Patient representation in official roles and

decision-making processes

Australia ● ● ●

Austria ● ● ●

Belgium ○ ● ○

Canada* ○ ○ ○

Czech Republic ○ ○ ○

Denmark ● ○ ○

England ● ● ●

Estonia ○ ● ○

Germany ○ ○ ●

Ireland ○ ● ●

Israel ● ● ○

Japan ● ● ●

Latvia ● ○ ●

Lithuania ○ ● ●

Luxembourg ● ● ●

Netherlands ● ○ ●

Northern Ireland ● ● ●

Norway ● ● ●

Portugal ● ● ○

Scotland ● ● ●

Slovenia ○ ● ●

Spain ● ● ●

Sweden ● ● ●

Switzerland ○ ○ ○

Wales ● ● ●

Note: ●= yes, ○=no, * Canada has a federated, decentralised health system with safety policies and governance functions developed and implemented at the provincial/territorial level. Some provinces/territories have implemented functions aiming to ensure key stakeholder involvement, while others are lagging behind.

Source: 2019 OECD Patient Safety Governance Survey

169. Another aspect of stakeholder involvement is to integrate clinical and corporate governance, ensuring that all stakeholders are held accountable to patients and the community for providing safe and care of high quality. Most responding countries report to have implemented this at various extents. The Australian Commission on Safety and Quality in Health Care developed the Model Clinical Framework, which is mandatory to all healthcare-providing organisations that need to meet the National Safety and Quality Standards in Healthcare (Commission on Safety and in Health Care, 2017[147]). In addition to defining clinical and corporate governance, roles and responsibilities for personnel within the healthcare-providing organisation, the National Model Clinical Framework includes five components:

 Governance, leadership and culture

 Patient safety and quality improvement systems

 Clinical performance and effectiveness

 Safe environment for care delivery

 Partnering with consumers

170. In the NHS in England, the Care and Quality Commission carries out inspections of hospitals where governance and leadership are one of the topics investigated. All providers of regulated activities are required by law to register with the Care Quality Commission (CQC) and undergo regular, intelligence-guided inspections. Providers are further required to display their overall CQC rating, based upon the five domains of ‘safe’, ‘effective’, ‘caring’, ‘responsive’ and ‘well-led’. In 2018, 68% of hospitals inspected by Care and Quality Commission were rated as Good or Outstanding and considered ‘well-led’. In Belgium and Ireland, respondents identify clinical governance as a point of future priority and improvement. At the federal level in Belgium, future focus is on more coordination and alignment of patient safety initiatives with regional authorities, while the strengthening of the integration of clinical and corporate governance is embedded in the new governance structures in Ireland.

171. Putting people at the centre is a key policy priority also when it comes to safety governance.

Involving patients in decision-making processes on quality and safety matters, either directly through official roles or indirectly in consultation processes, is practiced in many OECD countries. In Austria, patients are represented in official roles in the Advisory Board for Patient Safety, and requirements embedded in the Australian National Standards on Quality and Safety and Latvian legislation ensure patient representation in decision-making processes. In Germany, patient organisations are represented in the Federal Joint Committee.

172. In Ireland and Northern Ireland, patient involvement is currently varied, but improving. In Ireland, patient representation is satisfactory at the policy level, but more needs to be done at the national level for the public health system. Similarly, in Northern Ireland there is growing input by patients and their representatives in patient safety and quality initiatives. In Canada, practices vary at the level of territories and provinces, but nationally the Canadian Patient Safety Institute supports the inclusion of patients’

perspectives in decision-making processes, particularly with its support of Patients for Patient Safety Canada, a pan-Canadian volunteer network of patients and families affected by harm (Box 4.2). For example, in 2018 patient volunteers met with elected officials to provide input, raise awareness and demonstrate support for Health Canada guidelines for plain language labelling of non-prescription medications (Patients for Patient Safety, 2018[148]). An e-petition led by this same group was successful in requiring the Minister of Health to address the regulations in Canada’s House of Commons.

Box 4.2. Patients partner with governments and leaders to improve safety in Canada

Since 2006, Patients for Patient Safety Canada (PFPSC), the patient-led program of the Canadian Patient Safety Institute, a WHO Collaborating Centre on Patient Safety and Patient Engagement and the Canadian arm of the WHO Patients for Patient Safety Global Network have shaped safety policies, practices and programs at all system levels. From inception, PFPSC and the Global PFPS Network, have endorsed the 2005 London Declaration, that are founded on patients’ involvement and empowerment in developing, building and establishing safe practices (World Health Organization, 2005[149])

As patients and family members impacted by unsafe care, they volunteer to engage as partners in initiatives focused on preventing and responding to harm. Here are a few examples:

 Contributed to national regulations regarding the labelling of non-prescription medication (by contributing the patient/ family/ public perspective on the committee leading this work)

 Supported the implementation of national legislation related to mandatory reporting of adverse drug reactions and medical device incidents (created learning modules by patients for patients)

 Leading meetings with Members of Parliament and Senators to increase awareness about the issue of patient safety and the key role patients can play

 Hosted meetings between provincial/territorial patient partners and Ministers/ Ministries of Health to discuss how to improve safety together

 Establishing the Patient Alliance for Patient Safety where patient partners and organisations from across Canada to identify and implement actions that matter to patients

 Contributing and collaborating with the WHO and Patients for Patient Safety Global Network

 Developing key patient safety strategies and resources that informed practices, standards and policies including:

o Canadian Disclosure Guidelines o Canadian Incident Analysis Framework o Safety Competencies Framework o National Patient Safety Consortium

o Canadian Quality and Patient Safety Framework [CPSI-HSO]

o Patient Safety Culture Bundle for CEOs and Senior Leaders o #ConquerSilence public engagement campaign

The parallels between the TAPIC framework and what patients, families and citizens around the world are evident. Participation, or meaningful engagement, is what matters to patients. Transparency and accountability are the most important features so they can be safe and heal after a patient safety incident. Patients can help lead and build the culture and capacity for learning and knowledge-sharing to improve safety.

Source: Expert consultation, https://www.patientsafetyinstitute.ca/en/About/Programs/ppsc/Pages/default.aspx (accessed 20/01/2020)

Building safety governance models that enable continuous learning and