Objectives: While genitourinary medicine (GUM) records have historically been kept separate from other medical data, patient information is increasingly shared across the NHS. There are advantages to this in GUM: GPs are increasingly involved in delivering targets for STI screening and sexual health services. We ascertained patient attitudes to proposals to routinely send clinic letters to GPs and to share GUM data on common IT systems.
Methods: Clinic attendees in the period 24 March to 5 April 2006 completed a questionnaire concerning their opinion on letters to GPs, GUM data sharing and personal presumptions about the implications of having HIV testing. Patient demographic data, clinic test results and questionnaire answers were analysed using SPSS.
Results: Of 527 patients who completed the questionnaire, 187 (35%) agreed to GP contact, 337 (64%) declined and 3 (1%) failed to express a preference. Factors significantly associated with agreement to GP contact included heterosexual orientation (p<0.05), initial GP referral (p<0.001) and not considering HIV testing to have negative implications for future mortgage and life insurance applications (p<0.05). When questioned on attitudes to GP access of computerised results, 291 patients (55%) approved, 231 (44%) disagreed and 5 (1%) failed to reply; 128 patients (24%) said that they would be less likely to attend GUM if this occurred.
Conclusions: Mode of referral and concerns about the implications of HIV testing affect patient preference on information sharing. A significant proportion of patients still want GUM visits to be anonymous and a policy of sharing GUM data on common IT systems may deter patient attendance.
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From the inception of the first venereal disease clinics in the UK, the assurance of patient confidentiality and anonymity has remained among the guiding principles of care. This principle was established by legal statute: article 2 of the 1916 Public Health (Venereal Diseases) Act required that “all information obtained in regard to any person treated (for venereal diseases) shall be regarded as confidential”. Subsequent NHS regulations in 19741 and 20002 required genitourinary medicine (GUM) records to be kept separate from other medical data; however, the validity of these acts in law is now questionable, and the practice is increasingly difficult to maintain with the modernisation of GUM services. Over 25% of patients seek care through general practice before accessing the GUM clinic3 and general practitioners (GPs) already provide a significant proportion of STI care in the UK.4 Communication with GPs is vital if they are to be fully involved in STI care as has been advocated.5
The Edinburgh GUM clinic, in common with many others, only updates GPs on a patient’s clinic attendance in reply to an initial referral letter. A discrete clinic patient identification system ensures that computerised laboratory results remain unlinked from other medical test results (which are open access to other hospital practitioners and GPs). However, the integration of IT systems across the NHS, and the merger of GUM and family planning services, may require a review of confidentiality policies.
The primary aim of our study was to ascertain patient attitudes to proposals to routinely send clinic letters to GPs and to share GUM data on common IT systems. Although patients accessing GUM clinics directly differ in risk but not attitudes from those coming via primary care,6 age, gender and other factors appear to influence attitudes to confidentiality7 8 and choice of care provider.9 10 Concerns around HIV testing may also be a significant factor in service choice.11 Hence, the secondary aim of the study was to determine any significant factors associated with patient desire for higher levels of confidentiality.
A questionnaire was offered to all Edinburgh GUM department clinic attendees (that is, general open access and appointment clinics, HIV clinics, men who have sex with men (MSM) clinics and young persons’ clinics) in the period 24 March to 5 April 2006. Data gathered included patient age, gender, sexual orientation, motivation for clinic attendance, clinic referral pathway, patient preferences about the routine sending of GUM clinic letters to GPs and GP access to computerised GUM clinic results.
The questionnaire also explored patient assumptions concerning the implications of having HIV testing for future mortgage and life insurance applications. Patients’ case notes were reviewed to determine HIV sero-status and details of any STIs diagnosed at clinic visit.
Final data analysis was performed using SPSS 14.0 software. The χ2 test was used to determine any significant variables associated with patient preferences about routine GUM–GP communication and common result databases.
Altogether 800 patients (480 men and 320 women) attended the Edinburgh GUM department during the study period; 536 (67%) completed the questionnaire.
