(ADAPTED FROM BERWICK DM. “TAKING ACTION TO IMPROVE SAFETY: HOW TO IMPROVE THE CHANCES OF SUCCESS.” PRESENTATION AT THE ANNENBERG CENTER FOR HEALTH SCIENCES CONFERENCE, ENHANCING PATIENT SAFETY AND REDUCING ERRORS IN HEALTH CARE, IN RANCHO MIRAGE, CALIFORNIA. NOVEMBER 8–10, 1998. REPRODUCED WITH PERMISSION FROM INSTITUTE FOR HEALTHCARE IMPROVEMENT)

Patients as active participants in their care

Patients are usually thought of as the passive victims of errors and safety failures, but there is considerable scope for them to play an active part in ensuring their care is effective, appropriate and safe. Angela Coulter (1999) has argued that instead of treating patients as passive recipients of medical care, it is much more appropriate to view them as partners or co-producers with an active role. For instance, patients have a vital role to play in providing an accurate and relevant clinical history. Unfortunately, they are often not permitted to tell their story. When allowed to speak without interruption, and with simple encouragement, most people in outpatient consultations only seem to need about 90 seconds to present their story before spontaneously saying something like ‘That’s all, doctor’ (Langewitz, Denz and Keller, 2002). In practice, however, doctors frequently interrupt before the story has been told. In a study in the United States, patients were allowed to speak for only 23 seconds before being interrupted by their doctor, with the result that important information was often missed (Marvel, Epstein, Flowers and Beckman, 1999).

Patients contribute to their own care at every stage through provision of diagnostic information, participation in treatment decisions, choice of provider, the management and treatment of disease and the monitoring of adverse events and other ways (Box 15.2) (Vincent and Coulter, 2002; Coulter and Ellins, 2007). Patients also need to actively intervene to protect themselves from errors or to avoid delays; for instance, patients frequently provide repeat histories to compensate for missing notes, relay information between clinicians, remind nurses of tests that should be done and chase test results. Unruh and Pratt (2007) nicely describe this as the ‘invisible work’ that patients do in a healthcare system and provide some apposite examples of the ways in which cancer patients monitor and actively intervene to ensure they receive the correct treatments (Box 15.3).

The degree to which patients can be involved will vary considerably, depending on the nature and complexity of the treatment and the degree of technical knowledge required to understand the treatment process. Most importantly, it will depend on the extent to which each person feels willing and able to play a more active. At the one extreme are those people who prefer, whether from temperament or custom, to leave all decisions to their doctor and take a passive role. At the other extreme are those who wish to be involved in the minutest details of their treatment. Both these approaches can be appropriate in particular circumstances: for an acute medical emergency the sensible patient leaves almost all immediate decisions to the staff. In the case of a long-term chronic illness, the actively involved, enquiring patient is more likely to cope more effectively and receive appropriate treatment.

The patient’s role in patient safety

To encourage patients to take a more active stance, some organizations have produced leaflets setting out what patients can do to make their own care safer. The US Joint Commission on Accreditation of Healthcare Organizations (JCA-HO) for instance, has campaigned for patient to ‘speak up’ to prevent errors in their care (Box 15.4). Their openness about the possibility of error and the active involvement of patients in some specific activities must certainly be welcomed. Encouraging patients to ask questions about their medication to make sure they understand, not to take medication unless they are clear about its purpose and to be responsible for their own contribution to their treatment seem reasonable and useful precautions although, if followed to the letter onall occasions, could take up a great deal of staff time.

Encouraging patients to ask questions is straightforward enough and would be accepted by most patients and staff, though attitudes to such questioning vary considerably in different countries. Much more difficult is the suggestion that patients might actively challenge a health professional. Patients are meant to observe whether their identification band has been checked, tell the staff if they think they might be being confused with another patient and remind nurses and doctors to wash their hands. Although well intentioned, this is a considerable extension of the patient’s role and, arguably, an abdication of responsibility on the part of healthcare staff.

Patient involvement is potentially attractive on several counts; involving patients in safety problems, such as poor hygiene and infection, may well be very worthwhile. It accords with government policy, or at least with government rhetoric, in many countries striving to give the patient a greater voice in healthcare. These initiatives are also attractive because they seem cheap and straightforward. However, even the brief reflections above show us that these interventions are not as simple as they seem. Will sick people, or their advocates, be able and willing to be actively involved in safety? How will such involvement be received by staff? Is sucha shift in responsibility acceptable and ethically justified? We are not yet in a position to fully answer these questions, but some important studies are now emerging, which shed light on these issues.

