I am a diabetic, and a few years ago I was also diagnosed with kidney disease. I discovered I was going to have to have kidney dialysis three times a week – this came as a terrible shock. I live in the south-west of Belgium, very close to France, and in fact, there is a treatment centre just across the border. But under the current laws, I can’t get my treatment there reimbursed, and it means I have a three-hour round trip to the nearest Belgian treatment centre. It’s incredibly frustrating. I’ve heard they’re developing devices to do this dialysis at home – this would save me nine hours a week of travel, not to mention the money.
I live alone in a small town, and I’ve been diagnosed with Parkinson’s Disease. My doctor asked if I would like to take part in a pilot programme, testing new ways to keep in touch with patients. I agreed, and they gave me a little device to wear. If I need help, I press a button, and it connects me with the emergency services. Sure enough, a few months ago, I fell down the cellar steps in my house, and couldn’t move. I’m not sure I’d be here today if it wasn’t for this device. But it’s lucky that I was wearing it – I often forget to put it on.
My dad has been diagnosed with dementia and the early stages of Alzheimer’s Disease. When the dementia first started to set in, it was my mother that cared for him. But she died last year, and it soon became clear that my dad wasn’t coping by himself. There was no way we could afford a carer for him, or to move him into a home. In the end, I had to quit my job to look after him full-time. I’m not getting any additional financial support from the state for this, and it makes it difficult to get by.
I run a small pharmacy, and I really value the relationship I have with my customers. I’ve noticed recently that I get a lot of quite complicated medical questions. Sometimes I will tell them they need to go see their GP, but I’ve been doing this for years and I’m fairly sure I could save them an appointment by giving the medical advice myself. If there was training on offer for me, or if I’d had this kind of training when I studied pharmacy, I’d be more than happy to answer their questions. It seems like a more efficient system to me.
I’m a GP, and in my area we have had to really cut average appointment times in order to reduce the number of days patients have to wait to see a doctor. I find that with this limited amount of time, I’m unable to provide a satisfactory standard of healthcare. I am obliged to refer patients to trained nurses supported by healthcare assistants, when I’m not convinced the nurses have the training to provide the quality of care that is required.
When I first started to search the web for information about my diabetes, I found some great social networks. It was a great relief and inspiration to be able to communicate so easily with people going through the same experiences as me. But I’m lucky that I speak English, as none of the social networks I found were in German. The online tools in German tended to be less social and more informative.
My wife has lung disease, and I attended a workshop with her once a week for six weeks at the local library, so we could learn to manage her care and treatment by ourselves. They gave us some good advice on how to deal with the pain and the stress of the disease, how to use medications and even how to see if new treatments are working. It was a great way to meet other people with the same problems. But I’m not used to this kind of thing – I’d feel a lot more comfortable just having a doctor tell me what to do.
My husband had a stroke, and in the hospital we were given a lot of brochures about home care. It wasn’t clear to me whether we would have home care, or how often, or who to call if it went wrong, or whether I would have to pay. But once we got started with the home care, it was great. The support worker that calls round to the house is fantastic. I don’t know what I’d do without him.
I’m a district nurse taking part in a new tele-rehabilitation programme which takes place in the homes of patients suffering from severe COPD, a type of lung disease. Patients have a monitor box installed which transmits data to me at the health centre so I can monitor the disease and provide advice. The patients and relatives can see their data online. My first reaction was: “Will the patients expect us to follow their data all the time? And will they be able to react on time if the values are out of range?”
I’m 58, and I used to work in the auto industry as an engineer. I was diagnosed with multiple sclerosis three years ago. At first I kept it quiet, but it got to the point where I couldn’t hide it. My manager noticed the shaking, and deemed me unfit to continue working in this role. I loved my job, it was a real struggle to accept I had to stop. I’m now looking for work - I’ve heard about another auto manufacturer that created a programme specifically to help workers with chronic conditions to remain in the workplace longer.
I’m a GP in a region with a high proportion of older people. Many of them are suffering from several chronic conditions at once – heart disease, diabetes, lung disease and dementia, among others. I have a real problem helping them understand how to manage their multiple conditions. I often feel I don’t have the time to go through it with them in enough detail – they appear to have understood, and then the next time I see them, it’s clear that they didn’t.
I work for the public authority in Valencia. We have realised the very heavy impact of the cross border health care in our region. Currently more than 500,000 Britons - most of whom are over 50 - and other European citizens that currently live in the Valencia region are placing an impossible burden on our country's health service. It is costing us an extra €1bn annually to look after a million new residents. This is a heavy burden on our shoulders and we cannot keep up with the current situation. I realise my community also benefits from these people, but the burden on the health system is still very difficult for us.
