Hierarchical health systems and barriers to active participation of people and health providers may hamper shared decision-making. Health literacy facilitates active participation, sharing of power and knowledge to make decisions with informed consent.

Context

Shared decision making - whereby health professionals and patients discuss possible options for care and make decisions together using best available information - is central to patient empowerment and autonomy. This fosters genuine possibilities for patients to freely choose and make informed decisions about medical alternatives and self-care management. 

Associated with improvements in the quality of decisions, better patient knowledge and risk perception, shared decision-making regarding treatment and care has the potential to reduce health disparities between less and more disadvantaged patients in terms of their health literacy skills. Patients who are informed and express preferences contribute to improved health outcomes, which are safer, cost-effective, and efficient.

Challenges

Hierarchical health systems and a lack of awareness of the possibility for individuals to be co-opted in decision-making processes are a challenge. 

European research reveals challenges when people engage with health providers. For instance, in the UK 23 % report concerns with a health system provider, 35 % report difficulties in making sure that the health system provider understands them properly, 25 % report difficulties in discussing with the provider until they understand all they need to know, and 23 % experience difficulties in asking questions to providers to obtain health information . Though some of these difficulties are rooted in patients’ limited health literacy, this may also relate to the difficulties of health authorities to redistribute power and agency.

Limited health literacy has been linked with greater decision conflict between patients and health care professionals, which may be due to its association with difficulties in comprehending risk estimates of suggested care. Considering that European research shows that 43% of adults perceive difficulties in assessing the advantages and disadvantages of different treatment options , the regional challenges for genuine shared decision-making are evident. 

In a patient-centred process for informed consent, information about various options for treatments and their risks, benefits and costs, should be communicated in a clear, transparent and unbiased manner. Based on their individual preferences and experiences, patients should be able to weigh the benefits of treatment against probable risks and to avoid decisions that would not have been made if patients were well informed and involved. 

Furthermore, to improve shared decision-making and treatment adherence, different approaches are needed for people with limited levels of health literacy and for people with high levels of health literacy (i.e. non-adherence can, on the one hand, be unintentional for patients with limited levels of health literacy while, on the other hand, be intentional for patients with high health literacy).  

Actions

Health literacy empowers people to genuinely participate in shared decision making. Health systems have the responsibility to secure opportunities for shared decision-making by adapting their procedures to the needs of individuals, to give them a voice, to acknowledge their social situations, and to collaborate with them equally. In this connection, the use of intercultural mediators in health could help to bridge socio-cultural gaps, to build trust in health care providers, and to facilitate shared decision-making relationships.

Individuals need Systems have the responsibility to
  • relevant information about their health conditions and available options for care;
  • information about their right to be heard and to participate in making decisions that influence their health and health care;
  • to identify and describe their expectations, preferences, wishes and needs;
  • to reflect on information from their personal perspective and to assess what fits with their own lives (opportunities, preferences);
  • to ask for clarifications when necessary;
  • to participate in making care plans, to discuss alternative options and to make joint decisions.
  • provide sufficient amounts of information for patients, in needed formats;
  • facilitate patient’s reflective thinking and question-making;
  • value patients (their knowledge, experiences etc.);
  • distribute power, creating mutual understanding and trust, respect patients’ views, expectations and values, by using, if needed, intercultural health mediators;
  • be aware of patient diversity and their unique needs.

 

Shared decision-making tools and guidelines – UK

 Aim and objectives:

Shared decision-making is a joint process in which a healthcare professional works together with a person to reach a decision about care. It involves choosing tests and treatments based both on evidence and on the person's individual preferences, beliefs and values. 

 Target group:

The key audiences for decision aids of the National Institute for Care and Excellence (NICE) are people facing those decisions (and their carers, guardians and relatives as appropriate) and the practitioners involved in their care. Secondary audiences are organisations commissioning or providing care (which may include decision aids in policies and pathways), and voluntary and community sector organisations (which may promote them to the people with whom they work).

 Method:

Preference-sensitive decision points are points where the person’s values and preferences are particularly important. They occur when either:

There are two or more options for investigation, treatment or care that deliver similar outcomes but:

  • they have different types of harms and benefits which people may value differently, or
  • the likelihood of the harms or benefits may differ, or
  • the practicalities of the options are different (for example, the choice is between medicine and surgery, or the requirements for monitoring differ), or
  • people may consider the overall risks of harms for any of the options outweigh the overall benefits compared with no treatment.
     

or

  • The choice between an investigation, treatment or care option and the option of 'no treatment' is finely balanced.

The NICE decision aids are developed for various treatments and care options which helps to:

  • summarise the best available evidence relating to the effectiveness, safety and practical factors relating to the treatment or care options, and 
  • present that information in a way that is easy for people facing the decision (and their carers, as appropriate) to understand, with support from their health or care practitioner, so that they can weigh up the options pros, cons and trade-offs.
     

 Outcome:

Decision-making aids allow people to discuss and share information. This makes sure people have a good understanding of the benefits, harms and possible outcomes of different options. Shared decision-making empowers people to make decisions about the treatment and care that is right for them at that time, including choosing to continue with their current treatment or choosing no treatment at all.

 Added value:

Shared decision-making tools allow people the opportunity to choose to what degree they want to engage in decision making. Although, at times, some people prefer not to take an active role in making decisions with their healthcare professionals.

 Shared decision-making tools and guidelines - UK

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Integration of patients’ and health care professionals’ different domains of knowledge for shared decision making in treatment discussion – Finland

 Aim and objectives:

Integrating the knowledge pools of professionals’ medical knowledge and patients’ experiential knowledge when negotiating treatment in health care encounters.

The domains of knowledge or “knowledge pools” into which patients and health care professionals are entitled to have access to are asymmetric: professionals have access to medical information, whereas patients have access to information concerning their own experiences and life world, such as their symptoms, their preferences and values. 

 Target group:

Health care professionals.

 Method:

  • inquiring about the patient’s perspective, such as expectations concerning treatment and its integration in the treatment suggestion;
  • presenting options rather than just one possible alternative;
  • if needed, recommending a specific option by drawing upon the patient’s disclosed perspective and explaining why this option is recommended.

 Outcome:

Patients can match the suggested treatment to their possible expected treatment solutions and to understand the grounds for treatment recommendation.

 Added value:

Expected improvements in patient experience of possibilities to influence their own treatment and better adherence to treatment.

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Back Health Literacy Pathway Model – United States

 Aim and objectives:

The Health Literacy Pathway Model describes how health literacy develops along a trajectory that enables individuals supported by others, to seek, engage with and act on health information to manage their health and become actively involved in health system consultations and informed decision-making.

 Target group:

Patients with a long-term condition can develop health literacy skills over time and put their skills into practice in becoming more active in health system consultations.

 Method:

The method entails development of knowledge, health literacy skills and practices, health literacy actions, abilities in seeking options and informed and shared decision-making opportunities. 

 Outcome:

Applying the health literacy pathway in practice, helps to identify the motivations and barriers to developing and practising health literacy skills while also taking into account the characteristics of the individuals as well as the health professionals. 

 Added value:

Developing the health literacy pathway supports people to become more involved in health system processes, including informed and shared decision-making.

Figure : The supported health literacy pathway .

Figure : The supported health literacy pathway

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