Abstract
Background
Comparison of patient empowerment (PE) policies in European countries can provide evidence for improvement and reform across different health systems. It may also influence patient and public involvement, patient experience, preference, and adherence.
Objective
The objective of this study was to compare PE within national policies, systems, and structures in England and Greece for achieving integrated people-centered health services.
Methods
We performed a critical search and review of policy and legislation papers in English and Greek languages. This included 1) general health policy and systems papers, 2) PE, patient and/or public involvement or patients’ rights policy and legislation (1990–2015), and 3) comparative or discussion papers for England and/or Greece.
Results
A total of 102 papers on PE policies, systems, and structures were identified initially; 80 papers were included, in which 46 were policy, legislative, and discussion papers about England, 21 were policy, legislation, and discussion papers about Greece, and 13 were comparative or discussion papers including both the countries. In England, National Health Service policies emphasized patient-centered services, involvement, and empowerment, with recent focus on patients’ rights; while in Greece, they emphasized patients’ rights and quality of services, with recent mentions on empowerment. The health ombudsman is a very important organization across countries; however, it may be more powerful in Greece, because of the nonexistence of local mediating bodies. Micro-structures at trusts/hospitals are comparable, but legislation gives more power to the local structures in Greece.
Conclusion
PE policies and systems have been developed and expressed differently in these countries. However, PE similarities, comparable dimensions and mechanisms, were identified. For both the countries, comparative research and these findings could be beneficial in building connections and relationships, contributing to wider European and international developments on PE, involvement, and patients’ rights and further impact on patient preferences and adherence.
Introduction
Patient empowerment (PE) and its benefitsCitation1–Citation6 have been recognized internationally and in Europe; empowerment and engagement are goals of a global strategy on the achievement of integrated, people-centered health services between 2016 and 2026.Citation1 The Tallinn Charter recognized the importance of making health systems more responsive to patients’ needs, preferences, and expectations, committing WHO Member States in Europe to strengthening health systems.Citation4 The European Community White Paper (2008/2013) recognized citizens’ rights to be empowered in relation to health and health care, encompassing participation and influence on decision-making and competences needed for well-being.Citation5 The value of patient engagement and empowerment has been discussed in international forums, bringing forward proposals for strengthening national approaches to patient engagement and the advocacy capacity of patients.Citation7 Recently, WHO called for action on PE,Citation8 recognizing that patient, family, and community engagement are assets for building capacity and quality of care.Citation9
Diverse models of PE have been adopted internationally encompassing patients’ rights legislation (the Netherlands and Greece), introducing ombudsperson services (Austria, Finland, Hungary, Norway, Greece, and England) and increasing patient participation in care decision-making in England.Citation6,Citation10–Citation14 A developing consensus recognizes that PE is increasingly important to health governance, resulting in better system responsiveness to health consumer’s views, preferences, and self-management of health. Both England and Greece, which have not been compared in relation to empowerment before, are engaged in professional, political, and public discussions about PE, sharing common European health policies, standards, and targets.Citation1,Citation4 Both the countries have recognized the benefits of making health systems and are more patient-centered and responsive by adopting PE strategies.Citation15 It is acknowledged that they may have different health and welfare systems, PE national policies, systems, and development. This diversity can only be helpful in providing evidence for improving policies, organizational systems, management, professional practices, and patient experiences. Comparison of PE policies across two different health and welfare systems can illuminate similarities and differences, providing evidence for improvement and reform.Citation16–Citation18 It can also influence patient and public involvement in such policies and systems and impact on patient preferences and adherence.
The term “patient empowerment” is used as an inclusive term here, encompassing different levels, strategies, methods, and dimensions of involvement/participation, including patient and public involvement (PPI) and patients’ rights across countries. It refers to all mechanisms enabling patients to gain control and make choices in their health and health interventions,Citation19 the act or process of conferring authority, ability, or control.Citation20 More choice, more information, and more personalized care may be elements leading to better health literacy, informed decision-making, and real empowerment of patients to improve their health, health services, and systems. There are many concepts and definitions relating to PE (); these have been discussed elsewhere and we do not revisit them in this paper.Citation14,Citation19–Citation22 This paper aimed to compare PE within national policies, systems, and structures in England and Greece.
Table 1 Patient empowerment concepts and definitions
Methods
A wide-ranging critical policy and legislation review of papers in English and Greek language, using a structured approach was undertaken. Three categories of papers were reviewed: 1) general health policy and systems papers; 2) PE, PPI, or patients’ rights policy and legislation (1990–2015); and 3) comparative or discussion papers, for England and/or Greece. Inclusion criteria were the terms “patient empowerment,” “patient (and public) involvement,” “patients’ rights,” “patient engagement,” and “patient participation;” papers in English and Greek languages were included.
The review was conducted between April 2006 and September 2015. Combination of the following terms were searched: “patient empowerment,” “patient (and public) involvement,” “patients’ rights,” “patient engagement,” “patient participation,” “citizenship,” “health policy” (implementation of health policy), and “organizational systems” (strategies, systems, structures, or mechanisms). The following databases, search engines, and websites were used:
Department of Health in England, Ministry for Health and Social Solidarity (MHSS) in Greece, National Health Services (NHSs) in both countries and other governmental.
King’s Fund, Picker Institute Europe, World Health Organisation, European Community, Greek National Centre for Social Research (Eθνικό Κέντρο Κοινωνικών Eρευνών – EΚΚE), Greek National Documentation Centre (Eθνικό Κέντρο Tεκμηρίωσης).
Electronic databases: Medline, CINAHL, Greek medical databases, that is, Iatrotek.org, MedNet.gr.