I live in Hungary, and my father is suffering from Lou Gehrig’s disease, which affects one or two in 100,000 people. The doctor recently told us that a new treatment exists in Germany. The healthcare system will reimburse for the treatment, but going abroad would mean travelling and staying over for some time with him. Also, we will have to pay additional costs for translation of documents, interpreting, etc. We will need several operations and medicines. We will not be able to claim this money back. This brings us to a very difficult economic situation, but how can someone judge anything over the life of his father?
INFO CARDSISSUE CARDS
The WHO recommends an approach to policy development that involves all government departments, ensuring that public health issues receive an appropriate cross-sectoral response.
Applications for telemedicine and home care support are well-proven but local authorities are simply not aware of their possibilities. There is a lack of training, and not enough resources for providing telemedicine services.
Choice within healthcare still is far from what citizens and users expect; few Europeans have in practice the combination of legal rights and access to knowledge to make informed choices.
It is difficult to enforce EU regulatory regimes across the internet. These regimes include a ban on Direct-to-Consumer advertising, specifications on the quality of medical advice, and differences in legal opinion over the safe delivery of medicines.
In the care of patients with chronic conditions, studies indicate that patient-centred approaches can improve disease management; increase both patient and doctor satisfaction; increase patient engagement and task orientation; reduce anxiety; and improve quality of life.
We don't yet have large-scale population-based studies which show that self-management and decision support are cost-effective.
A 2007 systematic review by Van Dulmen et al. made recommendations, including simpler dosage, memory aids, education and social and community support.
Despite the increasing attention that is paid to family caregivers, evidence suggests that much training is needed. There are also clear context- and culture-specific limits to what family caregivers can do for patients with chronic diseases.
Financial incentives encouraging a few narrow goals can lead to excessive focus on these goals, together with “gaming” or better reporting without any improvements in quality.
In the case of chronic care management, benefits of any given model only become apparent after several years. The quality of care will therefore only be improved if providers are confident that they will be able to benefit from their investments.
In 2009, the Euro Health Consumer Index ranked the Netherlands top out of 33 national healthcare systems. The Dutch system combines competition for funding and provision within a regulated framework. The Netherlands are advanced in the area of patient empowerment.
According to the 2008 Eurobarometer, 70 percent of the EU 27 population believes that costs of healthcare treatment incurred elsewhere in the EU will be reimbursed by their own healthcare authority.
Cost-effectiveness studies have found that individual and group approaches to chronic disease prevention may be highly cost-effective. But the success of interventions is largely determined by regional differences in cost structures and in the burden of chronic diseases.
Prior authorisation when cross border health care is needed is often complex, long and arbitrary especially for rare diseases which are unknown by many health care professionals and authorities and thus marginalised in healthcare systems.
Patients often find travelling for treatment unpleasant (a survey in Finland showed that 90% of elderly citizens refuse referral even within Finland even though this would mean a shorter waiting time).
According to the WHO, no evidence suggests that one policy approach to chronic disease management is necessarily superior to others. The key to success appears to be the joint development of solutions to meet local needs and systematic implementation with regular monitoring built in.
The European Patient Empowerment report of 2009 states that “French patients have far-reaching rights to participate in public decision-making, but the French patients’ rights laws have rarely been implemented in real life…”
The European Patient Empowerment report of 2009 states that “two out of three European countries still do not provide information about medicines in a fashion understandable to laypersons.”
Studies in Nordic countries indicate that the level of user fees affects the choice between emergency room and family doctor care. In Denmark a visit to the listed GP is free, but there is a large fee for seeing a specialist without a referral from the GP.
When a patient is undergoing self-management, who should pay for problems caused by bad administration of the self-management tools? The patient? The healthcare system that trained the patient? The insurance company covering the patient?
For certain chronic conditions, diet is key to treatment. But particular diets can be expensive. Should healthcare cover the cost of a food allowance for patients?
Studies show that collaborative decision-making between health care providers and families can facilitate treatment adherence, health outcomes, and satisfaction with care in the management of chronic illness.
Barriers such as authoritarian models of medical care as well as absence of time and opportunity for dialogue limit collaborative decision making and can disrupt treatment adherence.
Employees with certain chronic diseases cannot always be confident that their employers will react supportively when informed about a chronic condition such as multiple sclerosis.
Should employers be partially reimbursed or otherwise incentivised to purchase medical devices for the workplace, such as defibrillators?
Today, diagnostic tools to detect chronic diseases are limited. A new generation of devices is being developed to detect chronic diseases in large populations. These devices must be cheap, simple, effective, enabling autonomous use by everybody.
People with chronic conditions often retire early, are unable to work, or are affected by stigma. Evidence shows this has an effect on the labour market, in terms of workforce participation, hours worked, job turnover, wages, earnings and position reached.
Evidence-based assessments of the effectiveness including cost and benefits of innovations are often either absent, fragmented or poorly assessed, or are not well communicated to healthcare actors and patients.
