Computer support for recording and interpreting family histories of breast and ovarian cancer in primary care (RAGs): qualitative evaluation with simulated patients

Semistructured interviews

JE performed the interviews, presenting himself as a researcher from the General Practice Research Group. Each doctor was first interviewed about his or her attitudes towards computers and involvement in genetics. The doctor was familiarised with RAGs and then used the program in two consultations with an actor playing a woman concerned about her family history of cancer (see box). The pedigrees were based on patients referred to the Oxford Cancer Genetics Clinic. The consultations were videotaped and followed by a semistructured interview with both doctor and actor, the video being used as a prompt to questioning.18 Interviews principally explored the ease of use of RAGs in the consultation and the effect of the program on the doctor-patient interaction. Issues identified during the earliest interviews defined the subjects explored in more depth in subsequent interviews, thus establishing the field validity and transferability of emerging concepts.19 Interviews were audiotaped and transcribed verbatim.

Analysis

The interview transcripts were entered into the NUD*IST program 21 and analysed using a grounded theory approach 22 by JE and RW with advice from SZ. During the analysis, JE and RW met regularly to discuss the emerging themes and resolve any differences in interpretation. Each transcript was open coded, whereby each phrase was analysed to create key categories. A coding framework was developed and modified during the analysis of subsequent interviews according to the emerging concepts. Relationships between different categories were identified by constant comparison between and within transcripts and by comparison with existing literature. Videotapes of the consultations were reviewed, and observations were integrated into the developing conceptual framework.23

All participants were sent a written summary of the analysis and invited to comment. We received responses from three doctors, who agreed with the main themes described. Additional minor comments helped refine the conceptual framework.

Using computers for expert advice in genetics

The participants viewed genetic information as specialist, complex knowledge pertaining to a new explanation of disease and allowing precise assessment of individuals' risk. The general practitioners accepted their traditional gatekeeper role in the new subject of genetics and felt it appropriate for them to identify people at increased genetic risk and to refer them for specialist counselling. They admitted that they found assessing genetic risk difficult and felt uncomfortable when doing so. This was true even of the two doctors who had attended courses on cancer genetics. The doctors managed this discomfort in a variety of ways: some referred all patients concerned about their family history of cancer, some assessed risk using a heuristic approach reflecting an incomplete memory of referral guidelines, and others attempted to reassure patients in the face of uncertainty.

The local cancer genetics guidelines, mailed to all Oxfordshire practices in 1997, were unfamiliar to most of the participants. Two doctors did recall them: one sat on the local medical council, which appraises all Oxfordshire guidelines, and the other was involved in a project evaluating an electronic version of local guidelines. Participants mentioned the problem of “guideline chaos,” in which general practitioners were inundated with paper guidelines of varying quality, with resultant difficulty in storage and accessibility. Computers were seen as a potentially important method of implementing guidelines and restoring order to the perceived chaos. Furthermore, computers were seen to lend themselves to the complexity of genetic risk assessment for multifactorial diseases such as cancer.

Participants reflected on the skills required to use computers effectively in clinical practice and the limited training received. These included general keyboard and mouse skills, specific skills for particular programs, and, perhaps most importantly, the skill of using the computer within the consultation. Even the doctors who were more familiar with computers tended to enter little data during routine consultations because of pressures of time and concerns about the effect of the computer on doctor-patient communication (the “third party effect”).

Using RAGs in the consultation

Most of the participants found RAGs easy to use, but certain errors were commonly made because of the interface. An important concept that emerged related to control of the consultation. The doctors felt relatively in control during data entry and tended to stop considering the meaning of the information they were entering into RAGs. Thus, when the report was generated, with the risk score highlighted amid other text, doctors were surprised and felt a sudden loss of control. When the high risk message for case 1 appeared on the screen, doctors commonly felt panic and wanted to turn the screen away from the “patient” to allow them to regain control and break the bad news more gently. With the low risk message of case 2, doctors were often surprised and, indeed, may have already tried to pre-empt the computer and warn the “patient” that she was at increased risk. This conflict between information given by the doctor and that provided by the computer further impaired the doctor's control of the consultation and made it difficult to reassure the low risk patient. The speed with which the computer generated the report added to this sense of losing control.

The doctors often felt unable to access additional information from the computer to support the management decision they were sharing with the patient. This related to poor highlighting and structure in the report. When they found the explanations provided by the program the doctors used this information to help regain control and reassure the patient.

Participants were concerned about the third party effect of the computer and missing important eye contact and subtle non-verbal cues. They were uncomfortable during silences when entering data and reading the report, which made them speak before they had a chance to assimilate the report fully. To counter the third party effect, doctors chose to share the computer screen with the patient. This worked well when generating the pedigree since there was a sense of joint effort and shared understanding. However, nearly all the doctors seemed uncomfortable sharing the screen when the report appeared, particularly for the high risk message.

Concerns about time were common, especially over recording a pedigree, as this was a period spent principally attending the “third party.” The consultations took 10-25 minutes, depending on the doctors' computer skills and the actor's responses. The doctors proposed various time management strategies. Some accepted the natural variation in length of consultation in primary care, some suggested double appointments or staging the consultation, and others opted to delegate data entry (such as to the practice nurse). Staging and delegation had the advantage that they would avoid generating the risk report with the patient present. Thus, the doctors could maintain control of the consultation and could prepare themselves to break the bad news without sharing the information on screen with the patient for the first time.