Development of an information source for patients and the public about general practice services: an action research study

Abstract

Objective The publication of information about the performance of health-care providers is regarded as central to promoting greater accountability and empowering patients to exercise choice. The evidence suggests that the public is not very interested in accessing or using current sources of information. This study aimed to explore the information needs of patients in the context of UK primary care and to develop an information source about general practice services, designed to be usable by and useful to patients.Design An action research study making use of data from formal and informal interviews, focus groups, participant observation and document review.Setting The geographical areas covered by two Primary Care Trusts in the north of England and two Local Health Boards in south Wales.Participants A partnership between 103 members of the public, general practice staff from 19 practices, NHS managers from four Primary Care Organizations and the research team.Results The public would like to know more about the quality and range of general practice services but current sources of information do not meet their needs. The public do not like league tables comparing the performance of practices and only a small number of people want to use comparative information to choose between practices. They seem to be more interested in the context and availability of services and the willingness of practices to improve, than in the practice's absolute or relative performance. They want to be clear about the source of the information so that they can make personal judgements about its veracity. Information is most likely to be useful if it adheres to the basic principles of cognitive science in terms of its structure, content and presentation format. Using these findings, paper and electronic prototype versions of a guide to general practice services have been developed.Conclusions In order to maximize the potential use of performance information by the public it is necessary to move beyond provider-led and professionally constructed approaches to information provision and ensure that the public is actively involved in the development of information sources. Such involvement produces a different kind of information to that currently available to the public. The findings of this study have important implications for policy. Most importantly, it seems that the traditional consumerist model underlying a policy of making comparative performance information available to the public to enable them to exercise choice between primary care providers may not be appropriate. An alternative model of information provision, which recognizes the public's commitment to their practice and is integrated with ÔsoftÕ sources of knowledge is more likely to engage and be of use to the public.

What Patients Want From Primary Care Consultations: A Discrete Choice Experiment to Identify Patients' Priorities

“…36 Providing information to patients about quality of technical care is challenging, as conventional clinical indexes of quality may not meet the needs of patients. 37 The value patients placed on seeing a physician who knew them well (relational continuity) was greater on the patient-centered care questionnaire than on the generic questionnaire. Relational continuity might have been expected to be less important when presented in the context of other patient-centered attributes, because both relational continuity and the patient-centered care attributes deal with aspects of the physician-patient relationship.…”

Consumers’ interpretation and use of comparative information on the quality of health care: the effect of presentation approaches

“…The dissemination of consumer experience information and other health‐care quality information has, however, had little impact on consumers’ active use of it so far 14–17 . Despite some findings that consumers have positive attitudes towards and interest in it, 18–20 there is only marginal evidence that consumers actually want to use the information 3,21–28 . Some research findings suggest that new or unsatisfied patients are interested 15,29,30 .…”

The design of a decision aid about diabetes medications for use during the consultation with patients with type 2 diabetes

“…The approach we used, with foundations in the design discipline and sometimes called design research, shares common elements with participatory action research and field ethnography in that patients and clinicians cooperate in the research with embedded researchers making direct observations [10,11]. Additionally, patients play a key role in evaluating the tangible artifacts created through iterative development to achieve the agreed-upon objectives of the project [12,13].…”