Patient involvement in patient safety - the patient as part of the safety solution: how can patients be involved? Contributory author: Rachel Davis, Imperial College London Research in patient involvement in safety is still in its infancy, though the issue has been discussed for a number of years. In 2002, a pioneering paper by Vincent and Coulter delineated some valuable contributions patients can make to their healthcare safety by (1):
Since the publication of this paper, attention has been drawn to several other safety-related behaviours in which patients can engage (2-7): For each of these ways in which patients can participate, a summary of relevant literature is given below. Further literature and research on patient involvement in safety-related behaviours is referenced at the end of this article. Patients can help to prevent or reduce diagnostic inaccuracies by fully informing their doctor about their symptoms and by providing details about their treatment and medical history. What does the literature show? Patients feel they are not are not always given the opportunity to voice their views and concerns about their health problem(s) to their doctor. (8-9) If patients do not feel able to express what they think their problem might be (i.e. their illness), the likelihood of misunderstandings and a misdiagnosis could be catalysed. (8) It is not surprising therefore that research in primary and secondary care has shown misdiagnosis is a common cause for concern for patients. (10-11) What needs to be done? To enhance the role in helping to reach an accurate diagnosis, patients should write down any questions/concerns they have prior to the medical consultation. This serves as a checklist so that at the end of the consultation patients can ensure all their questions/concerns have been raised and answered. Clinicians can also encourage patients to exchange information needed to help form an accurate diagnosis by adopting a patient-centred consulting style. Patients are much more likely to speak up and voice their concerns if they think their doctor genuinely wants to hear what they have to say and is sympathetic to their needs. Patients should be given information on mortality and morbidity rates and level of experience of the range of individual clinicians or hospitals they can choose from for their particular treatment or procedure. Patients can use this information to choose a provider with the best record on factors important to them - for example the safety and success rates. In a number of countries (e.g. More recently, in Research suggests that, given the opportunity, most patients prefer to be involved in choosing their treatment provider. (13-15) However, the extent to which patients consider the safety record of the hospital/doctor when making that choice is unclear. For example, despite data being accessible most patients in the Greater efforts should be made to disseminate information on the quality and safety of healthcare providers to patients. Patients should also be educated on how to use this information when making important choices regarding their healthcare. When patients are presented with a situation in which more than one choice of treatment modality is available, information on the risks and benefits to each treatment should be given. Patients can then make informed decisions about the treatment most suitable to their needs. When patients participate in the treatment decision making process they are more likely to be happy with the course of treatment prescribed; (19-20) this in turn, can improve adherence to medical and treatment recommendations. (21) In addition, providing information to patients on the risks and benefits of procedures can enable patients to opt for procedures entailing a level of risk which is acceptable to them. (22-23) Healthcare professionals should, whenever possible, offer information to patients about different treatment options available to them. Patients should be encouraged to participate in decisions about which treatment is most suitable to their needs. If patients do not want to participate, this should be respected, but the opportunity for involvement should always be left open. Patients that prefer not to be involved in one aspect of the treatment decision making process may well want to participate in decisions about treatment in future care episodes. Patients who are informed on what to expect from their treatment are in a better position to participate in general aspects of their healthcare management and also to speak up if they have any concerns or notice any errors in their care. Hospital patients can notify staff if they notice anything untoward with their treatment regime. A study on patients receiving outpatient oncology care showed how patients were able to detect a number of errors in their care. (24) For example, one patient alerted staff to a procedural error in which her intravenous drip finished earlier than usual. When brought to the staff's attention it emerged that the patient had been given twice the concentration of chemotherapy in half the recommended time. Therefore the patient played a fundamental role in mitigating the effects of the error by notifying staff so that prompt action could be taken. Patients can also help to reduce the likelihood of wrong site surgery (defined as "the performance of an operation or surgical procedure on the wrong part of the body") (25) by clearly marking the extremity to be operated on. In one study, 59% of foot and ankle surgery patients were compliant with instructions to do this. (26) While these data provide promising preliminary evidence that some patients are willing to help prevent wrong site surgery, the factors that may affect patients' willingness to engage in this safety-related behaviour are unclear. Further, a large proportion of patients did not comply with the instructions. The reasons for this are unclear, though it is likely that some patients forgot or misunderstood the