Following the discounting of nine questionnaires due to incomplete data, 527 patients, 207 women (39%) and 320 men (61%) were included in the study. Of these, 213 patients (40%) had previously attended the department.
A total of 187 patients (35%) agreed to GPs routinely receiving clinic letters following a GUM department attendance, 337 patients (64%) disagreed and 3 patients (1%) failed to indicate a preference.
Data from the 524 patients who expressed any preference about routine GP–GUM communication was analysed further to determine any associated variables (table 1).
Patients’ referral pathway to GUM, sexual orientation and preconceptions about the implications of HIV testing on future mortgage and life insurance applications were all significantly associated (p<0.05) with preference about routine GUM–GP clinic letter contact. These factors remained significant (following adjustment for one another) in predicting agreement for contact when tested together by multiple logistic regression analysis.
When questioned about preferences in relation to the sharing of GUM clinic results on common IT systems, 291 patients (55%) agreed, 231 patients (44%) disagreed and 5 patients (1%) failed to indicate a preference. Altogether, 128 patients (24%) said that they would be less likely to attend GUM if this occurred.
Unsurprisingly, the factors identified as significantly associated with patient disagreement with common result databases were identical to those linked with patient disagreement with routine GUM–GP communication: clinic attendance independent of a GP referral (p = 0.002), MSM/bisexual orientation (p<0.001), assumption of an adverse effect of a HIV test on future mortgage applications (p<0.001) and assumption of an adverse effect of a HIV test on future life insurance applications (p = 0.016).
Of the total 527 patients who completed the questionnaire, 25 had been referred through another health professional. Of these, 7 (28%) indicated agreement to the health professional receiving a GUM clinic letter, 17 (68%) declined and 1 (4%) failed to indicate a preference.
Despite the assumed reduction in stigma associated with sexual health and STIs, a significant majority (64%) of patients attending our service did not want their GP informed of their visit. This is in contrast to a previous study by Winceslaus et al,12 which demonstrated 80% uptake of an offer of a self delivered GUM clinic letter to GPs. This uptake was based on a detailed understanding of the contents of the letter and reserving the option of not delivering it to the GP. Although patients referred by their GP in our study were generally more likely to agree to GP contact, 45% of this group still preferred this not to occur.
A significant limitation of our study is that the questionnaire did not specify exact details about the information that would be included in a clinic letter to the GP. (The actual question written was “should we routinely send a letter about your clinic visit and the results of any tests to your GP, for inclusion in your records?”) Thus, patients’ knowledge and preconceived ideas about the purpose and content of information provided in letters to the GP may have played a role in their agreement or disagreement with the same. A more detailed study exploring the extent of patient understanding and prejudices about communication with GPs may be of value in developing the content and means of delivery of appropriate patient education. Our study was intended to replicate a practical implementation of a service improvement (that is, a simple question added to the clinic patient registration sheet: “Do you wish us to write to your GP about your visit”).
For some patients, concerns about information sharing may be consequent to fears about the implication of HIV testing records on future mortgage and life insurance applications.11 However, the Association of British Insurers (ABI) guidance on this matter is that that a negative HIV test… “will not, of itself, have any effect on… acceptance terms for insurance”.13 Thus, further education about this ruling may also help address patient concerns.
In conclusion, many patients in our study remained unhappy about the inclusion of sexual health information in common medical records and result databases. Patient education may increase the level of acceptability. However, given the current pressures on most GUM services, it seems unlikely that this can be easily implemented in most clinics.
We therefore need to be cautious when endeavouring to adopt common systems for the purpose of service improvement so that we are not erecting barriers to access. It appears that 90 years on from the establishment of the first venereal disease clinics in the UK there is still a need to reserve the option of separate GUM records and data systems to enable desired levels of patient anonymity, while trying to improve communication with GP colleagues.
A significant proportion of patients attending GUM clinics still decline routine clinic letters to their GP and the sharing of GUM data on common IT systems. Mode of referral, sexual orientation and concerns about the implications of HIV testing are factors affecting patient preference on information sharing.
Competing interests: None.