What is Patient Empowerment?
We hear the term ‘Empowered Patient’ the ‘Patient Advocate’ the ‘Involved Patient’ a lot these days. Here at Retina International (RI) a key objective is to educate our patients on emerging policies that may affect their health care in the future. Regardless of where we live in the world inequalities in access to diagnosis, care and treatment are a reality. By working together to think internationally and act nationally we can draw on each other’s experiences so that as individuals and as a collective we can work towards better outcomes for people living with retinal dystrophies be they genetically inherited or age-related.
We are all advocates for our future healthcare so are the clinicians, allied health professionals and scientists who work with us at RI.
If you are new to the area of health advocacy and patient empowerment here are some explanations that we hope will define the terminology used.
We want to hear from you so if you have any questions let us know!
EMPOWERMENT OR INVOLVEMENT?
The difficulty with defining patient empowerment in a way that is understandable to everyone is that it is a rather abstract, intangible concept. It is also not easy to distinguish clearly between patient empowerment and patient involvement.
In certain contexts such as research, the term patient engagement is often used. However, if we think of “involvement” as similar to “participation”, the distinction becomes clearer.
In very simplified terms empowerment is an intangible process, which often manifests itself in concrete action. The term participation may also be preferable because it is always an active word (in English). For example, when a patient gains all the knowledge they need to understand their condition, their life goals and the benefits and risks of different therapeutic options, they can reflect what choice will be most suitable in their personal situation -“empowerment” - and participate actively in the therapeutic decision making process with their doctor -“involvement”.
Empowerment is a multidimensional process that helps people gain control over their lives and increases their capacity to act on issues that they themselves define as important. Collective empowerment is a process through which individuals and communities are able to express their needs, present their concerns, devise strategies for involvement in decision making, and take political, social, and cultural action to meet those needs. This is a core function of RI and many of our member organisations.
Empowerment is therefore a process through which people increase their capacity to draw on their personal resources in order to live well and to navigate the health care environment. Aspects of empowerment include self-efficacy, self-awareness, confidence, coping skills and health literacy. Empowerment is not a simple process, nor is it necessarily linear.
A patient can feel empowered in a certain context, and disempowered in another. During the “patient journey”, a feeling of being empowered can change, of course, according to the people and structures that the person encounters.
For example it is possible to say “I involve you”, which leaves the involved person in a passive position. But it is not possible to say “I participate you”.
Luttrell et al. 2009 and the Duque project (www.duque.eu)
In a recent European Joint Action patient involvement is defined as follows:
Individual: the extent to which patients and their families or caregivers, whenever appropriate, participate in decisions related to their condition (e.g. through shared decision-making, self-management) and contribute to organisational learning through their specific experience as patients.
Collective: the extent to which patients, through their representative organisations, contribute to shaping the health care system through involvement in health care policy making, organisation, design and delivery.
Involvement/participation therefore has both an individual and a collective dimension. Patient involvement, whether individually or collectively can take place at micro, meso and macro levels. For example: at individual (micro) level, patients can participate through shared decision-making and self-management. At organisational (meso) level, patients can participate by being involved in quality improvement initiatives at hospitals. At policy (macro) level, patient organisations participate in shaping health policy.
Recently, the EMPATHIE project (“Empowering Patients in the Management of Chronic Diseases”) developed a working definition of an empowered patient. This definition in fact combines both empowerment and involvement:
“An empowered patient has control over the management of their condition in daily life. They take action to improve the quality of their life and have the necessary knowledge, skills, attitudes and self-awareness to adjust their behaviour and to work in partnership with others where necessary, to achieve optimal wellbeing. Empowerment interventions aim to equip patients with the capacity to participate in decisions related to their condition to the extent that they wish to do so to become “co-managers” of their condition in partnership with health professionals; and to develop self-confidence, self-esteem and coping skills to manage the physical, emotional and social impacts of illness in everyday life.”
However, this definition focuses only on the individual patient and its scope is limited to managing life with a chronic condition, even though it does go beyond the purely medical context. It does not include the notion of “critical awareness” and patients’ active participation with the aim of changing the system. But it also does not address the role of patient organisations as representatives of the patient community in a wider sense whose role is to advocate for the patient perspective at policy level.
The Alma Ata declaration defined civic involvement in healthcare as both a right and a duty: The people have the right and duty to participate individually and collectively in the planning and implementation of their healthcare.” (Alma Ata DeclarationPrinciple IV1978, WHO). “Meaningful patient involvement” as part of a global patient movement, RI along with other umbrella groups belive it is based on the premise that patients have a specific expertise derived from simply being patients, which is a valuable source of experienced knowledge. The patient’s perspective is not the same as the lay/consumer perspective. The patient’s knowledge is derived from living with a condition day to day and from being in frequent contact with the healthcare system.
