The Knowledgeable Patient

Communication and Participation in Health

Sophie Hill

• Publisher: BMJ Books
• Year: 2011
• Print ISBN: 9781444337174
• eBook ISBN: 9781444346831
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

Learn how to place communication and participation at the heart of evidence-based healthcare

The Knowledgeable Patient: Communication and Participation in Health sits at the forefront of the challenging, changing 21^st century landscape. The 'knowledgeable patient' as an individual can take many forms: patient, family carer, consumer advocate, or member of the public interested in health issues. In each of these roles, knowledgeable patients interact with health professionals by asking questions about the evidence for treatment, seeking support, exchanging views, and contributing experiences and new ideas on how to improve the health system.

Drawing from several research paradigms, The Knowledgeable Patient is an essential guide to a new era of complex healthcare. Integrating consumer stories and evidence from systematic reviews, it examines key communication and participation issues in a range of contexts, including:

• surgery
• safe medicine use
• chronic disease self management
• the complexity of multimorbidity
• notification of rare disease risk.

The Knowledgeable Patient is international in scope with researched examples spanning living in the community, health service treatment, governance, and policy making. It provides health professionals with new ideas, concepts, evidence, and practical tools to understand the central role of communication and participation to a well-functioning health system.   It is an ideal reference for undergraduate and postgraduate students studying the health sciences.

Watch a video about The Knowledgeable Patient: Communication and Participation in Health from the author, Sophie Hill: bit.ly/xNYCqG

Chapter 1

Does communication with consumers and carers need to improve?

Megan Prictor1 and Sophie Hill2

1Managing Editor, Cochrane Consumers and Communication Review Group, Centre for Health Communication and Participation, Australian Institute for Primary Care and Ageing, La Trobe University, Bundoora, Victoria, Australia

2Coordinating Editor/Head, Cochrane Consumers and Communication Review Group, Centre for Health Communication and Participation, Australian Institute for Primary Care and Ageing, La Trobe University, Bundoora, Victoria, Australia

The stories we solicited reverberated with recurring and troubling themes: You cannot get a human being on the telephone, and you cannot get an appointment. When you do have an appointment, you wait an excessive time before seeing the doctor, who is in a hurry, does not seem to care, and provides inadequate explanation and education … . Each event had the potential to weaken the patient's relationship with the clinician and culminate in loss of trust in the health care system [1].

When my (MP) daughter was aged about 3, after a series of colds she was referred to a specialist for advice on mild fluid on the ears. This experience, although she does not remember it, shook my confidence in the health system. Things got off to a poor start when the specialist, who happened to be male and probably in his fifties, did not greet my daughter nor ask my name (preferring to call me ‘mum’), and did not introduce himself until prompted. Without a hearing test, after a brief look in her ears, he pronounced that she needed surgery to insert grommets to drain the fluid; that I would be grateful and would thank him once it was done; and that he could squeeze us in 2 days before Christmas. Rather taken aback, I enquired about possible risks or side effects of the procedure and was informed there were none. When I suggested I would rather take a ‘wait-and-see’ approach, he warned me not to stick my head in the sand and that adverse consequences would likely follow. After the appointment, I sought a second opinion and did not proceed with surgery.

I am an educated white female in my thirties, working for an organisation that conducts research into what makes for good doctor–patient communication. I had read about the health problem and the procedure beforehand, so had a good idea that what the specialist was telling me was not quite correct. Although there were no practical adverse consequences (i.e. my daughter was not subjected to unnecessary surgery), the experience left me so shaken that afterwards I burst into tears, and years later, it stayed with me. And I wondered about the parents of other patients of this specialist – did some of them also harbour doubts, but accepted his recommendations because he similarly implied that they were bad parents if they failed to heed his advice? Did they accept being treated rudely because, after all, he was the doctor?

What is the broader health policy and social context?

