacy policies in Europe; results of a recent WHO evidence synthesis. Gill Rowlands, PhD, Professor of General Practice, Newcastle University, UK . Key messages: Health literacy is an important public health asset. Health literacy policies should be targeted at different levels and areas of society.

Introduction In chronic care, patients are expected to exert a certain degree of control over the care for their condition, for instance by fulfilling care tasks in their home environment. Health literacy is considered relevant in this regard, especially critical health literacy. The aim of this study was to examine to what extent functional, interactive and critical health literacy are associated with patients’ perceived control over care and with the frequency of GP visits. Methods Data from the Dutch ‘National Panel of people with Chronic illness or Disability’ were used (N = 2508). Functional, interactive and critical health literacy was assessed by the Functional, Communicative and Critical Health Literacy measure (FCCHL). Perceived control over care was indicated by perceived ability to: organize care, interact with providers and perform self-care. By stepwise linear regression analyses, associations between health literacy and ability to organize care, interact with providers and perform self-care were studied. By stepwise logistic regression analysis, associations between health literacy and frequency of GP visits was studied. Analyses were adjusted for sex, disease knowledge, cognitive functioning, age, level of education, and health status. Results Lower functional and interactive health literacy were significantly associated with a lower perceived ability to organize care and to perform self-care. Only lower interactive health literacy was significantly associated with a lower perceived ability to interact with healthcare providers. Only lower functional health literacy was significantly associated with a higher frequency of GP visits. Conclusions The results imply that functional, interactive and critical health literacy vary in their relevance for patients’ ability to exert control over care. Initiatives to strengthen patients’ role in healthcare may be improved by attention for patients’ health literacy, especially functional and interactive. Key messages Attention for functional and interactive health literacy skills may help chronically ill people to exert control over their care. Chronically ill people with lower functional health literacy seem to need more support from general practitioners than those with higher functional health literacy. (aut. ref.)

Health literacy (HL) is an important prerequisite for successful self-management and a determinant of health care use in chronic disease. HL is a multidimensional concept covering several functional, social and psychological dimensions. When developing interventions to improve HL it is an important question on which of these dimensions one should focus to offer care that best fits the needs of individual patients. We surveyed both the health literacy and self-management capabilities of a representative sample of 1.826 patients with chronic conditions or long term disabilities in the Netherlands. The Health Literacy Questionnaire (HLQ) assessed 9 independent HL dimensions. Using cluster analysis we looked for subgroups of patients across the 9 different HL profiles. Cluster analysis produced a 7-cluster solution, identifying stable and clinically meaningful subgroups of patients. In each subgroup patients had at least some strengths but also reported limitations on others HL dimensions. These pattern offering concrete suggestions to tailor support to the needs of patients. In addition, we found that patients in the 7 subgroups differed significantly with respect to educational level, number and type of chronic diseases, severity of disability, living situation and the level of urbanity of their residence pointing to the importance of taking context factors into account when developing interventions to improve HL skills. For example, people with chronic illnesswho were living alone require more support with getting help from their social environment and finding and understanding health information compared with people we had a partner or children. While some subgroups might have a similar total score, the actions for improving their outcomes would differ.

In a recent EU study (HEALIT4EU) evidence-based interventions and policies and programs to improve health literacy in European Member States were inventoried. From a systematic literature review we learned that evidence-based interventions of which the effectiveness is studied are virtually lacking in Europe. Only 20 studies could be retrieved. Nevertheless, health literacy as a policy topic has gained attention in the European Member States during recent years, especially in Western Europe and countries that were involved in the HLSEU study. In our study, 82 programmes and activities on health literacy in Europe were identified. In many countries, however, the concept of health literacy has not ‘caught on’ yet. In general, most countries are still in the early stages of addressing health literacy. Only six European Member States actually have a national policy or programme on health literacy. Initiatives in countries are often fragmented, largely depending on specific stakeholders, good will and enthusiastic initiatives and accidental funding. This can result in less effective use of means and fewer exchange of knowledge and ‘best practices’ as desirable. In general, a more programmatic and evidence-based policy to health literacy in EU Member States will be beneficial with regard to the outcomes of these efforts. (aut. ref.)

