Support USers To Access INformation and Services. Document D3.2 Questionnaire for Patient Empowerment Measurement. Version 1.0

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1 ICT PSP Empowering patients Support USers To Access INformation and Services (Grant Agreement No ) Document D3.2 Questionnaire for Patient Empowerment Measurement Work Package: WP3 Version 1.0 Version & Date: v1.0 / 25 th January 2013 Deliverable type: Distribution Status: Author: Reviewed by: Approved by: Filename: Abstract Document Public Özgün Ünver, Walter Atzori John Oates Marco d Angelantonio D3.2 v1.0 Questionnaire for Patient Empowerment Assessment This document presents a framework for the assessment of patient empowerment in the SUSTAINS project. The SUSTAINS patient empowerment framework revolves around three empowerment dimensions, i.e. patient knowledge, patient control, and patient participation. These three dimensions are further broken down into a set of indicators that will be used to assess changes in empowerment among the patient population using the SUSTAINS services on a regular basis. Key Word List Patient Empowerment, Health Literacy, ehealth, Patient-accessible Electronic Health Records The information in this document is provided as is and no guarantee or warranty is given that the information is fit for any particular purpose. The user thereof uses the information at its sole risk and liability.

2 Executive Summary The SUSTAINS Consortium has undertaken to assess the impact of the EHR-related services to be implemented in the nine participating regions on patient empowerment. This document presents a framework for the assessment of patient empowerment in the SUSTAINS project. The SUSTAINS patient empowerment framework revolves around three empowerment dimensions, i.e. patient knowledge, patient control, and patient participation, which have been derived from a literature review conducted in spring 2012 to assess stateof-the-art knowledge and understanding of patient empowerment, its components, and how this concepts relates to ehealth services in general and patient-accessible EHR in particular. The three dimensions mentioned above are further broken down into a set of indicators that will be used to assess changes in empowerment among the patient population using the SUSTAINS services on a regular basis. For the purpose of this project the following definition of patient empowerment has been adopted: Patient empowerment is defined as patients having the ability to understand health information and make effective use of it, as well as to gain control over and participate in a meaningful way in the disease management process in an equal partnership with healthcare professionals. Using these inputs, an English questionnaire was devised, and translated into eight other languages. The surveys will be administered at trial start, and after 12 months of using of the SUSTAINS services. Public Page 2 of 74 v1.0 / 25th January 2013

3 Change History Version History: th June 2012 Initial Version th July st January th January 2013 version for issue Version Changes 0.1 Initial version 0.2 Revision of indicators and inclusion of a SUSTAINS definition of Patient Empowerment. 0.3 Revision of indicators, revision of the data analysis plan, inclusion of the questionnaire preparation process. 1.0 Minor changes prior to issue Public Page 3 of 74 v1.0 / 25th January 2013

4 Table of Contents EXECUTIVE SUMMARY 2 CHANGE HISTORY 3 TABLE OF CONTENTS 4 1. INTRODUCTION Purpose of this document Structure of document Glossary 6 2. THE SUSTAINS PROJECT The SUSTAINS project and its focus on patient empowerment Objectives of Task 3.3: Assessment of Patient Empowerment 7 3. PATIENT EMPOWERMENT: A LITERATURE REVIEW What is empowerment? Patient empowerment The emergence of the concept of patient empowerment Patient empowerment: a process or an outcome? The link between ehealth and patient empowerment Drawing some initial conclusions COMPONENTS AND INDICATORS OF PATIENT EMPOWERMENT Components of Patient Empowerment Indicators of Patient Empowerment METHOD OF THE SUSTAINS PATIENT EMPOWERMENT SURVEY Regions where the survey will be launched Questionnaire development Translation of the questionnaire Data Collection Techniques of analysis Exploring patient empowerment further 25 APPENDIX A QUESTIONNAIRE IN ENGLISH 26 APPENDIX B TRANSLATED QUESTIONNAIRES 31 Public Page 4 of 74 v1.0 / 25th January 2013

5 B.1 Questionnaire in Basque 31 B.2 Questionnaire in Finnish 36 B.3 Questionnaire in Greek 41 B.4 Questionnaire in Italian 47 B.5 Questionnaire in Spanish 53 B.6 Questionnaire in Swedish 58 B.7 Questionnaire in Estonian 63 B.8 Questionnaire in Slovenian 68 APPENDIX C REFERENCES 73 Public Page 5 of 74 v1.0 / 25th January 2013

6 1. Introduction 1.1 Purpose of this document This document is the first output of Task 3.3 set up within the remit of Work Package 3 to carry out the assessment of changes in patient empowerment among the end users of the SUSTAINS services. The purpose of this document is to present the indicators and the methodology that will be used to carry out patient empowerment assessment. Indicators were selected according to the various patient empowerment components, which in turn were derived from a literature review on this topic conducted in spring Structure of document Chapter 2 presents the SUSTAINS project and the contribution it wants to make to strengthen empowerment among its intended users. Chapter 3 presents and discusses the main outcomes of the literature review conducted to gather state-of-the-art knowledge and understanding of patient empowerment, and the link between empowerment and patient-accessible EHR. Chapter 4 outlines the various components of patient empowerment that serve as a basis for defining the indicators and presents the list of patient empowerment indicators, clustered in three dimensions. Chapter 5 describes the method that will be used to carry out the assessment of patient empowerment in the SUSTAINS project with emphasis on the development of the Patient Empowerment Questionnaire which will be used twice at ex-ante (before starting using the services) and ex-post (after at least one year of service usage) to measure changes in patient empowerment among the patient population using the services on a regular basis. 1.3 Glossary EHR ICT Electronic Healthcare Record Information and Communication Technology Public Page 6 of 74 v1.0 / 25th January 2013

7 2. The SUSTAINS project 2.1 The SUSTAINS project and its focus on patient empowerment SUSTAINS aims to make online access by citizens / patients to their Electronic Healthcare Records (EHR) a reality, capitalising upon the experience of some of the Consortium members who have been pioneers in this area. Pure online access (i.e. patient-accessible EHR) is complemented with a rich basket of e-services making it possible for patients and citizens to interact with their EHR. This should ultimately contribute to changing their role in the management of their health, and in the treatment of the diseases they might suffer from. SUSTAINS provides a very articulated and diversified basket of services which are rather different from one another. The common denominator in terms of usage is that they are all designed to be used by citizens / patients from their homes or wherever they happen to be, provided they have access to the Internet. The background to the SUSTAINS project has three drivers that SUSTAINS contributes to: a) enabling and strengthening empowerment of patients; b) enabling better medical results; c) enabling a more efficient use of healthcare resources and containing costs. All SUSTAINS services should ultimately contribute to the achievement of a new paradigm in healthcare, whereby the citizen / patient is no longer a passive receiver of healthcare services, but he/she becomes an active player in the management of his/her own health. This revolution is often referred to as patient empowerment. Patient empowerment is indeed the primary objective of SUSTAINS. 2.2 Objectives of Task 3.3: Assessment of Patient Empowerment In order to measure the contribution of patient-accessible EHR-based services towards the three drivers mentioned above, the project has put in place an evaluation methodology covering all three of these areas within the remit of Work Package 3 Evaluation and Deployment Planning. Task 3.3 focuses on the assessment of patient empowerment. The SUSTAINS project offers a novel opportunity to develop services that allow citizens / patients to get involved in clinical decisions regarding their own health. As a side effect, medical results are expected to improve, and the health system will save money. All this obviously requires changing the role of the citizen / patient, by making him/her part of the solution. Public Page 7 of 74 v1.0 / 25th January 2013

8 Collecting evidence-based information on the contribution of the patient-accessible EHR and related services towards strengthening the empowerment of its intended users is therefore critical not only to the success of this specific project, but also to informing future deployment of such services across EU Member States and beyond. While there is wide consensus that large-scale deployment of ehealth services will significantly enhance patient empowerment, as of today no proper assessment of the relationship between the two has been made. Task 3.3 wants to bridge this gap through developing and implementing a methodology for the assessment of patient empowerment consisting of a mix of quantitative and qualitative methods, which are further presented and discussed in Chapter 5. The objective is to measure changes in patient empowerment among the patient population using the services in the 11 countries / regions participating in the SUSTAINS project, and to assess to what extent such changes may be linked to patients having direct access to EHR and related services. Public Page 8 of 74 v1.0 / 25th January 2013

9 3. Patient Empowerment: a literature review This chapter presents the results of a brief literature review on patient empowerment conducted in spring 2012 by the European Patients Forum (EPF) in order to collect state of the art understanding of patient empowerment, its components and how it how it relates to ehealth services in general and patient-accessible EHR more specifically. This short literature review was intended to form the basis for the preparation of the SUSTAINS Patient Empowerment Questionnaire. This aims to measure changes in the levels of empowerment among the patient population using the EHR-related services offered in the context of this project. This chapter starts with a discussion of the concept of empowerment and continues by narrowing it down to the notion of patient empowerment, and how the latter applies to healthcare and ehealth services. 3.1 What is empowerment? In general terms, empowerment is defined as the process by which disadvantaged people work together to increase control over events that determine their lives (Werner cited by Laverack 2005: 35), or as a process by which people, organisations, and communities gain mastery over their affairs (Rappaport cited in Helmer et al. 2011). With regard to this approach, Laverack (2005) points out that empowerment must come from within an individual or group, since it must be gained by those who seek it. In other words, empowerment cannot occur unless it is sought. Empowerment can occur at many levels, from personal to social to political action, also according to the continuum model explained by Labonté & Laverack (2008: 54-55). This model claims that empowerment develops through the five steps listed below: Personal empowerment / action. Small group development. Community organisation. Partnerships / coalition advocacy. Social and political action. Laverack (2005: 40) states that attaining power is a collective process rather than an individual one that leads to social and political change. However, increasing individual awareness and developing certain skills to make empowerment possible are also crucial in reaching the goal, since they form the backbone of collective action. On the other hand, in this short overview, we focus mainly on the personal empowerment of patients which is necessary for later levels of local and ultimately global patient empowerment. Public Page 9 of 74 v1.0 / 25th January 2013

10 One of the aspects of empowerment that needs to be clarified is the issue of power. Some authors claim that empowerment has nothing to do with power, thus, nothing to do with giving or taking power (Anderson & Fannell 2010). On the other hand, others like Laverack (2005) or Peña & Gil (2007) think that power is at the core of the concept of empowerment. As pointed out by Page & Czuba (1999) empowerment is not possible if power is inherent in positions or people. Thus it is fundamental to expect its shift from one person or group to another. It is also crucial to note that power is not only having the necessary knowledge, but also being able to exercise a choice based on that knowledge (Laverack 2005). If a given knowledge is not applicable, the person may feel even more powerless. It is interesting to note that while empowerment has always been conceptualised as an emancipation process in which the disadvantaged are empowered to exercise their rights, and participate actively in society, the notion of patient empowerment - which will be discussed in the next section - has by contrast never been used to refer to disadvantaged people, but rather to patients at large to emphasise the (need for) changing role of the patient in healthcare. Let us, therefore, take a closer look at the notion of patient empowerment as expressed in the scientific literature. 3.2 Patient empowerment The emergence of the concept of patient empowerment Patient empowerment is generally used to refer to patients control over their health and their condition, as well as their ability to be more involved in their healthcare. In other words, patient empowerment enables patients to manage their healthcare and advocate for themselves as they use healthcare services (Helmer et al. 2011). The concept of patient empowerment first emerged in the 1970s in the United States and Europe in the context of the civil rights movement, and has grown tremendously in popularity and application ever since. The concept had a new boost in the late 1990s with the dawn of ehealth, which was presented as carrying a huge potential for changing the role of patients in healthcare. Harris & Veinot (cited in Peña & Gil 2007) explored in more detail the various trends that according to them have paved the way for patient empowerment to emerge as a major issue in healthcare. These are: Self-help and mutual aid: This social movement gave rise to the idea of selfmanagement for people instead of expecting help from outside. Healthcare consumerism: This approach brought up the idea of consumer visà-vis patient, where the former is intended to indicate being active and taking charge in contrast to the perceived passivity of the latter. It is important to note that the rise of the consumer instead of patient has been the case for countries such as the US rather than Europe. There are two forms of consumer power: (i) The ability to make choices (right to choose healthcare goods, products, services, etc.); and (ii) Legal rights (e.g. privacy, confidentiality, informed consent, etc.). Public Page 10 of 74 v1.0 / 25th January 2013

11 Rise of alternative medicine: Patients started to consider traditional or alternative remedies along with modern medicinal treatments. Patient organisations and activism: Some patient organisations became active actors in the political arena of various countries, and drew attention to patient empowerment. Constraints in healthcare spending: It has been noted that patient empowerment facilitates cost containment through reducing the burden on healthcare professionals. Impact of information society: Internet and ehealth solutions are considered as very powerful tools for patient empowerment Patient empowerment: a process or an outcome? Page & Czuba (1999) defined empowerment as a multi-dimensional and social process that occurs within sociological, psychological, economic, and other dimensions. Empowerment also occurs at various levels, such as individual, group, and community. Empowerment, by definition, is a social process, since it occurs in relationship to others. Empowerment is a process that is similar to a path or journey, one that develops as we work through it. Other aspects of empowerment may vary according to the specific context and people involved, but these remain constant. In addition, one important implication of this definition of empowerment is that the individual and community are fundamentally connected (emphasis by the author). Another definition of patient empowerment as a process is put forward by Aujoulat, Marcolongo, Bonadiman & Deccache (2008). According to them, patient empowerment is a process of personal transformation which occurs through a double process of (i) holding on to previous self-representations and roles and learning to control the disease and treatment, so as to differentiate one s self from illness on the one hand, and on the other hand (ii) letting go, by accepting to relinquish control, so as to integrate illness and illness-driven boundaries as being part of a reconciled self (Aujoulat et al. 2008: 1228). Other authors have described patient empowerment as both a process and an outcome. For instance, Funnel, Anderson, Arnold, Barr, Donnelly, Johnson, Taylor- Moon, and White (1991: 38) emphasised that while empowerment can be seen as the process of discovery and development of one s inherent capacity to be responsible for one s life, they pointed out that patient empowerment is fundamentally an outcome. Accordingly, patients are empowered when they have the knowledge, skills, attitudes, and self-awareness necessary to improve the quality of their lives. Anderson & Fannell (2010: 277), define patient empowerment as a process designed to facilitate self-directed behaviour change. According to this definition, patient empowerment is related to the internal motivation of patients to change the way they deal with their disease / condition, rather than external motivation for instance by healthcare professionals in order to increase patients adherence to treatments and advices. Anderson & Funnell (2010) state that patient empowerment starts when healthcare professionals acknowledge that patients are in control of Public Page 11 of 74 v1.0 / 25th January 2013

