A patient perspective on eHealth in primary care : critical reflections on the implementation and use of online care services

Summary

Smart devices, such as mobile phones with Internet are becoming more and more essential in daily life. It is expected that digital solutions can also contribute to health care. This is better known as eHealth. Primary care is facing challenges due to an increasing care demand as a result of the growing number of elderly and people with a chronic condition. In addition, care is shifting from secondary to primary care. Online patient portals, healthcare apps and self-monitoring applications are rapidly being developed, aiming to improve the quality and efficiency of health care. However, as yet, eHealth is not in widespread use in daily care practice. There are still many uncertainties regarding the usefulness and the broad-scale implementation of eHealth. This dissertation aimed to investigate the patient perspective regarding eHealth needs and uses. In addition, the broader context of eHealth implementation in the Netherlands has been studied.

The studies in this dissertation were undertaken in a broader context as part of the eLabEL project. The aim of this project was to establish ‘Living Labs’ in which eHealth applications could be implemented, used and studied in a real-life setting. eLabEL aimed to offer eHealth applications as integrated electronic support. In this project, patients, primary healthcare professionals, eHealth entrepreneurs and researchers collaborated. In the chapters 2, 3, 4 and 5 eHealth is studied from the perspective of the patient. What do patients expect from eHealth, do they use it, are they willing to use it, and which aspects influence their use? In Chapter 5 we found that the use of eHealth by patients is dependent on the care professional. Therefore, we investigated the broader context of the eHealth landscape in Chapter 6: it turned out that in addition to patients and care professionals, also eHealth developers and entrepreneurs, health insurers and policymakers play a determining role in the use of eHealth in primary care. In Chapter 7, the studies of this dissertation are discussed and it is described how every stakeholder involved in eHealth can contribute to implement eHealth on a broad scale, in which every perspective has its own challenges.

Chapter 2 shows the current use of online care services whereby patients can contact their primary care professionals via the Internet. This cross-sectional questionnaire study is conducted in 2013 in a sample of 546 Dutch participants that had contacted their general practitioner at least once in the past year. We found that the actual use of such services by patients was very low. Online video consultation was the least used service (0%), requesting prescription refill by Internet was the most used service (10%). Nevertheless, a substantial number of non-users had a positive intention to use such services in the future. This varied from 15% (online video consultation) to approximately 50% (online access to personal medical data). In addition, it is investigated which factors have an influence on the positive intention to use online care services. This was proved to be influenced by effort expectancy, performance  expectancy, trust, attitude, facilitating conditions and social influence. Moreover, patients with a lower age, higher level of education, as well as patients who experienced the use of Internet as easy, had more often a positive intention to use online care services. Remarkably, many patients did not know whether an online care service was available in their primary care practice. Furthermore, many participants answered that they did not know how to evaluate the use and functioning of the online care service. This seemed to indicate that the Dutch population has no strong view regarding the use and possibilities of Internet services for communicating with the general practice.

Chapter 3 presents the results of a focus group study that aimed to investigate expectations and needs of 30 people with diabetes, chronic obstructive pulmonary disease (COPD) or a cardiovascular condition, regarding self-management and eHealth for self-management purposes, their willingness to use eHealth, and possible differences between these patient groups regarding these topics. We found that every patient group had similar general requirements for eHealth in terms of usability, reliability and privacy. In addition, it was reported that the patient, not the care professional, should choose whether or not to use eHealth. Moreover, participants reported that eHealth should support care and not replace personal care. Besides similarities, we also found differences between patient groups. In general, people with diabetes reported the most needs and benefits regarding self-management aspects and were most willing to use eHealth. Participants with diabetes mentioned that their own behaviour regarding, for example, nutrition and medication, directly influenced their health, and that eHealth could support them to influence their behaviour. In contrast, people with a cardiovascular condition mentioned having fewer needs for self-management support because their chronic condition had little impact on their daily life. Patients with COPD had mixed opinions regarding self-management support. This patient group more often mentioned, in contrast to patients with diabetes and a cardiovascular condition, that their health status had declined during the past years, and were wondering how their disease would further develop in the upcoming years. This might indicated that patients with COPD perceived to have less control over their disease. We concluded that patients’ expected benefits of eHealth  and their perceived controllability over their disease seem to be important in patients’ willingness to use eHealth for selfmanagement purposes. This indicates that there are differences between patient groups in the extent to which eHealth for self-management purposes can be of interest for them.

