The Knowledgeable Patient: Communication and Participation in Health (A Cochrane Handbook)
Here’s the link.
The book wasn’t particularly good (I gave it a 2 star rating on goodreads) and I didn’t spend much time on it, so I also don’t plan on spending much time on it here. There’s too much fluff and too little hard data for it to be all that interesting to me. This is not to say that it’s not a research-oriented book; it very much is, but apparently communication research at this stage is, well, yeah… There’s a lot of stuff here, but a lot of it wasn’t particularly interesting. I’d expected more from a Cochrane Handbook.
Anyway, some quotes (my bold):
“communication-related difficulties affect not only people’s feelings but also the quality, efficacy and safety of the medical and surgical treatments […] 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. […] Communication failures can cause not only dissatisfaction but serious adverse events (an ‘injury caused by medical care’ ). 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 . […]
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 […] Poor communication is known to be a key contributing factor in litigation
against primary care physicians . […]
There is a long recorded history in research indicating that patients want more information than they receive. […] 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 . […]
People are usually presented as the recipients of information and communication, such as advice on what to do to keep healthy, get screened, take up needed healthcare and so on. The importance of information coming from consumers or the reality of many consumers communicating with each other does not receive the same attention.
Analysis of thousands of interventions for communication and participation in fact identifies that communication and participation can be readily conceived as multidirectional. […]
People cannot change risk factors unless they know about them, want to change them, understand how to change them and receive support and assistance in that process. This makes communication – and risk communication in particular – a key component of any strategy to reduce the impact of chronic disease, particularly where there are a number of known modifiable risk factors. […] Risk communication involves informing or educating people who are exposed to a risk factor (e.g. smoking) about their risk of disease. Information on the qualitative and quantitative dimensions of the risk may be presented with a view to enabling people to make decisions about changes in lifestyle or medications to reduce that risk . A fundamental requirement for risk communication is to have concrete data from which to estimate the risk of an individual developing a disease. This is achieved by use of epidemiological research […] Risk communication is challenging for health professionals. General practitioners (GPs), and increasingly nurse practitioners, may be the first point of contact and information for many people. Apart from accurate calculation  and application to an individual patient, complex statistical concepts have to be communicated in ways that are easy to understand and motivating too . Consumers’ existing understandings of risk information, their individual personal life circumstances  and individual preferences for the formats used to communicate risk [13, 14] add another level of complexity. This chapter presents findings from qualitative research into the views of health consumers and GPs on how risk for CVD should be discussed in consultations. […]
Percentages were frequently misunderstood by consumers [/patients, US], hampering their understanding of the degree of risk. […] Clear visual representations of risk assists comprehension . […] Whilst GPs’ format preferences aligned with consumers, some felt that their patients did not respond well to numbers or charts. […] Reflecting other research findings, and highlighting their own experiences of consumers’ health literacy (or innumeracy), a number of GPs thought that the use of numbers, statistics, percentages, ratios and proportions was too difficult for some of their patients to understand or that their use might be confusing . Several GPs also commented that since they did not understand particular numbers (such as odds) themselves, they would not expect that their patients would understand such measures accurately. […]
The people who expressed high levels of satisfaction with their experiences were those who felt that their physicians treated them as equals and that their treatment decision was made with input from both the physician and the patient. Positive health outcomes, including symptom resolution and pain control, have been linked to effective communication and agreement between the physician and the patient [8,9]. […]
Adverse events are incidents in which a patient experiences unintended harm while receiving medical treatment . […] some may be due to treatment (e.g. prescribing or administering the wrong medicine or dosage), they may be known risks of a procedure (e.g. complications of a surgery or therapy) or they may be indirectly related to treatment (e.g. healthcare-acquired infection or exposure to a disease or disease risk). […] Communication following adverse events is especially sensitive and challenging. Doctors may be reluctant to apologise or inform patients that mistakes have occurred, as it may be seen as an admission of culpability and could raise liability concerns [4, 5]. Patients may suffer secondary harms, such as confusion, anxiety or distress, if poor communication strategies are used when disclosing information about adverse events, such as exposure to a disease risk . […] When an adverse event has occurred in healthcare, people generally want to be informed [4, 11]. Even with the current increasing emphasis on open disclosure, there are indications that many adverse events remain unreported, and historically, this was often the case [4, 5, 11]. Several studies of people’s preferences for disclosure indicate that communication should contain detailed information, explaining the event, how it will affect them, what steps are being taken to prevent future occurrences of the same problem and, significantly, an expression of regret. People also want access to ongoing emotional support [4, 11]. […] People at risk, in general, would prefer to be notified of their risk status even if it is distressing [6, 12–14]. […]
Information found through individual research can […] be confusing or contradictory, as indicated by Glenton’s study on the information provided by government-run online health portals. Glenton and colleagues found that health portal information is rarely supported by systematic reviews, and is frequently confusing, vague or incomplete . […]
Most of the reviews suggest that interventions to improve communication between clinicians and patients have only modest benefits on consultation processes and patient satisfaction. […]
There is no guarantee that evidence synthesised in a systematic review will lead to a clear conclusion. However, this does not make the review any less useful. As Light and Pillemer suggest, disagreements between research findings offer a valuable opportunity for the reader. Divergent outcomes may result from carrying out the same intervention in different settings, from an intervention being implemented differently or even different interventions sharing the same name. Exploring conflicting findings may teach the reader how to implement an intervention in their setting successfully in the future . […] When confronted with the huge quantity and variable quality of available research, it may be tempting to take a short cut and use one study from a reputable journal to inform a decision. […] A health professional who looks at only a few of the individual BCN trials might have difficulty assessing their quality or comparing their results, and may reach a conclusion about the effectiveness of BCNs not actually supported by all the evidence. With a systematic review, all the available evidence is brought together in one place. Though this review shows no certain outcome for the intervention, it is preferable to know this, rather than basing future decisions and programmes on limited or poorer quality evidence. […]
The pharmaceutical industry alone accounts for 25% of the United Kingdom’s business investment in R&D […]
Whilst policy and supportive initiatives can increase patient involvement in setting research agendas, the question remains: does it make a difference? Indeed, there is some concern that involving non-researchers in the process may compromise research rigour in some way . […]
At present, research evidence and the information materials derived from it for both doctors and consumers principally focus on one disease and largely ignore the interaction of diseases in patients’ lives . This means that there may be little or no information for patients with multimorbidity to support treatment, self-management or other health actions [25, 27, 36]. There may also be little information that is suitable for doctors to share with their patients when multimorbidity is present. A further problem arises because it is not possible to simply apply what is known from research and information derived from single diseases to people with multimorbidity [12, 24]. […] although many interventions exist which might theoretically be able to help improve medicines use in multimorbidity, the reality is that the research evidence that evaluates these strategies does not consider, in most cases, issues of the growing number and complexity of medicines for multimorbidity. This means we have almost no research evidence to guide practice or policy on medicines in multimorbidity even though multimorbidity is a known risk factor for medicine-related adverse events . […]
At its simplest, health literacy is the ability to seek, find, understand and use health information . […] Health literacy can be built, but the effects of poorer literacy have been the focus of much of the research so far. […] Poorer health literacy is linked to more adverse events. […] People with limited health literacy are more likely to report their health as poor. They have poorer health outcomes [7, 8]. […]
In recent years, television and the internet have become the most important resources for health information [31, 32] […in China, US], with more than half of Chinese people gaining their health knowledge from television .”
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