Patients’ rights to achieve more patient- centred healthcare systems

Willy Palm

EP Public hearing “Beating cancer – empowering patients and their caregivers“, 11 January 2021 Achieving Person-Centred Health Systems: Evidence, Strategies and Challenges

• Innovating and changing our models of care in the face of demographic changes and growing complexity of care

• WHO Alma Ata (1978) and Astana (2018) Declarations

• WHO Global Framework on Integrated, People-Centred Health Services (2016)

• Strengthening people-centred health systems in the WHO European Region: framework for action on integrated health services delivery

11/01/2021 | Title of the presentation 2 The European Framework for Action on Integrated Health Services Delivery

POPULATIONS SERVICES DELIVERY SYSTEM AND INDIVIDUALS PROCESSES ENABLERS

Identifying needs Designing care Rearranging accountability Aligning incentives Organizing providers & settings Tackling determinants Preparing a competent workforce

Promoting responsible use of medicines Empowering populations Managing services delivery Innovating health technologies

Engaging patients Improving performance Rolling out e-health

CHANGE MANAGEMENT

Strategizing with Implementing Enabling people at the centre transformations sustainable change International framework promoting the development of (general) patients’ rights

• WHO Europe Declaration on the Promotion of Patient Rights in Europe (Amsterdam, 1994)

• Council of Europe Convention on Human Rights and Biomedicine (Oviedo, 1997)

• European Charter of Patient Rights (Active Citizens’ Network 2002)

• Directive 24/2011 on the application of patients’ rights in cross-border health care

4 International framework promoting the development of (general) patients’ rights

WHO Council of Active Citizens EU Directive (1994) Europe Network cross-border care • WHO Europe Declaration on the (1997) ( 2002) (2011) Respect,Promotiondignity, of Patient RightsX in Europe X X integrity(Amsterdam, 1994) Non-discrimination X X • Council of Europe Convention on Human Privacy,Rights and Biomedicine (Oviedo,X 1997) X X X data protection • SelfEuropean-determination, Charter of PatientX Rights X X informed(Active consent Citizens’ Network 2002) •InformedDirective choice 24/2011 on the application of X X Accesspatients’ rights in cross-borderX health careX X X Quality X X X X Complaint and remedy X X X

Representation X X 5 Patients’ rights types

• Informed consent • Access to health care • Shared decision • Privacy and • Equal treatment making confidentiality • Quality and safety • Access to medical • Provider choice

record • Second opinion

orienteed

- Basic Social • Information • Information • Complain and • Complain and

• Complain and User redress redress redress

Life - Health - Dignity - Integrity - Self-determination – Equity - Transparency

11/01/2021 | Title of the presentation 6 National codification of patients’ rights

Horizontal Vertical “Sui generis” private Generic private Public sector Moral contracts contracts regulation charters

Finland (1992) Iceland (1997) Hungary (1997) Norway (1999) (2002) France (2002) (1994) Spain (2002) Romania (2003) Austria (2002) Estonia (2001) Poland (2009) Croatia (2004) United Kingdom (2009) Special Lithuania (2001) Latvia (2010) Greece (2005) Ireland (2012) Slovakia (2004) Czech Republic (2011) Slovenia (2008) Malta (2016) Germany (2013) Cyprus (2005) (2014) Portugal (2014) Denmark (2014) Sweden (2015)

Split Bulgaria -

11/01/2021 | Title of the presentation 7 Patients’ rights can help...

to grow awareness among patients, providers, Legal protection of patients is needed: managers and policy makers • vulnerable position, • patients to take control of their own • information asymmetry, treatment process • critical and complex situations, • providers to build trust and prevent • intimate context breaches and negligence (physical and moral integrity <=> trust!) • policy makers to steer health systems towards more person centredness Evidence of effectiveness?

Evaluation of the Dutch law on patient contracts (WGBO) indicated that patients' rights are effective to make health systems more persons centred.

11/01/2021 | Title of the presentation 8 Patients’ rights can help...

to grow awareness among patients, providers, managers and policy makers

• patients to take control of their own treatment process

• providers to build trust and prevent breaches and negligence

• policy makers to steer health systems towards more person centredness Evidence of effectiveness?

Evaluation of the Dutch law on patient contracts (WGBO) indicated that patients' rights are effective to make health systems more persons centred.

11/01/2021 | Title of the presentation 9 Thank you

WHO Regional Office for Europe WHO_Europe

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