1. An analytical framework and scorecard for people-centred health systems

Voice: designing health care and the future of health services together with people, families and communities

The dimension of voice captures the importance of involving people who use the health system – as well as their families and communities – in macro, or systems-level decision making processes. The ability to make decisions and influence the care they receive is critical to a health system centred on the people who use it. It will be essential to ensure that people are involved in decisions about their health care, from the individual to the systems level. Capturing the extent to which patient voices are in institutionalised in macro decision-making processes – across different levels and areas of the health system – is important to understanding the weight which is given to users of the health system in designing the system.

As part of the benchmarking exercise, a composite indicator that captures the institutionalisation of patient voices in decision-making processes across different areas of the health system was developed, using information from the 2016 OECD Health Systems Characteristics Survey (Box 1.1). The indicator identifies the extent to which patients have a formal role in health policy making by assessing whether patients have a formal role in: (1) licensing of pharmaceuticals, (2) coverage or reimbursement, (3) health technology assessment, (4) decisions related to service planning, and (5) definition of public health objectives. Countries were scored on a 1-3 scale depending on the number of areas in which patients have a formal role: countries with a formal role in none or one area were assigned a score of one, countries with formal roles in two or three areas were assigned a score of two, and countries with four or five areas were assigned a score of three.

Results of the benchmarking exercise (Figure 1.1) indicate that few countries have systematically included patients across all areas of health policy decision-making, with one-third of reporting countries indicating that patients play almost no formal role. Only three countries – Australia, Germany, and Portugal – systematically include patients in at least four areas of health policy making. Involving patients in decision-making processes is important to ensuring that health systems and services are designed to best meet people’s needs – in other words, to ensure health care is people-centred. Studies have shown that where input from patients or other community members is included in health initiatives, outcomes related to social impact – beyond the impact on health – are more likely to be captured and reported (Hoon Chuah et al., 2018[8]).

At the same time, official patient involvement in decision-making bodies should be considered a necessary but not sufficient component of a person-centred health systems approach. Even where patients or public representatives may be involved in decision-making, there remains continued debate over what effective public involvement means and looks like (Rozmovits et al., 2018[9]). Experts have called on decision makers to carefully consider the ethical challenges of designing high-quality patient involvement, including the ethics of patient selection and the frequent power imbalance between patient participants and other members of decision-making groups such as health technology assessments (HTA) (Vanstone et al., 2019[10]). In Australia, interviews with stakeholders involved in HTA and health funding decisions demonstrated a lack of consensus between representatives of patient organisations and other stakeholders in the adequacy of existing processes and what should be considered as evidence to guide decision making, with patient representatives more likely to consider broader social and emotional factors beyond bioclinical outcomes ( (Lopes, Carter and Street, 2015[11]; Lopes et al., 2016[12]). Similar tensions around the conceptualisation of evidence were found in a review of assessments for cancer drug reviews in Canada (Rozmovits et al., 2018[9]).

Figure 1.1. Institutionalisation of patients in decision-making

Number of areas of health policy making where patients are formally included (maximum = 5)

Note: Assesses whether patients have a formal role in: (1) licensing of pharmaceuticals, (2) coverage or reimbursement, (3) health technology assessment, (4) decisions related to service planning, and (5) definition of public health objectives.

Source: OECD (2016[13]), Health Systems Characteristics Survey.

Patient voice is not included evenly across areas of health policy decision-making: just over one-third (35%) of countries reported that a patient or citizen representative is included in decision-making around the licensing of pharmaceuticals, compared with nearly three-fifths (57%) that reported patients or citizen representatives are involved in coverage or reimbursement decisions.

Figure 1.2. Patient or citizen representative included in decision-making

Source: OECD (2016[13]), Health Systems Characteristics Survey.

During the COVID-19 pandemic, the speed at which decisions were made – particularly at the beginning of the pandemic – meant that patient voices were often excluded from decision making processes (Richards and Scowcroft, 2020[14]). Evidence from COVID-19 task forces across 24 countries suggests that not only were patients largely excluded from decision making, but that response efforts were largely concentrated among politicians, virologists and epidemiologists, with less input from frontline workers, civil society and social policy experts (Rajan et al., 2020[15]). Ensuring any public health response is person-centred must anticipate the way that policies will affect all populations – particularly responses that so drastically upend the social fabric and daily lives of much of the population. A failure to include patients in consultation and decision making – and a failure to consider the diverse backgrounds of people more broadly – will make it more difficult to anticipate the impacts that rapidly developed containment policies will have on different groups of people in society.

