Information and shared decision-making are top patients' priorities

Medical care has undergone profound changes in recent years. One of the most important changes with far reaching implications has been the advent of patient-centered medicine [1]. In contrast with the former paternalistic approach and the concentration on the medical/scientific model of disease, a novel attitude had been developed and promoted, redefining the physician's role. The new patient-centered approach emphasizing the patient's autonomy, values and preferences [2, 3] was suggested to be highly beneficial [4‐6]. However, it may be less widely accepted and applied in the field than is currently appreciated [7, 8]. Another significant change involves the increasing impact of health maintenance organizations (HMO's). Restrictions imposed by the HMO's increasingly affect both physician's decisions and patients' access to health care [9‐12]. The patient's reaction to all these changes has been infrequently studied. Current patient's priorities for improving their medical care were determined in this study.

For the main study, hospitalized or ambulatory patients treated at our academic hospital, were approached consecutively and asked to participate. Both clinical settings were included in order to determine whether the experience of hospital admission affected patients' views or not. The point in time during the hospitalization or clinic visit varied for each patient, but this was not expected to have an effect on patients' responses since they were clearly asked for judgment of their overall experience of care and not of the current circumstances. The study was done during the spring of 2004. The patients received a brief verbal explanation saying only that their opinion was important; that declining would have nothing to do with their future care and participation was entirely voluntary and anonymous; and that rather than being interested in their immediate situation, we would like them to express their general opinion and preference. Consenting patients were handed a short form and asked to read it, consider, and mark their replies or indicate them to the researcher who marked it himself. The form was then collected. All patients currently treated in hospital or on ambulatory basis were eligible. Patients with cognitive impairment, language barrier (very few patients who spoke only Amhari, the language of Ethiopia) or those who were acutely ill and uncomfortable were excluded. The form [see Additional file 1] included 3 parts. In the first, the patient was asked as follows: if you could improve ONE thing about your medical care, what would you like to change as your FIRST priority or, what would you like the most to be different. Then, six options were provided, as follows – that you would have easier access to specialist physicians or the hospital; that the waiting time (queue) for tests would be shorter; that medications would cost less; that you would always be treated by the same physician; that the physician will devote more time to you; and that the physician will explain to you all about your illness and its possible treatment and will let you decide together. The first 3 options all relate to administrative problems. They are beyond the physician's jurisdiction and are not directly related to the patient-physician relationship. The last 3 options deal with the continuity of care, consultation time and the patient's information and autonomy. Thus they relate directly to medical care as administered by the physician.

The second part of the form included basic demographic and clinical details. On the third part, the patient was asked to make one additional selection, reflecting his or her second priority choice of the six issues [see Additional file 1]. To avoid bias related to an item's place on the list, 6 different types of forms were prepared. The study was approved by our Institutional Review Board. Chi-square and T test were used for the statistical analyses.

The adoption of the patient centered approach and the increasing role of managed care regulations have practically transformed medical care in recent years [3, 13]. Paradoxically, patients' wishes and preferences have often remained unclear in this new setting. To determine which aspect of several key features of medical care (either 'organizational' or related to the patient-physician relationship) concern patients the most, we asked patients receiving care at an academic medical center for their opinion, using a clear short questionnaire.

Patients were very keen to participate, as the pilot study and the 100% response rate reveal. The heterogeneity of our study group (Table 1 and Figure) adds significance to our results, as does the fact that preferences were not found to vary with age-group, gender, income, education or illness-related characteristics. Patients with low level of education made more 'administrative' choices, but no particular selection was found to vary with education. In one study from California, patients' preferences for information and control were associated with being female, white, younger, more educated and having a higher income [14]. Our patients' selections however, were independent of demographic variables.

