This report, “Patient and family engagement,” focuses on engaging and empowering patients and their families to support the journey towards safer health care. It emphasizes that patients and their families are key partners in developing and implementing patient safety policies and action plans, offering unique first-hand perspectives that healthcare professionals might miss. The report highlights that meaningful patient engagement can potentially reduce the burden of harm by up to 15%.
Patient and family engagement is recognized as a pivotal strategy to advance safety in health care and is one of the seven strategic objectives of the WHO Global Patient Safety Action Plan 2021–2030. The World Patient Safety Day 2023 was dedicated to the theme “Engaging patients for patient safety,” urging all stakeholders to involve patients in policy formulation, governance structures, co-designing safety strategies, and active partnership in their own care.
The report is structured around five key strategic objectives:
- Co-development of policies and programmes with patients (Strategy 4.1): This involves patients in governance and policy-making. However, globally, only 13% of countries have appointed a patient representative to the governing board of the majority of their hospitals, and only one in five countries consistently involves patients in health care policy-making. Despite this, 27% of countries have identified patient organizations at both national and subnational levels, with another 44% at the national level. Many countries, such as Thailand, Czechia, Australia, Kazakhstan, Chile, and Cyprus, have initiatives to involve patients in decision-making and policy development, with some establishing patient councils or legal frameworks for participation. The WHO Patients for Patient Safety (PFPS) programme, established in 2005, also facilitates partnerships between patients and policymakers to make healthcare safer globally.
- Learning from patient experience for safety improvement (Strategy 4.2): This includes gathering patient feedback and learning from their stories. 80% of countries have mechanisms to collect feedback from patients and families on safety and quality, though only 27% report back on improvements made based on this feedback. Additionally, one in five countries regularly uses patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs). Countries like Colombia, Cuba, Türkiye, New Zealand, Ireland, and Australia have implemented various patient feedback and story-sharing mechanisms to identify root causes of problems and shape effective solutions.
- Patient advocates and patient safety champions (Strategy 4.3): The report emphasizes building the capacity of these individuals to influence healthcare design and delivery. While over half of countries recognize and support patient advocates, only 12% have established educational and technical resources or capacity-building programs for them. Twenty-eight percent of countries have established Patients for Patient Safety (PFPS) networks, primarily in high-income and upper-middle-income countries. Examples include the establishment of a Department for the Support of Patients’ Rights in Czechia, a Consumer Involvement Training Curriculum in Namibia, and resource provision in Pakistan. The case study of Susan Sheridan highlights how patient advocates, like herself, who lost family members due to preventable harm, can become effective leaders in advocacy and policy co-development.
- Patient safety incident disclosure to victims (Strategy 4.4): This strategy promotes transparency and openness with patients and families about their care, including disclosure of adverse events. It requires informed consent, patient access to medical records, and disclosure of harm. More than two-thirds of countries have national guidelines on informed consent. 80% of countries have procedures for patients to access their medical records, although only 50% proactively inform patients about these procedures. However, only a quarter of countries have established procedures for disclosing adverse events to patients and families, and a mere 10% of countries have guidelines for offering psychological support to those affected by serious patient safety incidents. Countries like Germany, Pakistan, Iran, and the UK have implemented legal frameworks and guidelines to ensure transparency and patient rights, including the “duty of candour” regulation in the UK.
- Information and education to patients and families (Strategy 4.5): This aims to empower patients for shared decision-making through public awareness and health literacy. 66% of countries have implemented health literacy programmes, with 19% specifically raising awareness about patient safety. However, only 25% of countries publicly provide information on health service access, safety, and quality. The report also notes an increasing role of digital technologies, with 45% of countries implementing new uses to enhance patient involvement, but only 16% having a comprehensive strategy for this. Initiatives range from clear information dissemination in Cuba and Spain to the use of smartphone applications like WHO MedSafe for medication safety and Vigo Health for stroke rehabilitation.
Overall, the report highlights that while significant progress has been made in engaging patients, with 23% of patient engagement criteria fully met and 38% partially met, significant challenges persist, with an overall weighted performance score of 45%. It underscores the need for continued efforts to ensure patients’ voices are heard and integrated at all levels of healthcare to drive meaningful improvements in safety.
Reference: Global patient safety report 2024. Geneva: World Health Organization; 2024.