12 their lives and healthcare services they use. They further claim that empowerment occurs: (i) when healthcare professionals aim to increase the capacity of patients to think critically and make autonomous, informed decisions (empowerment as a process); and (ii) when patients actually make informed and autonomous decisions about their healthcare management (empowerment as an outcome) (Anderson & Funnell 2010: 277). Aujoulat et al. (2008) argue that the empowerment approach views patients as responsible for their choices and the consequences of these choices, and warn us against the subtle belief of empowerment as a process of activating patients in order for them to reject the passivity of a sick role and to assume responsibility for their care. As a result, the generally accepted definition is a professional construction which might not apply to all chronically ill patients because the same patients might lack the decision-making capacity due to various reasons. Moreover, they argue that this model of empowerment implicitly acknowledges the loss of bodily control and the lack of medical knowledge and skill to deal with it, as the main factor of powerlessness in patients with chronic conditions (2008: 1229). For this reason, one should be careful in defining and implementing empowerment with a wrong approach which might actually be disempowering for patients. Some early studies on patient empowerment highlighted that empowerment is not only about patients knowledge, attitudes, and behaviour (i.e. patient participation), but is also signalled through the actions of healthcare professionals, i.e. education and support (Gibson 1991). This latter dimension obviously looks more at the process side to highlight that patient empowerment can also be understood as an educational process designed to help patients develop the knowledge, skills, attitudes, and the degree of self-awareness necessary to effectively assume responsibility for their health-related decision (Anderson 1995: 135). Drawing on an extensive literature review on the topic, and seeing patient empowerment as a multidimensional concept, Ouschan, Sweeney, Lester, and Johnson (2008) have developed a three-dimensional framework for defining a set of patient empowerment guidelines for treating patients with chronic illness conditions. The authors use the dimension patient control to describe the increased confidence acquired by the patient in being in control of his/her condition, managing treatment regimes, as well as disease-related anxiety. They use the patient participation dimension to assess the patient s level of participation, and the changing role of the patient during medical consultations and other types of encounters with healthcare professionals. They finally use the physician support dimension to describe the support / education the patient receives from healthcare professionals. In relation to patient control, Golin (2008) stressed the close link between the latter and adherence as a result of patients becoming more and more aware of the need (and benefits) to implement treatment plans as agreed with healthcare professionals. The empowerment dimension that can be labelled as support emphasises the need for healthcare professionals to communicate with patients in a way that motivates them and encourages them to become empowered. One could also see Public Page 12 of 74 v1.0 / 25th January 2013

13 the support dimension as both an integral part of the concept of empowerment as well as one of the necessary enabling conditions for patient empowerment. Patient empowerment would hardly occur without healthcare professionals willingness to support the patient throughout the empowering process. Peña & Gil (2007: 24) pointed out that, although there are many definitions of patient empowerment, they all concur with the idea that empowered patients attempt to take charge of their own health and their interactions with healthcare professionals and healthcare organisations. They summarise the general idea behind the term patient empowerment as a situation in which citizens are encouraged to take an active part in their own health management (Peña & Gil 2007: 23). Peña & Gil (2007) also point out that patient empowerment can occur differently at various levels for each patient. For example, for one patient, it could be enough to be informed about his/her condition or disease, while for another it could be crucial to be fully in charge in every step to be taken. This leads us to thinking about whether there should be one single empowered patient profile, or whether instead it would be more realistic to think of different empowerment profiles. Obviously empowerment can occur at different levels and patients have different ideas about what it means to them and what it takes to become empowered. Some patients simply want to be able to understand information they receive about their condition, whilst others want to have full control over and active participation in all medical-related decision-making. The literature also suggests that some patients simply do not want to be empowered, since they do not want to assume responsibility for their healthcare (cf. Bos et al. 2008), an assumption which is worthwhile exploring further in the SUSTAINS project. 3.3 The link between ehealth and patient empowerment If patient empowerment refers to a philosophy or a value, ehealth can be seen as one of the tools which can make its practical implementation possible. If implemented correctly, ehealth can present huge opportunities for encouraging and enabling patients to be more actively involved in managing their own health through the use of information and communication technology (ICT). However, while a wide number of ehealth services and applications have claimed to support patient empowerment, in fact most of them were not designed having patient empowerment in mind, their primary objective being to support health organisations and healthcare professionals. A first attempt to classify ehealth services and applications according to their contribution to patient empowerment was produced in the context of the Awards for ehealth2004 (Cork ehealth Conference and reported by Monteagudo and Moreno, Report on Priority Topic Cluster Two and recommendations ehealth ERA project). This classification is based on three categories which are briefly presented below: Category 1: ehealth information tools and services for citizens / patients focusing on the electronic provision of health and wellness information to Public Page 13 of 74 v1.0 / 25th January 2013

14 citizens. Examples of such tools included general health portals or intelligent aids to interact with databases searching for tailored information. Category 2: ehealth management support tools and services for citizens / patients focusing on applications which allow citizens to interface with health service providers electronically in order to better support their use of health services. Such tools included electronic appointment booking, eligibility assessment, or eprescriptions. Category 3: ehealth homecare and telemedicine tools and services for chronically ill citizens (patients) focusing on applications that allow citizens who are receiving healthcare to be supported in their personal environment, whether fixed or mobile, outside traditional healthcare facilities. Such applications included ehealth tools for the monitoring of conditions and treatments (e.g. pacemaker monitoring, remote ECG); ehealth tools for interactive diagnosis and support of citizens at home (e.g. dermatology, wound management), and ehealth for emergency and risk management (e.g. triage, accident and emergency management). Patient-accessible EHR and related services fall within the second category. At their most basic level, this type of service provides patients with access to personal health data to support personal health management and enable sound decision making. The main rationale behind a patient-accessible EHR has been to empower patients with a sense of ownership of their care, and to improve communication between both patients and clinicians, as well as between different clinicians involved in that person s care. The introduction of web-based EHRs accessible to patients has been considered by some authors to revolutionise communication between patients and healthcare professionals. Ross and Lin (2003) pointed out in this respect that one of the most remarkable outcomes of patients having access to their health records is the enhanced communication between patients and healthcare professionals, which in turn, as observed by Kirshner (2003), leads to improved mutual trust. Trust motivates self-care and is central in determining whether a patient merely "looks at" or "uses" his or her medical records, stated Winkelman, Leonard, and Rossos (2005). 3.4 Drawing some initial conclusions A key lesson that can be drawn from the literature is that the concept of patient empowerment stems from the assumption that patients want to be more in control of their healthcare, and that such control will yield benefits for them. In addition, it presumes that healthcare professionals support patients in gaining such control. Another key assumption behind patient empowerment is that information empowers patients, and that informed and empowered patients take better care of their health. In this context, ICT carry huge potentials for enabling patient empowerment. An important element to be retained at this stage is that seeing empowerment as both a (continuous) process as well as an outcome is probably the right way to approach this complex notion. While the former focuses more on the personal Public Page 14 of 74 v1.0 / 25th January 2013

15 transformation (empowering) process and the conditions for enabling it, the latter emphasises the results of this process, thus the changing role of the patient vis-àvis his/her condition and the healthcare system as a whole. Both angles are equally valid, and will be looked at in the assessment of patient empowerment within this project. The foregoing findings suggest that there is a general trend pointing to the importance of individual involvement in health decision-making. In this respect, Monteagudo and Moreno (2007: 9) called attention to the fact that patient empowerment can be considered as a philosophy of healthcare that proceeds from the perspective that optimal outcomes of healthcare interventions are achieved when patients become active participants in the healthcare process. There is at the same time an increasing emphasis in both scientific and grey literature on linking patient empowerment to the changing relationship between patients and healthcare professionals, one in which both parties carry equal value and are considered equal partners in a therapeutic alliance (see notion of concordance ). Consequently one can think of patient empowerment as a loop that feeds itself. Moreover, it is evident that patient empowerment is closely linked to healthcare professionals as much as patients themselves, and involves complex questions concerning the distribution of power and responsibilities between those who use (patients) and those who provide health services (healthcare professionals). As noted by Ouschan, Sweeney, Lester, and Johnson (2008: 103), patient empowerment entails various dimensions stretching beyond mere emphasis on patient education, to also include elements such as patient control, self-efficacy, as well as patient participation, with the latter looking at the changing / changed relationship between the patient and healthcare professional, one in which the former pro-actively collaborates with the latter rather than just passively complying with healthcare professionals orders and medical advices. To put it differently, the notion of patient empowerment includes not only what is generally referred to as health literacy - the ability to make sound health decisions in the context of everyday life and navigate through the health system but it encompasses other dimensions relating to the relation between the patient and the treatment process, as well as the active involvement of the patient in a democratic and equal relationship with healthcare professionals. Furthermore, the concept could also be used to include the attitude of healthcare professionals towards patient empowerment and their willingness to support the patient throughout the process. On the basis of the foregoing, we have developed a SUSTAINS patient empowerment definition according to which patient empowerment is defined as: patients having the ability to understand health information and make effective use of it, as well as to gain control over and participate in a meaningful way in the disease management process in an equal partnership with healthcare professionals. Public Page 15 of 74 v1.0 / 25th January 2013

16 The next chapters translate knowledge acquired through this brief literature review into concrete elements of patient empowerment from which to derive the set of indicators that will be used to build the patient empowerment questionnaire. Public Page 16 of 74 v1.0 / 25th January 2013

17 4. Components and Indicators of Patient Empowerment 4.1 Components of Patient Empowerment In this section, a number of components of patient empowerment are presented. These components have been directly derived from the literature review and were specifically chosen bearing in mind the ehealth services offered to citizens and patients in the framework of the SUSTAINS project. Patients involvement in treatment decisions Meaningful involvement of patients in treatment decisions by healthcare professionals is crucial for patient empowerment. However, as discussed above, it takes more than providing patients with information about the disease / condition and possibilities of treatment. Patients should be fully aware if they have other options, and should not be reluctant to ask for a second opinion. The decisionmaking power of patients would increase in direct proportion with increased health literacy, increased access to health information, and increased access to decisionmaking aids. Health literacy Health literacy is identified as a crucial aspect of patient empowerment. It could be defined as a person s capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions anywhere (at home, at the workplace, in the healthcare system, in the market place, in the political arena, etc.). On the other hand, health literacy also includes improved access to information and knowledge, informed consent, and capacity of negotiation skills. It is very important for patients to be able to understand basic information about their health situation in order to succeed in treatment. Finally, patients should also be able to monitor their own healthcare progress, and help healthcare professionals through making use of self-evaluation schemes and providing regular updates on various aspects of their health. Access to health information Although considered as a part of health literacy, we would like to treat actively searching for health information and being able to understand this information separately. Access to information is particularly crucial because of the occasional need to take health-related decisions which may have implications on one s health. Thus, it is important that patients are able to distinguish between quality information and what is commonly referred to as information pollution, to think critically and unlearn conditioning. Public Page 17 of 74 v1.0 / 25th January 2013

18 In the context of the SUSTAINS project, EHR services are expected to facilitate patients access to necessary and relevant information by keeping a record of the patients health (e.g. specificities regarding the condition, medication used, etc.). Moreover, in most regions where EHR services are provided, patients are able to ask questions to their physician or nurse, which helps them access correct health information. Access to decision-making aids Patients often need and are expected to take decisions with regard to their healthcare and treatment. Decision-making aids are meant to supplement advice given by healthcare professionals with regard to their disease / condition. Besides health literacy and relevant health information, patients might also need various more specific decision support systems. SUSTAINS EHR services include such support systems in a number of regions. Patients control over their treatment Increased involvement in decision-making, health literacy, access to health information and decision-making aids give patients more control over treatment. Empowered patients take responsibility for their health and seek care only when it is necessary. Communication with healthcare professionals As discussed in the previous chapter, giving patients access to their EHR services should have a positive impact on the patient-healthcare professional communication and lead to strengthened trust and shared decision-making. Moreover, with the patient having the chance to monitor his/her state of health through his/her EHR, both patient and healthcare professionals could use their time together more efficiently and go though some more complex issues. Finally, encounters could be more effective, and the patients would come better prepared for the encounter. 4.2 Indicators of Patient Empowerment Drawing on the main conclusions of the literature review conducted on patient empowerment and the identification of its main components this section presents the indicators that have been identified for the development of the SUSTAINS Patient Empowerment Questionnaire. When choosing the indicators, special attention has been paid to narrowing down the scope to the patient empowerment components that ought to be affected by the use of the services offered to patients in the framework of the SUSTAINS project. This list of indicators is not exclusive, yet serves as a good basis in terms of measuring patient empowerment. Public Page 18 of 74 v1.0 / 25th January 2013

19 Indicators have been clustered under three patient empowerment dimensions which have been defined as follows: Dimension 1: Patient knowledge This dimension looks at the relationship between the patient and his/her understanding of health information and his/her ability to make effective use of it. The patient knowledge dimension includes most of the elements that are traditionally regarded as forming part of so-called health literacy, although the latter concept includes elements stretching beyond mere knowledge and understanding of health information, which, for the purpose of this framework, have been included in the patient control and patient participation dimensions (see below). Dimension 2: Patient control This dimension looks at the patient role in the management of his/her health and/or condition. The patient being in control over his/her disease through regular monitoring as well as adherence to treatment plan are elements of this dimension. Dimension 3: Patient participation This dimension looks at the relationship between the patient and healthcare professionals, and explores the changing role of patients during encounters with healthcare professionals as well as throughout the medical decision-making process. Patient preparing before consultations with healthcare professionals and actively participating during consultations are elements of this dimension. The indicators selected for each of the three patient empowerment domains are fleshed out in the table below with more detailed sub-indicators. Apart from the indicators and sub-indicators identified for these three dimensions, it was decided that one more question would be asked in the survey with regard to patients overall satisfaction with their relationship with healthcare professionals. Table 1: Patient empowerment indicators Dimensions Indicators Sub-Indicators Patient knowledge The extent to which the patient understands health information The extent to which the patient understands health information received orally during face to face visits with healthcare professionals The extent to which the patient understands health information received in a written form such as test results, medical reports, etc. Public Page 19 of 74 v1.0 / 25th January 2013

20 Dimensions Indicators Sub-Indicators The extent to which the patient understands health information from health-related websites and from Health Apps The extent to which the patient understands the impact of his/her disease in terms of life-style adaptations he/she needs to make Patient in control of the management of his/her health condition The extent to which the patient can understand his/her disease and its implications The extent to which the patient monitors his/her treatment progress The extent to which the patient adheres to treatment plans and disease-related life-style adjustments The extent to which the patient is aware of the warning signs / symptoms related to his/her disease The extent to which the patient is aware of the possible developments of his/her disease The extent to which the patient feels well-informed on the treatment options of his/her disease The extent to which the patient regularly checks his/her health status and/or the progress of his/her disease The extent to which the patient notifies healthcare professionals in case of any warning signs The extent to which the patient makes regular health checks on himself/herself The extent to which the patient complies with lifestyle-related advice received from healthcare professionals The extent to which the patient follows to his/her medication as prescribed (dosage, schedule, etc.) The extent to which the patient performs and documents the health checks / measurements that have been suggested to him/her by his/her healthcare professionals Public Page 20 of 74 v1.0 / 25th January 2013