instructions. In addition, because incidence rates of wrong site surgery are so low patients may not think they are at risk of such an occurrence, so may think related safety precautions are unnecessary. The level of involvement patients want in observing and checking care processes remains to be elucidated. However, as patients are at the centre of the treatment process, they are likely to be highly motivated to make sure that their care is delivered in the correct manner. Patients may not fully understand, and would not be expected to, some of the technical and clinical aspects of their healthcare management. However, they do observe almost the whole process of care. The patients' role in this area should therefore be encouraged whenever possible, providing of course that the patient wants to be participate. Patients' reports of adverse events and medical errors provide valuable information on types of errors most likely to occur in different healthcare settings. Research suggests that adverse event/error monitoring systems which are entirely reliant on doctors to report incidences, suffer from widespread under-reporting. (27-28) In addition, studies have shown that patients sometimes report incidences earlier than healthcare professionals, potentially reducing the time taken to respond to problems. (29) Some patients also report different types of incidents to healthcare professionals, providing greater insight into the epidemiology of medical errors. (30) Patient involvement in incident reporting is particularly valuable in the context of adverse drug reactions. Research in this area indicates that patients can contribute to the understanding of the nature and prevalence of particular reactions to a variety of different drugs. (29-30) A number of countries now have schemes in place aimed at encouraging patients to report adverse drug reactions. For example, such a scheme was introduced in Also in Britain, the National Patient Safety Agency's (NPSA) National Reporting and Learning System (NRLS) allows patients to report any incident or prevented incident (near miss) that they have either been involved in or witnessed. This information is an essential prerequisite to understand (from both the healthcare professionals' and patients' perspective) what has gone wrong in the past so that we can learn from this and redesign health services to minimise the risk of the same occurrence happening in the future. The extent to which patients are aware of this system is, however, unclear. Greater efforts need to be made to educate patients on the importance of reporting medical errors to systems such as the NRLS. To encourage patient reporting of incidences, it should be clearly emphasised to the patient that the information they provide can help to inform the development and implementation of interventions aimed at making healthcare safer for patients. Medication errors are one of the leading causes of adverse events in healthcare (31) with research reporting medication error rates of 3%-6.9% in the Research indicates that encouraging patients to work with healthcare professionals can help to prevent medication errors. (33) Patients can play a major part in reducing prescribing errors. Whenever possible, patients should clarify with the doctor what medication they need and cross-check this against the name of the medication that they actually receive. (6) Preliminary evidence suggests that the majority of patients are willing to engage in this type of basic medication safety-related behaviour. (34) Additional research investigating patients' comprehension of their medication regime shows that patients frequently misunderstand doctor's instructions on how to take their medications. A study on patients who were regular attendees of a hospital medical clinic reported that only 58% knew the correct dosage schedule of all their medicines. (35) This lack of understanding may be a major contributor to medication errors in some healthcare settings. It should be standard practice to encourage patients to check the name and dose of the medicines they are prescribed. In addition, healthcare professionals should check that the patient understands the instructions of how to take their medicines. Simply asking a patient "do you understand how to take your medicine?" may not suffice; some patients will nod their head or say yes even if they do not understand because they may feel stupid or embarrassed to admit otherwise. A more useful way of clarifying understanding is by asking the patient to repeat back to the healthcare professional what they have been told (e.g. "I am going to take one table 3 times a day at meal times"); whenever possible healthcare professionals should use this method. Healthcare associated infections (HCAIs) are ubiquitous in healthcare. In the UK HCAIs cause 5,000 deaths every year, costing the NHS £1 billion in additional bed stays alone. (36) While the causes are complex, poor hand hygiene among healthcare professionals plays an important role. Patients can help to reduce rates of HCAIs by asking doctors and nurses if they have washed their hands before they treat them. In 2004 the NPSA launched the "Clean Your Hands" campaign to help reduce HCAIs by improving hand hygiene. The campaign reminds staff to wash their hands regularly and encourages patients to prompt staff to do this. The pilot of the campaign revealed promising effects and it was estimated at a national level, 450 lives a year could be saved and £140 million released for the NHS. (37) In addition, intervention studies conducted in both the Research suggests that most patients realise they can have a role in improving hand hygiene of doctors and nurses. (3-4, 38-39) However, most patients do not feel comfortable questioning the practices of healthcare professionals (particularly doctors) on this issue. Studies in this area show that while nearly all patients would ask a nurse "have you washed your hands?" only about a third would pose