Exploring patient participation in reducing health-care-related safety risks

Information about patients’ experiences is therefore vital (25). That aside, there is
evidence that patients with myocardial infarction who report better experiences in
terms of patient centredness have higher rates of survival after 12 months (26). Patient
reports are cited in the relevant scientific literature as, for example, patient-reported
outcome measures − measures of the way patients perceive their health and the effect
that treatments or adjustments to lifestyle have on their quality of life. These include
measures of patient outcomes (in terms of health or quality of life) as well as measures of
patients’ experiences or their satisfaction with health care.
Patient satisfaction had become a frequently used outcome measure in clinical trials
by the last decades of the 20th century, with satisfaction surveys frequently used to
measure quality of care from the patient’s perspective. In the second half of the 1990s,
however, it became clear that patient satisfaction surveys were not very useful as a tool
for quality improvement. It was argued that for quality assurance purposes, it would
be more useful to look at specific experiences (27−29). This led to the development of
new types of patient surveys with an emphasis not on evaluation of satisfaction, but
on collecting detailed reports of what actually happened to patients during a hospital
stay or a visit to the doctor. Examples of these consumer-experience surveys are the
CAHPS questionnaires in the United States (30–37), the questionnaires used by the
Commonwealth Fund (38–45), those developed by the Picker Institute (46,47) (now
used by the English CQC) and the Netherlands CQI (48–58).
Construction of questionnaires
Construction of surveys is usually based on qualitative research through, for example,
focus groups in which a small convenience sample of people are brought together
to discuss a topic or issue with the aim of ascertaining the range and intensity of
their views (see, for example, Damman et al. (55)). A focus group discussion leads
to quality of care being put into practice from the patients’ perspective and is aimed
at ensuring the validity of the questionnaires’ content. Focus groups result in lists of
possible questionnaire items. These topics are then used to formulate questions about,
for example, the degree or frequency with which experiences met quality standards.
Examples of this degree or frequency focus are shown in Box 7.2.
Box 7 .2 . Examples of degree and frequency foci in questions
Degree
In the past 12 months, did doctors listen carefully to what you had to say? (Response categories such as: “yes,
completely”; “yes, definitely”; “yes, to a certain extent”; “no”.)
Frequency
How often in the past 12 months did doctors listen carefully to what you had to say? (Response categories such
as: “never”; “sometimes”; “usually”; “always”.)
Topics covered in a patient survey vary but may include: fast access to reliable health advice;
effective treatment delivered by trusted professionals; participation in decisions and respect
for preferences; clear, comprehensible information and support for self-care; attention to
physical and environmental needs; emotional support, empathy and respect; involvement of,
and support for, family and carers; and continuity of care and smooth transitions (59).
Patients’ experiences and patient safety
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