All papers were screened by MB; summaries and any data considered dubious were discussed with the other co-authors. Only papers agreed by all the three authors were included. Exclusion criteria were that 1) they did not contribute to new knowledge in relation to the terms and aims and 2) they were not about Greece or England.
Results
Initially, 102 papers on PE policies, systems, and structures were identified. Of them, 80 papers were used and analyzed in the following sections: 46 were policy, legislative, and discussion papers about England; 21 were policy, legislation, and discussion papers about Greece; and 13 were comparative or discussion papers including both the countries. A short introduction about the general organization of the English and Greek NHSs is first presented, followed by the PE policies, systems, and structures in the two NHSs.
The NHSs
England
Established in 1948, the NHS centralized system, funded through national taxation, delivers services through public providers, devolving purchasing responsibilities to local bodies, that is, primary care trusts, clinical commissioning groups (CCGs).Citation23,Citation24 Health care spending is 9.1 of GDP (2013), medium compared to other countries and arguably equitable.Citation11,Citation25–Citation27 Public health funding is high; private out-of-pocket funding is moderate.Citation26 All citizens and residents are insured, but have limited provider choice or access to specialists. Only 10% have private health insurance, which gives higher quality care access and reduced waiting times.Citation11,Citation28 Initiatives focused on improving efficiency, responsiveness, and equity of the system, that is, foundation hospitals (2004) have greater management, financial responsibilities, and freedoms. Such measures aimed to reduce waiting lists, improve quality of provision, increase funding and staff numbers, encourage innovation, and extend patient choice.Citation23 Despite these, it has been argued that patients are prevented from taking control of their health care and frontline professionals from revolutionizing services for patients’ benefit.Citation29 Although UK health policy has focused on controlling spending, the system faces serious financial strains, waiting lists, and explicit rationing for some types of careCitation11 ().
Table 2 Main characteristics of the English and Greek National Health Services
Greece
The NHS inception in 1983 guaranteed free health care for all residents; introduced state responsibility for health care services provision, equal access, decentralization of planning, primary care development, exclusive employment of health care staff, and unification of main insurance funds.Citation30 Health care spending is 9.8 of GDP (2013), medium compared to other countries.Citation27 The system is characterized by a public–private mix for funding and delivery, high out-of-pocket payments, and little regulation of access to health care providers.Citation11,Citation26,Citation31 Types of coverage available are the NHS, health insurance funds (occupation-based), and private health insurance.Citation23 Most Greeks (95%–97%) have private insurance for hospital care. The health insurance system is employer-based; employers enroll their employees in a “social” payer system, the ministry controls employee contribution rates, insurance benefits and the doctors’ social insurance funds.Citation11 NHS services are provided through a public hospital network, delivering to inpatients and outpatients. Advances in accessing health care services include development of rural surgeries, primary health centers, and public and regional teaching hospitals. There are many challenges, that is, integrating primary care services, high level of pharmaceutical expenditure and modernizing NHS management.Citation23 Public primary health care services are insufficiently developed, with the exception of some rural areas. Long waiting times for NHS care are partly due to provider shortages caused by low reimbursement rates.Citation11,Citation32,Citation33 The system is characterized by over-centralization, fragmentation of coverage (with many insurance funds), regressive financing extensive user charges and informal payments, inefficient resource allocation, perverse incentives for providers, and heavy reliance on unnecessarily expensive inputsCitation26,Citation32,Citation35 ().
PE policies
England
NHS policies emphasized the need for patient/user input to service planning, development, delivery at all levels, monitoring, evaluation, audit, and their outcomes in the 1990s.Citation35–Citation39 The Patients Charter presented the first “aspirational” vision for hospital patients; the standards were not legal rights, but “major and specific standards” encompassing respect for privacy, dignity, religious and cultural beliefs, continuity of care, and quality of nursing.Citation35 Other “rights” addressed waiting times, information (about cancellations), and timely responsiveness to complaints.Citation35
The NHS Plan and “Shifting the Balance of Power” were the first patient-centered strategies in the 2000s encapsulating a vision where patients had more say about health care provision, marking the need for organizational and cultural change.Citation40,Citation41 Subsequently, significant policies, legislations, and frameworks aimed to empower patients and the public.Citation24,Citation43–Citation53 Importantly, patient and public involvement in planning, development, and making decisions affecting services operation became a duty enacted in the Health and Social Care Acts in 2001 and 2003.Citation43,Citation54 A subsequent Act (2006) placed a legal duty on health organizations to involve users/representatives through consultation, providing them with information about planning services, proposals for change, and decisions affecting service operationCitation55 ().
Table 3 A summary of patient empowerment policies and legislation in England and Greece (1990–2015)
The Next Stage Review (2008) placed quality at the heart of care, concentrating on patient-reported outcome measures, detailing elements of PE encompassing more information, choice, partnership working, and quality of care.Citation56 Other guides and programs supported community, patient, and public engagement in health care.Citation57,Citation58 The NHS Constitution brought together and explained patient’s rights and public, patient, and staff responsibilities, thereby empowering all, for the first time in 2009.Citation59 The Health Act 2009 placed a duty on all NHS providers to have regard to the Constitution, proposing measures to improve care quality, service performance, and public health.Citation60 In 2013, new rights for both patients and staff were added, and patient involvement was updated in the ConstitutionCitation61 ().