Including patients proactively in health emergency and pandemic response structures could help to ensure patient and family voices are not lost during health shocks. In Ontario, Canada, the Kingston Health Sciences Centre, a university hospital, included patient advisors in scenario planning before pandemic restrictions were imposed, and ensured the chair of the Patient and Family Advisory Council was a full member of the Incident Command team responsible for changing services during the pandemic. Input from patients and family members were directly responsible for certain policy changes implemented during the pandemic, including policies around in-person family visits (Bardon, 2021[16]).

Choice: making systems more responsive to people’s needs and preferences

Individuals are consumers of health services and goods, and increasingly wish to have a say in which goods and services they choose, and how. This dimension recognises the importance of providing care that meets people’s expectations, including providing multiple options and alternatives to how care is delivered, to ensure it best meets their needs. At its most straightforward, patients can be given literal choice in the health care services they seek out – for example, choice of physician or hospital. In some cases, this choice is unencumbered, with no gatekeepers, incentives, or other barriers. Even beyond the policy barriers put in place, however, other factors – such as affordability and geography – can create limitations to the ability of patients to exercise the choice they have on paper (OECD, 2019[17]).

The measures of choice included in the OECD benchmarking exercise were selected to measure two components of choice: what is available according to the health system policies of a country, and the level of access patients have based on extrinsic barriers, including affordability (Box 1.2). To evaluate patient choice throughout the health care system, a composite measure based on choice in primary, specialist, and hospital care was created, using data from the 2016 OECD Health Systems Characteristic Survey. Countries were scored on a 1-3 scale based on whether patients have a choice in their selection of their primary care physician, specialist care services, and hospital services. Where the choice of providers is not possible, or is only possible for one level of care, countries received a score of one. Countries where choice was possible on two of the three levels of care (irrespective of which levels these were) were given a score of two, while those where choice was reported possible across all three levels were assigned a score of three.

Patient choice appears to be well institutionalised across a majority of OECD countries. More than half of OECD countries responding to the OECD Health Systems Characteristics Survey reported that patients were given free choice in their selection of primary, specialist, and hospital care, with fewer than 10% reporting that patients were strictly limited in their choice of care (Figure 1.3). A plurality of countries attempt to influence patient choice using financial incentives – particularly at the specialist and hospital levels – though patient choice is not fully circumscribed.

Figure 1.3. Patient choice in primary, specialist and hospital care

Note: For “no choice” at the primary and specialist levels, patients are assigned to a specific provider.

Source: OECD (2016[13]), Health Systems Characteristics Survey.

In half (16) of countries, primary care acts as some form of gatekeeper to specialist care – either through strictly requiring primary care referrals to access specialist care (9 countries), or through financial incentives (7 countries) for patients to receive a referral from their primary care physician for further specialist care (Figure 1.4).

Figure 1.4. Primary care control of specialist care

Proportion of countries reporting (of 32 countries)

1. Patients are able to directly access specialist care, despite the financial incentives. 2. Except in cases of emergency.

Source: OECD (2016[13]), Health Systems Characteristics Survey.

Beyond the institutional rules governing patient choice, the ability to choose health care – including selecting physicians or facilities, but also more basic questions of seeking care – is further influenced by factors, such as affordability or geography, that are exogenous to the direct rules of a health care system but can nevertheless impact access to services. To capture how choice may be constrained by access, a measure of the affordability of care – defined as the proportion of the population who had forgone care due to cost – was included in the Scorecard.

Across 22 OECD countries with available data, more than one in six adults (17.2%) reported having forgone care despite a health need (Figure 1.5). The prevalence of forgone care is particularly high among low-income individuals: more than one in four (27.5%) individuals in the lowest income quintile reported going without care due to cost issues, compared with just 8.9% among the highest income quintile. More than one-third of the population in Ireland (34.4%) and Latvia (34.7%) reported foregoing care, while nearly half of all adults in the lowest income quintile reported doing so in Estonia (46.9%), Latvia (55.2%), and Portugal (47%). Less than 10% of the population reported forgoing care in only seven (Austria, the Czech Republic, Lithuania, the Netherlands, Norway, the Slovak Republic, United Kingdom) of the 22 countries.

Figure 1.5. Population forgoing care because of affordability, 2014

Source: OECD (2019[18]), Health at a Glance 2019: OECD Indicators, https://doi.org/10.1787/4dd50c09-en.

Co-production: enabling people to play an active role in decisions about their health

A people-centred health system cannot be designed without the participation of those who use it. Co-production captures the extent to which health systems have taken steps to involve people and local communities in their own care. Patients must be adequately consulted about their care, including receiving sufficient information from their doctors, and must have the health literacy and information they need to make decisions that are well-informed. Previous research has indicated that despite a growing recognition of the need to improve health literacy, levels of literacy nevertheless remain low across many OECD countries (Moreira, 2018[19]). Increasing levels of health literacy is particularly critical given the growing ownership many patients are taking in decisions around their health, and new sources of information – often outside they health system – they are consulting in doing so (OECD, 2019[20]).