21 Dimensions Indicators Sub-Indicators The extent to which the patient regularly requests to receive his/her test results / medical reports (from his/her health provider) Patient participation Patient satisfaction The extent to which the patient is prepared for consultations with healthcare professionals (information) The extent to which the patient actively participates during a consultation with healthcare professionals The extent to which the patient is satisfied with his/her relationship with healthcare professionals The extent to which the patient thinks (in advance) of possible questions to ask his/her doctor during consultations The extent to which the patient looks for additional information / second opinions himself/herself regarding his/her personal health results in recent reports The extent to which the patient has a say in defining the treatment plan The extent to which the patient gets healthcare professionals' attention to the points he/she needs to be addressed The extent to which the treatment plan reflects the patient s preferences (outcomes aimed for, treatment option selected, etc.) Public Page 21 of 74 v1.0 / 25th January 2013

22 5. Method of the SUSTAINS Patient Empowerment Survey 5.1 Regions where the survey will be launched Although meant to be implemented in all 11 regions participating in the SUSTAINS project, the patient empowerment survey will be launched in nine regions, namely South Karelia (Finland), Estonia, Slovenia, Aragon (Spain), Basque Country (Spain), Uppsala (Sweden), Veneto (Italy), Central Greece, and South Denmark. NHS Scotland decided not to take part in the survey because the region is participating in the project with services which have been implemented since As the Patient Empowerment Survey aims to assess patient empowerment both before and after the use services, the methodology did not fit the case of Scotland. Norrbotten (Sweden) also declared that they would either not take part or get involved in the study at a later stage due to bureaucratic problems that they are facing. 5.2 Questionnaire development As explained in the previous chapter, various dimensions of patient empowerment and measurable indicators / sub-indicators related to these dimensions were identified in autumn The next step was to develop the survey questionnaire drawing on these indicators and sub-indicators. To that end, a Task Force composed of qualified members of the SUSTAINS Consortium from EHTEL and Uppsala County Council was set up. The Task Force held five teleconferences over the course of five weeks in October The work of this team started with the re-formulation and finalisation of the patient empowerment indicators and sub-indicators of the survey, and moved on to the development of the survey questionnaire. Based on the outcomes of the work of the Task Force, EPF produced an initial draft of the survey questionnaire which was shared with partners for further input. In due course, EPF consulted another external researcher and numerous native English speakers to review the questionnaire. Finally, the questionnaire was tested with four native English speakers to see whether the questions were formulated sufficiently clearly to collect usable input. The English language source survey questionnaire was ready by the end of November 2012, and is set out in Appendix A. 5.3 Translation of the questionnaire After it was finalised, the source questionnaire was sent to Lexitech, a professional translation company, and project partners to be translated into eight other Public Page 22 of 74 v1.0 / 25th January 2013

23 languages. Lexitech translated the questionnaire into Finnish, Estonian, Slovenian, Swedish, Italian, and Greek. Three partners volunteered to translate the questionnaire into their languages: the partner in Aragon translated the questionnaire into Spanish, the partner in Basque Country translated it into Basque, and the partner in South Denmark translated it into Danish. The translated texts received from Lexitech were sent to the relevant partners for review, and Aragon s translation was also sent to the Basque Country. Most partners provided their feedback on the translated questionnaire and made changes wherever necessary by December The latest versions of the translated questionnaires, as at January 2013, are set out in Appendix B. 5.4 Data Collection The Patient Empowerment Survey will be conducted twice, at ex-ante (before patients start using the services) and ex-post (after at least 12 months of service usage) in order to see whether patients have become more empowered as a result of having access to their EHR as well as using the various EHR-related services available to them. The first wave of the survey will take place between January and May 2013, while the second wave of data collection will take place between March and May Data will be collected through the EHRs of patients / citizens in the nine regions. To collect data, EHR users will be invited to complete the questionnaire through placing a pop-up window in their EHR interface or through inviting them by . Most regions agreed that panel data would be collected, which means that the exante and ex-post data would be collected from the same individuals. To this end, an electronic ID will be generated automatically for each respondent in each region the first time they respond to the questionnaire. Approximately one year later, the respondents of the first wave will be invited to take the survey again and their responses will be recorded under the same identification number. No data will be retrieved from the personal EHRs of the respondents, and their identities will be encrypted in the form of a randomly generated ID. Moreover, all data collected will be kept confidential, and will be used only to derive general conclusions for the whole group. In regions where it is not possible to implement the panel data approach, a crosssectional approach will be followed. The survey targets the patient population using the SUSTAINS services i.e. people who have been diagnosed with a chronic condition. However, data will be collected from both patients and non-patients, since it is not a good idea to retrieve the information on whether the person is a patient or not from his/her EHR and invite him/her based on this information. For this reason the questionnaire was prepared to fit both purposes collecting data from both patients and citizens in general. The total sample size aimed to be reached in this survey is 4839 respondents. See the table below for the break down of the sample sizes among the nine regions. Public Page 23 of 74 v1.0 / 25th January 2013

24 Region Table 2: Sample size per region Expected number of users Sample size confidence level = 95% confidence interval = 4 Uppsala County 25, Veneto 10, Aragon 5, Basque Country 27, Estonia 40, Central Greece South Denmark 10, South Karelia 6, Slovenia 20, TOTAL 144,250 4, Techniques of analysis For a questionnaire structure where we plan to measure abstract concepts with concrete indicators, we can use the Confirmatory Factor Analysis technique since it offers the opportunity to see whether the anticipated relationships between the indicators and the abstract concepts identified exist or not in the data we collect. In this study we have three levels of abstractions: (1) Indicators; (2) Dimensions; and (3) The concept of patient empowerment. For this reason we can use third-order factor analysis to see whether the structure proposed matches with the reality based on the responses collected. Working with the averages, multilevel analysis provides the opportunity to observe the differences in terms of dependencies between various variables at different levels. Since the survey will be conducted twice, the first level will be the regions and the second will be the waves each region will have data from two waves. This will help us see the change in averages from the first wave to the second in the context of dependencies. Finally, for the regions that collect panel data, we will be able to conduct further longitudinal analysis to figure out which types of people, under which circumstances, changed their responses from one point to another from the first wave to the second. Public Page 24 of 74 v1.0 / 25th January 2013

25 5.6 Exploring patient empowerment further The assessment of patient empowerment in the SUSTAINS project will be undertaken through a mix of quantitative and qualitative research methods. Quantitative data will be collected through the SUSTAINS Patient Empowerment Survey; this will be further complemented with the implementation of a series of focus groups aimed at collecting qualitative information to better explore the link between empowerment and the ehealth services offered by the SUSTAINS project. Focus groups will be conducted in all nine regions in Public Page 25 of 74 v1.0 / 25th January 2013

26 Appendix A Questionnaire in English Invitation text in the pop-up window: Please complete our questionnaire to contribute towards EHR services being more responsive to your needs: LINK Preamble: The purpose of this survey is to assess the impact of patients access to their Electronic Health Records (EHR) and related services on patient empowerment over time in eleven regions in Europe. The survey will have two phases. The first phase to start at the end of 2012 is the baseline assessment prior to patients access to EHR services, and the second phase to start at the beginning of 2014 aims to assess whether patients became more empowered as a result of using EHR services. More information can be found at We would appreciate if you could complete this questionnaire based on your own experience with the healthcare system and health services you use. This should take no longer than 15 minutes. Anyone with or without a chronic condition can respond the questionnaire and contribute towards EHR services being more responsive to patients needs. In the second phase, we will need responses from the same people who responded the first phase of the survey. If you respond to this questionnaire, an electronic ID will be generated for you and you will be invited to complete another questionnaire in one year. All information will be collected anonymously and will be treated as strictly confidential. We will not store any data from your EHR account and use the generated ID only to contact you for the second phase. If you agree to take part in this study, please tick the I agree box below and click Next to go to the questionnaire. Please don t forget to click on Done after you ve completed responding all questions. Should you have any questions about the project or the survey, please contact us: Name / phone nr I agree 1. Do you have a chronic disease or health condition that requires long-term treatment? If yes : o Yes o No Public Page 26 of 74 v1.0 / 25th January 2013

27 1.1. Please choose Communicable diseases (hepatitis, tuberculosis, HIV/AIDS, etc.) Cancer Diseases of the blood and blood-forming organs Endocrine and metabolic diseases (thyroid disease, diabetes, etc.) Mental and behavioural disorders Diseases of the nervous system Diseases of the eye Diseases of the ear Diseases of the circulatory system Diseases of the respiratory system Diseases of the digestive system Diseases of the skin and subcutaneous tissue Diseases of the musculoskeletal system and connective tissue Diseases of the genitourinary system Conditions related to pregnancy and childbirth Congenital malformations and chromosomal abnormalities Other:. 2. How much of the health information that you receive from healthcare professionals during face-to-face visits do you understand? 1 (none) (all) Unable to respond 3. How much of the health information from test results and medical reports you receive electronically or on paper do you understand? 1 (none) (all) Unable to respond 4. How much of the health information from other health-related sources such as websites, books, etc. do you understand? 1 (none) (all) Unable to respond 5. How much are you aware of the warning signs/symptoms related to your health? 1 (not at all) (entirely) Unable to respond If the respondent s answer to the 1 st question is NO, they shouldn t be asked the questions 6, 7, and How much do you understand the impact of your disease in terms of life-style adaptations? 1 (not at all) (entirely) Unable to respond Public Page 27 of 74 v1.0 / 25th January 2013

28 7. How much do you think you are aware of the possible progression of your disease? 1 (not at all) (entirely) Unable to respond 8. How well-informed do you think you are about the treatment options regarding your disease? 1 (not at all) (entirely) Unable to respond 9. How often do you check your general health when you are feeling alright? 1 (never) (always) Unable to respond 10. How promptly do you follow up on any warning signs about your health? 1 (never) (immediately) Unable to respond 11. How much of the life-style related advice you receive from healthcare professionals do you follow? 1 (none) (all) Unable to respond 12. Do you take your medication exactly as prescribed? 1 (not at all) (entirely) Unable to respond 13. How often do you record data of health monitoring activities suggested to you by healthcare professionals? 1 (never) (always) Unable to respond 14. How often do you read your available test results or medical reports before going to face-to-face consultations with your doctor? 1 (never) (always) Unable to respond 15. Do you think of questions in advance that you want to ask your doctor during faceto-face consultations? 1 (never) (every time) Unable to respond Public Page 28 of 74 v1.0 / 25th January 2013

29 16. Do you look for additional information regarding your health? 1 (never) (always) Unable to respond 17. How much say do you think you have in making decisions regarding your treatment? 1 (none) (entirely) Unable to respond 18. To what extent do you feel able to draw your healthcare professionals attention to the issues that are a priority for you? 1 (not at all) (entirely) Unable to respond 19. How much does your treatment plan reflect your preferences and choices? 1 (not at all) (entirely) Unable to respond 20. How satisfied are you with your relationship with the healthcare professionals you regularly interact? 1 (not at all) (entirely) Unable to respond 21. What is your gender? Male Female 22. In which year you were born? (Dropdown list) 23. What is the highest education level you attained? Primary education Lower secondary education Upper secondary education or Post-secondary non-tertiary education (vocational training for specific labour markets) First stage tertiary education university-level, academic and vocational education Second stage tertiary education further university-level studies (master s and PhD) Public Page 29 of 74 v1.0 / 25th January 2013

30 24. In general, how frequently do you visit a doctor (GP or specialist) for any type of consultations? Once a week or more Once every two weeks Once every three weeks Once every month Three or four times a year One or two times a year Less than once a year Never 25. How long does it take you to reach to the closest primary care centre? 15 minutes or less Between 15 to 30 minutes Between 30 minutes and one hour Between one and two hours More than two hours Don t know 26. How long does it take you to reach to your general practitioner? 15 minutes or less Between 15 to 30 minutes Between 30 minutes and one hour Between one and two hours More than two hours Don t know 27. How long does it take you to reach to the closest hospital? 15 minutes or less Between 15 to 30 minutes Between 30 minutes and one hour Between one and two hours More than two hours Don t know DONE or SUBMIT button here Thank you for taking the time to complete this questionnaire! Public Page 30 of 74 v1.0 / 25th January 2013

31 Appendix B Translated questionnaires B.1 Questionnaire in Basque Gonbidapen testua pop-up elementuan: Osasun Karpetaren bidez eskainitako zerbitzuak zure beharretara hobeto egokitzeko, mesedez, erantzun itzazu ondorengo galdera hauek. Sarrera: Inkesta honen helburua honako hau da, Europako 11 eskualdeetan, gaixoek Osasun Karpeta eta haren inguruko zerbitzuetara atzitu eta denboran zehar beraien boteretzearengan daukan eragina neurtzea. Inkesta 2 zatitan bereiziko da. Lehenengo zatia 2012ko amaieran hasiko da eta gaixoek Osasun Karpeta atzitu aurretik, hasierako ebaluazioa egingo da. 2014ko hasieran abiatuko den bigarren zatiak, gaixoek Osasun Karpetako zerbitzuak erabiltzeagatik boteretuagoak dauden neurtzea du helburu. Informazio gehiago web orrian eskuragarri dago. Osasun sistema eta erabiltzen dituzun osasun zerbitzuekin daukazun esperientzia personalean oinarrituta, galdera hauek erantzutea eskertuko genuke. Ez lituzke 15 minutu baino gehiago eraman behar. Edonork erantzun ditzake galdera hauek, bai gaixotasun kronikoren bat daukatenek, baita ez dutenek ere. Horrela, Osasun Karpetako zerbitzuek gaixoen beharrei hobeto erantzuten lagunduko diguzu. Bigarren zatian, inkestako lehenengo zatian parte hartu duten pertsona berdinek erantzutea beharko genuke. Galdera hauek erantzuten badituzu, identifikatzaile elektroniko bat sortuko da zuretzako eta urtebete barru beste galdera-sorta bat erantzutera gonbidatuko zaitugu. Jasotako informazio guztia anonimoa izango da eta konfidentzialtasun osoz tratatuko da. Inolaz ere ez dugu zure Osasun Karpetako datu pertsonalik gordeko, eta aipaturiko identifikatzailea inkestako bigarren zatian zurekin berriro harremanetan jartzeko besterik ez da erabiliko. Ikerketa honetan parte hartzearekin ados bazaude, mesedez Ados nago laukia sakatu eta Hurrengoa botoian klik egin galdera-sortara joateko. Mesedez, ez ahaztu Amaitu botoian klik egitea galdera guztiak erantzuteaz bukatzen duzunean. Proiektua edo inkestari buruz edozein galdera izanez gero, mesedez jar zaitez gurekin kontaktuan: Josu Xabier Llano jllano@osatek.net/ edo Iraitz Manterola iraitz.manterola@tecnalia.com / Ados nago Public Page 31 of 74 v1.0 / 25th January 2013