We found that patient's first priority for a change in a shortlist of 6 issues [see Additional file 1] was not related to the organizational aspect of care but to the patient-physician relationship. More than one fourth of the patients participating in the study selected getting more information from the doctor and taking part in decisions as their first priority for a change and improvement (Table 2). Unlike studies that addressed preferences of special patient populations and subgroups such as cancer patients or patients at the end of life, most patients reported here had no major decisions ahead. Nevertheless, many wished to become partners to the doctor's information and decision-making relevant to their care. In the case of some particular patient's subgroups however, alternative preferences might be found. For example, a prominent physician who became ill with cancer gave a moving account of being flooded with information yet he had a strong wish for a physician with authority who would make the 'best' decision on his behalf [15]. Such possible dichotomy between wanting greater information but not necessarily greater decisional control was also identified in several studies of cancer patients [16‐18].

This abovementioned result may indicate not only a current deficiency in patient's preferred and attained levels of involvement, but also their needs for more autonomy and control over their care. Information and decisional control are multidimensional concepts and it can be argued that by choosing this item, participants have in fact selected two things. However, it is hard to separate the two. Not only are they both essential components of patient autonomy, but there can be no shared decision-making by the patient without the provision of information [19, 20] including the existence of alternatives and their merits and shortcomings. The preference of our patients is in line with other observations. It has already been noted in several studies that although the patient centered model is widely advocated, its actual use in practice is probably rather limited [4, 7, 21‐23]. Patients' needs for information and a patient centered approach often remain unfulfilled, as our study indicates and other studies support [4, 24‐28]. This is regrettable since besides complying with patients' wishes [5], adopting a patient-centered approach is associated with several important health advantages briefly presented in Table 4[5, 29‐38].

Although physicians' time has become a major concern [39], interestingly, patients were least concerned with the short amount of time that the physician could spare for them according to other studies [11, 22]. The often disrupted continuity of care was also not a major issue for most. In a study that examined continuity alone, it was rated highly by patients – who were unwilling however to sacrifice a little more time or money to maintain it [40]. Continuity of care was rated more highly by doctors than by patients [24], suggesting that it can be partly related to the paternalistic model [41]. Only about 11–14% of the patients selected time or continuity as their first priority for a change, about a half or less of those who desired more information and participation in decisions (27.4%). Whether patients' first or second selection is examined, they identify access to specialists/hospital and waiting time for tests as important concerns, second only to patients' information/autonomy (Table 2). Although selected as first priority by just 16–18% of the patients, these issues keep appearing in patients' most favored combinations (Table 3), reinforcing their importance to the patients. At least one of them (access to specialists/hospital) can also be viewed as a measure of a desire for more patient control, rejecting the doctor's role as gatekeeper, imposed by the HMO's [12]. An inverse relationship between the intensity of managed care and patient satisfaction has already been noted in at least one study [42]. The cost of medications was much less important to most patients (<13%). Thus, a simple questionnaire may be utilized to learn not only of patient's priorities, but also of the possible existence of administrative interferences that hinder patient satisfaction with their medical care and need attention.

Our study had several limitations in that the issue selection was partially judgmental, the sample was not very large and the possible role of cultural reasons which may affect patients' selections was not explored. Also, patients' choices necessarily reflect their perceived problems with health services as administered locally. On the other hand, the issues presented for the patient's choice were based on a careful review of the literature (see under 'Methods') as well as a pilot study. The 100% participation rate of patients approached is a significant strength of the study. The study population was as heterogeneous as the population in central Israel, and may well be considered representative of the general Israeli population. Generalizability to other societies remains an open question. Since culturally, our population is essentially similar to other western countries, it is likely – but not proven – that our results may be generalized to other societies. This important point however, remains to be examined in future comparative international studies. Indeed, similar methodology may be easily adapted to study patients' priorities and wishes for improved medical care in any other location.

Understanding the patient's narrative [43‐45], providing all information [46] and joint decision-making [47] are increasingly recognized as essential elements of care giving. Our data suggest that at least in the population studied these issues constitute the change in current health care most desired by the patients. While not featuring much in older studies [48], a similar strong desire for patient autonomy was already identified by recent research [28, 49‐51]. To answer those needs and achieve the clinical benefits associated with better informed patients and shared decision making (Table 4), physician training programs appear to be an important tool [52]. To overcome current deficiencies these programs should be disseminated, since regardless of background or disease – being well informed by their doctors and allowed to take an active part in decisions – is a major preference for a great many patients.