Patient involvement in patient safety: fundamental issues

What role can patients play in patient safety? This seemingly simple question hides some rather complex issues, which we must unpack before we can sensibly address the relevant issues. The first stage is to set out the underlying issues and the factors that may influence patient involvement. My colleague Rachel Davis (2009) has pointed out in her systematic review that there are a number of prerequisites for patient involvement:

• Patients, or their family or advocates, must be knowledgeable. They must know something of the clinical process and how to act or intervene.
  
• Patients, or advocates, must be able to intervene. If they are very sick, have limited cognitive capacity or are in a very frail state, it is clearly unreasonable to expect active involvement.
  
• Patients must also be willing to participate. This depends on personal values and preferences and on a broader ethical assessment of responsibility for healthcare processes and outcomes.
  
• Healthcare professionals must actively encourage and appreciate patient involvement.

Knowledge, ability to act and willingness to participate will vary for different patients and in different circumstances. Will older people, for instance, brought up at a time when a doctor’s authority was seldom questioned, be able to ask questions about error and safety? In addition to age, cultural and social attitudes to authority may make patient involvement very difficult in some countries. When I gave a talk about patient involvement in one European country, an entire conference audience was completely incredulous at the idea that a patient might be encouraged to check that their operation was being carried out at the correct site.

Assuming a basic knowledge and willingness, a further set of questions arise that concern the nature of the involvement. Willingness to participate will depend on what is being asked. Is it just checking? Does it involve challenging someone? Knowledge of processes will vary from patient to patient and across different arenas of healthcare. A person with chronic diabetes may well be expert on all aspects of their diabetic care, but have little to contribute when they are admitted for surgery. Having laid out some of the principal conceptual and practical issues, we can now turn to research which has illuminated some of these issues.

Patients’ willingness to engage in safety practices

Since the publication of patient information sheets encouraging participation in safety practices, a small number of studies have assessed patients’ willingness to speak up and otherwise check on hospital procedures. We will consider three representative studies focusing respectively on consumers (i.e. people not in hospital), recently discharged patients and patients in hospital.

William Marella and colleagues surveyed 856 people in Pennsylvania in a telephone survey about 10 hospital orientated safety practices. The respondents were not in hospital, but nevertheless gave an opinion on what they thought they would do. The likelihood of action varied considerably; for instance, 85% of people said they would question the reason for a procedure in hospital, whereas only 45% were prepared to consider refusing care, such as a radiograph or the taking of blood that they had not been told about. Admittedly the latter are minor procedures, but this does show the difficulty many people have in standing up for themselves while in hospital; one cannot imagine, for instance, passively acquiescing to repairs on one’s car for instance, without even asking why they were necessary.

A similar telephone survey was carried out by Waterman, Gallagher and Garbutt (2006), who spoke to 2078 patients who had been recently discharged from hospitals in the mid-West of the United States. Over 90% were prepared to ask a nurse about the purpose of medication, though only 75% did so when they had the opportunity. Many fewer patients (75%) would have been prepared to help staff with marking a surgical site, and fewer still (45%) would have considered asking medical personnel whether they had washed their hands. When patients had the opportunity to assist with site marking, only 17% did so and fewer still (4.6%) asked staff about hand washing. Admittedly, these patients had probably not been specifically asked to help with site marking or engage with a hand washing campaign, but we can see that there may be a considerable gap between intending to check on procedures and actually doing so.

Even doctors and nurses can be surprised at how vulnerable they feel when they or a relative is admitted to hospital; previously assertive people can feel surprisingly passive when ill, partially clothed and confined to a hospital bed. To what extent do patients who are actually in hospital feel able to question healthcare about safety and quality issues? This was the question explored by my colleague Rachel Davis on a surgical ward (Box 15.5). This study confirmed that many patients in hospital could not contemplate challenging staff, especially doctors, on matters such as hand washing. Men were less inclined to ask questions than women, as were those who were unemployed or not educated to degree level. Willingness to question could be increased substantially however, if that patient had been personally asked to question staff. For example, patients were much more likely to react positively to ‘If instructed to by a doctor, would you ask a doctor: Have you washed your hands?’ than to ‘Would you ask a doctor: “Have you washed your hands?”’ Davis, Koutantji and Vincent (2008) argue that patient safety initiatives involving patients will have to be carefully tailored to different needs and contexts and will also have to involve staff if they are to be successful. If patients feel that they are being burdened by challenging questions and responsibilities, they are highly unlikely to engage and may well feel resentful. If, on the other hand, staff and patients are engaged in a collaborative effort to promote hand hygiene, then the response if likely to be very different.

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