Four measures were identified to capture the extent to which patients are active participants in their care, as well as how much opportunity they feel they are given by the health system to do so (Box 1.3). Two measures evaluate the extent to which patients feel the health system offers them the ability to make decisions about their care. To evaluate whether patients feel they are consulted and given sufficient information to make informed decisions, a patient-reported measure of the share of patients receiving easy-to-understand explanations by their doctor was constructed, using data from the OECD Health Statistics (based on data from national sources and the Commonwealth Fund). A second measure, using the same sources, measures the patient experience in being involved as much as they wish to be in decisions about their care and treatment.

In addition to the variables that evaluate the degree to which the health system – through its doctors and medical staff – give patients the tools and opportunities they need to make informed decisions about their health, two further variables were included that consider how patients avail themselves of information. Using information from the OECD Information and Communication Technology Statistics, a measure of how patients seek information from general sources was included based on the share of individuals who reported seeking health information on the internet during the previous three months. A further measure capturing patient engagement with tools developed by health systems, based on data from the Commonwealth Fund, was also included for a more limited set of countries.

Results indicate that patients report being largely satisfied with the accessibility of information they are given by their doctors, and broadly feel included in decisions about their care. On average across 17 OECD countries, more than nine in ten (91.2%) respondents reported feeling that they received easy-to-understand explanations by their doctor, while more than four in five (84.4%) reported being involved with their doctor in decisions about their care. Fewer than 80% of respondents felt involved in their care in four countries (Estonia, France, Poland, Spain). The fewest respondents reported receiving easy-to-access information and being involved in their care in Poland, where just under four in five (79%) respondents reported being given accessible information, and just over three in five (61.5%) reporting that they were consulted about their care. At least nine in ten patients reported both being given accessible information and involved in their care in five countries – Australia, Israel, Luxembourg, Portugal, and the United States.

Over the past decade, the proportion of people using the internet on a regular basis has increased dramatically, as has the frequency and intensity of internet usage. These trends are reflected in the proportion of adults (aged 16-74) reporting that they had recently used the internet to seek health information. Between 2010 and 2020, the share of individuals reporting that they had gone online for information about health increased by nearly 70% on average across OECD countries, from just over one-third of adults (34.1%) to nearly three in five (57.4%). In more than one in four (8/30) countries with available data, the proportion of adults using the internet for health information more than doubled between 2010 and 2020.

Health systems have invested significantly in scaling up patient-oriented digital health tools, including the development of patient portals and apps that offer patients direct access to their health data and information (often linked to electronic health records), the ability to communicate with health professionals, the ability to access prescriptions, and other tools. Previous analyses have suggested that uptake of many of these tools remained relatively low (OECD, 2019[20]). Data from the 2020 Commonwealth Fund International Health Policy Survey confirms that patient portal use is not yet widespread. On average across the 11 countries surveyed, just three in ten patients reported having used patient portals or apps to communicate with their doctors or download health information. Fewer than one in five patients reported using patient portals and apps for these purposes in nearly half of all reporting countries (Australia, Canada, Germany, Switzerland, United Kingdom). Norway, Sweden and the United States reported close to or more than half of respondents engaging with patient portals and apps to communicate with their doctors or download health information.

Nevertheless, while health-seeking behaviour has increased dramatically, a significant plurality of the population does not yet use the internet for health information purposes. Fewer than half of adults report using the internet for health information in eight (27%) countries, with just over one-third (35%) of adults in Italy having done so. In Finland, the country with the highest share of respondents using the internet for health information, just over three-quarters (77%) of adults reported having sought health information online within the previous three months. Individuals with higher levels of educational attainment, as well as younger adults, were more likely to have reported going online to seek out health information, compared with older and less highly educated adults. Among adults with high educational attainment, three-quarters (75%) reported having sought out health information online recently, compared with just over two in five (42%) adults with low educational attainment. These trends echo broader patterns of unequal access to new digital tools, and risk exacerbating existing inequalities affecting high-quality person-centred care, including around issues of choice (access to services) and co-production (health literacy) (OECD, 2019[20]).

The reduction in in-person consultations and health care services during the COVID-19 pandemic engendered a rapid rise in the adoption of teleconsultations and other digital health tools. On average across 22 European OECD countries, nearly half (45%) of respondents reported that they had used a teleconsultation service during the pandemic. Data from Israel, Norway and Australia suggest that in at least some cases, an uptick in the use of teleconsultation services replaced many of the in-person visits that were postponed or forgone due to the pandemic: In Israel, the number of teleconsultations per capita nearly doubled between 2019 and 2020, while in Norway teleconsultations per capita increased eightfold between 2019 and 2020 (OECD, 2021[21]).

