OPEN Research Support

Senior researcher
Søren Birkeland
Odense Patient data Explorative Network

Projekt styring
Projekt status    Sampling finished
Data indsamlingsdatoer
Start 01.06.2018  
Slut 31.08.2020  

Patient Self-determination

Short summary

How to involve health users while both making the right decision, addressing demands of different groups, preserve satisfaction, and decreasing the need for complain behavior? The objective of this study is to empirically evaluate the relative effect of different levels of health user involvement and user characteristics on satisfaction and readiness to initiate a malpractice complaint. Health user questionnaire study with constructed case scenarios illustrating various levels of health user involvement and different outcomes. Comparative satisfaction and readiness for lawsuit initiation are analyzed.


This project concerns the citizen's encounter with the public health service. How much does a health care provider's information delivery and approach to health user's self-determination potentially impact experience of care, satisfaction, and relative promptness to complain? What is the influence of individual patient differences? And would the use of modern Shared Decision Making (SDM) approaches increase satisfaction and reduce readiness to complain, as such approaches encourage sharing of information and decisions? These are issues that health care providers would like to have more knowledge about in many everyday situations. Flooding patients with information which cannot be taken in may constitute reckless and unprofessional practice. Conversely, offering only limited information would be in line with traditional paternalistic practice but could be considered tantamount to malpractice. Malpractice complaints may be regarded as indicators of patient dissatisfaction and shortcomings in the health care system which warrant attention. In many Western countries, complaint numbers have steadily increased. Nowadays, the majority of physicians foresee a malpractice claim at some point during their careers. This development is far from desirable. Apart from reflecting bad health care experiences, destroyed patient-provider alliances as well as discomfort to patients, relatives, and health care providers, direct costs associated with complaints in Denmark exceeded $100 million in 2013. In the US, since the mid 2000ies, annual costs including defensive medicine expenses are estimated to be more than $50 billion. Among additional consequences are a broader reluctance among providers to do necessary higher-risk procedures. Research findings have suggested that communication breaches and poor information delivery are central themes in health care malpractice lawsuits. More specifically, failure to involve patients in the decision making process when determining treatment seems to be an important contributor to patients' decision to sue for malpractice. Up to one in ten complaints are explicitly attributed to alleged failure to obtain the health user's informed consent (IC) and in many additional cases failed user involvement in decision making is a probable underlying cause. Hence, enhancing communication related to health care provision and information interchange seem strategic starting points when dealing with the dissatisfaction-complaint challenge. In accordance with fundamental bio-ethical principles about respect for citizen autonomy and self-determination, legal norms in most countries require that health users' IC be obtained before health care intervention. However, IC achievement, particularly when formalistically practised in hectic clinical settings ("these are the pros and those the cons, please sign here!"), is far from promoting a patient's sense of genuine autonomy and also may fail to adapt the various situations, needs, and preferences of different patients (e.g. regarding age, ressources, personality). SDM is perhaps the most effective means of fostering health users' sense of sovereignty and ownership of health care decisions. In SDM, they communicate with health care providers about possible treatments using the best available evidence when weighing the various options and health users' personal likings. SDM implies that a patient and a clinician "share information [...] take steps to build a consensus about the preferred treatment; and that an agreement is reached on the treatment to implement". Patients are supported to identify individual preferences and consider attributes and consequences of options in order to arrive at informed preferences in reaching a decision about the best course of action. While SDM requires provision of all relevant medical facts and statistics on treatment options, it has been repeatedly noted that only "Few clinicians can quote accurate statistics from memory or eliminate their personal biases in a manner required to provide an objective presentation of the options [...]"; sometimes they may be tempted to 'nudge' the patient or in any case "[...] vary significantly on what information and risks they feel are important in making treatment decisions, which often leads them to make very different choices [...]". Therefore, it is advised that 'Decision Aids' (DAs) assist to systematically and uniformly access risk information and highlight individual user preferences without resorting only to memorization and clinician variability. DAs are interactive - typically web-based - clinical situation-specific tools, developed by experts and lay persons to be used in conjunction with a subsequent personal encounter when making preference-sensitive decisions (in that majority of clinical situations where there is more than one reasonable treatment option). SDM and DAs attract increasing attention from policy makers and health services researchers in North America, Australia, and the UK but has received relatively little attention in Denmark. SDM and DA use is not 'sticking an immersion heater in the ocean': SDM is increasingly integrated into regulations in many countries incl. some state legislation (e.g. Washington, Massachusetts, Minnesota) and specialist associations' recommendations. Furthermore, the applicant recently demonstrated more than one fourth of malpractice complaints on alleged IC obtainment failure to concern situations where applicable SDM DAs are now available. Moreover, a Cochrane review concluded that SDM DAs enhance communication, increase health users' information level, and reduce decisional conflicts related to feeling uninformed. Given these premises, and taking into account health user specific factors, it would be tempting to hypothesize that greater involvement (and application of SDM) may impact patients' experience of healthcare and improve satisfaction leading to less need to complain. No empirical research has, however, addressed whether this holds true. The overall project aim is to evaluate the relative effect of different levels of real-life approaches to health user involvement respectively health user characteristics on satisfaction and readiness to initiate a malpractice complaint. Empirical knowledge about the impact of different health user engagement strategies on satisfaction with care and complain behavior is essential to inform initiatives to make structural health care improvements in the form of health care provider education, organizational, and legislation changes, etc.

Description of the cohort

~12000 randomly selected men in DK aged 45-70

Data and biological material

A web-based case vignette survey

Collaborating researchers and departments

Medicine, HMS, Boston MA

  • Michael J Barry


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