Table 4 A summary of patients’ rights and entitlements in England and Greece
In the 2010s, the NHS White Paper Equity and Excellence envisioned “an NHS genuinely centered on patients and carers” encompassing an information revolution, greater choice and control through shared decision-making, increased patient control over records, and equity for everyone.Citation62 The NHS 2010–2015 Plan together with more recent operating frameworks are even more empowering, emphasizing driving change through patient influence and integrating information around patients.Citation63,Citation64 A key tenet is “people must be given rights and entitlements, with greater control over their own health and care;” explicitly referring to rights, full choice of primary and secondary care services, more personal health responsibility, all increasing patient satisfaction. A significant proportion of provider income is linked to patient experience and satisfaction by linking payment to patient satisfaction, giving providers incentives to understand and improve.Citation63 With the Health and Social Care Act (2012), NHS duties to offer more patient choice were enacted in law, including individual and public participation.Citation65 The Health and Care System (2013) gave local communities more say in care through health and well-being boards, envisioning that “everyone has greater control of their health and their wellbeing, supported to live longer, healthier lives by high quality health and care services that are compassionate, inclusive and constantly-improving.”Citation66 The NHS 5-year Forward View emphasized a new relationship with patients and communities, that is, empowerment with access to electronic medical records.Citation67 Subsequently, the NHS England Business Plan (2015–2016) commits to innovative engagement with diverse communities and citizens, placing citizens at the center of design for new services and care modelsCitation68 ().
Greece
Health care reforms in the 1990s and 2000s utilized legislation addressing patients’ rights and service quality.Citation68 The Conservatives’ Reform in 1992 introduced patients’ rights based on the European Charter; the most significant being rights of information, complaint, appropriate services, respect, and choice/refusal of treatmentCitation69 (). The Health care Reform in 1997 also emphasized patients’ rights and effective hospital management of utilizing user’s views in decision-making, through establishment of statutory bodies for rights’ protection at national and hospital levelCitation70 ().
The following Health care Reform (2001) focused on Greek citizens and their interests, reinforcing the statutory bodies established in 1997 (below).Citation71 This reform aimed to a patient-centered NHS, incorporating basic measures of universal coverage and equity in service delivery, efficiency, and quality.Citation34 Reforms were to be achieved through the establishment of National Health Institute’s Regional Health Authorities and improved public hospitals with appointment of professional managers. The later Health care Reform (2005) addressed living conditions in the wider public health context; health priorities emphasizing equal access and need satisfaction. Official endorsement of collaboration of hospitals and nongovernmental health organizations was given.Citation72 Patients’ rights continued to be reinforced in 2008 with the MHSS’ mission emphasizing equality, quality of services, and protection of individual and social rights.Citation73
Despite subsequent lack of reforms, recent National Action Plans were patient empowering. The National Action Plan for Public Health (2008–2012) explicitly mentions “information” and “empowerment of citizens.”Citation74 The National Action Plan for Human Rights (2013) explains rights to health and refers to “empowerment” as mirroring positive health, emphasizing social and individual capacities.Citation75
PE systems and structures
England
National organizations, systems, and initiatives
National organizations’ monitoring, regulating, and inspecting health care services, that is, the Care Quality Commission (2009), replacing the Health Care (2004) and the Mental Health Act Commissions (1983), have been active since the 1980s.Citation76,Citation77 National organizations empowering, protecting, and strengthening patients and public have also been active; of these, the Health Service Ombudsman, established in 1973, considers complaints that the NHS has not acted properly, fairly, or provided a poor service.Citation78 This statutorily independent investigator has powers to summon witnesses and access records, breaches of which can be treated as akin to contempt of court.Citation14,Citation78 Other bodies now abolished, that is, the Commission for Patient and Public Involvement in Health (CPPIH) (2004–2007) and the National Resource Centre for Patient and Public Involvement (2006–2009), aimed to promote PPI value, and the latter to create a single point for information and advice ().Citation79,Citation80
Table 5 A summary of NHS patient empowerment systems and mechanisms in England and Greece (1973–2015)
Changes implemented at the macro level included several choice initiatives, that is, the “Choose and Book” service, enabling patients requiring elective care to see information about hospitals and book first appointments through general practice surgeries or a booking service.Citation81 Patient feedback was facilitated via annual hospital patient surveys, undertaken by NHS acute hospital trusts between 1997 and 2013. Over time, surveys expanded to include topics of public and/or political interest, that is, waiting times, single sex wards, and cleanliness. Wider annual national surveys were undertaken for inpatients (2002–2007) and outpatients (2003, 2004/2005) together with surveys on specific services or conditions.Citation82 In 2013, the Friends and Family Test was introduced, asking service users if they would introduce a service to friends and families.Citation83 A new NHS Citizen Program was co-designed (2013), enabling NHS England to directly engage citizens in a publicly accountable and transparent forum, providing a framework for citizens to engage commissioners and providers of services, offering views, insights, and solutions, holding them to account. Since the program began, NHS England has facilitated workshops and regional events, with face to face and digital participation.Citation83
Local and trust/hospital systems and structures
Systems empowering patients and the public at the micro local/hospital level are also prevalent (). Community Health Councils (1974), the first formal structures to represent public interests locally, were abolished in 2003.Citation84 Their role was taken over by other services:
Overview and Scrutiny Committees (2000), a statutory service, established to look at the local NHS work with local authority councillors having the powers to review and scrutinize the planning, provision, and operation of health services and to make improvement in recommendations.Citation85
Independent Complaints Advocacy Service (ICAS) (2003), another statutory service, launched aiming to provide independent support to patients/carers wishing to complain about their NHS treatment and care locally.Citation45
Patient Advice and Liaison Services (PALS) (2002) established aiming to provide accessible support, advice, and information to patient/carers in NHS settings.Citation40
Patient and Public Involvement Forums (PPIFs) (2003), independent bodies made up of volunteers, set up to monitor the NHS quality from the patient perspective. PPIFs were supported by the CPPIH.Citation40
Recently, NHS Citizen Development Sites (2014) provide opportunities for people in local areas to make links with the NHS Citizen Program, bringing public voice to the board of NHS England.Citation86
Greece
National organizations, systems, and initiatives
The Health and Welfare Inspectorate, established to provide good quality services to citizens, has been active since 2001.Citation87 It has a repressive and preventative role by conducting checks and audits and suggesting imposition of punishments or staff disciplinary control, simultaneously checking relevant procedures and making propositions. Although under the jurisdiction of the MHSS, it has full inspection independence collaborating with the Patients’ Rights Protection and Control Committee (PRPCC) (below).Citation88 Other national bodies promote, protect, and strengthen patients’ rights. The Greek ombudsman for Health and Welfare, established in 2004Citation89 as part of the Greek Ombudsman duties,Citation70 is the most prevalent. It suggests measures to the ministry for restoration and protection of patients’ rights; elimination of bad management, improvements in health and social welfare services, and relationships with citizensCitation89 ().
