Why public trust in health care systems matters and deserves greater research attention

Introduction

There is a clear imbalance between the importance of trust for the functioning of a health care system and the priority given to research on trust. Historically, health care, especially primary care, has enjoyed a high level of trust compared to other sectors in society. ¹ However, scholars are now pointing towards something of a trust crisis in health care systems. ² For example, in the USA the crisis is attributed, at least in part, to a decline in trust in the government, repeated scandals across the health sector highlighted in the mass media, rapidly rising costs and the large number of uninsured people. ³ Despite rising concern, there is a paucity of research about the nature and extent of public trust in health care systems, and the implications of its presence or absence. Current political developments, plus the importance of trust in society, call for research and advocacy to understand, protect and restore public trust in health care systems. Researchers should not wait until trust is destroyed to such a degree that mistrust is the common base of interaction. So why is there so little research on trust in health care systems? Have we not yet recognized the importance of trust to the effective and efficient functioning of health care systems? Or is it the case that trust is too complicated to grasp? Or do we need a major system failure to open our eyes to understand that trust is one of the fundamentals both of a good society and a robust health care system?

Why does trust matter for health care systems?

Trust is paramount to the delivery of health care. ⁴ An obvious example of the value of trust lies in its effect at the level of compliance with therapy. ⁵ Perceiving, enhancing and justifying trust are embedded in law and policy as fundamental ethical goals. ⁶

The absence of trust might have harmful effects for the health of patients, as it could delay consultation with a doctor by a patient or the withholding of necessary patient information. ⁷

Paradoxically, as health literacy increases, trust becomes more important, while at the same time becoming harder to win. ⁸ Trust is often taken for granted, leading to neglect in the ways to maintain and build it. In turn, this results in harm to the system. ⁹ Robust measures of trust could therefore be used as indicators of performance of health care systems and might show the need for reform at the macro level. ² This is particularly true if trust is considered as a dimension of patient satisfaction. ¹⁰ Given that ‘Good Governance’ is a key aspect of health care policy, the importance of trust for system stewardship, a key component of ‘Good Governance’, needs to be stressed. ¹¹

However, trust in health care systems is difficult to study as there is no agreement as to how it should be conceptualized. Different authors use different terms, such as public trust, interpersonal trust and institutional trust; horizontal and vertical trust; individual trust and system trust; simple trust and established trust. They have also distinguished between cognitive trust, knowledge-based trust and affective/altruistic trust.^2,6,12–14 Often these terms are used interchangeably between studies with a similar focus, and are not clearly defined and distinguished. Rolfe et al., ¹⁵ after reviewing 10 intervention studies to increase trust between doctors and patients, found a similar lack of consistent definitions of trust. These different conceptualizations of trust result in diverse approaches to its measurement in terms of what is measured and how. The diverse range of instruments purporting to measure trust makes comparing or synthesizing evidence from studies difficult. ¹⁶

Examples of the importance of public trust

The first example provides insight into vertical trust, that is the trust that people place in higher authorities such as experts or governments. It illustrates the widespread effect of parental mistrust of measles-mumps-rubella vaccine which started in the late 1990s, particularly in the UK. Unproven links between the vaccine and bowel disease and autism were spread by the media and caused low vaccine coverage due to a lack of trust, leading to disease outbreaks. Similar trust dilemmas related to vaccines are found around the world. ¹⁷ Larson et al. ¹⁸ describe the ‘Vaccine confidence gap’ where public confidence in vaccines is associated with low levels of public trust in the wider health care system. They argue that public trust in vaccines is highly variable and the building of trust among members of the public depends on factors such as the perceived risk of the vaccine to cause harm rather than benefit, political and religious beliefs and socioeconomic status. Therefore, research should not only focus on the safety and effectiveness of a vaccine but also on the psychological, social and political factors affecting the public’s trust in it.

A second example shows the importance of trust in situations where people face choices, in this case, in the private health insurance market. Here trust plays three roles: in relation to reducing uncertainty about being able to afford treatment on the part of the person insured; in relation to the economic viability of insurers, as trust might be one motivating factor for choosing one insurer over another and in relation to preventing information asymmetry as private information has to be shared between the purchaser of insurance and the insurer. This form of trust might be described as established trust or history-based trust. In the Australian context, Natalier and Willis, conclude that trust in private health insurers is built up during a family’s history of insurance. It seems that trust accumulates among loyal insurees. ¹⁹ From the point of purchase of a policy, the purchaser is able to have a positive expectation towards the future, resulting in a reduction of fear and uncertainty. This, in turn, supports trust.

Use of the Internet to identify health-related information is the third example, where the consumer needs to trust a remote, anonymous and often foreign information provider in order to be able to benefit from the information available. This form of trust is probably best described as cognitive or knowledge-based trust. In the US, in the mid-2000s, 80% of adults regularly sought online health advice and in Europe it was 66%. ²⁰ Misleading information, which is perceived to be trustworthy by the consumer, could have negative health effects and prolong recovery. Though the Internet is increasingly used as a source of information, evidence regarding its usefulness and quality and the ability of the public to understand the information provided, is conflicting. The Internet is said to be the biggest contemporary addition to social capital. ²¹ In the context of the Internet, trust is most likely influenced by security, identity, privacy and quality. Nevertheless, the apparent quality (accuracy, completeness, readability, design, disclosures and references) of Internet content tends to be assessed as poor. ²² In the case of cancer risk web sites, of 22 sites reviewed in 2005 by Ekman et al., ²³ only two fulfilled the quality criteria of transparency, authority, privacy and currency as defined by the European Union. The overall impression of quality and the risk estimates provided were poor. There is an inherent disadvantage in Internet communication since no additional verbal or visual information can be provided unlike face-to-face interaction. ²⁴ Perhaps in response to the poor quality and limited trustworthiness of health care web-pages, the European Commission has recently launched a web site called ‘E-Health’, where so called ‘trustworthy’ e-health web sites are listed. ²⁵

Conclusion

These three examples show the importance of public trust in health care systems for their effective functioning and the potential harmful consequence of mistrust or low levels of trust in health interventions. Yet there has been little research in this area and a more vibrant exchange of knowledge among researchers and with policy makers and managers is needed. Many issues are still to be resolved. In particular, detailed conceptual work and the development of common concepts and methods for trust measurement would be beneficial. Exploration of the extent to which trust theories from other disciplines can be used creatively in the analysis of health care systems would also help. The long-term aim should be to learn how to earn, build and preserve trust in health care systems since, if we wait until trust in health care systems is eroded or even broken before giving its analysis sufficient priority, it may be too costly and too late to rebuild it.