32 1. Epe-luzerako tratamendurik behar duen gaixotasun kroniko edo osasun arazorik badaukazu? Baiezkotan: Bai Ez Aukeratu mesedez: Gaixotasun kutsakorrak (hepatitisa, tuberkulosia, IHESa, etb.) Minbizia Odoleko eta organo odol-sortzaileetako gaixotasunak Gaixotasun endokrino eta metabolikoak (tiroideseko gaixotasuna, diabetea etb.) Buruko gaixotasunak eta portaeren desorekak Nerbio sistemako gaixotasunak Begietako gaixotasunak Belarriko gaixotasunak Zirkulazio sistemako gaixotasunak Arnas sistemako gaixotasunak Liseri aparatuko gaixotasunak Larruazaleko eta azal azpiko ehunen gaixotasunak Sistema muskulo-eskeletikoaren eta ehun konektiboaren gaixotasunak Ugaltze eta gernu aparatuen gaixotasunak Haurdunaldi eta erditzearen inguruko arazoak Sortzetiko malformazioak eta kromosoma-anormalitateak Bestelakoak:. 2. Osasun profesionalekin izaten dituzun aurrez-aurreko kontsultetan jasotako osasun informaziotik, zenbat ulertzen duzu? 1 (ezer ez) (dena) ED/EDE ED/EDE: ez daki/ez du erantzuten 3. Bai elektronikoki, bai paperean dituzun frogen emaitzetatik eta mediku txostenetatik zenbat ulertzen duzu? 1 (ezer ez) (dena) ED/EDE 4. Osasunarekin erlazionaturiko beste informazio-iturrietatik (webguneak, liburuak etb. ) jasotako informaziotik zenbat ulertzen duzu? 1 (ezer ez) (dena) ED/EDE 5. Ze puntutaraino zara jakitun zure osasunarekin erlazionaturiko abisu zeinu eta sintometaz? 1 (batere) (guztiz) ED/EDE - Mesedez, utzi erantzun gabe 6, 7 eta 8 galderak gaixotasun kronikorik ez badaukazu! Public Page 32 of 74 v1.0 / 25th January 2013

33 6. Ze puntutaraino ulertzen duzu zure gaixotasunak zure bizitza estiloaren egokitzapenean daukan eragina? 1 (batere) (guztiz) ED/EDE 7. Ze puntutaraino uste duzu zarela jakitun zure gaixotasunak eduki dezakeen garapenaz? 1 (batere) (guztiz) ED/EDE 8. Zure gaixotasuna tratatzeko dauden aukeretaz ondo informatuta zaudela uste duzu? 1 (batere) (guztiz) ED/EDE 9. Ondo aurkitzen zarenean, ze maiztasunarekin kezkatzen zara zure osasun egoeraz? 1 (inoiz ez) (askotan) ED/EDE 10. Zure osasunarekin erlazionaturiko abisu zantzuak nabaritzerakoan berehala zure osasunarekin kezkatzen al zara? 1 (inoiz) (berehala) ED/EDE 11. Bizitza estiloaren inguruan osasun profesionalengandik jasotako aholkuetatik zenbat jarraitzen dituzu? 1 (batere) (denak) ED/EDE 12. Botikak zehazki agindu dizkizuten bezala hartzen dituzu? 1 (ez) (zeharo) ED/EDE 13. Ze maiztasunarekin gordetzen dituzu osasun profesionalek gomendatutako osasun egoeraren monitorizazioaren inguruko datuak (pisua, tentsioa )? 1 (inoiz ez) (beti) ED/EDE 14. Zure medikuarekin aurrez-aurreko kontsulta bat eduki aurretik, ze maiztasunarekin irakurtzen dituzu eskuragarri dituzun azterketen emaitzak eta mediku txostenak? 1 (inoiz ez) (beti) ED/EDE Public Page 33 of 74 v1.0 / 25th January 2013

34 15. Aurrez-aurreko kontsulten aurretik, zure medikuari egin nahi dizkiozun galderetan pentsatzen al duzu? 1 (inoiz ez) (beti) ED/EDE 16. Zure osasunaren inguruko informazio osagarria bilatzen al duzu? 1 (inoiz ez) (beti) ED/EDE 17. Zure tratamenduaren inguruko erabakietan zenbat esateko daukazula iruditzen zaizu? 1 (ezer ez) (guztiz) ED/EDE 18. Ze puntutaraino sentitzen zara gai, osasun profesionalen arreta zuretzako lehentasuna duten gaietara erakartzeko? 1 (batere) (guztiz) ED/EDE 19. Zure tratamendu planak ze puntutaraino isladatzen ditu zure lehentasunak eta aukerak? 1 (batere) (guztiz) ED/EDE 20. Ze puntutaraino zaude pozik normalean egoten zaren osasun profesionalekin daukazun harremanarekin? 1 (batere) (guztiz) ED/EDE 21. Sexua Gizonezkoa Emakumezkoa 22. Zein urtean jaio zinen? 23. Zein da zure ikasketa maila? Lehen mailako ikasketak eta hortik beherakoak (OHO, Lehen Hezkuntza, Haur Hezkuntza eta antzekoak) Bigarren mailako ikasketak (oinarrizko batxilergoko ikasketak eta ikasketa baliokideak, Derrigorrezko bigarren hezkuntzakoak, Lanbide Heziketa, goi mailako batxilergoko ikasketak edo BBB, Batxilergokoak (LOGSE), unibertsitaterako sarbidea eta antzekoak) Erdi maila eta goi maila arteko ikasketak (ingeniaritza tekniko eta peritutzako ikasketak, irakasle-ikasketak, erizaintza, diplomaturak eta maila bereko beste hainbat) Goi-mailako ikasketak (lizentziaturako ikasketak, goi-mailako ingeniaritza eta antzekoak Unibertsitate ondoko ikasketak (doktorego eta masterrak) Public Page 34 of 74 v1.0 / 25th January 2013

35 24. Orokorrean, ze maiztasunarekin joaten zara medikuarengana (famili-medikua edo espezialista) edozein motatako kontsultak egitera? Astean behin edo gehiagotan Bi astean behin Hiru astean behin Hilabetean behin Urtean hiru edo lau aldiz Urtean behin edo bitan Urtean behin baino gutxiago Inoiz ez 25. Zenbat denbora behar duzu gertuen daukazun oinarrizko zaintza zentrura joateko? 15 minutu edo gutxiago 15 eta 30 minutu artean 30 minutu eta ordubete artean Ordubete eta biren artean Bi ordu baino gehiago Ez dakit 26. Zenbat denbora behar duzu zure famili medikuarengana iristeko? 15 minutu edo gutxiago 15 eta 30 minutu artean 30 minutu eta ordubete artean Ordubete eta biren artean Bi ordu baino gehiago Ez dakit 27. Zenbat denbora behar duzu gertuen daukazun ospitalera iristeko? 15 minutu edo gutxiago 15 eta 30 minutu artean 30 minutu eta ordubete artean Ordubete eta biren artean Bi ordu baino gehiago Ez dakit DONE or SUBMIT button here Eskerrik asko galdera hauek erantzuteagatik! Public Page 35 of 74 v1.0 / 25th January 2013

36 B.2 Questionnaire in Finnish Invitation text in the pop-up window: Täyttämällä tämän kyselylomakkeen autat kehittämään sähköisiä potilastietopalveluja, jotta ne vastaisivat jatkossa paremmin tarpeitasi: LINK Preamble: Tutkimuksen tarkoituksena on arvioida, kuinka kansalaisten käyttämät sähköiset palvelut (OmaHyvis) vaikuttaa ajan kuluessa heidän voimaantumiseensa. Tutkimus toteutetaan Euroopassa yhdessätoista eri maassa kahdessa eri vaiheessa. Ensimmäinen vaihe on vuoden 2012 lopussa alkava perusarviointi, joka suoritetaan ennen kuin potilaat pääsevät käyttämään sähköisiä potilastietopalveluja. Toinen vaihe käynnistyy vuoden 2014 alussa, jolloin arvioidaan, onko sähköisten potilastietopalvelujen käyttö edistänyt potilaiden voimaantumista. Lisätietoja projektista on saatavilla osoitteesta Vastaustesi tulee perustua omakohtaisiin kokemuksiisi terveydenhuoltojärjestelmästä ja terveydenhoitopalveluista. Lomakkeen täyttäminen vie enintään 15 minuuttia. Kyselyyn voi osallistua riippumatta siitä, onko vastaajalla jokin pitkäaikaissairaus. Tulokset auttavat kehittämään sähköisiä asiointipalveluja jotta ne vastaisivat jatkossa paremmin kansalaisten tarpeita. Toisessa vaiheessa tarvitsemme vastaajiksi samoja henkilöitä, jotka osallistuivat tutkimuksen ensimmäiseen vaiheeseen. Jos vastaat tähän kyselyyn, luomme sinulle sähköisen henkilötunnisteen ja pyydämme sinua vuoden sisällä täyttämään toisen kyselylomakkeen. Kaikki tiedot kerätään nimettöminä ja käsitellään ehdottoman luottamuksellisesti. Emme tallenna potilastietojasi, ja käytämme luomaamme henkilötunnistetta ainoastaan ottaaksemme sinuun yhteyttä tutkimuksen toista vaihetta varten. Jos hyväksyt tämän ja suostut osallistumaan tutkimukseen, valitse alla kohta Hyväksyn ja siirry lomakkeeseen painamalla Seuraava. Vastattuasi kaikkiin kysymyksiin muista painaa lopuksi Valmis. Jos sinulla on kysyttävää tähän projektiin tai tutkimukseen liittyen, voit ottaa meihin yhteyttä: Marjukka Ervelius I agree 1. Onko sinulla jokin krooninen sairaus, joka vaatii pitkäaikaista hoitoa? Kyllä Ei Public Page 36 of 74 v1.0 / 25th January 2013

37 (Jos vastasit kyllä ) 1.1. Valitse jokin seuraavista vaihtoehdoista Tartuntataudit (hepatiitti, tuberkuloosi, HIV/AIDS jne.) Syöpätaudit Veren ja verta muodostavien elinten sairaudet Umpieritys- ja aineenvaihduntasairaudet (kilpirauhassairaus, diabetes jne.) Mielenterveyden ja käyttäytymisen häiriöt Hermoston sairaudet Silmäsairaudet Korvasairaudet Verenkiertoelinten sairaudet Hengityselinten sairaudet Ruuansulatuselinten sairaudet Ihon ja ihonalaiskudoksen sairaudet Tuki- ja liikuntaelinten sekä sidekudoksen sairaudet Virtsa- ja sukupuolielinten sairaudet Raskauteen ja synnytykseen liittyvät sairaudet Synnynnäiset epämuodostumat ja kromosomipoikkeavuudet Muut:. 2. Kuinka suuren osan ymmärrät terveydenhoitoalan ammattilaisilta kasvotusten vastaanotoilla saamastanne tiedosta? 1 (en mitään) (kaiken) En pysty vastaamaan 3. Kuinka suuren osan ymmärrät sähköisesti tai paperilla saamistasi koetuloksista ja lääkärinlausunnoista? 1 (en mitään) (kaiken) En pysty vastaamaan 4. Kuinka suuren osan ymmärrät verkkosivustoilta, kirjoista tai muista terveyteen liittyvistä lähteistä saamastasi tiedosta? 1 (en mitään) (kaiken) En pysty vastaamaan 5. Kuinka tietoinen olet terveydentilaasi liittyvistä oireista tai varoitusmerkeistä? 1 (en lainkaan) (täysin) En pysty vastaamaan Question logic here: If the respondent answers NO to the 1 st question, don t show them questions 6, 7, and 8! Public Page 37 of 74 v1.0 / 25th January 2013

38 6. Kuinka selvästi ymmärrät sairautesi vaikutuksen tiettyihin elintapoihin? 1 (en lainkaan) (täysin) En pysty vastaamaan 7. Kuinka tietoinen olet sairautesi mahdollisesta etenemisestä suuntaan tai toiseen? 1 (en lainkaan) (täysin) En pysty vastaamaan 8. Kuinka hyvin olet perillä sairautesi hoitovaihtoehdoista? 1 (en lainkaan) (täysin) En pysty vastaamaan 9. Kuinka usein tarkistutat yleisen terveydentilasi, jos tunnet olevasi kunnossa? 1 (en koskaan) (aina) En pysty vastaamaan 10. Kuinka nopeasti reagoit varoitusmerkkeihin koskien terveydentilaasi? 1 (en koskaan) (välittömästi) En pysty vastaamaan 11. Kuinka suurelta osin noudatat terveydenhoitoalan ammattilaisilta saamiasi elintapoihin liittyviä ohjeita? 1 (en lainkaan) (kaikkia) En pysty vastaamaan 12. Otatko lääkityksesi täsmälleen reseptin ohjeiden mukaisesti? 1 (en lainkaan) (täysin) En pysty vastaamaan 13. Kuinka usein kirjaat ylös terveydenhoitoalan ammattilaisten suosittelemaan terveyden tarkkailuun liittyvät tiedot? 1 (en koskaan) (aina) En pysty vastaamaan 14. Kuinka usein luet saatavilla olevat koetulokset tai lausunnot ennen kuin keskustelet asiasta vastaanotolla lääkärisi kanssa? 1 (en koskaan) (aina) En pysty vastaamaan Public Page 38 of 74 v1.0 / 25th January 2013

39 15. Mietitkö etukäteen kysymyksiä, jotka haluat esittää lääkärillesi vastaanoton aikana? 1 (en koskaan) (joka kerta) En pysty vastaamaan 16. Etsittekö terveydentilaasi liittyvää lisätietoa? 1 (en koskaan) (aina) En pysty vastaamaan 17. Kuinka paljon sananvaltaa uskot itselläsi olevan hoitoasi koskevissa päätöksissä? 1 (ei lainkaan) (täysi valta) En pysty vastaamaan 18. Missä määrin pystyt kiinnittämään terveydenhoitoalan ammattilaisten huomion itsellesi tärkeisiin asioihin? 1 (en lainkaan) (täysin) En pysty vastaamaan 19. Kuinka paljon hoitosuunnitelma vaikuttaa mieltymyksiisi ja valintoihisi? 1 (ei lainkaan) (täysin) En pysty vastaamaan 20. Kuinka tyytyväinen olet ajatellen suhdettasi terveydenhoitoalan ammattilaisiin, joiden kanssa olet tekemisissä säännöllisesti? 1 (en lainkaan) (täysin) En pysty vastaamaan 21. Kumpaa sukupuolta edustat? Mies Nainen 22. Minä vuonna olet syntynyt? (Dropdown list) 23. Mikä on korkein suorittamasi koulutusaste? Perusasteen koulutus Alempi toisen asteen koulutus Ylempi toisen asteen koulutus tai keskiasteen koulutus (määrätyille aloille valmistava ammatillinen koulutus) Alempi korkeakoulututkinto (akateeminen tai ammatillinen koulutus) Ylempi korkeakoulututkinto, jatko-opinnot (maisterin tai tohtorin tutkinto) Public Page 39 of 74 v1.0 / 25th January 2013