Figure 1.6. Share of adults who received services from a doctor via telemedicine since the start of the pandemic, 2020 and 2021

Note: Low reliability in one or both rounds.

Source: OECD (2021[21]), Health at a Glance 2021: OECD Indicators, https://doi.org/10.1787/ae3016b9-en.

Integration: co-ordinating care for and around the person in need

In addition to the implications of fragmentation on overall efficiency and outcomes, poor integration within the health system makes navigating care and services difficult for the people who need them. Better integrated care among patients with chronic conditions has been found to improve well-being and quality of life, while helping to improve self-management of care (Coulter et al., 2015[22]; Kruis et al., 2013[23]). Yet operations within the health system remain too fragmented, too often, with poor co-ordination of care around patients, and frequent fragmentation between health sectors, such as primary and hospital care.

To capture the extent to which health systems have the capacity to deliver integrated care to patients, three measures were identified for inclusion in the scorecard. Two concern the extent to which there has been progress in integrating primary health services – arguably the most critical node for co-ordinating care – with other parts of the health system, with the third measure reflecting the patient’s views on the extent to which they have experienced problems with co-ordination after being discharged from hospital.

Primary care is a central node for delivering co-ordinated, person-centred care, and digital tools are a critical and promising tool to help overcome fragmentation between primary care and other parts of the health system. Yet despite this potential, and the broader scale-up of digital tools in health care, primary care has remained one of the most poorly linked sectors within the health system. While uptake of new digital tools has sometimes been slower in primary care, the majority of countries (15/25) reported that at least three-quarters of primary care physicians use computers to complete all identified tasks, including making appointments, issuing prescriptions, ordering laboratory tests, sending referrals, sending prescriptions to pharmacies, and being alerted of drug dose or drug interaction issues.

Figure 1.7. Computer use by primary care physicians

Source: OECD (2016[13]), Health Systems Characteristics Survey.

Encouragingly, the proportion of primary care physician offices who report using electronic clinical records in their practices has increased dramatically in recent years. The proportion of primary care offices using electronic clinical records increased from 70% in 2012 to 93% in 2021 (OECD, 2019[18]). More than 60% of responding countries reported that 90% or more primary care physician offices used electronic records in 2021, up from less than half in 2012.

In addition to having primary care serve as an important co-ordinating node for care management – particularly for patients with chronic conditions, ensuring a strong continuity of care as patients transition between sectors of the health systems is also important to ensuring health systems are well integrated. In a survey of hospitalised patients across 11 countries, nearly one in three (29%) reported that they had experienced problems with co-ordination of care when they left the hospital – either poor follow-up care arrangements from the hospital, or that their regular doctors did not appear to be informed and up to date about their care – including at least one in five patients in every responding country. That a large plurality of patients did not experience good follow-up upon hospital discharge is particularly concerning because poor or delayed follow-up care following a hospital admission has been associated with worse outcomes and an increased risk of hospital readmission, as well as poorer patient satisfaction (Jackson et al., 2015[24]; Braun et al., 2009[25]; Jack et al., 2009[26]). Many health systems have identified improving co-ordination of care between hospitals and the community as an important policy priority.

Respectfulness: treating patients with dignity

Compassion and respect are fundamental bedrocks of building a people-centred health system. Making sure that people are treated fairly and with respect, have their voices heard, and needs attended to, must be made the basic standard that people experience in their interactions throughout the health system.

Encouragingly, nearly nine in ten patients (89%) across 11 OECD countries surveyed by the Commonwealth Foundation report feeling that both doctors and nurses treated them with respect during a recent hospital stay, ranging from just over three-quarters of patients in the United Kingdom to nearly 95% in France. Nearly as many (83%) across 20 OECD countries reported being satisfied with the level of attention given to them by their regular physician in primary care, reporting that their regular doctor spent enough time with them during their consultation. A relatively high proportion of respondents in a number of countries reported insufficient time spent with their regular doctor: In Japan, nearly three-fifths of respondents felt their doctors did not spend enough time with them, while about three in ten patients felt similar in Poland, Sweden and the United Kingdom.

While patients reported a relatively high level of satisfaction at the level of respectfulness they usually experience within the health system, there is substantially less trust in whether the health system treats others fairly. When asked whether the they agreed that people in their area are treated equally, an average of just over three-fifths of respondents across 22 OECD countries responded affirmatively, including close to half or fewer in the Czech Republic, Greece, Italy and the Slovak Republic.