Background: Various European healthcare systems encourage patients to make an active choice of healthcare provider, both as a worthwhile effort for patients and an instrument to encourage competition between providers. In previous research, patient groups were distinguished regarding patients’ hospital selection process: patients without choice opportunity, passive patients, patients choosing the default hospital and patients displaying choice activity. This study describes these patient groups in more detail and explores the relationship between patient choice (both as an instrument and a goal) and patient experiences. Methods: In January 2014, a questionnaire was ent to 1500 members of the ‘‘Dutch Health Care Consumer Panel’’. Questions concerned patients’ hospital selection process, possible determinants of patients’ choices and patients’ experiences with the care they received. Results: Consistent with existing literature, we categorized patients into four different main groups with regard to the way they selected a hospital. Relatively few patients displayed choice activity and even these patients visited a hospital based on other factors than its quality. Passive patients did not have worse care experiences than patients who displayed choice activity, but their hospital visits led to smaller health improvements. Patients without choice opportunity had worse patient experiences than their counterparts. Conclusions: Patient choice seems to be a worthwhile effort. However, relatively few patients make active hospital choices and even they select a hospital based on other factors than its quality. It can therefore be questioned whether enough patients choose actively to encourage providers to compete. Policy makers might need to adjust their current expectations regarding the effects of the policy on patient choice. The abstract is included in the workshop because its subject matches the scope of the workshop and a presentation covering the effect of patient choice of providers in the Netherlands would be a nice supplement to the other presentations. Key messages: - Patient choice is a worthwhile for patients. - It can be questioned if the level of competitive pressure arising from patients in the provider market is sufficient for stimulating competition.

Background: Patients and especially the chronically ill are expected to play an active role in their health care management. They are to be involved, well-informed and to be able to adjust their behavior to maintain a good health. Different levels of patient activation have been associated with distinct self-care and other health-related behaviors. The assumption is that lower patient activation is also related to health care use, leading to higher health care costs. Methods: Diabetes patients of a Dutch health insurer filled out the Patient Activation Measure (PAM) 13-Dutch. The PAM was filled out by 693 diabetes patients in 2011 and by 2,998 diabetes patients in 2012. Information on health care use and costs were extracted from the claims data of the health insurer for the years 2009, 2010 and 2011. Using ANOVA analyses, we examined the differences in healthcare use and costs between four levels of patient activation. Results: Less activated patients had higher healthcare costs for general practice care, allied health care, hospital care, mental care, pharmaceutical care, assistive devices and reimbursements towards the primary healthcare package (P’s < 0.01). Especially patients scoring in the lowest activation level (level 1) had higher costs. Looking at all the reimbursements towards the primary healthcare package, for instance, patients scoring in level 1 claimed on average 6,100 Euro year versus 4,255–4,886 Euro per year for the other three groups. Costs for assistive devices specific for diabetes did not differ between the four levels of patient activation (P = 0.212). Similar results were found for health care use. Conclusions: Differences in health care use and costs can be explained by differences in patient activation. The next step will be to establish whether the PAM can be used in clinical practice to identify patients most in need for help with managing their healthcare and to monitor the effectiveness of interventions in increasing patient activation.

Background: In Europe, about one in five adults suffer from chronic pain, a third of whom suffer from severe chronic pain. Although lower than the European average, in The Netherlands, chronic pain prevalence is still estimated at 15% of the population. Nevertheless, relatively little is known about patient experiences in pain care, probably because pain is often considered a symptom of other diseases or health problems, rather than an independent health condition in itself. In order to systematically identify the most prominent problems patients are presented with in Dutch chronic pain care, their experiences and preferences were assessed. Methods: An extensive patient experience survey was developed, regarding chronic pain care. The major sources for this survey were focus group meetings for patients (members of five Dutch chronic pain patient organisations) and an assessment of the relevant literature. The survey was sent to 2,209 members of five Dutch patient organisations for chronic pain. Results: 886 (RR 40%) patients completed the survey. About 90% reported fairly positive experiences regarding their communication with healthcare providers. However, 24% reported limited to no shared-decision making on treatments and 35% received little or no information about possible treatments. Half of the patients (52%) reported having a central health care provider coordinating their chronic pain care. With regard to continuity of care and cooperation between health care providers, these patients had significantly more positive results than patients who did not have such a provider (on average 68% vs. 44%, p < 0.01). Conclusions: Provider communication and continuity of care proved the major themes in both the focus group meetings and the survey. Communication was rated positively by patients, but coordination and continuity were often found insufficient. Our findings suggest that patients suffering from chronic pain may benefit from having a central health care provider, especially in the fragmented field of chronic pain care. Key messages: Health care provider communication and continuity of care proved to be major themes in healthcare for (Dutch) patients suffering from chronic pain. A central professional can help to monitor and coordinate the process of chronic pain care, leading to more efficient use of health care for both patients and the health care system.