the same question to a doctor. (3-4) Whilst the exact reasons for this are unclear it could be due to patients viewing doctors as more authoritarian figures, with more power and control over their treatment than nurses. Therefore, patients may be less likely to ask doctors questions that could be perceived as causing offence or challenging their clinical abilities. The patients' role in preventing HCAIs should be emphasised. Patients may feel they need to be given permission to ask healthcare professionals about their hand hygiene practices, particularly when they have to question doctors. Healthcare professionals (e.g. doctors and nurses) should therefore encourage patients to ask them questions. Such encouragement could be given verbally or alternatively by the wearing of prompting aids, such as badges which say "its OK to ask me if I've washed my hands". In the Research indicates that patient access to medical records can improve patients' medical knowledge and communication with healthcare professionals; support patients in managing their own care; and allow inaccuracies in the records to be identified. (7, 40-43) For example, in the primary care setting one study reported that 70% of patients identified at least one error or omission when given access to their records. While the majority of these errors were trivial, including out of date postcodes or telephone numbers, 23% of patients found errors or omissions that were defined as serious, including wrong medications, incorrect site of amputation and allergies and test results not recorded. (7) The extent to which patients want to participate in this safety-related behaviour is however, unclear. Existing evidence demonstrates the significant contribution that patients can make to their healthcare safety by having access to their medical records. Further research needs to be carried out in the specific context of patient safety to investigate how patients feel about being given access to their records and how the role of the patient in this safety-related behaviour can be enhanced. Eliciting feedback from those whom the healthcare system serves (i.e. the patient) can help to identify and prioritise areas for improvement in the safety of healthcare. One organisation that strongly advocates patient involvement in all aspects of their healthcare management is the Dana Farber Cancer Centre in the Patients can also help to facilitate safer delivery of healthcare by forming groups or organisations aimed at educating the public about patient safety and how they can be involved in reducing their susceptibility to medical errors. For example, in Information on different patient safety organisations (e.g. MRSA Action UK) and guidance on how patients can get involved with the work of these organisations should be made readily available to patients. In addition, standardised surveys should be developed for different healthcare settings (e.g. primary and secondary care) which allow patients the opportunity to provide feedback on the quality and safety of healthcare services they have received. Perhaps the most important way in which the contributions of patients can reduce the risk of patient harm and help to improve the recovery process and health outcomes is through compliance with medical advice or treatment regimes. In recent years technological developments have enabled patients to participate in care practices that were previously conducted by doctors or nurses. This has shown clear benefits to the patients. For example, when patients monitor their own anticoagulation therapy a reduction in the incidence of complications and adverse treatment outcomes has been observed. (44) In order for patients to effectively manage and monitor their treatment the patient must be given sufficient comprehensive information on how to do so. Unfortunately research indicates this is not always done. A postal survey of patients discharged from hospital reported that 60% were not given enough (if any) information about what warning signs to look out for if their wound was not healing as it should, and 61% were not given any information on when they could return to their normal activities. (45) Patients should always be given the requisite information on how to manage their treatment and what to expect in terms of the recovery process from their illness. Healthcare professionals should always seek clarification from the patient to ensure they have understood the explanations/instructions provided. Patients who are fully informed about how to manage their illness/treatment will be less likely to hinder the recovery process (e.g. by engaging in strenuous activities before they should). In addition, informed patients will be better equipped to notify a healthcare professional if they think there is a problem (e.g. if they think their surgical wound has become infected). In these ways patients can play an important part in reducing the likelihood and/or impact of medical complications. Just as patients themselves can help to improve patient safety by engaging in the above safety-related behaviours, patient advocates can be equally vital. A patient advocate is someone who the patient trusts and is willing to act in the best interests of the patient, for example a family member or friend. The role of the patient advocate in safety is particularly important when patients are unable to act for themselves (e.g. children; patients with cognitive deficits in the later stages of dementia; unconscious patients). It is clear that patients can make valuable contributions to the safety of healthcare. However, there is a paucity of evidence on how willing patients are to participate in different safety-related behaviours. Research does however suggest that patients want more open disclosure of medical errors and want to know the aetiology of such incidents, how consequences can be mitigated and how future recurrences can be prevented. (46-50) In, addition, patients acknowledge they may