National statutory bodies to protect patients’ rights were introduced in 1997.Citation70 The Patients’ Rights Protection Independent Service (PRPIS) was established to monitor patients’ rights protection, investigate formal written complaints, and report progress to the Ministry’s Secretary General. It requires annual hospital reports on their Office for Communication with Citizen (OCC) activities encompassing annual complaints, their resolution, time spent on complaint investigations, and decisions taken. PRPIS has the right to suggest solutions, request further investigations, and make recommendations. Although part of the MHSS, it has independent status.Citation70 PRPIS proposed establishment of reception desks (welcome points) in all public hospitals, staffed by OCCs, to make available information leaflets on patients’ rights and PRPIS functions.Citation71
The PRPCC was also established (1997) to ensure hospital compliance with patients’ rights regulation and conduct in-depth, national investigations of complaints.Citation70 It comprises a State Legal Council representative and representatives of 13 professional Greek institutions from a spectrum of professions. Once a decision regarding a patient complaint is made, the Ministry’s Secretary General is notified and ensures that appropriate actions are taken by hospital management. However, it has been under-functioning since 2005.
In 1999, two new bodies answering directly to the ministry were launched within the PRPIS: an “Office for the Protection of Individuals with Psychological Disorders” to protect the rights of these individuals and a “Special Committee for the Rights of Individuals with Psychological Disorders’ to ensure compliance with the Office.”Citation89 A national inpatient survey (2002) was also introduced following the 2001 reforms, aiming to evaluate public hospitals by measuring users’ satisfaction;Citation90 plans for ongoing annual surveys, however, were not materialized.
Hospital systems and structures
Statutory bodies were also established within all hospitals in 1997.Citation70 OCCs acted as information points for patients/service users, registering complaints, operating under direct supervision of hospital chairmen/chief executives.Citation71 They became “Offices of Patients’ Reception,” and their role changed slightly to welcoming and directing patients, accompanying them to the appropriate hospital services in 2001; thus, reception desks (welcome points) were created in all public hospitals.Citation71 In 2010, MHSS’ circulars and targets included commencement of quality monitoring processes and reinforcement of the OCCs.Citation92 A circular reminded all hospitals that “an Office of Patients’ Reception – Office of Communication with Citizen, staffed suitably, should exist in visible location near the entrance in every infirmary.”Citation93 Their aim was the reception, information, update, direction, and support of all patients and those accompanying them, about complaint procedures and information on hospital rules. Thus, a double more inclusive role with extensive responsibilities was allocated to the offices. The same year they were renamed to “Offices for Citizen’s Support,” responsible for the patient welcoming, information, movement control, administrative support, management and dispatch of concerns, complaints, and overall protection of patients’ rights.Citation94
Citizens Rights’ Three-member Protection Committees (CRPCs), established in 1997, investigated complaints and protected and promoted patients’ rights in collaboration with the OCCs for which it had a monitoring function. Its membership should include a user representative; the Board of Directors should ensure that all hospital patients were aware of their rights. CRPCs membership comprised a hospital manager/chair, the directors of medical and nursing services (user representative details not stated). In addition, other structures were introduced in 2010 reinforcing patient organizations and volunteering, and also evaluation, monitoring, and reporting, that is, Consultation Councils for Transparency and Monitoring in Health and Social Welfare, the “Registry for Volunteering in Health and Social Care.”Citation94
Cross-national analysis and discussion
This is the first paper to compare national policies, systems, and structures for PE in England and Greece. Notwithstanding its limitations, that is, based on a critical policy and legislation review in English and Greek language, and not taking into account patients, public, and other stakeholders’ perspectives and preferences, it has highlighted the important differences and similarities.
The NHSs and PE policies
English and Greek NHSs, having been developed differently, have diverse characteristics and face substantive challenges () with significant implications for PE. Both NHSs, committed to equity in service access, face serious financial strain, patients experience disempowering effects of waiting lists (both), rationing (England), extensive user charges, and informal payments (Greece). Despite these challenges, both the countries have recognized the benefits of making health systems more patient-centered and responsive by adopting PE strategies and have invested in infrastructures to support policy implementation despite financial constraints.Citation15
In England, policies and legislation have focused on patient-centered quality services, explicit PPI, engagement, empowerment, and more recently on patients’ rights. In Greece, the policy and legislative focus has been on patients’ rights, statutory bodies to protect rights and quality of services, with only a very recent focus on “empowerment” (). Patients’ rights encompass human, social, and individual rights, addressing quality and accessibility of health care as well as basic consumer rights, balancing the partnership between providers and individual receivers of care.Citation95 Common dimensions of PPI and patients’ rights are information and complaining. Patients’ “voice” and “choice” are other common dimensions, requisite for PPI and underpinning values for all rights.Citation14,Citation21,Citation96 Although these may be comparable elements, their focus, emphasis, and implementation may differ, that is, information, complaining, “choice,” and “voice” may have different meanings and take different forms in the two countries. The timing and the development of patients’ rights also differ greatly; since the introduction of patients’ rights in 1992, there have not been great developments in Greek legislation, perhaps with the exception of the most recent introduction of the term “empowerment,” while patients’ rights have been developed and expanded greatly since the NHS Constitution in 2009 in England (). However, there may be recent convergence of policies; patients’ rights were introduced as important PE mechanisms in England in 2009 and have been strengthened since then; and PE has been emphasized in Greek policies more recently.