The relationship between disease controllability and patients’ willingness to use eHealth is further investigated in a cross-sectional study which is presented in Chapter 4. The focus of this study was on the willingness to self-monitor health data by patients with a chronic condition, which is an important aspect of many eHealth applications. The controllability that patients have over their disease is partly determined by the disease; therefore we defined this as disease-specific. Besides disease-specific aspects there are also aspects that can differ between patients. Patient-specific aspects that we included were perceived self-efficacy, perceived health problems and patient characteristics. In this study we used data of 627 Dutch participants with seventeen chronic somatic disease types of a national panel. An expert panel of medical doctors and physiotherapists were asked to assess for seventeen chronic disease types the extent to which patients, in general, can independently keep their disease in control. In this study we found that patients’ willingness to self-monitor differs greatly among disease types. Patients with diabetes (71.0%), asthma (59.6%) and hypertension (59.1%) were most willing to self-monitor. In contrast, patients with rheumatism (40.0%), migraine (41.2%) and other neurological disorders (42.9%) were less willing to self-monitor. In addition, we found indications that there is a relationship between disease controllability scores and patients’ willingness to self-monitor. Against our expectations no evidence is found of a relationship between general self-efficacy and patients’ willingness to self-monitor. In addition, no relationship is found between the severity of problems that patients experience with daily functioning and patients’ willingness to self-monitor. Further research should investigate how disease controllability influences willingness to selfmonitor, and what other disease- and patient specific factors play a role in patients’ willingness to self-monitor.

Chapter 5 reveals a study regarding the use of email-consultation in Dutch general practice (GP), in which we investigated the actual use of email-consultation in 2010 and 2014 in comparison with other GP consultations. Since 2006 the costs of emailconsultation in primary care can be reimbursed in the Netherlands. For this study we used routine electronic health record data for the years 2010 and 2014. In 2010 200 general practices were included (734 122 registered patients) and in 2014 434 (1 630386 registered patients). In 2010 32% of the general practices registered at least one email-consultation, rising to 53% in 2014. However, the actual use of it was low; in 2014 email-consultations comprised still less than one percent of the total number of GP consultations (home visits, face-to-face-, telephone- and email-consultations) in general practices that registered at least one email-consultation. In ddition, we found that patients’ email-consultation usage is dependent on its provision by the general practice:  in general practices with a higher number of registered patients, located in more urban areas and with a younger patient population email-consultation was more often used. Furthermore, patients that had an email-consultation differ from those that had a telephone or face-to-face consultation in age and diagnosis; overall, patients who consulted their GP by email were older, and more often email-consultations were used for issues related to psychological, endocrine, metabolic, nutritional and circulatory health problems. Email-consultation was most used for the specific disorder of diabetes, (as percentage of al GP consultations in that disease group). Remarkably, patients with diabetes consulting their GP by email were younger in comparison with patients that consulted their GP by phone or face-to-face. The lack of reimbursement is frequently mentioned as reason why eHealth is not yet fully adopted in primary care. However, the low use of email-consultation shows that reimbursement opportunities did not directly guarantee its usage. Due to the fact that the use of email-consultation highly varied between general practices, we recommend that the implementation of emailconsultation should further be investigated in a broader context; from both patient and provider perspective. Benefits and barriers regarding the use of email-consultation by patients and care professionals should be further investigated using qualitative studies. Investigating why it works in ‘good practices’ and why it is less frequently used in others will give more insight in the process that is needed to successfully implement and use email-consultation.

The final study of this dissertation describes the findings and experiences of the eLabEL project. In Chapter 6 the most important lessons learned of this project are presented. These are set up after a systematically analyses of reflective and process-based notes from all meetings of the project partners, interview data and data of focus groups from care professionals, care managers and patients. The results showed that large-scaled implementation of eHealth depends on the effort of and interaction and collaboration between four groups of stakeholders: 1) patients, 2) healthcare professionals, 3) eHealth developers and enterprises, and 4) people responsible for healthcare policy (healthcare insurers and policy makers). We concluded that for optimal and sustainable use of eHealth, patients should be actively involved, primary healthcare professionals need to be reinforced in their management, entrepreneurs should work closely with healthcare professionals and patients, and the government need to focus on new health care models stimulating innovations. Only when these parties will all act together, eHealth can be successfully implemented.

