The vision of the empowered patient is still lagging behind reality, but now e-health offers the opportunity for patient empowerment. Potential benefits include better health outcomes and higher cost-effectiveness. However, looking at the European situation, one realizes that a number of obstacles have to be overcome, before these benefits can be reaped.
The concept of patient empowerment emerged in the 1970s in the United States and Europe in the context of the civil rights movement. Patients and their organisations demanded a right to self-determination over decisions affecting their health.
In addition to political pressure for giving consumers and patients more rights, there were also factors in the healthcare sector itself, which supported this trend. Alternative medicine and the growing number of alternative treatments, especially for chronic diseases, increased the choice available to the patients. A growing sensitivity to environmental factors influencing health further fuelled the push towards patient empowerment.
Patient empowerment in Europe
Most European countries have included patient empowerment in their healthcare policies via patient rights legislation and patient charters. However, considerable differences still persist across Europe: the approaches and the level of implementation vary significantly.
Surveys of patients at the National Health Service (NHS) in the UK conducted in 2004 show that 47% of inpatients, 30% of outpatients, 36% of emergency patients, 32% of primary care patients, 39% of coronary heart disease patients, and 59% of mental health patients would have liked more information and choice in decisions about their care.
While in Denmark the extended choice of hospitals was introduced in the early 1990s, similarly, in Norway free choice of hospital was implemented in January 2001.
In other EU countries, like France and Germany, social insurance systems seek to limit patient choice, aiming to encourage the use of so-called “preferred providers” and to avoid multiple treatment by different doctors in order to lower costs. At the same time, both Germany and France have improved the patient rights for information access and strengthened their responsibility for their health. In 2002, the French Parliament adopted a “Patients Rights and Quality of the Health Care System” law, under which, patients are responsible for decisions regarding their health status.
Patient-empowering e-health applications
The European Commission has defined e-health as “the application of information and communications technologies across the whole range of functions that affect the health sector, from the doctor to the hospital manager, via nurses, data processing specialists, social security administrators and – of course – the patients.”
The focus of the first phase of e-health development was on systems and applications, which facilitated the work of medical professionals and healthcare institutions. Although this contributed to the higher effectiveness of the healthcare system in general; e-health technologies like hospital information systems were designed to empower healthcare professionals and not the patients. In Europe, the focus has shifted in recent years towards more patient-centric e-health applications.
Web-based health portals
Health portals on the Web are the most common e-health application for patient empowerment. According to a survey by EU project eHealth ERA, health portals have a share of 31% among all e-health applications classified as patient-empowering.
Nearly all EU countries have at least one national health portal – for example the UK e-health portal NHS Direct Online , which had 13.5 million users in 2006. In addition, some countries have specialised portals for specific groups of citizens or for specific health issues. These portals offer a varying degree of interactivity, ranging from information repositories with low interactivity to websites with high interactivity offering contacts to medical experts, consultation via videoconferencing, and training programmes.
Communication between physicians and patients in Europe is in most cases still limited to face-to-face consultations and telephone. Some studies in fact convey the impression that the majority of physicians and patients are not ready to use e-mail for health care purposes; many physicians have reservations about time demands, medicolegal risks, and doubts about the ability of patients to use e-mail appropriately. According to a recent survey in ten EU countries, 28.4% of the respondents answered that they had a telephone consultation with a doctor, but only 1.4% had a consultation by e-mail.
Electronic Personal Health Records
A report to the Nuffield Trust highlights that “ePHRs have the potential to improve communication between providers and patients by sharing information, to enhance the quality of records by highlighting inaccuracies, and to reduce the burden of care by engaging patients in managing their own health and illness.”
One of the most prominent examples of ePHR implementations in Europe is HealthSpace in the UK. It provides patients with secure access to a personal online health organiser, including a calendar for appointments and reminders as well as a means to keep record of their blood pressure, weight, and their progress in self-care programmes on, for example, stopping smoking or managing diabetes.
However, apart from the limited number of ePHR offerings, the citizens’ knowledge about them and their trust in such systems seem to be rather limited. This is understandable, as the public discussion in Europe so far has mainly been focused on Electronic Health Records (EHR) as a tool for health organisations to become more effective, rather than patient empowerment.
e-chronic care and self care
New processes based on ICT tools driving chronic care, emphasise prevention of complications, utilising evidence-based practice guidelines and patient empowerment strategies.
Chronic care is primarily targeted at patients with chronic conditions like diabetes, asthma, HIV/AIDS, cancer, and other such disease. ICT-enabled monitoring of such patients’ health condition facilitates necessary adaptations of therapy plans and in medication, allowing the healthcare professional to intervene on time to avoid acute care intervention.
However, a number of ICT systems for chronic care aim to create smart environments that eliminate the need for the patient to do anything himself. These systems may be appropriate in some cases, but their complexity and the resultant low transparency can also reduce the level of acceptance. Examples of this automated approach are projects on smart sensors and electronic decision-making systems that autonomously decide on alerts or even therapeutic measures, e.g. insulin injections.
Drivers and barriers for patient empowerment through e-health
On the demand side, patient empowerment through e-health is, in Europe, mainly driven by the ageing population and the growing health consciousness and individual health demands by large parts of the population. From 2005 to 2030 the number of people in the age group 65+ will rise in the EU by 52 % or 40 million, while the age group of 15-64 will decrease by about 7 % or 20.8 million.
This demographic change puts enormous cost pressure on European healthcare systems. In Europe, healthcare expenditure has already reached an average share of 8.5% of the GDP and is rising faster than the overall economic growth. Thus, on the supply side, public health institutions and health insurers promote e-health and more patient responsibility as a way to contain the cost of healthcare, while guaranteeing an acceptable level of healthcare for everyone. In addition, the fast development of ICT, for example in the area of sensors for health monitoring, adds another push.
On the other hand, many citizens in Europe still lack the necessary health literacy, computer literacy, and Internet access. In 2006, 46% of households in the EU27 had no computer and 58 % no Internet access at home. The situation is even worse for elderly people: 90% of the age group 60+ in the EU27 had no Internet access.
In addition, patients have privacy concerns and a lack of trust when it comes to sending personal health data via the Internet. Patients also have concerns regarding the dehumanisation of their medical treatment, if they have to rely increasingly on interacting through computer interfaces and are dependent on automated processes they cannot control.
On the supply side, many physicians are not yet ready for the organisational change, being still attached to the model of the doctor dominating the decision-making process. Others also have legal concerns in regard to their liability in case something goes wrong, other issues are the lack of nation-wide and Europe-wide interoperability between e-health tools and the lack of integration and legacy systems.
The type of disease also limits the advisable extent of patient empowerment. Patients with acute diseases who need urgent medical help still have to rely more on decisions by physicians than patients with chronic conditions.
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