Challenges existed in implementing PE policies and reforms in both the countries slowing down the pace of change. In England, reports noted barriers to patients taking control of their health and health professionals revolutionizing services.Citation11,Citation29 In Greece, a need exists to modernize organizational management, tackle sources of over centralization/fragmentation of services and resolve factors which led to a hiatus in reforms post 2008.Citation31,Citation25,Citation29 The recent economic crisis has severely affected the implementation of policies in health and health care in Greece, that is, health care budgets have been slashed; in England, recent health budget cuts are also evident.Citation97,Citation98 However, in both the countries, recent developments suggest positive attempts to move policy implementation forward, that is, the National Action Plan for Human RightsCitation75 in Greece explains and emphasizes on rights to health, and the recent NHS England Business Plan influences empowerment and engagement of citizens in decisions about future service design.Citation66
These developments may not be suprising, as policy makers are expected to implement human-centered approaches, safeguarding dignity and rights to face financial cuts and crisis.Citation99,Citation100
PE systems and structures
Diverse systems and structures have been implemented in both the countries to support PE, patient and public involvement, and patients’ rights ( and ). At a macro-level, the independent health ombudsman role is of vital importance in both the countries. However, in Greece because of the nonexistence of local independent organizations or mediating bodies, its role assumes greater importance. National organizations/committees have been set up to protect rights in both the countries, that is, PRPIS and PRPCC in Greece and the NHS citizens in England.
At trust/hospital micro-level, committee structures with patient representation have also been implemented in both the countries to support PE. Although PALSs and OCCs’ functions are comparable, PALS have been stable over the years, but legislation in Greece continues to devolve power to OCCs, although one could argue that their name change and slightly diminished role may have created confusion among staff and patients, limiting their functions (). Furthermore, policy recommendations and implementation guidance for local organizations have been weak in England and required improvement; in contrast, in Greece some guidance and monitoring systems for OCCs is in place. Other PE mechanisms at the local level, that is, the ICAS in England and the Citizen’s Rights Protection Committees (CRPCs) in Greece are acknowledged as areas of difference between the two systems. Important systemic and cultural connotations for PE, essential in dealing with the deficiencies of each system and alternative coping mechanisms are highlighted elsewhere, that is, the role of the voluntary sector in both the countries and the family’s role in Greece.Citation101,Citation102
At both macro- and micro-level, monitoring, audit and evaluation investigating PE issues from both patient and professional perspectives is helpful in providing evidence for improving policies, organizational systems, management, professional practices, and the patient experience. In both the countries, patient surveys () have been utilized for these purposes, most frequently and consistently in England; in Greece, greater use of survey research or use of alternative feedback forums (currently lacking) would give greater weight to policy development and reform.
Conclusion
The NHSs policies and legislations linked to PE were very different in England and Greece; in turn, PE systems, structures, and mechanisms reflect these influences in England and Greece. Different language and terminology have been used, that is, “patient (and public) involvement” and “engagement” in England, “patients’ rights” and “responsibilities” in Greece. However, PE similarities, comparable dimensions, and mechanisms were also identified.
Future studies could draw on these findings and explore how the implementation of PE policies and legislation may influence PE within organizations, that is, hospitals, in both individual and organizational levels. Further research in implementation of national systems, structures, and mechanisms, investigating PE from both patient and professional perspectives could provide evidence for improving policies, organizational systems, management, professional practices, and patient experience, preference, and adherence. For both the countries, comparative research could be beneficial in building connections and relationships, help to bridge the gap between research and policy implementation and contribute to wider European and international developments on PE, involvement and patients’ rights. Furthermore, the importance of patient and public involvement in such developments and how these factors impact on patient preference and adherence should be explored and highlighted.
Acknowledgments
We would like to thank all those who helped us with the literature review. This work was part of a PhD study, funded privately and supported by London South Bank University.
Disclosure
The authors report no conflicts of interest in this work.
