Almost two thirds of HIV and sexual health clinic attendees questioned about electronic patient records (EPR) and record sharing do not want their GP informed of their visit, according to the results of a Scottish study recently published online in the journal, Sexually Transmitted Infections.
The study suggests that without substantial patient education, establishing EPR and wider record sharing may inadvertently erect barriers to HIV and STI testing and treatment, since one-in-four respondents said that they that they would be less likely to attend sexual health clinics if electronic sharing of their sexual health records occurred.
In the UK, there has been widespread debate in the national media regarding database security and the changes that are ongoing in the way that the various parts of the National Health Service (NHS) – from hospital-running NHS Trusts to individual GP surgeries – plan to store and distribute sensitive patient information.
In fact, the tensions between optimal clinical care and the need for maintaining confidentiality is a critical issue, as recent guidelines from UNAIDS and BASHH/BHIVA make clear.
With this in mind, investigators from the New Royal Infirmary, in Edinburgh, Scotland, sought to examine patient attitudes to the current trend towards the sharing of patient information across the National Health Service (NHS).
In particular they wanted to ascertain patient attitudes to proposals to routinely send clinic letters to GPs and to share their sexual health information electronically via a common IT system.
The secondary aim of the study was to determine any significant factors associated with patient desire for confidentiality, for which the bar is currently set higher in sexual health clinics than elsewhere in the NHS.
Out of a total of 800 individuals who attended the sexual health and HIV clinic during two weeks in the Spring of 2006, 536 (67%) attendees completed a questionnaire concerning their opinion on letters to GPs, sexual health clinic data sharing, and personal presumptions regarding the implications of being tested for HIV on future mortgage and life insurance applications.
After nine responses were discounted due to incomplete data, a total of 527 (39% women, 61% men) respondents fully completed the questionnaire, 213 (40%) of whom had attended the clinic more than once.
Almost two thirds of respondents (337, 64%) disagreed with the proposal that their GP should routinely receive letters following their attendance at the clinic. A minority (187, 35%) agreed with the proposal, and three (1%) failed to express a preference.
Factors significantly and independently associated with agreement to GP contact included: an initial GP referral (p<0.001), being heterosexual (p<0.05), and not considering HIV testing to have negative implications for future mortgage and life insurance applications (p<0.05).
The investigators note, however, that “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.”
However, when further questioned on attitudes to GP access to their sexual health information via an electronic database just over half (291 or 55%) approved, and 231 (44%) disagreed; five (1%) failed to reply.
Nevertheless, one in four (128 or 24%) respondents said that they would be less likely to attend sexual health clinics if record sharing via electronic database occurred.
The investigators point out that a limitation to their study is that “the questionnaire did not specify exact details regarding the information that would be included in a clinic letter to the GP (the actual question 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 regarding 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.”
They note that for some patients, “concerns about information sharing may be consequent to fears regarding the implication of HIV testing records on future mortgage and life insurance applications.” This, despite the most recent guidance from the Association of British Insurers which notes that a negative result will “not, of itself, have any effect on…acceptance terms for insurance.”
They suggest that “patient education may increase the level of acceptability” of record sharing, either via letter or electronically. “However,” they add, “given the current pressures on most [sexual health] services, it seems unlikely that this can be easily implemented in most clinics.”
“We therefore need to be cautious,” they conclude, “when endeavouring to adopt common systems for the purpose of service improvement, 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.”