40 24. Kuinka usein käytte yleensä lääkärissä (yleis- tai erikoislääkärin vastaanotolla) minkä tahansa asian vuoksi? Kerran viikossa tai useammin Joka toinen viikko Joka kolmas viikko Kerran kuukaudessa Kolme tai neljä kertaa vuodessa Kerran tai kaksi kertaa vuodessa Harvemmin kuin kerran vuodessa En koskaan 25. Kuinka kauan kestää matkasi lähimmälle terveysasemalle? Enintään 15 minuuttia minuuttia minuuttia 1 2 tuntia Yli 2 tuntia En tiedä 26. Kuinka kauan kestää matkasi yleislääkärin vastaanotolle? Enintään 15 minuuttia minuuttia minuuttia 1 2 tuntia Yli 2 tuntia En tiedä 27. Kuinka kauan kestää matkasi lähimpään sairaalaan? Enintään 15 minuuttia minuuttia minuuttia 1 2 tuntia Yli 2 tuntia En tiedä DONE or SUBMIT button here Kiitos ajastasi ja osallistumisestasi tutkimukseen! Public Page 40 of 74 v1.0 / 25th January 2013

41 B.3 Questionnaire in Greek Invitation text in the pop-up window: Παρακαλούμε συμπληρώστε το ερωτηματολόγιο για να συνεισφέρετε κι εσείς στη βελτίωση του βαθμού που οι υπηρεσίες του EHR ανταποκρίνονται στις ανάγκες σας: LINK Preamble: Σκοπός αυτής της έρευνας είναι η αξιολόγηση του αντίκτυπου της πρόσβασης των ασθενών στα προσωπικά τους Ηλεκτρονικά αρχεία υγείας (EHR) στην ηλεκτρονική πλατφόρμα τηλεπρόνοιας και τις σχετικές υπηρεσίες που αφορούν την ενδυνάμωση των ασθενών με την πάροδο του χρόνου σε 11 περιοχές της Ευρώπης. Η έρευνα θα αποτελείται από δύο φάσεις. Η πρώτη φάση που θα ξεκινήσει στα τέλη του 2012 συνιστάται στην αρχική αξιολόγηση αναφοράς πριν επιτραπεί η πρόσβαση των ασθενών στις υπηρεσίες EHR της ηλεκτρονικής πλατφόρμας τηλεπρόνοιας και η δεύτερη φάση που θα ξεκινήσει στις αρχές του 2014 στοχεύει στην αξιολόγηση του κατά πόσο οι ασθενείς ενδυναμώθηκαν μέσω της χρήσης των υπηρεσιών EHR.της ηλεκτρονικής πλατφόρμας τηλεπρόνοιας. Περισσότερες πληροφορίες μπορείτε να βρείτε στον ιστότοπο Παρακαλούμε συμπληρώστε αυτό το ερωτηματολόγιο βάσει της δικής σας εμπειρίας με το σύστημα υγείας και τις υπηρεσίες υγείας που χρησιμοποιείτε. Δεν θα χρειαστείτε πάνω από 15 λεπτά. Αυτό το ερωτηματολόγιο μπορεί να το συμπληρώσει οποιοσδήποτε αντιμετωπίζει ή όχι κάποια χρόνια ασθένεια, συμβάλλοντας στη βελτίωση του βαθμού που οι υπηρεσίες της ηλεκτρονικής πλατφόρμας τηλεπρόνοιαςehr ανταποκρίνονται στις ανάγκες των ασθενών. Στη δεύτερη φάση, θα χρειαστούμε απαντήσεις από τα ίδια άτομα που απάντησαν στην πρώτη φάση της έρευνας. Εάν απαντήσετε σε αυτό το ερωτηματολόγιο, θα δημιουργηθεί για εσάς ένα ηλεκτρονικό αναγνωριστικό (ID) και θα κληθείτε να συμπληρώσετε άλλο ένα ερωτηματολόγιο σε ένα χρόνο. Όλες οι πληροφορίες θα συλλεχθούν ανώνυμα και θα αντιμετωπίζονται ως αυστηρά εμπιστευτικές. Δεν θα αποθηκεύσουμε κανένα στοιχείο του λογαριασμού σας στην ηλεκτρονική πλατφόρμα τηλεπρόνοιας EHR και θα χρησιμοποιήσουμε το αναγνωριστικό που δημιουργήθηκε μόνο για να επικοινωνήσουμε μαζί σας κατά τη δεύτερη φάση. Εάν συμφωνείτε να λάβετε μέρος σε αυτή τη μελέτη, παρακαλούμε σημειώστε το πλαίσιο «Συμφωνώ» παρακάτω και κάντε κλικ στο «Επόμενο» για να προχωρήσετε στο ερωτηματολόγιο. Παρακαλούμε μην ξεχάσετε να κάνετε κλικ στο «Τέλος», αφού απαντήσετε σε όλες τις ερωτήσεις. Εάν έχετε οποιαδήποτε ερώτηση σχετικά με το έργο ή την έρευνα, παρακαλούμε επικοινωνήστε μαζί μας: Αθανάσιος Μπαλλής / Συμφωνώ Public Page 41 of 74 v1.0 / 25th January 2013

42 1. Πάσχετε από κάποια χρόνια νόσο ή πρόβλημα υγείας που απαιτεί μακροχρόνια θεραπεία; (Εάν «Ναι») Ναι Όχι 1.1. Παρακαλούμε επιλέξτε (Multiple choice possible) Μεταδιδόμενες νόσοι (ηπατίτιδα, φυματίωση, HIV/AIDS κλπ.) Καρκίνος Νόσοι του αίματος και των αιμοποιητικών οργάνων Ενδοκρινικές και μεταβολικές νόσοι (θυρεοειδίτιδα, διαβήτης κλπ.) Νοητικές και συμπεριφορικές διαταραχές Νόσοι του νευρικού συστήματος Νόσοι των οφθαλμών Νόσοι των ώτων Νόσοι του κυκλοφορικού συστήματος Νόσοι του αναπνευστικού συστήματος Νόσοι του πεπτικού συστήματος Νόσοι του δέρματος και του υποδόριου ιστού Νόσοι του μυοσκελετικού συστήματος και του συνδετικού ιστού Νόσοι του ουρογεννητικού συστήματος Παθήσεις σχετικές με την κύηση και τον τοκετό Συγγενείς διαμαρτίες και χρωμοσωμικές ανωμαλίες Άλλο:. 2. Πόσες από τις πληροφορίες για θέματα υγείας που λαμβάνετε από επαγγελματίες υγείας κατά τη διάρκεια προσωπικών επισκέψεων κατανοείτε; 1 (καμία) (όλες) Δεν μπορώ να απαντήσω 3. Πόσες από τις πληροφορίες για θέματα υγείας από αποτελέσματα εξετάσεων και ιατρικές εκθέσεις που λαμβάνετε σε ηλεκτρονική ή έντυπη μορφή κατανοείτε; 1 (καμία) (όλες) Δεν μπορώ να απαντήσω 4. Πόσες από τις πληροφορίες για θέματα υγείας από άλλες πηγές σχετικές με την υγεία, όπως ιστοτόπους, βιβλία κλπ. κατανοείτε; 1 (καμία) (όλες) Δεν μπορώ να απαντήσω 5. Πόσο ενημερωμένοι είστε για τις προειδοποιητικές ενδείξεις/συμπτώματα που σχετίζονται με την υγεία σας; 1 (καθόλου) (απόλυτα) Δεν μπορώ να απαντήσω Public Page 42 of 74 v1.0 / 25th January 2013

43 Question logic here: If the respondent answers NO to the 1 st question, don t show them questions 6, 7, and 8! 6. Πόσο κατανοείτε την επίδραση της νόσου σας σε προσαρμογές του τρόπου ζωής; 1 (καθόλου) (απόλυτα) Δεν μπορώ να απαντήσω 7. Πόσο ενημερωμένοι πιστεύετε ότι είστε για την πιθανή εξέλιξη της νόσου σας; 1 (καθόλου) (απόλυτα) Δεν μπορώ να απαντήσω 8. Πόσο καλά ενημερωμένοι πιστεύετε ότι είστε για τις επιλογές θεραπείας που σχετίζονται με τη νόσο σας; 1 (καθόλου) (απόλυτα) Δεν μπορώ να απαντήσω 9. Πόσο συχνά ελέγχετε τη γενική κατάσταση της υγείας σας όταν αισθάνεστε καλά; 1 (ποτέ) (πάντα) Δεν μπορώ να απαντήσω 10. Πόσο έγκαιρα κινητοποιείστε για την παρακολούθηση τυχόν προειδοποιητικών ενδείξεων της υγείας σας; 1 (ποτέ) (αμέσως) Δεν μπορώ να απαντήσω 11. Πόσες από τις συμβουλές σχετικά με τον τρόπο ζωής που λαμβάνετε από επαγγελματίες υγείας ακολουθείτε; 1 (καμία) (όλες) Δεν μπορώ να απαντήσω 12. Λαμβάνετε τα φάρμακά σας ακριβώς όπως σας έχει συσταθεί; 1 (καθόλου) (απόλυτα) Δεν μπορώ να απαντήσω 13. Πόσο συχνά καταγράφετε στοιχεία σχετικά με δραστηριότητες παρακολούθησης της υγείας που σας προτείνουν επαγγελματίες υγείας; 1 (ποτέ) (πάντα) Δεν μπορώ να απαντήσω Public Page 43 of 74 v1.0 / 25th January 2013

44 14. Πόσο συχνά διαβάζετε τα διαθέσιμα αποτελέσματα εξετάσεων ή τις ιατρικές εκθέσεις πριν επισκεφτείτε προσωπικά τον ιατρό σας για συμβουλή; 1 (ποτέ) (πάντα) Δεν μπορώ να απαντήσω 15. Σκέφτεστε πριν από την προσωπική επίσκεψη στον ιατρό σας ερωτήσεις που θέλετε να του θέσετε; 1 (ποτέ) (κάθε φορά) Δεν μπορώ να απαντήσω 16. Αναζητάτε πρόσθετες πληροφορίες σχετικά με την υγεία σας; 1 (ποτέ) (πάντα) Δεν μπορώ να απαντήσω 17. Κατά πόσο πιστεύετε ότι λαμβάνεται υπόψη η άποψή σας στη λήψη αποφάσεων σχετικά με τη θεραπεία σας; 1 (καθόλου) (απόλυτα) Δεν μπορώ να απαντήσω 18. Σε ποιο βαθμό πιστεύετε ότι μπορείτε να κατευθύνετε τους επαγγελματίες υγείας που σας παρακολουθούν στα ζητήματα που θεωρείτε υψηλής προτεραιότητας; 1 (καθόλου) (απόλυτα) Δεν μπορώ να απαντήσω 19. Κατά πόσο το πρόγραμμα θεραπείας σας αντικατοπτρίζει τις προτιμήσεις και τις επιλογές σας; 1 (καθόλου) (απόλυτα) Δεν μπορώ να απαντήσω 20. Πόσο ικανοποιημένοι είστε από τη σχέση σας με τους επαγγελματίες υγείας με τους οποίους έρχεστε σε επαφή τακτικά; 1 (καθόλου) (απόλυτα) Δεν μπορώ να απαντήσω 21. Ποιο είναι το φύλο σας; Άνδρας Γυναίκα 22. Ποια χρονιά γεννηθήκατε; (Dropdown list) Public Page 44 of 74 v1.0 / 25th January 2013

45 23. Ποιο είναι το ανώτερο επίπεδο εκπαίδευσης που έχετε ολοκληρώσει; Πρωτοβάθμια εκπαίδευση Κατώτερη δευτεροβάθμια εκπαίδευση Ανώτερη δευτεροβάθμια εκπαίδευση ή μεταδευτεροβάθμια μη τριτοβάθμια εκπαίδευση (επαγγελματική κατάρτιση για συγκεκριμένους τομείς της αγοράς) Τριτοβάθμια εκπαίδευση πρώτου σταδίου πανεπιστημιακό επίπεδο, ακαδημαϊκή και επαγγελματική εκπαίδευση Τριτοβάθμια εκπαίδευση δεύτερου σταδίου περαιτέρω σπουδές πανεπιστημιακού επιπέδου (μεταπτυχιακό και διδακτορικό) 24. Γενικά, πόσο συχνά επισκέπτεστε ιατρό (γενικό ή ειδικό) για οποιονδήποτε τύπο συμβουλής; Μία φορά την εβδομάδα ή περισσότερο Μία φορά κάθε δύο εβδομάδες Μία φορά κάθε τρεις εβδομάδες Μία φορά κάθε μήνα Τρεις ή τέσσερις φορές το χρόνο Μία ή δύο φορές το χρόνο Λιγότερο από μία φορά το χρόνο Ποτέ 25. Πόσο χρόνο χρειάζεστε για να μεταβείτε στο πλησιέστερο κέντρο πρώτων βοηθειών; 15 λεπτά ή λιγότερο Από 15 έως 30 λεπτά Από 30 λεπτά έως μία ώρα Από μία έως δύο ώρες Όχι περισσότερο από δύο ώρες Δεν γνωρίζω 26. Πόσο χρόνο χρειάζεστε για να μεταβείτε στο ιατρείο του γενικού ιατρού σας; 15 λεπτά ή λιγότερο Από 15 έως 30 λεπτά Από 30 λεπτά έως μία ώρα Από μία έως δύο ώρες Όχι περισσότερο από δύο ώρες Δεν γνωρίζω 27. Πόσο χρόνο χρειάζεστε για να μεταβείτε στο πλησιέστερο νοσοκομείο; 15 λεπτά ή λιγότερο Από 15 έως 30 λεπτά Από 30 λεπτά έως μία ώρα Από μία έως δύο ώρες Όχι περισσότερο από δύο ώρες Δεν γνωρίζω Public Page 45 of 74 v1.0 / 25th January 2013

46 DONE or SUBMIT button here Σας ευχαριστούμε για το χρόνο που αφιερώσατε για τη συμπλήρωση αυτού του ερωτηματολογίου! Public Page 46 of 74 v1.0 / 25th January 2013

