Fostering Empowered and Responsible Citizens

All citizens will be patients at some point in their lives.

Healthcare systems will be more sustainable if individuals understand their abilities, opportunities, and responsibilities in maintaining their own health, know how to deal with the variety of health professionals and learn to navigate the complexity of the health system. Individuals and groups need to gain greater control over decisions and actions affecting their health.

This includes different aspects: health literacy, chronic disease self-management, the role of technology and patient involvement in informing national policies (in order to make health systems more user-friendly and information more accessible).

Individuals should not be seen as consumers of health services but rather custodians of their own health.

Citizen empowerment requires joint policy action from stakeholders. Through the Directive on the Application of Patients' Rights in Cross-Border Healthcare, the European Union already provides a legal framework for patients willing to gain greater access to information related to healthcare available across Europe, although in practice there is still much to be done. Improving citizen empowerment means mobilising groups with common interests such as the public sector, family doctors, civil society media , the healthcare industry and academia in order to build momentum and capacity in communities. This partnership can drive the process of empowerment.

Shared decision-making between doctor and patient can improve clinical and financial outcomes

A strong partnership between family doctors and citizens is vital. The shortage of doctors and limitations on consultation time and resources make this increasingly important for patients to be fully informed and involved in their own care. Shared decision-making allows patients to understand their own condition, review all available treatment options, and work with their healthcare professional in developing their own treatment plans based on their own life and work agenda.

Web-based decision-making tools can help patients, their carers and clinicians to share clinical and personal data and make treatment choices together. However, caution is required as such approaches increase the problems associated with the digital divide, as many vulnerable population groups lack internet access and skills.

Application of patient report outcome measures (PROMs) in a chronic disease registry throughout treatment and disease management is another way to empower patients to participate in the decision-making process, and can improve the effectiveness and efficiency of treatment, as demonstrated by the PER-module (swe. Patientens Egen Registrering) in the Swedish Rheumatology Quality (SRQ) registry.

Carers are important in improving quality of life and treatment outcomes for patients and for enhancing overall social well-being, including the ability to work and productivity. They may become managers of the care process, analyse the health needs of the family and community, ensure continuity of care and be dedicated to health promotion, rehabilitation and long-term assistance. By caring for patients in the home, carers substantially help reduce healthcare costs.

Sadly, the role of carer is often overlooked by policymakers and health systems. In addition, for many working citizens, taking on the role of informal carer presents a challenge as they struggle to balance work commitments and the demands of caring. For both caregivers and care receivers, it is important to have policies and programmes that provide adequate social and financial support and work flexibility.

Some researchers have noted that caring competently for a frail relative is the equivalent of a full-time job. Compared with their co-workers, caregivers have to take more time off, are interrupted at work more often, take more unpaid leave, work fewer hours than they wishand ultimately feel constrained in their career possibilities.

As shown by data from the Survey of Health, Ageing and Retirement in Europe (SHARE), which collects information on the health, lifestyle and financial situation of individuals aged 50 and older in a majority of European countries, there is a wide variation in the potential availability of informal carers between countries.

A Norwegian initiative is mapping out employees' care responsibilities and the measures employers can take to relieve any perceived burden imposed by this double responsibility. This is an important example of how a country can deal with the challenges of an ageing population and demonstrates what companies and municipalities who work together can do to redress the care/work imbalance.

eHealth and mHealth are widely recognised as offering huge potential for supporting, educating and empowering citizens. Currently, the majority of applications are geared towards organisations or professionals rather than the public. Nevertheless, it is essential that healthcare professionals and doctors are involved in designing eHealth and mHealth programmes for citizens so that the information disseminated is accurate. Philips' Personal Health Book seeks to gather all health information into one place for citizens, thereby keeping them fully informed.

Healthcare providers need to ensure a fine balance between sharing too much data versus sharing too little information. Debate continues around the issue of people being overwhelmed by the amount of information available on the Internet and the number of Apps on their smart phones and other devices. Health literacy and skills in utilising modern ICT tools should also be taken into consideration in a strategic and forward-looking way.

A number of rigorous reviews have found that, in developed countries, adherence among patients suffering chronic diseases averages only 50%.

The magnitude and impact of poor adherence in developing countries is assumed to be even higher given the paucity of health resources and inequities in access to healthcare. There is strong evidence that many patients with chronic illnesses, including asthma, hypertension, diabetes and HIV/AIDS, have difficulty adhering to their recommended regimens. This results in less than optimal management and control of the illness. Poor adherence is the primary reason for suboptimal clinical benefit. It causes medical and psycho-social complications of disease, reduces patients' quality of life, and wastes healthcare resources. Taken together, these direct consequences impair the ability of healthcare systems around the world to achieve population health goals.

In the US, research in 2009 estimated the cost of medicine-related morbidity, including poor adherence, to be as much as $290 billion annually, i.e. 13% of health spending.

Today, with even more complicated treatment regimens, the challenge of treatment adherence will become even greater.

Factors contributing to poor treatment adherence are diverse and involve issues concerning patients, physicians, the health system itself and the industry. For patients, this could be because of insufficient health literacy, a lack of understanding of the treatment requirements and a lack of involvement in the treatment decision–making process, discrepancies between treatment requirements and work/life routine, or difficulties in following routine visits to clinics and specialists. For physicians, this could be due to the prescription of complex medicine regimens, ineffective communication of information about adverse effects, and a lack of understanding of co-morbidities and contraindications due to the involvement of other physicians and treatments. As for the health system itself, it could be because of limited time per visit, inefficient communication between physicians and patients, limited access to care, and a lack of health information technology. Regarding the industry, this could be because of complex and inconvenient drug regimens and difficult side effects, ineffective physician/patient communication and inadequate education on treatment regimens. In its 2003 report, the WHO stressed that to address treatment adherence issues, patients need to be supported rather than blamed, health systems must evolve to meet new challenges, and that a multidisciplinary approach towards adherence is needed. This will require coordinated action from health professionals, researchers, health planners and policymakers.

By working together, these key players can initiate a series of comprehensive approaches: training and education programmes should be implemented to increase healthcare professionals' awareness and understanding of treatment adherence issues, especially in light of long-term chronic illnesses. Clinical assessment tools and behaviour change tools should be incorporated into long-term chronic disease treatment and care programmes. Communication and dialogue between healthcare professionals and patients should be improved with greater application of user-friendly eHealth and mHealth technology. Partnerships should be established and fostered between healthcare providers, community and health planners, patients, researchers and pharmaceutical companies to minimise dose frequency and side effects, and best align clinical research and development with patients' work/life routine and behaviour. Given the increasingly complex treatment regimen, these partnerships should also work together to design communication tools and behaviour change programmes to improve communication with patients and support their adherence to the treatment regimens.