at times be responsible (at least partially) for errors that occur in their care and that they could have a role in preventing errors. (51) Existing evidence indicates the following: Patients are more willing to ask safety-related questions to nurses than doctors This appears to be the case in patient participation in preventing/reducing HCAIs. Research suggests that while the majority of patients would ask a nurse "have you washed your hands?" only about 30% of patients would ask the same question to a doctor. (3-4) Patients with prior experience of medical errors are more willing to engage in safety-related behaviours Research on patients' views on medication errors reported that patients with prior experience of medication errors were more likely to engage in several medicine safety-related behaviours. (34) In addition, several organisations (e.g. MRSA Action UK in Patients are more willing to engage in those safety-related behaviours that they perceive as long standing recommendations Research suggests that patients think that long-standing safety-related recommendations are more effective at preventing medical errors (e.g. making sure the doctor knows about all medicines currently being taken). As a result patients are more willing to engage in these activities. Conversely, patients are less likely to engage in unfamiliar and newer safety-related recommendations (e.g. asking healthcare professionals if they have washed their hands). (52-53) Patients' reported intentions to engage in safety-related behaviours are higher than patients actual engagement in these behaviours A study on hospital patients levels of comfort in performing a number of different safety-related behaviours (e.g. asking questions about their medication, telling healthcare professionals that an error has occurred, asking healthcare professionals if they have washed their hands) reported that the number of patients that said they would be comfortable participating in these different safety-related behaviours was significantly more than the number of patients that actually did carry out these behaviours during their stay in hospital. (53) Patients are more willing to engage in safety-related behaviours which they do not perceive as confrontational or challenging the clinical abilities of healthcare professionals Research suggests that patients are more willing to ask questions about their medication (e.g. purpose of, and when to take) than to ask healthcare professionals if they have washed their hands. (52-53) The former of these questions is likely to be perceived as common dialogue for the patient, whereas the latter is more likely to be viewed as challenging the clinical abilities of healthcare professionals. Patients with higher levels of self-efficacy are more willing to engage in safety-related behaviours Patients that feel capable and confident in their abilities to perform safety-related behaviours (i.e. they have high levels of self-efficacy in performing safety-related behaviours) are more likely to participate in these behaviours. This is particularly true for those behaviours that are newer and unfamiliar to most patients (e.g. asking healthcare professionals if they have washed their hands). (52) In addition to the above, there are a number of other factors that could potentially facilitate or impede patient participation in safety, including: (54) At present however, the degree to which these factors affect patient involvement in safety is unclear. There is a pressing need for empirical data which delineates the true extent to which these factors are important in determining involvement together with the interactions that may exist between each of these factors. By doing this, interventions can be targeted to those patients who have the potential to get involved. The efficacy of the interventions, in terms of encouraging patient involvement and improving patient safety can then be evaluated. Before ending, it is important to mention that engaging patients in the safety of healthcare does not mean that patients carry the ultimate responsibility for the safety of the care that they receive. Rather patients should be viewed as a safety "buffer" (often, the very last one) that complements existing mechanisms in place in the healthcare system. Patients that do not want (or feel able) to participate in helping to improve their safety should not feel they have to do so nor that any error that may occur in their care is their fault. If a patient does not want to participate in the safety of their healthcare, this should be respected, but the opportunity for (future) involvement should always be left open. References 1. Vincent C, Coulter A. Patient safety: What about the patient? Quality and Safety in Health Care 2002; 11:76-80. (Full text) 2. Coulter, A and Ellins, J. Patient-focused interventions: A review of the evidence. 2006. London, Picker Institute 3. 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Helping to reach an accurate diagnosis
Choosing a healthcare provider
What does the literature show?
What needs to be done?
Treatment decision making
What does the literature show?
What needs to be done?
Observing and checking care processes
What does the literature show?
What needs to be done?
Identifying and reporting treatment complications and adverse events
What does the literature show?
What needs to be done?
Reducing rates of medication errors
What does the literature show?
What needs to be done?
Reducing rates of healthcare associated infections
What does the literature show?
What needs to be done?
Identifying inaccuracies in medical records
What does the literature show?
What needs to be done?
Shaping improvements in the design and delivery of health services
What does the literature show?
What needs to be done?
Monitoring treatment and practising effective self-management
What does the literature show?
What needs to be done?
The role of the patient advocate in patient safety
Do patients want to be involved?