References
- World Health OrganisationPlacing People and Communities at the Centre of Health Services. WHO Global Strategy on Integrated People-Centred Health Services 2016–2026GenevaWHO2015
- World Health OrganisationOttawa Charter for Health Promotion. The Move towards a New Public Health. Ottawa 17–21 November 1986OttawaWHO1986
- World Health OrganisationThe Jakarta Declaration on Leading Health Promotion into the 21st Century. Fourth International Conference on Health PromotionJakartaWHO1997 Available from: http://www.who.int/healthpromotion/conferences/previous/jakarta/declaration/en/Accessed August 8, 2013
- World Health OrganisationThe Tallinn Charter: Health Systems for Health and WealthCopenhagenWHO Regional Office for Europe2008 Available from: www.euro.who.int/document/e91438.pdfAccessed August 8, 2013
- Commission of the European CommunitiesWhite Paper – Together for Health: a Strategic Approach for the EU 2008–2013. COM (2007) 630 finalBrusselsCOM2007
- All Party Parliamentary Groups on Global HealthPatient Empowerment: for Better Quality, More Sustainable Health Services Globally. A Report by the All Party Parliamentary Groups on Global Health; HIV/AIDS; Population, Development and Reproduction Health; Global Tuberculosis; and Patient and Public Involvement in Health and Social CareLondonAll Party Parliamentary Groups on Global Health2014
- International Alliance of Patients Organisations4th Global Patients Congress: Exploring the Value of Patient Engagement in Strengthening Healthcare GloballyLondonIAPO2010
- World Health OrganisationPatients Have a Voice Too!GenevaWHO2013 Available from: http://www.who,int/gpsc/5may/5may2013_patient-participation/en/Accessed August 15, 2014
- World Health OrganisationBuilding Capability beyond the Health Sector to Deliver Universal Health Coverage. Background report to inform the Global Strategy for Human Resources for HealthGenevaWHO2014
- ListerGPublic engagement in health policy: international lessonsJ Man Mark200712112
- TannerMDThe grass is not always greener: a look at National Healthcare Systems around the worldCato Inst Policy Anal2008613148
- World Health OrganisationNinth Futures Forum on Health Systems Governance and Public ParticipationCopenhagenWHO2006 Available from: www.euro.who.int/document/e89766.pdfAccessed September 17, 2012
- World Health OrganisationThe European Health Report 2009: Health and Health SystemsCopenhagenWHO Regional Office for Europe2009
- MackenneySFallbergLProtecting Patients’ Rights? A Comparative Study of the Ombudsman in HealthcareOxonRadcliffe Medical Press Ltd2004
- BusseRAllinSMaierCResponding to citizens’ expectations? The role of health services in responsiveness and satisfactionFiguerasJMcKeeMLessofSDuranAMenabdeNHealth Systems, Health and Wealth: Assessing the Case for Investing in Health SystemsCopenhagenWHO Regional Office for Europe20088392 Available from: http://www.euro.who.int/document/hsm.3_hsco8_eBD3.pdfAccessed September 17, 2012
- OvretveitJComparative and Cross-cultural Health Research: a Practical GuideOxonRadcliffe Medical Press Ltd1998
- Commission of the European CommunitiesCommunication from the Commission to the Council, the European Parliament, the Economic and Social Committee and the Committee of the Regions on the Health Strategy of the European Community. COM (2000) 285 final, 2000/0119 (COD)BrusselsCOM2000
- Commission of the European CommunitiesCouncil conclusions on common values and principles in European Union Health Systems (2006/C146/01)Official Journal of the European Union2006C146/1
- O’CathainAGoodeJLuffDStranglemanTHanlonGGreatbatchDDoes NHS Direct empower patients?Soc Sci Med2005611761177115894416
- FarrelCGilbertHHealthcare Partnerships: Debates and Strategies for Increasing Patient Involvement in Healthcare and Health ServicesLondonKing’s Fund1996
- KelsonMUser Involvement: A Guide to Developing Effective User Involvement Strategies in the NHSLondonCollege of Health1997
- BryneDEnabling Good Health for All: A Reflection Process for a New EU Health StrategyLuxembourgEuropean Commission2004
- World Health OrganisationSnapshot of health systemsGrosee-TebbeSFiguerasJCopenhagenWHO, European Observatory on Health Systems and Policies2005
- EnglandNHSPatient-Led Decision-Making, Empowerment and Innovation. NHS Values Summit, 4th November 2013LeedsNHS England2013 Available from: https://www.england.nhs.uk/wp-content/uploads/2013/11/dcsn-mkng-ptnt-com-empow.pdfAccessed August 15, 2015
- SapirAGlobalisation and the Reform of European Social Models. Bruegel Policy ContributionBackground document for the presentation of ECOFIN Informal MeetingManchesterSeptember 2005BruegelBruegel Policy2005 Available from: www.bruegel.orgAccessed December 12, 2012
- WendtCMapping European healthcare systems: a comparative analysis of financing, service provision and access to healthcareJ Eur Soc Pol200919432
- World BankWorld Health Organisation Global Health Expenditure2013 Available from: http://data.worldbank.org/indicator/SH.XPD.TOTL.ZS/Accessed December 12, 2012
- Healthcare EconomistHealthcare Around the World: Great Britain. Healthcare Economist2008 Available from: http://healthcare-economist.com/2008/04/23/health-care-around-the-world-great-britain/Accessed December 12, 2012
- CIVITASGubbJWhy the NHS is the sick man of EuropeCIVITAS Rev200851111
- Greek Parliament1397/1983 Law Available from: http://www.et.gr/index.php?option=com_wrapper&view=wrapper&Itemid=108&lang=enAccessed January 25, 2013
- EconomouCGreece: health system reviewHealth Systems Trans20101271180