It could be argued that treatment effectiveness – whether a particular medicine or surgery works to improve life of the patient – is more important than whether the patient feels good about their relationship with their doctor, whether they are well informed about their treatment and whether they have been involved in decision-making. This might be particularly claimed in resource-poor or crisis settings, where efforts must focus unambiguously on the preservation of life [2]. In the bigger picture, my experience of poor communication with the specialist is arguably of very little consequence.

It is now well established, however, that good communication is fundamental to healthcare, both of itself and as a mechanism to ensure safe, effective treatment. This chapter establishes the case for efforts to improve communication between healthcare professionals and patients. It identifies how we can find out about the nature and extent of communication problems, and most importantly, what the consequences of these problems are. By demonstrating that communication-related difficulties affect not only people's feelings but also the quality, efficacy and safety of the medical and surgical treatments they receive, we establish that attempts to overcome the difficulties are more than just feel-good strategies. Rather, they are critical to improving people's health and ensuring that medical mistakes are avoided.

How do we find out about communication problems?

Data on communication difficulties in healthcare settings are available in diverse locations. Discussions of healthcare quality and safety often circle around these issues. Observational data are routinely collected by hospitals and healthcare quality agencies. For instance in Victoria, Australia, public hospital data on adult inpatients are gathered annually using the Victorian Patient Satisfaction Monitor, a tool which incorporates measures of (1) written and oral provision of information to patients about the hospital, treatment, medications and at discharge; (2) staff attitudes, responsiveness and communication; and (3) complaints management [3]. Stories about the impact of communication problems on patients, their families and clinicians also make it into the mainstream literature. Nancy Berlinger's paper on people's experiences of communication around medical error draws on narratives published in books, journals, general magazines and the internet [4]. Indeed, the focus on medical mistakes and adverse events heralded by the landmark 2000 Institute of Medicine report To Err Is Human: Building a Safer Health System arguably lends weight to research and discussion of patient involvement and improved clinician–patient interaction, since there is growing evidence – discussed below – that they are more than merely window dressing.

Healthcare complaints data, which are sometimes publicly reported, are the key to better understanding these issues. Poor communication itself is a major stimulus for complaints to hospitals and monitoring bodies. People may feel that they have been treated discourteously or given insufficient or incorrect information [5]. The US Agency for Healthcare Research and Quality noted that in 2005, for instance, almost one in ten adults reported poor communication when using health services in the previous year [6]. Significantly, poor communication was reported more often by people from racial and ethnic minority groups and those on lower incomes [7]. A study of people who had made complaints to hospitals in the Netherlands had similar findings, whereby 9% of these complaints were solely about communication between doctors and patients [8]. Obviously, diverse coding taxonomies result in different findings; however, there is no reason to expect the picture is any better in Australia. A study of 1308 complaints made at a major South Australian hospital over a 30-month period found that fully 45% (n = 621) of complaints were about communication problems, comprising a lack of communication (n = 240), offensive attitude (n = 124), lack of care (n = 112), inadequate information (n = 98), conflicting information (n = 47) and undignified service (n = 6) [9,10].

Complaints data also reveal that communication failures underpin many other types of health system problems. The Victorian Health Services Commissioner noted in 2008 that ‘communication is a feature of all complaints’ – whether they fall into the ‘communication’ category or not [5], whilst in West Australia, many of the complaints categorised as relating to treatment or access also related to the provision of information and effective consultation [11]. In the Dutch study, most complaints (68%) were about the clinical conduct of healthcare professionals ‘frequently in combination with shortcomings in relational conduct or shortcomings in the information provided by the professional’ [8].

Communication problems matter to patients

In the example above, poor communication had no impact other than that I felt upset and angry. I did not see it as part of a broader problem. Yet poor communication in the healthcare setting is very common. Personal accounts give some indication that poor communication can have a severe and lasting impact on people's experiences. In a recent paper about rare diseases, the mother of a child with fragile X syndrome described as ‘the hell of my life’ not the child's illness itself, but rather the clumsy and insensitive diagnosis disclosure by the physician [12].