47 B.4 Questionnaire in Italian Invitation text in the pop-up window: La preghiamo di compilare il presente questionario per contribuire a rendere i servizi legati al Fascicolo sanitario elettronico maggiormente rispondenti alle sue esigenze: LINK Preamble: Lo scopo di questa indagine è valutare, in 11 regioni europee, come la consultazione da parte del paziente del proprio Dossier Sanitario Elettronico (PIC) e l utilizzo dei relativi servizi influisce nel tempo sull empowerment del paziente stesso. Con il termine empowerment del paziente si intende la capacità del paziente di comprendere le informazioni sulla propria salute facendone un uso efficace, avere maggiore controllo e partecipare in maniera significativa alla gestione della malattia a fianco del medico.. L indagine si svolgerà in due fasi. La prima, con inizio previsto a fine 2012, servirà a rilevare il livello di empowerment dei pazienti prima del loro accesso ai servizi del Dossier Sanitario Elettronico (PIC). La seconda, prevista per i primi mesi del 2014, ha l obiettivo di valutare se, conseguentemente all uso dei servizi legati al Dossier Sanitario Elettronico (PIC), i pazienti abbiano effettivamente aumentato il loro empowerment.. Maggiori informazioni sono disponibili alla pagina web Le saremmo grati se potesse compilare questo questionario in base alla sua esperienza con il sistema sanitario e i servizi sanitari di cui si avvale. La compilazione non richiede più di 15 minuti. Possono rispondere al questionario sia le persone affette da malattie croniche sia quelle che non ne sono affette, al fine di dare un contributo per rendere tali servizi più vicini alle reali esigenze dei pazienti. Nella seconda fase, saranno chiamate a rispondere le stesse persone che hanno partecipato alla prima fase dell indagine. Se compila questo questionario, le verrà assegnato un codice identificativo elettronico (ID), e fra un anno sarà invitato/a a compilare il secondo questionario. Tutte le informazioni saranno raccolte anonimamente e saranno trattate in modo strettamente confidenziale. I dati presenti all interno al suo Dossier Sanitario Elettronico (PIC) non saranno conservate e l ID generato avrà il solo scopo di poterla ricontattare per la seconda fase. Se acconsente a prendere parte a questo studio, contrassegni la casella Acconsento qui sotto per passare alla compilazione del questionario. Al termine della compilazione, non dimentichi di cliccare su Invia. Se avesse domande sul progetto o sull indagine, non esiti a contattarci: Name / phone nr Acconsento Public Page 47 of 74 v1.0 / 25th January 2013

48 1. È affetto/a da malattie croniche o da disturbi di salute che richiedono trattamenti a lungo termine? o o Sì No (Se la risposta è Sì ) 1.1. Specifichi Malattie trasmissibili (epatite, tubercolosi, HIV/AIDS, ecc.) Cancro Malattie ematiche e dei tessuti ematopoietici Malattie endocrine e metaboliche (tiroide, diabete, ecc.) Disturbi mentali e comportamentali Malattie del sistema nervoso Malattie dell occhio Malattie dell orecchio Malattie dell apparato circolatorio Malattie dell apparato respiratorio Malattie dell apparato digerente Malattie della cute e del tessuto sottocutaneo Malattie del sistema muscolo-scheletrico e del tessuto connettivo Malattie dell apparato urogenitale Disturbi in gravidanza e parto Malformazioni congenite e anomalie cromosomiche Altro:. 2. Quanto comprende delle informazioni sanitarie che riceve nel corso delle visite mediche? 1 (niente) (tutto) Non sono in grado di rispondere 3. Quanto comprende delle informazioni sanitarie riportate nei risultati di esami e nei referti medici che riceve elettronicamente o in formato cartaceo? 1 (niente) (tutto) Non sono in grado di rispondere 4. Quanto comprende delle informazioni sanitarie provenienti da altre fonti che trattano di salute, come siti web, libri, ecc.? 1 (niente) (tutto) Non sono in grado di rispondere Public Page 48 of 74 v1.0 / 25th January 2013

49 5. Quanto è in grado di riconoscere i segnali d allarme/sintomi relativi al suo stato di salute? 1 (niente) (tutto) Non sono in grado di rispondere Question logic here: If the respondent answers NO to the 1 st question, don t show them questions 6, 7, and 8! 6. In che misura comprende l impatto che la sua malattia ha sul suo stile di vita? 1 (per niente) (del tutto) Non sono in grado di rispondere 7. Quanto è consapevole riguardo le possibili evoluzioni della sua malattia? 1 (per niente) (del tutto) Non sono in grado di rispondere 8. Quanto ben informato/a ritiene di essere relativamente alle diverse possibilità di cura per la sua malattia? 1 (per niente) (del tutto) Non sono in grado di rispondere 9. Quanto spesso controlla il suo stato di salute generale quando si sente bene? 1 (mai) (sempre) Non sono in grado di rispondere 10. Con quanta prontezza reagisce a segnali d allarme sulla sua salute? 1 (nessuna) (totale) Non sono in grado di rispondere 11. In che misura segue i suggerimenti che i medici le danno sul suo stile di vita? 1 (per niente) (del tutto) Non sono in grado di rispondere 12. Assume i medicinali che le sono stati prescritti esattamente come glieli hanno prescritti? 1 (per niente) (completamente) Non sono in grado di rispondere Public Page 49 of 74 v1.0 / 25th January 2013

50 13. Quanto spesso annota e tiene traccia dei dati che i medici le suggeriscono di monitorare per tenere sotto controllo il suo stato di salute? 1 (mai) (sempre) Non sono in grado di rispondere 14. Quanto spesso legge i risultati degli esami o i referti medici disponibili prima di recarsi ad una visita dal suo medico? 1 (mai) (sempre) Non sono in grado di rispondere 15. Prima di recarsi ad una visita medica, pensa già alle domande che vorrà porre al suo dottore? 1 (mai) (sempre) Non sono in grado di rispondere 16. Cerca ulteriori informazioni sulla sua salute rispetto a quelle che solitamente le fornisce la sua Azienda ULSS di afferenza? 1 (mai) (sempre) Non sono in grado di rispondere 17. Quanta voce in capitolo pensa di avere sulle decisioni riguardanti le cure a cui viene sottoposto/a? 1 (nessuna) (totale) Non sono in grado di rispondere 18. In quale misura si sente in grado di attirare l attenzione dei suoi medici sui problemi che per lei hanno la priorità? 1 (per niente) (completamente) Non sono in grado di rispondere 19. In che misura il suo programma di cura riflette le sue preferenze e le sue scelte? 1 (per niente) (completamente) Non sono in grado di rispondere Public Page 50 of 74 v1.0 / 25th January 2013

51 20. Quanto è soddisfatto/a della relazione che ha con i medici con cui viene a contatto regolarmente? 1 (per niente) (completamente ) Non sono in grado di rispondere 21. Qual è il suo sesso? Maschio Femmina 22. In che anno è nato/a? (Dropdown list) 23. Qual è il suo livello d istruzione? Licenza elementare Licenza media inferiore Licenza media superiore o istruzione post-secondaria non universitaria (formazione professionale specializzata) Università Istruzione post-laurea (master o dottorato di ricerca) 24. In generale, quanto spesso va dal dottore (medico di famiglia o specialista) per consulti di qualsiasi tipo? Una volta a settimana o più Una volta ogni due settimane Una volta ogni tre settimane Una volta al mese Tre o quattro volte all anno Una o due volte all anno Meno di una volta all anno Mai 25. Quanto tempo impiega per raggiungere il Distretto Socio-Sanitario più vicino? 15 minuti o meno Fra i 15 e i 30 minuti Fra 30 minuti e 1 ora Fra 1 e 2 ore Più di 2 ore Non lo so 26. Quanto tempo impiega per raggiungere il suo medico di famiglia? 15 minuti o meno Fra i 15 e i 30 minuti Fra 30 minuti e 1 ora Fra 1 e 2 ore Più di 2 ore Non lo so Public Page 51 of 74 v1.0 / 25th January 2013

52 27. Quanto tempo impiega per raggiungere l ospedale più vicino? 15 minuti o meno Fra i 15 e i 30 minuti Fra 30 minuti e 1 ora Fra 1 e 2 ore Più di 2 ore Non lo so DONE or SUBMIT button here Grazie per la sua disponibilità! Public Page 52 of 74 v1.0 / 25th January 2013

53 B.5 Questionnaire in Spanish Texto de invitación en una ventana emergente: Por favor, complete nuestro cuestionario para contribuir a que los servicios de Historia Clínica Electrónica respondan mejor a sus necesidades: ENLACE Introducción: El propósito de esta encuesta es evaluar en once regiones europeas el impacto del acceso continuado de los pacientes a su Historia Clínica Electrónica (HCE) y a algunos servicios relacionados en la potenciación del papel activo del paciente (capacitación) en cuanto a la gestión de su salud. La encuesta tendrá dos fases. La primera, que ha comenzado a finales del 2012, supone la evaluación del punto de partida previo al acceso de los pacientes a los servicios de su HCE. La segunda fase, que comenzará a principios de 2014, tiene como propósito evaluar si los pacientes han potenciado su papel activo en la gestión de su salud como resultado de la utilización de los servicios de su HCE. Se puede consultar más información en Le agradeceríamos que rellene este cuestionario basándose en su propia experiencia en el Servicio Aragonés de salud y los servicios sanitarios que usted utiliza. No debería ocuparle más de 15 minutos. Tanto si es usted una persona con una enfermedad crónica como si no lo es, puede responder a este cuestionario y contribuir a que los servicios de la HCE respondan mejor a las necesidades de los pacientes. En la segunda fase necesitaremos que respondan las mismas personas que respondieron en esta primera fase. Si usted responde a este cuestionario, se generará un número identificativo electrónico (ID) y se le solicitará que responda a otro cuestionario similar dentro de un año. Toda la información se recopilará de forma anónima y se tratará de forma estrictamente confidencial. No vamos a almacenar ningún dato de su HCE y utilizaremos el ID sólo para contactar con usted cuando se inicie la segunda fase. Si está de acuerdo en participar en este estudio, por favor marque la casilla Estoy de acuerdo que aparece más abajo y haga click en Siguiente para acceder al cuestionario. Por favor no olvide hacer click en Finalizado una vez haya terminado de responder a todas las preguntas. Si usted tuviese cualquier pregunta sobre el proyecto o la encuesta póngase en contacto con nosotros: Área de Innovación (Rosana Anglés) innovation.hbrb@salud.aragon.es Estoy de acuerdo Public Page 53 of 74 v1.0 / 25th January 2013

54 Información demográfica y general 1. Tiene usted alguna enfermedad crónica o condición de salud que requiera tratamiento continuo? Sí No Si la respuesta anterior ha sido Sí : 1.1. Por favor, seleccione una de las siguientes opciones: Enfermedades Contagiosas (hepatitis, tuberculosis, VIH/SIDA, etc.) Cáncer Enfermedades de la sangre o de órganos relacionados Enfermedades endocrinas o metabólicas (del tiroides, diabetes, etc.) Trastornos mentales y del comportamiento Enfermedades del sistema nervioso Enfermedades oculares Enfermedades del oido Enfermedades del sistema circulatorio Enfermedades del sistema respiratorio Enfermedades del sistema digestivo Enfermedades de la piel y del tejido subcutáneo Enfermedades del systema musculo-esquelético y del tejido conectivo Enfermedades del sistema genitourinario Problemas relacionados con el embarazo y el parto Malformaciones congénitas y anormalidades cromosómicas Otras:. 2. Cuando tiene usted una consulta presencial con profesionales sanitarios, en qué medida comprende la información que recibe? 1 (nada) (toda) Incapaz de responder 3. En qué medida comprende los resultados de las pruebas e informes médicos que recibe en formato electrónico o en papel? 1 (nada) (toda) Incapaz de responder 4. En qué medida comprende usted la información sobre temas de salud de otras fuentes como páginas web, libros, etc,? 1 (nada) (toda) Incapaz de responder 5. En qué medida comprende usted las señales de aviso o los síntomas relacionados con su salud? 1 (nada en absoluto) (completamente) Incapaz de responder Public Page 54 of 74 v1.0 / 25th January 2013

55 - Por favor, salte a la pregunta 9 si usted no tiene enfermedades crónicas. 6. En qué medida conoce usted cómo influye su enfermedad en cuanto a cómo debe adaptar su estilo de vida? 1 (nada en absoluto) (completamente) Incapaz de responder 7. En qué medida cree usted que es consciente de la evolución de su enfermedad? 1 (nada en absoluto) (completamente) Incapaz de responder 8. Cómo de informado cree usted que está acerca de las diferentes alternativas de tratamiento de su enfermedad? 1 (nada en absoluto) (completamente) Incapaz de responder 9. Con qué frecuencia revisa su salud cuando se encuentra bien? 1 (nunca) (siempre) Incapaz de responder 10. Responde usted con rapidez si aparece alguna señal de aviso sobre su salud? 1 (nunca) (inmediatamente) Incapaz de responder 11. Sigue usted las recomendaciones sobre vida saludable que le dan los profesionales sanitarios? 1 (ninguna) (todas) Incapaz de responder 12. Toma usted la medicación exactamente como se lo indican? 1 (nunca) (siempre) Incapaz de responder 13. Con qué frecuencia apunta usted datos sobre su salud en actividades de control que le indican sus profesionales sanitarios? 1 (nunca) (siempre) Incapaz de responder 14. Con qué frecuencia lee usted los resultados de las pruebas o informes médicos antes de acudir a la consulta con su médico? 1 (nunca) (siempre) Incapaz de responder Public Page 55 of 74 v1.0 / 25th January 2013

56 15. Piensa usted con antelación preguntas que quiere realizar a su doctor durante las consultas presenciales? 1 (nunca) (cada vez) Incapaz de responder 16. Busca usted información adicional relacionada con su salud? 1 (nunca) (siempre) Incapaz de responder 17. En qué medida piensa que tiene usted algo que decir en las decisiones relacionadas con su tratamiento? 1 (nada) (todo) Incapaz de responder 18. Hasta qué punto usted se siente capaz de hacer entender al personal sanitario los asuntos que son importantes para usted? 1 (nada en absoluto) (completamente) Incapaz de responder 19. En qué medida se adapta su tratamiento a sus deseos y decisiones? 1 (nada en absoluto) (completamente) Incapaz de responder 20. Cómo de satisfecho está usted en su relación con los profesionales sanitarios que le atienden normalmente? 1 (nada en absoluto) (completamente) Incapaz de responder 21. Cual es su sexo? Varón Mujer 22. En qué año nació? (Lista desplegable) 23. Cual es el nivel de estudios más alto al que ha llegado? Educación Primaria Educación Secundaria Obligatoria (B.U.P, E.S.O. o Formación Profesional Básica) Educación Secundaria Postobligatoria (Bachillerato, C.O.U., Acceso a la Universidad o Formación Profesional de Grado Medio) Formación Superior (Estudios Universitarios o Formación Profesional de Grado Superior) Estudios de Tercer Ciclo: Estudios de Doctorado o Master Public Page 56 of 74 v1.0 / 25th January 2013

