CCM: Ambient assisted living

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Epposi is building a workable model for chronic conditions management, taking into account the medical, socio-economic and technological dimensions. This deliberative discussion game allows a variety of stakeholders to feed into this model on various aspects of chronic conditions management.

This game focuses on ambient assisted living. How should community care be managed, funded and reimbursed? What should be the role of various healthcare providers? To what extent should innovative ICT solutions be funded, and by whom?

Author / translator Michael Creek

Created 21 November 2011

Last edited 20 June 2018

Topics Ethics, Health, Politics

Policy positions

Policy position 1

Community care is funded primarily at national level, by one government body responsible for health, social care and ICT solutions. Reimbursement is chiefly from the state. There is a strong focus on the role of GPs, who refer patients to specialists and community nurses only when necessary.

Policy position 2

Community care services are funded primarily at national level, from common state funding by separate health and social welfare ministries. Reimbursement is chiefly from the state and private insurance plans. Patients are encouraged to consult specialists and community nurses directly, use innovative ICT solutions without necessarily going through GPs. Most of the funding for these ICT solutions comes from the state.

Policy position 3

Community care services are funded at regional and local level, by the state and the private sector. Designated staff are trained to ensure patients engage with innovative ICT solutions. Most of the funding for innovative ICT solutions comes from the patient’s health insurance, and not from the state.

Policy position 4

Community care services are funded at regional and local level, by the state, private sector and health insurance. Patients are encouraged to consult community nurses and specialists directly, and use innovative ICT solutions without necessarily going through GPs. Designated staff are trained to ensure patients engage with innovative ICT solutions, funded by the patient’s health insurance, and not from the state.

Story cards

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.

Anaëlle Portier, Belgium

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.

Thorsten Wilén, Sweden

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.

Iwona Tobiasz, Poland

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.

Neil Daniels, Ireland

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.

Pilvi Ilves, Latvia

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.

Anne Bruck, Germany

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.

Kris Van Vilsteren, Netherlands

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.

Elisa Panciera, Italy

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?”

Adam Linderoth, Denmark

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.

Jarek Spisak, Czech Republic

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.

Marcello Mazzonetto, Italy

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.

Patricia Soares, Spain

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?

Attila Zsiros, Hungary

INFO CARDSISSUE CARDS

Cross-sectoral healthcare

The WHO recommends an approach to policy development that involves all government departments, ensuring that public health issues receive an appropriate cross-sectoral response.

Why don’t local authorities use telemedicine?

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.

Not enough information for choice

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.

ICT: different countries, different rules

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.

Advantages of the patient-centred approach

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.

Cost-effectiveness of integrated care models

We don't yet have large-scale population-based studies which show that self-management and decision support are cost-effective.

How can we improve adherence?

A 2007 systematic review by Van Dulmen et al. made recommendations, including simpler dosage, memory aids, education and social and community support.

Training needs for family caregivers

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.

The dangers of financial incentives

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.

When do we see the benefits?

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.

Success of the Dutch healthcare system

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.

Misconceptions about cross-border treatment

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 between regions

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 needed across borders

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 favour proximity

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).

No best policy approach to CCM?

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.

Patient empowerment is not always implemented

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…”

Lack of patient information

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.”

Fees influencing first sources of healthcare

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.

Self-management and liability

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?

Lifestyle support and reimbursement

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?

Strengths of collaborative decision making

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 to collaborative decision making

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.

Support for employees with chronic diseases

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.

Access to basic medical devices at the workplace

Should employers be partially reimbursed or otherwise incentivised to purchase medical devices for the workplace, such as defibrillators?

Diagnostic tools

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.

Chronic conditions and workforce

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.

Importance of evaluation

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.

Defining chronic conditions

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.

Aims of chronic conditions management

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.

Features of chronic conditions management

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.

Our ageing population

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.

The scale of chronic conditions

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.

Patient-centred approach

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.

Chronic disease and income

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.

European Innovation Partnership on Active and Healthy Ageing

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 and EU policy

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.

Travelling abroad for treatment

In May 2007 the Eurobarometer reported that 54% of European citizens were willing to travel to another EU country for medical treatment.

Border regions

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.

What is reimbursed in cross border health care?

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.

Lack of information

Eurobarometer survey showed that 30% of EU citizens are not even aware of the possibility to receive healthcare outside their country of affiliation.

Why do Europeans seek treatment abroad? (Eurobarometer)

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.

What is eHealth?

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.

Interest in social networks

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.

Older people and ICT

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.

What are integrated care models?

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.

Nurse-led clinics

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.

Disease management programmes

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.

The problem of adherence

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.

What affects adherence?

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.

Coordinating care

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.

Comorbidity

40% of Europeans aged over 50 currently suffer from more than one chronic condition.

What is collaborative decision making?

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.

New roles for pharmacists

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.

Promotion of active self-management

According to the DAWN Study (NovoNordisk), healthcare providers recognise that psychosocial issues strongly influence how well patients manage their diabetes.

Community nursing

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.