Kuzel and colleagues, in a 2004 paper, pointed out that the focus on medical errors – such as medication and surgical mistakes in inpatient settings – highlighted by the To Err Is Human report is at odds with the types of problems that patients generally describe in encountering the health system. Patients in primary care are more likely to talk about difficulties in the doctor–patient relationship (primarily disrespect or insensitivity) and access difficulties, which overwhelmingly cause them psychological or emotional harms – including anger, frustration and loss of trust – as well as physical harm (particularly pain) and financial cost [1]. This is supported by Commonwealth Fund surveys showing that access difficulties, and breakdowns in care coordination and information flow, were experienced by most US adults [13,14].

There is clear evidence that people want more information than they are given and that clinicians tend to overestimate the amount of information they have provided [15,16]. Roter and Makoul have noted that only 58% of people studied said their healthcare provider told them things in a way they could understand [17]. Unsurprisingly, communication difficulties have been shown to affect diagnosis: Stewart noted that ‘50% of psychosocial and psychiatric problems are missed, that physicians interrupted patients an average of 18 seconds into the patient's description of the presenting problem, that 54% of patient problems and 45% of patient concerns are neither elicited by the physician nor disclosed by the patient’ [18].

Adverse events

Communication failures can cause not only dissatisfaction but serious adverse events (an ‘injury caused by medical care’ [19]). In 2008–2009, the report on such events in Victorian hospitals identified that communication was a contributing factor in 20% of these events, with health information a factor in another 8% of cases [20]. Similarly a US review of adverse events in obstetrics and gynaecology identified communication failures – either between clinicians or between clinicians and patients – as being associated with 31% of these events [21]. Communication failures between clinicians and patients contribute to wrong-site surgery, in which surgery is conducted on the wrong part of the body, the wrong surgery is done or the wrong patient is operated on [22]. Not communicating well with patients and their families and not including the patient or family in identifying the right surgical site are key causal factors in this type of error [23]. The World Health Organization's Surgical Safety Checklist for clinicians includes, as a necessary first step, that the patient has confirmed his or her identify, the surgical site and the surgical procedure, and given his or her consent [24].

A classic definition of medical error from the research literature is ‘failure of a planned action to be completed as intended or the use of a wrong plan to achieve an aim’ [25]. People using healthcare, however, have a broader conception of the term. Gallagher, Burroughs and colleagues have identified that patients see medical errors as including communication problems such as being treated rudely, poor responsiveness on the part of the clinician and long waiting times [25,26]. Researchers portray this conception of medical errors as being plainly wrong, a misunderstanding on the part of patients. Consequently, the authors call for doctors to explain more clearly to patients the ‘correct’ meaning of the term ‘medical error’. This so...

Table of contents

• Cover
• Title Page
• Copyright
• List of Contributors
• Preface
• Acknowledgements
• Chapter 1: Does communication with consumers and carers need to improve?
• Chapter 2: A new conceptual framework for advancing evidence-informed communication and participation
• Chapter 3: Interventions for communication and participation: their purpose and practice
• Chapter 4: Identifying outcomes of importance to communication and participation
• Chapter 5: Communicating risk and risk statistics for preventing chronic disease
• Chapter 6: What does participation mean? Reshaping our understanding of the meaning of surgery
• Chapter 7: Disclosure: a case study of communication about medically acquired risk for a rare disease
• Chapter 8: How I used a systematic review from The Cochrane Library
• Chapter 9: Evidence and resources for systems decision-making: improving the experience of health and treatment
• Chapter 10: Looking at online health information more critically
• Chapter 11: Learning to communicate
• Chapter 12: Getting the most out of research: using what we know
• Chapter 13: Research agendas for knowledgeable patients
• Chapter 14: Managing multiple health problems: is there evidence to support consumer-focused communication and participation?
• Chapter 15: Partners in care – an evidence-informed approach to improving communication with women in a hospital setting
• Chapter 16: Building health-literate societies
• Chapter 17: Tools for building research capacity and knowledge transfer
• Chapter 18: Emerging technologies for health communication
• Index