57 24. Normalmente, con qué frecuencia visita usted al médico (de atención primaria / de familia o al especialista) para cualquier tipo de consulta? Una vez a la semana o más Una vez cada dos semanas Una vez cada tres semanas Una vez al mes Tres o cuatro veces al año Una o dos veces al año Menos de una vez al año Nunca 25. Cuanto tiempo tarda en llegar a su centro de salud más cercano? 15 minutos o menos Entre 15 y 30 minutos Entre 30 minutos y una hora Entre una y dos horas Más de dos horas No lo sé 26. Cuanto tiempo tarda en llegar a la consulta de su médico de familia / de cabecera? 15 minutos o menos Entre 15 y 30 minutos Entre 30 minutos y una hora Entre una y dos horas Más de dos horas No lo sé 27. Cuanto tiempo tarda en llegar al hospital más cercano? 15 minutos o menos Entre 15 y 30 minutos Entre 30 minutos y una hora Entre una y dos horas Más de dos horas No lo sé DONE or SUBMIT button here Muchas gracias por el tiempo dedicado a completar esta encuesta! Public Page 57 of 74 v1.0 / 25th January 2013

58 B.6 Questionnaire in Swedish Invitation text in the pop-up window: Var god fyll i frågeformuläret för att bidra till att förbättra tjänsten Min journal på nätet patientjournalen så att den blir mer anpassad till dina behov: LINK Preamble: Syftet med denna undersökning är att utvärdera inverkan av patienternas tillgång till Min journal på nätet och relaterade tjänster för patienters egenmakt över tiden i elva regioner i Europa. Undersökningen kommer att ha två faser. Den första fasen som startar mot slutet av 2012 är grundbedömningen för patienters tillgång till Min journal på nätet och den andra fasen som startar i början av 2014 syftar till att utvärdera om patienter fick mer egenmakt som ett resultat av att använda Min journal på nätet. Mer information finns på Vi skulle uppskatta om du fyllde i det här frågeformuläret baserat på din erfarenhet av hälsooch sjukvården som du använt. Det borde inte ta mer än 15 minuter. Alla utan en kronisk sjukdom kan svara på frågeformuläret och bidra till att Min journal på nätet blir mer lyhörd för patienternas behov. Under den andra fasen kommer vi att behöva svar från samma människor som svarade i den första fasen av undersökningen. Om du svarade på det här frågeformuläret kommer ett elektroniskt ID att genereras åt dig och du kommer att bli inbjuden att fylla i ett till frågeformulär inom ett år. All information samlas in anonymt och kommer att behandlas som strikt konfidentiell. Vi kommer inte att lagra någon information från din Min journal på nätet och använder det genererade ID.t enbart för att kontakta dig inför fas två. Om du går med på att delta i den här studien, klicka i "Jag accepterar"-rutan nedan och klicka på "Nästa" för att gå vidare till frågeformuläret. Glöm inte att klicka på "Klar" efter att du svarat på alla frågorna. Om du har några frågor om projektet eller undersökningen, kontakta oss: Name / phone nr I agree 1. Hur mycket av hälsoinformationen som du får av hälso- och sjukvårdspersonal vid personligt besök förstår du? 1 (ingen) (all) Kan inte svara Public Page 58 of 74 v1.0 / 25th January 2013

59 2. Hur mycket av hälsoinformationen från testresultat och medicinska rapporter som du får elektroniskt eller på papper förstår du? 1 (ingen) (all) Kan inte svara 3. Hur mycket av hälsoinformationen från andra hälso- och sjukvårdsrelaterade källor så som hemsidor, böcker, etc, förstår du? 1 (ingen) (all) Kan inte svara 4. Hur mycket är du medveten om varningstecknen/symptomen relaterade till din hälsa? 1 (inte alls) (helt) Kan inte svara - Please skip questions 13, 14 and 15 if you don t have any chronic diseases! 5. Hur mycket förstår du av hur livsstilsförändringar påverkar din sjukdom? 1 (inte alls) (helt) Kan inte svara 6. Hur mycket är du medveten om den möjliga utvecklingen av din sjukdom? 1 (inte alls) (helt) Kan inte svara 7. Hur välinformerad tycker du att du är om de olika behandlingsalternativen för din sjukdom? 1 (inte alls) (helt) Kan inte svara 8. Hur ofta kontrollerar du din allmänna hälsa när du mår bra? 1 (aldrig) (alltid) Kan inte svara 9. Hur snabbt följer du upp eventuella varningstecken för din hälsa? 1 (aldrig) (omedelbart) Kan inte svara 10. Hur mycket av de livsstilsrelaterade råden du får från hälso- och sjukvårdspersonal följer du? 1 (ingen) (all) Kan inte svara Public Page 59 of 74 v1.0 / 25th January 2013

60 11. Tar du din medicin exakt som du föreskrivs? 1 (inte alls) (helt) Kan inte svara 12. Skriver du upp information från hälsoövervakning (vikt, smärta, sömn eller liknande) som föreslagits dig av hälso- och sjukvårdspersonal? 1 (aldrig) (alltid) Kan inte svara 13. Hur ofta läser du dina tillgängliga testresultat eller medicinska rapporter innan du går på ett besök till din läkare? 1 (aldrig) (alltid) Kan inte svara 14. Kommer du på frågor i förväg som du vill fråga din läkare vid besöket? 1 (aldrig) (varje gång) Kan inte svara 15. Söker du efter ytterligare information gällande din hälsa? 1 (aldrig) (alltid) Kan inte svara 16. Hur mycket anser du att du har att säga till om gällande beslut kring din behandling? 1 (ingen) (stor) Kan inte svara 17. I vilken utsträckning känner du att du kan få din hälso- och sjukvårdpersonal uppmärksamhet gällande frågor som är en angelägna för dig? 1 (inte alls) (mycket) Kan inte svara 18. Hur mycket speglar din behandlingsplan dina önskemål och val? 1 (inte alls) (mycket) Kan inte svara 19. Hur nöjd är du med din relation till den hälso- och sjukvårdspersonal som du regelbundet träffar? 1 (inte alls) (helt) Kan inte svara Public Page 60 of 74 v1.0 / 25th January 2013

61 20. Vilket kön är du? Man Kvinna 21. Födelseår? (Dropdown list) 22. Vilken är den högsta utbildning du gått? Grundskola 2-årigt gymnasium 3- eller 4-årigt gymnasium Grundläggande universitetsexamen (kandidat) - eller högskoleexamen Högre universitetsexamen (magister, doktor) 23. Har du en kronisk sjukdom som kräver långsiktig behandling? (Om "ja") Ja Nej Dropdown list: Var vänlig välj dropdown list Smittsamma sjukdomar (hepatit, tuberkulos, HIV/AIDS, etc.) Cancer Blodsjukdomar och sjukdomar i blodbildande organ Endokrina och metaboliska sjukdomar (sköldkörtelsjukdomar, diabetes, etc.) Psykiska störningar och beteendestörningar Sjukdomar i nervsystemet Ögonsjukdomar Öronsjukdomar Sjukdomar i cirkulationssystemet Sjukdomar i andningssystemet Sjukdomar i matsmältningssystemet Hudsjukdomar och sjukdomar i subkutan vävnad Sjukdomar i muskuloskelatala systemet och bindväven Sjukdomar i urogenitalsystemet Sjukdomar relaterade till graviditet och barnafödande Medfödda missbildningar och kromosomavvikelser Annat: Second dropdown list Third dropdown list Public Page 61 of 74 v1.0 / 25th January 2013

62 24. I allmänhet, hur ofta besöker du en läkare (husläkare eller specialist) för någon sorts rådfrågning? En gång i veckan eller mer Varannan vecka Var tredje vecka En gång i månaden Tre eller fyra gånger per år En eller två gånger per år Mer sällan än en gång per år Aldrig 25. Hur lång tid tar det dig att nå din närmaste vårdcentral? 15 minuter eller mindre Mellan 15 och 30 minuter Mellan 30 minuter och en timme Mellan en och två timmar Mer än två timmar Vet ej 26. Hur lång tid tar det dig att nå din husläkare? 15 minuter eller mindre Mellan 15 och 30 minuter Mellan 30 minuter och en timme Mellan en och två timmar Mer än två timmar Vet ej 27. Hur lång tid tar det dig att komma till närmaste sjukhus? 15 minuter eller mindre Mellan 15 och 30 minuter Mellan 30 minuter och en timme Mellan en och två timmar Mer än två timmar Vet ej Tack för att du tog tdig tid att fylla i denna undersökning! Public Page 62 of 74 v1.0 / 25th January 2013

63 B.7 Questionnaire in Estonian Invitation text in the pop-up window: Palume vastata järgnevale küsimustikule. Sellega aitate kaasa, et EHL-teenused vastaksid paremini teie vajadustele: LINK Preamble: Uuringu eesmärk on hinnata, millist mõju avaldavad patsiendile juurdepääs oma elektroonilisele haigusloole (EHL) ja tervishoiuteenused seoses aja jooksul tema vastutuse suurendamisega üheteistkümnes Euroopa piirkonnas. Uuring on kahes etapis aasta lõpus algav esimene etapp kujutab endast alushinnangut, enne kui patsiendid saavad juurdepääsu EHL-teenustele ning aasta alguses algava teise etapi eesmärgiks on hinnata, kas EHL-teenuste kasutamisega on patsiendile antud suurem vastutus. Lisainfo aadressilt Oleme tänulikud, kui te vastate sellele küsimustikule lähtuvalt oma kogemustest tervishoiusüsteemist ja kasutatavatest -teenustest. Küsimustiku täitmiseks ei kulu üle 15 minuti. Küsimustikule võib vastata ja anda oma panuse EHL-teenuste patsientide vajaduste järgi kohandamisse igaüks, kellel on või ei ole mõni krooniline häire. Teises etapis vajame vastuseid samadelt inimestelt, kes vastasid küsimustele uuringu esimeses etapis. Kui te küsimustikule vastate, luuakse teie jaoks elektrooniline identifitseerimistunnus ning teil palutakse aasta pärast täita veel üks küsimustik. Kogu info kogutakse anonüümselt ning seda käsitletakse rangelt konfidentsiaalsena. Me ei salvesta teie EHL-kontolt mingeid andmeid ning kasutame identifitseerimistunnust üksnes kontakteerumiseks teiega teises etapis. Kui nõustute uuringus osalema, siis märgistage allpool linnukesega Nõustun -kastike ja klõpsake valikul Edasi liikumiseks küsimustiku juurde. Ärge unustage klõpsamast valikul Valmis pärast seda, kui olete lõpetanud küsimustele vastamise. Võtke meiega ühendust, kui teil on küsimusi projekti või uuringu kohta: Name / phone nr I agree 1. Kui suurest osast näost näkku visiidil tervishoiutöötajalt saadud terviseinfost te aru saate? 1 (ei saa üldse aru) (saan kõigest aru) Ei saa vastata Public Page 63 of 74 v1.0 / 25th January 2013

64 2. Kui suurest osast elektrooniliselt või paberil saadud uuringutulemustest ja arsti ettekirjutustest pärit terviseinfost te aru saate? 1 (ei saa üldse aru) (saan kõigest aru) Ei saa vastata 3. Kui suurest osast muudest terviseinfoallikatest, nt veebisaitidelt, raamatutest jne pärit terviseinfost te aru saate? 1 (ei saa üldse aru) (saan kõigest aru) Ei saa vastata 4. Mil määral olete teadlik oma tervisega seotud ohumärkidest/sümptomitest? 1 (ei ole üldse teadlik) (olen täiesti teadlik) Ei saa vastata - Please skip questions 13, 14 and 15 if you don t have any chronic diseases! 5. Mil määral mõistate, et oma haiguse mõjul tuleb teil elustiil kohandada sellele vastavaks? 1 (ei mõista üldse) (mõistan täielikult) Ei saa vastata 6. Mil määral peate end teadlikuks oma haiguse võimalikust edasisest kulust? 1 (ei ole üldse teadlik) (olen täiesti teadlik) Ei saa vastata 7. Kui hästi informeerituks peate end oma haiguse ravivõimalustest? 1 (ei ole üldse informeeritud) (olen täiesti informeeritud) Ei saa vastata 8. Kui tihti kontrollite oma üldist tervislikku seisundit siis, kui tunnete end hästi? 1 (mitte kunagi) (alati) Ei saa vastata 9. Kui kiiresti reageerite terviseseisundis ilmnevatele mis tahes ohumärkidele? 1 (mitte kunagi) (viivitamata) Ei saa vastata 10. Kui suurt osa tervishoiutöötajatelt saadud elustiili-nõuannetest järgite? 1 (ei järgi üldse) (järgin kõiki) Ei saa vastata Public Page 64 of 74 v1.0 / 25th January 2013

65 11. Kas võtate oma ravimit täpselt ettekirjutuse järgi? 1 (üldse mitte) (täielikult) Ei saa vastata 12. Kui tihti märgite üles tervishoiutöötajate soovitatud tervisejälgimise andmeid? 1 (mitte kunagi) (alati) Ei saa vastata 13. Kui tihti loete olemasolevaid uuringutulemusi või arsti ettekirjutusi enne arsti juurde konsultatsioonile minekut? 1 (mitte kunagi) (alati) Ei saa vastata 14. Kas mõtlete eelnevalt läbi küsimused, mida tahate oma arstilt konsultatsiooni käigus küsida? 1 (mitte kunagi) (iga kord) Ei saa vastata 15. Kas otsite lisainfot oma tervise kohta? 1 (mitte kunagi) (alati) Ei saa vastata 16. Kui palju arvate teil endal sõnaõigust olevat ravi puudutavate otsuste tegemisel? 1 (ei ole üldse) (mul on täielik sõnaõigus) Ei saa vastata 17. Mil määral tunnete, et suudate juhtida tervishoiutöötajate tähelepanu teie jaoks esmatähtsatele küsimustele? 1 (ei suuda üldse) (suudan täielikult) Ei saa vastata 18. Kui palju peegeldab raviplaan teie enda eelistusi ja valikuid? 1 (ei peegelda üldse) (peegeldab täielikult) Ei saa vastata 19. Kas olete rahul tervishoiutöötajatega, kellega suhtlete korrapäraselt? 1 (ei ole üldse rahul) (olen täiesti rahul) Ei saa vastata Public Page 65 of 74 v1.0 / 25th January 2013

