The need to inform patients and their families appropriately is now one of the principal challenges faced by all physicians. Almost all patients now demand more complete and better quality information. Studies in Spain have noted that elements of consultations which patients value most highly include receiving clear and comprehensible information especially regarding treatment and its effects; reassurance by physicians on matters the patient has questions on1; and knowledge about and comprehension of the patient´s problem.2 One of the main expectations on the part of patients who seek primary care is to receive appropriate information and advice.3
The desire to be better informed might be best understood in the light of new social trends: changes have broken down social and class barriers, and rights are being demanded for minorities and other groups (sexual orientation, ethnic identity, women and consumers, among others). Greater freedom of expression in all areas, and greater availability of medical information mainly on the Internet, contribute to greater expectations by patients to participate in their own care, especially for chronic illnesses and other, lesser illnesses that make up the majority of cases. In addition, medical ethics is acquiring a central role in patient autonomy, and the physician-patient relationship is coming to be viewed as an act of deliberation and collaboration between both parties. These factors have eroded the traditional view of the physician-patient relationship characterized by the physician's paternalism and the patient's lack of information. In the process, some of the more confessable assumptions that underpinned the old model have been overturned. On one hand, the purportedly unbridgeable competence gap made it difficult to provide patients with an appropriate explanation of complex subjects, owing to the physician's vast expertise and the patient's lack of suitable background knowledge. In addition, the emotionally charged environment created by illness was assumed to make rational communication and comprehension difficult.
However, other much more unsavory factors have also been involved. One such factor was physicians' desire to retain power by controlling information. Work by Ley4 on the effects of information provided to patients and their recall of this information lent support to this view by emphasizing that the more information given to patients, the less they remembered. The inevitable conclusion reached by a large part of the medical community was that it was not worth it to give patients too much information.
This conclusion, however, was refuted in research by Tuckett et al,5 who found that only 10% of the information was forgotten, in contrast with the 30%-50% figure in Ley's study. The classic work of Tuckett and colleagues, who studied 1302 consultations,5 led to important methodological improvements. The most noteworthy of these were the consideration that not all information is of the same importance, and that recalling does not necessarily mean comprehending or agreeing. Their study concluded by offering advice to physicians who wished to inform effectively. Doctors were advised to explore the patient's ideas and beliefs, negotiate and share an explanatory model, and check the patients' interpretation of and reaction to the information provided. In addition, the information physicians offer should be clear enough for the patient to understand it and to realize when he or she and the physician see things differently. In other words, we should offer more information that makes sense to the patient, not only because this is what patients want and because times change, but also because it allows us to hold consultations that are more cooperative and effective for both.
Recent studies in Spain, of which the article by Barca Fernández et al6 is a part, note that patients currently receive vague, unspecific information that keeps them from coping appropriately with their problem,2 that physicians do not explain the diagnosis,7 and that many patients do not understand the information they are given but cannot bring themselves to ask their doctor questions.6 Another finding of interest reported by Barca Fernández et al is that most of the patients did not participate in decision-making regarding their diagnosis and treatment. This, together with the physicians' lack of concern for their beliefs and preferences concerning the diagnosis and treatment,7,8 suggests that the quality of the relationship during the consultation remains questionable. As a result there may well be direct effects on the physician's clinical and advocacy efforts. The results of the studies mentioned earlier do in fact seem to suggest a relationship between low participation on the part of the patient during consultation, lack of interest in the patient as a person, and the fact that information provided to the patient is scarce and definitely inadequate. This probably makes it impossible for the patient to become truly capable of cooperating more fully and more effectively in his or her own health care.
The research agenda in this area is wide open: we need larger studies with more sophisticated methods that will give us a more accurate idea of the actual degree and impact of these factors, how they are related, and how they affect the outcome of consultations. We should focus our attention on determining in greater detail what transpires during consultations, and on how to record patients' opinions regarding their relationship with the physician. For example, the study by Barca Fernández et al notes that most patients felt the information they had received to be adequate. However, this does not seem credible in the light of data from this study and an earlier report by Makoul et al,9 who found an "illusion of competence' in patients who felt that important matters had been discussed when in fact they had not been dealt with at all.
Reliable, validated instruments should be developed that can provide direct information on patients' opinions, so that this information can be compared with the opinions expressed in appropriately designed questionnaires or qualitative studies, which are unfortunately rare. Both perspectives would make evaluations of the clinical relationship and its consequences more complete and accurate.
We also need to learn more about the information given to patients and their participation in decision-making. For example, how do we actually inform our patients when we do inform them? What techniques do we use, and how effective are they? Does the information we provide them with make sense to them? How and whom do we inform about difficult subjects (cancer and other serious diseases)? Nevertheless, we know that although most patients want more information, not all patients do. We do not know what factors determine this behavior, and we know hardly anything about family influences and information-related factors in the primary care setting in Spain. What do patients' families wish to know about their disease and the care they will need? We do not know what information we should share with patients, especially in cases of serious illness. We lay most of the blame for our mistakes in providing information and our inability to make consultations more cooperative on the lack of time, yet what we lack are studies that investigate these issues.
Much remains to be explained regarding the impact of training in these subjects on physicians, and regarding the most effective and practical teaching methods. However, we also need to know how to train patients to obtain more and better quality information from their physicians, and how this affects the physician-patient relationship and the efficacy of consultations. These topics are just a sampling from the vast research agenda in this crucial area of information. But they are topics that primary care professionals should consider in framing our long-overdue response to the challenges these problems pose.
Key Points
* Physicians should provide patients with more information that makes sense and is clear.
* The responsibility to provide information is one of the family physician's main responsibilities.
* The type of information and manner in which it is communicated are related with the patient's ability to cope with health problems and other consequences of the visit to the physician's office.
* The research agenda for family physicians concerning these issues is currently as broad as it is ineludible.