- MichailidouSUser Involvement in Greek Public Hospitals: Opportunities and Barriers [unpublished thesis].BirminghamThe University of Birmingham2005
- Healthcare EconomistHealthcare around the world: GreeceHealthcare Economist2008 Available from: http://healthcare-economist.com/2008/04/22/health-care-around-the-world-greece/Accessed January 25, 2013
- DavakiKMossialosEPlus ca Change: Health Sector Reforms in GreeceJ Health Pol Pol Law2005301–2143168
- Department of HealthThe Patient’s Charter: Raising the StandardLondonDoH1991
- NHS Management ExecutiveLocal Voices: The Views of Local People in Purchasing for HealthLeedsNHSME1992
- Department of HealthThe NHS: A Service with AmbitionsLondonNational Health Service Office1996
- NHS ExecutivePatient Partnership: Building a Collaborative StrategyLeedsNHSE1996
- NHS ExecutivePromoting Clinical Effectiveness: A Framework for Action in and through the NHSLeedsNHSE1996
- Her Majesty’s Stationary OfficeThe NHS Plan: A Plan for Investment, a Plan for ReformLondonHMSO2000
- Department of HealthShifting the Balance of Power within the NHS – Securing DeliveryLondonDoH2001
- Department of HealthShifting the Balance of Power: The Next StepsLondonDoH2002
- Department of HealthStrengthening Accountability: Involving Patients and the Public, Practice Guidance, Section 11 of the Health and Social Care Act 2001LondonDoH2003
- Department of HealthBuilding on the Best: Choice, Responsiveness and Equity in the NHSLeedsDoH2003
- Department of HealthIndependent Complaints Advocacy Service2003 Available from: http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/Managingyourorganisation/Legalandcontractual/Complaintspolicy/NHScomplaintsprocedure/DH_4087428Accessed January 25, 2013
- Department of HealthCreating a Patient-Led NHS: Delivering the NHS Improvement PlanLondonDoH2004
- Department of HealthBetter Information, Better Choices, Better Health: Putting Information at the Centre of HealthLeedsDoH2004
- Department of Health‘Now I Feel Tall’ – What a Patient-led NHS Feels LikeLondonDoH2005
- Department of HealthA Stronger Local VoiceLondonDoH2006
- Department of HealthOur Health, Our Care, Our Say: A New Direction for Community ServicesLondonDoH2006 Available from: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4127602Accessed January 25, 2013
- Department of HealthWorld Class CommissioningLondonDoH2007
- Department of HealthThe NHS in England: The Operating Framework for 2008/09LondonDoH2007
- Department of HealthThe NHS in England: The Operating Framework for 2009/10LondonDoH2008
- Office of Public Sector InformationHealth and Social Care (Community Health and Standards) Act 2003LondonOPSI2003
- Office of Public Sector InformationNational Health Service Act 2006LondonOPSI2006 Available from: http://www.legislation.gov.uk/ukpga/2006/41/contentsAccessed January 25, 2013
- Department of HealthHigh Quality Care for All: NHS Next Stage Review Final ReportLondonDoH2008
- National Institute for Health and Clinical ExcellenceCommunity Engagement to Improve HealthNICE Public Health Guidance 9London: NICE2008
- Department of HealthHelping the NHS Put Patients at the Heart of Care: the Patient and the Public Engagement Support Programme 2009–10LondonDoH, Patient and Public Engagement2009
- Department of HealthThe NHS Constitution for EnglandLondonDoH2009
- Office of Public Sector InformationHealth Act 2009LondonOPSI2009 Available from: http://www.opsi.gov.uk/acts/acts2009/ukpga_20090021_en_1Accessed January 25, 2013
- Department of HealthThe Handbook to the NHS ConstitutionLondonNHS Constitution Team, DoH2013 Available from: https://www.england.nhs.uk/2013/03/nhs-constitution/Accessed August 12, 2015
- Department of HealthEquity and Excellence: Liberating the NHSLondonDoH2010
- The Stationary OfficeNHS 2010–2015: From Good to Great. Preventative, People-Centred, ProductiveLondonTSO2009
- Department of HealthThe NHS in England: The Operating Framework for the NHS in England 2010/11LondonDoH2010
- Office of Public Sector InformationHealth Act 2012LondonOPSI2012
- NHS EnglandThe NHS England Business Plan (2015–16)LeedsNHS England2015
- NHS EnglandThe NHS 5-Year Forward PlanLondonNHS England2014 Available from: http://www.england.nhs.uk/wp-content/uploads/2014/10/5yfv-web.pdfAccessed August 25, 2015
- Abel-SmithBCalltorpJDixonMReport on the Greek Health ServicesAthens, GreeceMinistry of Health and Welfare1994
- Greek Parliament2071/1992 Law Available from: http://www.et.gr/index.php?option=com_wrapper&view=wrapper&Itemid=108&lang=enAccessed January 25, 2015
- Greek Parliament2519/1997 Law Available from: http://www.et.gr/index.php?option=com_wrapper&view=wrapper&Itemid=108&lang=enAccessed January 25, 2015
- Greek Parliament2889/2001 Law Available from: http://www.et.gr/index.php?option=com_wrapper&view=wrapper&Itemid=108&lang=enAccessed January 25, 2015
- Greek Parliament3370/Φ81A/11.07.05 Law Available from: http://www.et.gr/index.php?option=com_wrapper&view=wrapper&Itemid=108&lang=enAccessed January 25, 2015
- Ministry of Health and Social WelfareThe Ministry’s MissionAthensMHSS2008 Available from: http://www.yyka.gov.gr/ministryAccessed January 25, 2015
- Ministry of Health and Social WelfareNational Action Plan for Public Health, 2008–2012AthensMHSS2007 [Υπουργείο Υγείας και Κοινωνικής Αλληλεγγύης. Εθνικό Σχέδιο Δράσης για την Δημόσια Υγεία, 2008–2012. Αθήνα: Υπουργείο Υγείας και Κοινωνικής Αλληλεγγύης; 2007.] Available from: http://www.ygeianet.gov.gr/files.aspx?code=nationalactionplansAccessed January 25, 2015