66 28. Mis soost te olete? Mees Naine 29. Mis aastal te olete sündinud? (Dropdown list) 30. Milline on kõrgeim haridustase, kuhu olete jõudnud? Esimese taseme haridus (algharidus) Teise taseme alumise astme haridus Teise taseme ülemise astme haridus või teise taseme järgne, kolmanda taseme eelne haridus (kutsealane ettevalmistus spetsiifilistele tööturgudele) Kolmanda taseme hariduse alumine aste ülikoolitase, akadeemiline ja kutsealane haridus Kolmanda taseme hariduse ülemine aste edasised ülikoolitasemel õpingud (magistri- ja doktorikraad) 31. Kas teil on mõni pikaajalist ravi vajav krooniline haigus või tervisehäire? Jah Ei (Kui vastuseks on jah ) Palun valige dropdown list Nakkushaigus (hepatiit, tuberkuloos, HIV/aids jne) Vähktõbi Vere- ja vereloomeorganite haigused Endokriinsed ja ainevahetushaigused (kilpnäärmehaigus, diabeet jne) Psüühika- ja käitumishäired Närvisüsteemi haigused Silmahaigused Kõrvahaigused Vereringesüsteemi haigused Hingamiselundite haigused Seedeelundite haigused Naha- ja nahaaluste kudede haigused Skeleti-lihassüsteemi ja sidekoehaigused Kuse-suguelundite haigused Raseduse ja sünnitamisega seotud seisundid Kaasasündinud väärarendid ja kromosoomihälbed Muu: Second dropdown list Third dropdown list Public Page 66 of 74 v1.0 / 25th January 2013

67 32. Kui tihti te tavaliselt käite arsti (üldarsti või eriarsti) juures mis tahes tüüpi konsultatsioonil? Kord nädalas või sagedamini Kord kahe nädala jooksul Kord kolme nädala jooksul Kord kuus Kolm või neli korda aastas Kord või kaks aastas Vähem kui kord aastas Mitte kunagi 33. Kui palju aega kulub teil lähimasse esmatasandi tervishoiuasutusse jõudmiseks? 15 minutit või vähem minutit 30 minutit kuni tund Tund kuni kaks Üle kahe tunni Ei tea 34. Kui palju aega kulub teil oma üldarsti juurde jõudmiseks? 15 minutit või vähem minutit 30 minutit kuni tund Tund kuni kaks Üle kahe tunni Ei tea 35. Kui palju aega kulub teil lähimasse haiglasse jõudmiseks? 15 minutit või vähem minutit 30 minutit kuni tund Tund kuni kaks Üle kahe tunni Ei tea Täname, et leidsite aega selle küsimustiku täitmiseks! Public Page 67 of 74 v1.0 / 25th January 2013

68 B.8 Questionnaire in Slovenian Invitation text in the pop-up window: Če želite prispevati k temu, da bi bile storitve elektronskih zdravstvenih zapisov bolj prilagojene vašim potrebam, vas prosimo, da izpolnite vprašalnik: LINK Preamble: Namen te ankete je oceniti, kako na paciente vpliva dostop, ki ga imajo do svojih elektronskih zdravstvenih zapisov in sorodnih storitev, namenjenih postopni krepitvi moči pacientov, v enajstih evropskih regijah. Anketa bo dvofazna. Prva faza se bo začela konec leta 2012 in bo služila kot izhodiščna ocena stanja pred dostopom pacientov do storitev elektronskih zdravstvenih zapisov, druga faza pa se bo začela v začetku leta 2014 in bo skušala oceniti, ali se moč pacientov krepi, če uporabljajo storitve elektronskih zdravstvenih zapisov. Več informacij lahko najdete na spletni strani Prosimo vas, da izpolnite ta vprašalnik glede na lastne izkušnje z zdravstvenim sistemom in zdravstvenimi storitvami, ki jih uporabljate. Ne bi vam smelo vzeti več kot 15 minut. Vsak, ne glede na to, ali je kronično bolan ali ne, lahko odgovori na vprašalnik in tako prispeva k temu, da bodo storitve elektronskih zdravstvenih zapisov še bolj prilagojene potrebam pacientov. V drugi fazi bomo potrebovali odgovore istih oseb, ki so odgovarjale v prvi fazi ankete. Če boste odgovarjali na ta vprašalnik, bo za vas ustvarjena elektronska številka ID in v roku enega leta boste prejeli povabilo za izpolnjevanje drugega vprašalnika. Vse informacije bodo zbrane anonimno in obravnavane strogo zaupno. Ne bomo hranili nobenih podatkov iz vašega računa elektronskega zdravstvenega zapisa, ustvarjeno številko ID pa bomo uporabili le za stik z vami za drugo fazo. Če se s sodelovanjem v tej raziskavi strinjate, označite spodnje polje»strinjam se«(»i agree«) in za prehod na vprašalnik kliknite»naprej«(»next«). Ko boste odgovorili na vsa vprašanja, ne pozabite klikniti»dokončano«(»done«). Če imate kakršna koli vprašanja o projektu ali anketi, stopite v stik z nami: Name / phone nr I agree 1. Kolikšen del zdravstvenih informacij, ki vam jih posredujejo zdravstveni delavci med obiski v živo, razumete? 1 (ničesar) (vse) Odgovor ni mogoč Public Page 68 of 74 v1.0 / 25th January 2013

69 2. Kolikšen del zdravstvenih informacij na izvidih preiskav in medicinskih poročilih, ki jih prejmete po elektronski poti ali natisnjene na papirju, razumete? 1 (ničesar) (vse) Odgovor ni mogoč 3. Kolikšen del zdravstvenih informacij iz drugih virov, povezanih z zdravjem, na primer spletnih strani, knjig itd., razumete? 1 (ničesar) (vse) Odgovor ni mogoč 4. V kolikšni meri se zavedate opozorilnih znakov/simptomov, povezanih z vašim zdravjem? 1 (se sploh ne) (v celoti) Odgovor ni mogoč - Please skip questions 13, 14 and 15 if you don t have any chronic diseases! 5. Kako dobro razumete vpliv vaše bolezni glede na prilagoditve življenjskega sloga? 1 (sploh ne) (v celoti) Odgovor ni mogoč 6. V kolikšni meri se zavedate možnega poteka vaše bolezni? 1 (se sploh ne) (v celoti) Odgovor ni mogoč 7. Kako dobro ste po vašem mnenju informirani o možnostih zdravljenja v zvezi z vašo boleznijo? 1 (sploh nisem) (dodobra) Odgovor ni mogoč 8. Kako pogosto preverjate svoje splošno zdravstveno stanje, kadar se počutite dobro? 1 (nikoli) (vedno) Odgovor ni mogoč 9. Kako hitro se odzivate na kakršne koli opozorilne znake v zvezi z vašim zdravjem? 1 (nikoli) (takoj) Odgovor ni mogoč Public Page 69 of 74 v1.0 / 25th January 2013

70 10. V kolikšni meri upoštevate nasvete v zvezi z življenjskim slogom, ki vam jih posredujejo zdravstveni strokovnjaki? 1 (ničesar) (vse) Odgovor ni mogoč 11. Ali jemljete zdravila natančno po navodilih? 1 (nikoli) (vedno) Odgovor ni mogoč 12. Kako pogosto beležite podatke iz dejavnosti za nadzor zdravja, ki vam jih priporočijo zdravstveni strokovnjaki? 1 (nikoli) (vedno) Odgovor ni mogoč 13. Kako pogosto preberete svoje izvide preiskav, ki so vam na voljo, ali medicinska poročila, preden odidete na posvet s svojim zdravnikom v živo? 1 (nikoli) (vedno) Odgovor ni mogoč 14. Ali si vprašanja, ki jih želite zastaviti svojemu zdravniku med posvetovanjem v živo, pripravite vnaprej? 1 (nikoli) (vedno) Odgovor ni mogoč 15. Ali iščete dodatne informacije o svojem zdravju? 1 (nikoli) (vedno) Odgovor ni mogoč 16. Kolikšne možnosti izražanja svojega mnenja pri odločitvah v zvezi z vašim zdravljenjem imate po vašem mnenju? 1 (nobenih) (vse) Odgovor ni mogoč 17. V kolikšni meri čutite, da lahko opozorite zdravstvene strokovnjake na težave, ki so za vas prednostne? 1 (sploh ne) (v celoti) Odgovor ni mogoč 18. V kolikšni meri načrt vašega zdravljenja zrcali vaše prioritete in izbire? 1 (sploh ne) (v celoti) Odgovor ni mogoč Public Page 70 of 74 v1.0 / 25th January 2013

71 19. V kolikšni meri ste zadovoljni z odnosom, ki ga imate z zdravstvenimi strokovnjaki, s katerimi ste redno v stiku? 1 (sploh ne) (v celoti) Odgovor ni mogoč 20. Katerega spola ste? Moški Ženska 21. Katerega leta ste bili rojeni? (Dropdown list) 22. Kakšna je najvišja stopnja izobrazbe, ki ste jo dosegli? Osnovna šola Nižja srednja izobrazba Višja sekundarna izobrazba ali postsekundarno neterciarno izobraževanje (poklicno usposabljanje za specifične trge dela) Prvostopenjska terciarna izobrazba univerzitetna, akademska in poklicna izobrazba Drugostopenjska terciarna izobrazba nadaljnji univerzitetni študij (magisterij in doktorat) 23. Ali imate kronično bolezen ali zdravstveno težavo, ki zahteva dolgoročno zdravljenje? Da Ne (Če ste odgovorili z»da«:) Izberite dropdown list Nalezljive bolezni (hepatitis, tuberkuloza, HIV/AIDS itd.) Rak Bolezni krvi in krvotvornih organov Endokrine in presnovne bolezni (obolenje ščitnice, sladkorna bolezen itd.) Duševne in vedenjske motnje Bolezni živčnega sistema Bolezni oči Bolezni ušes Bolezni krvožilnega sistema Bolezni respiratornega sistema Bolezni prebavnega sistema Bolezni kože in podkožja Bolezni gibalnega sistema in vezivnega tkiva Bolezni sečil in spolovil Stanja, povezana z nosečnostjo in porodom Prirojene malformacije in kromosomske nepravilnosti Drugo: Second dropdown list Third dropdown list Public Page 71 of 74 v1.0 / 25th January 2013

72 24. Kako pogosto ponavadi obiskujete zdravnika (splošnega ali specialista), ne glede na vrsto posvetovanja? Enkrat ali večkrat tedensko Enkrat na dva tedna Enkrat na tri tedne Enkrat na mesec Tri ali štirikrat letno Enkrat ali dvakrat letno Manj kot enkrat letno Nikoli 25. Koliko časa potrebujete, da pridete do najbližjega zdravstvenega doma? 15 minut ali manj Od 15 do 30 minut Od 30 minut do ene ure Od ene do dveh ur Več kot dve uri Ne vem 26. Koliko časa potrebujete, da pridete do svojega splošnega zdravnika? 15 minut ali manj Od 15 do 30 minut Od 30 minut do ene ure Od ene do dveh ur Več kot dve uri Ne vem 27. Koliko časa potrebujete, da pridete do najbližje bolnišnice? 15 minut ali manj Od 15 do 30 minut Od 30 minut do ene ure Od ene do dveh ur Več kot dve uri Ne vem Hvala, ker ste si vzeli čas in izpolnili ta vprašalnik. Public Page 72 of 74 v1.0 / 25th January 2013

73 Appendix C References Anderson, Robert M., and Martha M. Funnell 2010 Patient empowerment: Myths and misconceptions. Patient Education and Counseling 79: Aujoulat, Isabelle, Renzo Marcolongo, Leopoldo Bonadiman, and Alain Deccache 2008 Reconsidering patient empowerment in chronic illness: A critique of models of selfefficacy and bodily control. Social Science & Medicine 66: de Sousa, Jaime Correia 2007 How to measure patient empowerment. International Workshop EURACT Learning and Teaching about Patient Empowerment in General / Family Practice. Bled, Slovenia, September Electronic document, accessed January 3, Dh, Lau 2002 Patient empowerment a patient-centred approach to improve care. Hong Kong Medical Journal 8(5): Labonté, Ronald, and Glenn Laverack 2008 Health Promotion in Action: From Local to Global Empowerment. Hampshire: Palgrave Macmillan. Laverack, Glenn 2005 Public Health: Power, Empowerment and Professional Practice. Hampshire: Palgrave Macmillan. Lodewijk, Bos, Andy Marsh, Denis Carroll, Sanjeev Gupta, and Mike Rees 2008 Patient 2.0 Empowerment. Proceedings of the 2008 International Conference on Semantic Web & Web Services SWWS08, Hamid R. Arabnia, Andy Marsh (eds): Peña, José Luis Monteagudo, and Oscar Moreno Gil 2007 e-health for patient empowerment in Europe. Madrid: Ministerio de Sanidad y Consumo. Page, Nanette and Czuba, Cheryl E Empowerment: What is it?. Journal of Extension 37 (5). Ross S & Lin C The Effects of Promoting Patient Access to Medical Records: A Review. JAMIA. Vol. 10, No.2, Ventres, William, Sarah Kooienga, Nancy Vuckovic, Ryan Marlin, Peggy Nygren, and Valerie Stewart Public Page 73 of 74 v1.0 / 25th January 2013

74 2006 Physicians, Patients, and the Electronic Health Record: An Ethnographic Analysis. Annals of Family Medicine, 4(2). Helmer, Axel, Myriam Lipprandt, Thomas Frenken, Marco Eichelberg, and Andreas Hein 2011 Empowering Patients through Personal Health Records: A Survey of Existing Third- Party Web-Based PHR Products. Electronic Journal of Health Informatics, 6(3). Kirshner M The Role of Information Technology and Informatics Research in the Dentist Patient Relationship. Advances in Dental Research. Vol. 17, December,: Winkelman W, Leonard K & Rossos P Patient Perceived Usefulness of Online Electronic Medical Records: Employing Grounded theory in the Development of Information and Communication Technologies for Use bypatients Living with Chronic Illness. JAMIA. Vol. 12,: Salmon, Peter, George M. Hall 2004 Patient Empowerment or the Emperor s New Clothes. Journal of the Royal Society of Medicine, 97: ENOPE 2012 Patient Empowerment Living with Chronic Disease. Electronic document retrieved on 18 May 2012 from 428e-a55f-e2a3ad5bb18b/images/A_series_of_short_discussion_topics_on_different.pdf. Ouschan-Macrae, Robyn, Jillian C.D. Sweeney, and Lester W. Johnson 2003 The Dimensions of Patient Empowerment in the Context of Chronic Illness Consultations World Marketing Congress, Perth, WA: Academy of Marketing Science. Electronic document, retrieved on 28 June 2012 from Public Page 74 of 74 v1.0 / 25th January 2013