Chapter 7 provides a summary of the main findings of the studies of this dissertation. In addition, considerations regarding the study design and patient involvement are discussed. Besides, we discussed that eHealth is barely used by patients in primary care because of a lack of: 1) knowledge and information about the possibilities and benefits of eHealth, 2) ability and skills to use eHealth and 3) expected benefits of eHealth which is influenced by disease-specific aspects. Furthermore, we discussed that the infrequent use of eHealth is a major issue for those patients who can benefit from the use of it, but do not have the opportunity, access and skills to use it. However, studies of this dissertation show that this does not include all patient groups, as eHealth seem not be relevant for every patient. In the last section of this chapter I describe what is needed to stimulate the use of eHealth in primary care. Because we found that the patient perspective cannot be studied in isolation, I describe this on the basis of recommendations for eHealth developers and entrepreneurs, healthcare professionals, patients, policy and researchers.

eHealth entrepreneurs are recommended to spend time and money for active user involvement. In particular to investigate patients’ needs at the start of the development process. In addition, it is important that information material is provided with the eHealth application. For patients this should include information about how and when to use the eHealth application. For healthcare professionals this should also include when, how and to whom to offer the application. Furthermore, co-creation with patients, care professionals and researchers is needed to bring needs from practice and technology together in useful eHealth applications.

Healthcare managers and care professionals are recommended to create a clear eHealth vision and actively discuss this with health insurers. In this way multi-annual (financial) agreements can be made. Furthermore, care professionals play a major role in informing patients about the application. By doing his uncertainties about availability, usage, safety and added value can be reduced. In addition, care professionals are recommended to well-consider to whom they offer eHealth, and at what moment in the disease process. It is important to monitor which patient groups can benefit the most from the use of eHealth, and within this group, who do not have the skills or opportunity to use it. Finally, it is essential that care professionals share their experiences with developers and colleagues to contribute to better eHealth. In addition, participation in research projects is important in order to study further the effect of eHealth on the quality, efficiency and cost-effectiveness of care in real practice.

Patients could play an important role in the broad-scale implementation of eHealth too. Patients are recommended to address their eHealth needs to their care providers. If many patients ask for eHealth, the care provider will be forced to reflect upon their vision of it. Obviously, patients can only do this when they know about the possibilities of eHealth, which is currently lacking. Patient associations and national initiatives focussing on patients could play a major role in clearly informing patients about the possibilities of eHealth. However, most importantly, patients should be open to considering using it and care professionals should be open to discussing eHealth needs with their patients. This can be further enhanced when care professionals create an atmosphere in which patients feel empowered to ask for eHealth.

It seems that health insurers and the government should also contribute to the broad-scale implementation of eHealth. Health insurers can contribute to the implementation of eHealth when they become more open to co-creating in potential eHealth projects, focusing more on long-time instead of short-time benefits and considering new financial models, such as the ‘shared savings’ principle. It seems that the role of the government should be to coordinate and support eHealth initiatives to create a better eHealth landscape for broad-scale implementation.

Researchers are recommended to investigate user needs, so eHealth applications can be developed which can be beneficial in comparison with regular care, and which fit into patients’ daily life. To investigate the implementation of eHealth, it is recommended to use models in which the broader context of eHealth can be studied; models based on the Technology Acceptance Model are too much focussed on technical aspects of eHealth. In addition, we discuss that a living lab approach is an appropriate approach to study eHealth in daily practice. However, when using such approach, it should not be underestimated that equal and active participation on the part of all stakeholders is needed, which is a challenge when no financial resources are available to support this. Starting with small experimental regions, which can be fully arranged as living labs, is recommended. Moreover, it is discussed that a focus on expected (cost) effectiveness is important in an early stage at the development process. Positive outcomes may convince health insurers to create reimbursement opportunities and primary care practices to implement eHealth so eHealth can be further developed in daily practice.

The implementation and use of eHealth in primary care is dependent on the effort of many stakeholders. All stakeholders should act together within their own layer and with their own values, expectations and challenges. All stakeholders should collaborate and need time and support to shape the new eHealth concept guiding the implementation of eHealth in primary care in the right direction.