- Ministry of JusticeNational Action Plan for Human RightsAthensNational Press2013 Υπουργείο Δικαιοσύνης. Aνθρώπινα Δικαιώματα – Eθνικό Σχέδιο Δράσης. Aθήνα: Eθνικό Tυπογραφείο; 2013
- Healthcare CommissionHelp to Improve your Health Services (Consultation Document)LondonHealthcare Commission2004
- Care Quality Commission2009Care Quality Commission Available from: http://www.cqc.org.uk/about-usAccessed August 12, 2015
- The Stationery OfficeThe Parliamentary Ombudsman: Withstanding the Test of Time. 4th Report, Session 2006–2007LondonTSO2007
- Department of HealthInvolvement is power: Rosie Winterton announces details of national resource centre for patient and public involvementLondonDoH2006 Available from: http://webarchive.nationalarchives.gov.uk/+/http://www.dh.gov.uk/en/Publicationsandstatistics/Pressreleases/DH_4135353Accessed January 25, 2012
- National Centre for InvolvementPatient Involvement, Empowerment and Information. Keynote presentation from Executive Director, The New National Centre for InvolvementPatient Involvement, Empowerment and Information 2006, 4th Annual ConferenceLondonNCI2006
- Department of HealthChoose & Book: Patient’s Choice of Hospital and Booked AppointmentLondonDoH2004 Available from: http://webarchive.nationalarchives.gov.uk/20121107181829/http://www.chooseandbook.nhs.uk/documents/implementation/choose_and_book_policy_framework.pdfAccessed January 25, 2012
- GoodrichJCornwellJSeeing the Person in the Patient: the Point of Care Review PaperLondonThe King’s Fund2009
- NHS EnglandAnnual Review 2013–2014 – A Year of Putting Patients FirstRedditchNHS England2014
- Socialist Health AssociationCommunity Health Councils – The Old rulesLondonSocialist Health Association1998 Available from: http://www.sochealth.co.uk/national-health-service/health-law/community-health-councils-the-old-rules/Accessed January 25, 2012
- The Stationary OfficeThe Local Authority (Overview and Scrutiny Committees Health Scrutiny Functions) Regulations 2002LondonTSO2002 Available from: http://www.opsi.gov.uk/si/si2002/20023048.htmAccessed January 25, 2012
- NHS CitizenWhat Is NHS Citizen & What Are the Development SitesLondonNHS Citizen2015 Available from: https://nhscitizen.public-i.tv/core/portal/homeAccessed August 12, 2015
- Greek Parliament2920/Φ131A/2001 Law. Health and Welfare Inspectorate and Other Regulations Available from: http://www.et.gr/index.php?option=com_wrapper&view=wrapper&Itemid=108&lang=enAccessed January 25, 2012
- Health and Welfare InspectorateAnnual ReportAthensHealth and Welfare Inspectorate2008 Σώμα Eπιθεωρητών Υγείας και Πρόνοιας. Eτήσια‘Eκθεση. Aθήνα: Σ.E.Υ.Υ.Π.; 2008
- Greek Parliament3293/Φ231A/26.11.04 Law. Greek Ombudsman for Health and Welfare Available from: http://www.et.gr/index.php?option=com_wrapper&view=wrapper&Itemid=108&lang=enAccessed January 25, 2012
- Greek Parliament2716/1999 Law Available from: http://www.et.gr/index.php?option=com_wrapper&view=wrapper&Itemid=108&lang=enAccessed January 25, 2012
- NiakasDMeasurement of Patient Satisfaction in ESY HospitalsNiakasDIssues about Health Services ManagementAthensMediforce20035165 Nιάκας, Δ. Mέτρηση της ικανοποίησης των ασθενών στα Nοσοκομεία του EΣΥ. Στο Nιάκας, Δ. (επιμ) Θέματα Διοίκησης και Διαχείρησης Υπηρεσιών Υγείας. Athens: Mediforce; 2003; 51–65
- Ministry of Health and Social WelfareAnabathmisiAthensMHSS2010 Available from: http://www.moh.gov.gr/articles/newspaper/nomothesia-kanonismoi/194-isxyoysa-nomothesiaAccessed August 23, 2012
- Ministry of Health and Social WelfareOrganosiAthensMHSS2010 Available from: http://www.moh.gov.gr/articles/newspaper/nomothesia-kanonismoi/194-isxyoysa-nomothesiaAccessed January 23, 2012
- Greek Parliament3868/2010 Law ‘Upgrading the National Health System and Other Provisions of the Ministry of Health and Social Solidarity’ [Nόμος 3868/2010. Aναβάθμιση του Eθνικού Συστήματος Υγείας και Λοιπές Διατάξεις Aρμοδιότητας του Υπουργείου Υγείας και Κοινωνικής Aλληλεγγύης.] Available from: http://www.et.gr/index.php?option=com_wrapper&view=wrapper&Itemid=108&lang=enAccessed January 25, 2012
- RiderMEMakelaCJA comparative analysis of patients’ rights: an international perspectiveIntern J Cons St2003274302315
- InvolveIntroducing participationPeople and Participation: How to Put Citizens at the Heart of Decision-makingLondonInvolve2005512 Available from: http://www.involve.org.uk/wp-content/uploads/2011/03/People-and-Participation.pdfAccessed January 25, 2012
- KondilisEGiannakopoulosSGavanaMIerodiakonouIWaitzkinHBenosAEconomic crisis, restrictive policies, and the polpulation’s health and health care: the Greek caseAm J Public Health2013103697397923597358
- World Health OrganisationMonitoring the impact of the financial crisis on health and health systems in GreeceCopenhagenWHO2015 Available from: www.euro.who.int/en/home/copyright-noticeAccessed August 23, 2015
- IfantiAArgyriouAKalofonouFKalofonosHFinancial crisis and austerity measures in Greece: their impact on health promotion policies and public health careHealth Policy20131131–281223790265
- World Health OrganizationImpact of financial crisis on health: a truly global solution is neededCopenhagenWHO2009 Available from: www.who.int/mediacentre/news/statements/2009/financial_crisis_20090401/en/Accessed August 23, 2012
- BoudioniMMcLarenSListerGThe role of citizenship, culture and voluntary community organisations towards patient empowerment in England and GreeceInt J Caring Sci2017101303312
- XesfingiSVozikisAPollalisYCitizens’ preferences on healthcare expenditure allocation: evidence from GreeceHealth Expect2015191265127627878936