We can define chronic conditions as diseases of long duration and slow progression which are mostly preventable, prevalent, high socio-economic impact and which can be self-managed.
We can define chronic conditions management as integrating care and social services to support people with chronic diseases to improve their health outcomes, and quality of life and deliver better cost-effectiveness and value to society as a whole.
CCM uses a systematic approach, with both preventative and curative interventions, provided by a multidisciplinary team, and through self-management. It aims to improve clinical outcome quality and cost-effectiveness of care.
Over the next 20 years, the number of Europeans aged over 65 is expected to rise from 85 million in 2008 to 123 million in 2030: 25% of the population. Total public age-related expenditure is expected to increase by 2.7% of GDP.
In 2005, noncommunicable diseases were the cause of eight million deaths in Europe – over 85% of all deaths that year. They resulted in the loss of the equivalent of 115 million healthy years of life.
When planning, delivering and evaluating healthcare, the patient-centred approach brings together healthcare providers, patients and families in mutually beneficial partnerships. The approach encompasses: respect for patients’ preferences and values; emotional support; physical comfort; information, communication and education; continuity and transition; coordination of care; involvement of family and friends; access to care.
According to WHO figures, in high-income countries, chronic diseases account for a greater proportion of deaths than in low-income countries. However, within high-income countries, the poor carry a higher chronic disease burden than the rich.
This is an EU initiative as part of Europe 2020, to improve social and healthcare systems in prevention and health promotion, care and cure, and active and independent living of elderly people. It aims to increase the average healthy lifespan by two years by 2020.
eHealth is a priority in the Digital Agenda for Europe adopted by the European Commission in May 2010 and the Directive of the European Parliament and of the Council on the application of patients’ rights in cross-border healthcare.
In May 2007 the Eurobarometer reported that 54% of European citizens were willing to travel to another EU country for medical treatment.
The nearest hospital for citizens in border regions is usually the one in a neighbouring Member State. 1/3 of the EU population lives in border areas.
Reimbursement in patient’s own country is often lower than the cost for treatment abroad. The difference between these two is borne by the patient.
Eurobarometer survey showed that 30% of EU citizens are not even aware of the possibility to receive healthcare outside their country of affiliation.
91% of responders said due to inability for treatment at home, 78% due to better quality of treatment abroad. 69% would travel for treatment by a renowned specialist and 64% in order to reduce waiting time for treatment while 48% for cheaper treatment.
Any healthcare practice supported by electronic processes and communication, including information networks, electronic health records, telemedicine services, portals, and other ICT tools assisting disease prevention, diagnosis, treatment and monitoring.
Results of a recent European study indicate that healthcare providers, patients and pharmaceutical companies all seek further engagement in the social networks for health. They would all increase their involvement given clearer regulation and better governance of fact.
Only 10% of people over 65 use the Internet regularly as compared to 47% for the EU on average. The reasons for limited access are most often insufficient motivation, financial means, digital competencies and convenient training.
Integrated care models take account of the fact that patients often have several chronic conditions at once. Treatment is organised to integrate these services across the healthcare system. Care is also integrated for patients of one chronic disease.
In the UK, Netherlands and Scandinavia, the management of many chronic diseases has been moving to nurse-led clinics. The main reasons for this growth are economic in nature, as well as the chance to create new career opportunities for nurses.
DMPs have been introduced by many European countries to improve chronic care and contain costs. The aim is to improve coordination by focusing on the whole care process, building on scientific evidence and patient involvement.
In 2003, the WHO report Adherence to long-term therapies found that compliance by patients with long-term diseases – such as cardiovascular diseases or depression – was poor. Only about 50% of patients in developed countries adhered to their treatment.
Whether or not a patient adheres to treatment depends on the complexity and length of treatment, previous treatment failures, frequent changes in treatment, the immediacy of beneficial effects, and side effects and the availability of medical support.
Chronic care often involves multi-provider settings, and patients with chronic conditions often have several diseases. Research confirms that patients’ perception of the quality of care is largely determined by the success of this coordination.
40% of Europeans aged over 50 currently suffer from more than one chronic condition.
Collaborative decision making is a process of engagement in which healthcare professionals and patients and their family and friends work together, often using ICT tools to understand clinical issues and determine the best course of action. The exchange of information leads to the development of a stronger partnership between the patients and the health professionals.
A contract introduced in England in 2004 enabled pharmacists to expand their role by providing repeat prescriptions, reviewing medication and compliance, and providing smoking cessation services.
According to the DAWN Study (NovoNordisk), healthcare providers recognise that psychosocial issues strongly influence how well patients manage their diabetes.
Germany has recently created community nurses, similar to nurse practitioners in other countries. They make house visits and are responsible for basic primary care, supported by eHealth equipment. This gives chronically ill people in rural regions better access to basic medical care. It also relieves family doctors for other work.
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