In addition to being a right, patient involvement is recognised as having benefits for developing therapies and healthcare services in a way that has positive impact on patients and society. RI believes that meaningful patient involvement in health policy and programmes will lead to services that provide real value for patients, as well as reducing unnecessary waste.
Health literacy is a key aspect of empowerment. Although empowerment involves much more than becoming an educated/informed patients the right information and resources are fundamental tools for empowerment. Health literacy however, is more than information. It is defined variously as: The cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health. (WHO, www.who.int). The ability to make sound health decisions in the context of everyday life at home, in the community, at the workplace, the healthcare system, the market place and the political arena.
From a patient’s perspective, the knowledge and competence gained through health literacy leads to the strength and empowerment needed to manage well a disease and its impacts on quality of life. Health literacy starts with good, easily understandable information: information is a tool towards improved health literacy. To make genuinely informed decisions about health and treatment, it is vital that patients can access all the relevant information needed in an easily understandable format. The health literate patient is then able to process, appraise and apply the information to their own personal circumstances. This is usually defined as “functional” health literacy. More advanced levels of health literacy are interactive health literacy and critical health literacy. Patients’ information needs are diverse and vary according to age, socio economic status, gender, beliefs, preferences and coping strategies, and according to their general literacy, first language, skills and abilities. Needs often change during the patient’s journey, as does the “empowerment status” of the individual patient.
Patients are “experts by experience”. Their perspective on their own disease is unique: patients live with the condition every day, learn to manage it themselves with support from healthcare professionals, and by necessity learn to navigate the health system in order to get the best care. Self-management is a key element of patient centred care: in chronic conditions, the management of the condition ismostly handled by the patient at home and in the community, so in this sense patients already “self-manage”.
Self-management can be understood as a partnership between patients and the healthcare team: the team should support patients in “living with” their illness and in managing the conditions and their physical, psychological, emotional and social impacts. Through self-management support, patients can develop the confidence, self-efficacy and skills to take control of their daily life and attain the greatest possible quality of life.
Self-management, therefore, does not mean leaving the patient to cope on their own. It is a holistic approach providing the appropriate support and tools according to each person’s individual needs and preferences. Self-efficacy pertains to an individual’s belief in their capacity to successfully learn and perform a specific behaviour. A strong sense of self-efficacy leads to a feeling of control and to the willingness to take on (and persist with) new and difficult tasks.
When applied to health, this theory suggests that patients are empowered and motivated to manage their health problems when they feel confident about their ability to achieve their goal. Interventions for improving self-care should therefore focus on building confidence and equipping patients with the tools (knowledge and skills) to set personal goals and develop effective strategies for achieving them.”
SHARED DECISION MAKING
At the heart of the empowerment approach is seeing the patient-professional relationship as a partnership of equals. Empowerment does not happen in a vacuum: it is a two way process. The patient needs a counterpart in the empowered health professional who welcomes the patient’s involvement and knows how to create an enabling healthcare environment.
All Health Professionals need to develop the necessary skills and attitudes to adapt to the new patient role, shifting from a paternalistic medical model to a collaborative model. Key barriers however are often the result of time/shortages of staff, and patients’ lack of information but attitudes of health professionals.
In an organisation like RI that works to advocate globally it is important to remember that some patients cannot even access basic healthcare, so how could they even think about empowerment? Equity of access and patient empowerment are closely linked. At the same time, there are real risks that empowerment approaches, if not carefully implemented, may exacerbate existing inequalities. Some groups and individuals may be more in need of empowerment than others, and “one size” is not likely to fit all needs. Health systems and services should be designed to be empowering for all users, including disadvantaged or socially excluded patients.
Application of patients’ rights and human rights generally should be ensured such as meaningful informed consent focusing on the patient’s ability to make meaningful choices and effective mechanisms should be in place to ensure non-discrimination both within the health system and outside the health system. At system level, health in equalities need to be addressed via a comprehensive “Health Inequalities in all Policies" approach including targeted strategies (for example health literacy) for specific groups.
Does empowerment mean shifting the responsibility on to the patient? The empowerment approach aims to realise the vision of patients as “co-producers” of health and as integral actors in the health system. Many patients would like to take more responsibility for their own healthcare, given the opportunities and support to do so. To achieve this, there is a need to support patients, through high quality information and health literacy, but also to equip health professionals with the necessary skills to work in partnership patients.
This is now and always has been a core value of RI and in a changing world with more and more opportunities to reach out to patients in all regions, we will work to ensure that our members collaborate and share approaches and strategies for Empowerment and Involvement so that we can be front and centre in the decisions that do and will affect the lives of all people living with a retinal degenerative condition.