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Confidentiality has been the bedrock of sexually transmitted infection (STI) clinics in the UK since the Venereal Diseases Act 1917,1 which has been updated with each reorganisation of the NHS within England.2 Anyone attending a STI clinic is ensured confidentiality and anonymity beyond that routinely provided within the NHS by having separate registration systems, and separate case notes or electronic patient records, from other health service records. Investigations are ordered using a clinic number, not the person's name, and there is no routine communication with general practitioners (GP). Patients are also under no obligation to provide their real name.
This additional confidentiality is very important to some. Of school attendees aged 13–14 years, 56.3% rated confidentiality the most important feature of a sexual health service, and 46.1% would not want their GP to be aware of their attendance.3 59% of STI clinic attendees preferred to be seen in a specialist clinic rather than by their GP.4
The STD directions2 on confidentiality will cease to have legal effect when the Health and Social Care Act 2012 is fully implemented. This prompted a review of the legislation on STIs during late 2012, which suggested that additional confidentiality is unnecessary and that STI services should be regulated by the NHS Code of Practice on Confidentiality 20035 and NHS Information Governance principles6 as in other NHS services. The British Association for Sexual Health & HIV (BASHH) believed that the additional confidentiality and anonymity offered by STI clinics is such an established part of STI care that the views of service users needed to be sought and taken into account during any planned changes.
BASHH, therefore, performed a rapid national survey of views of STI clinic attendees about the proposed changes to the law.
BASHH produced an information sheet explaining the current legislation on confidentiality in STI clinics and the possibility of this being changed in line with other NHS services, followed by three questions. Additionally, details of gender and age were asked. This was circulated to all STI clinics in England for distribution to patients during January 2013. Clinics were asked to collect up to 100 patient responses each. The three questions were:
Q1. Do you agree with the suggestion that the specific law covering sexual health clinics should be replaced by the general rules on confidentiality within the NHS?
Q2. Would losing the specific law covering confidentiality in sexual health clinics make you less likely to attend a sexual health clinic?
Q3. How important was confidentiality to you in choosing to visit a sexual health clinic?
The responses were returned by the clinics to BASHH where they were entered onto a central database. The total answers and percentages were determined. Any associations between gender, age and between the responses to the individual questions were calculated using χ2 tests and ORs.
4017 patients answered the survey at 51 STI clinics throughout all regions of England; 48.5% were male (1917 male; 2039 female; 61 no response); 2.4% (96) were aged under 17 years, 45.8% (1807) were 17–24 years, and 51.8% were 25-plus years (2043; 70 no response); 61% did not agree with replacing the law on additional confidentiality (2409 disagreed; 1552 agreed; 56 no response), 58% felt loss of the additional confidentiality would make them less likely to attend a STI clinic (2284 less likely; 1680 not less likely; 43 no response), and 65.5% (2624) rated confidentiality as very important, 24.5% (984) as important, and 10% (399; 8 no response) as not important. Two clinics returned their results in aggregate form leaving 3795 patient respondents from 49 clinics where we could assess associations between individual answers. The results are shown in table 1.
There were no differences between women and men in disagreeing with changes or indicating feeling less likely to attend, but women viewed confidentiality as more important than men. Also, more men who disagreed with changes indicated they felt more likely to continue to attend than women (45% vs 38%; p=0.0178). Those aged 25-plus were more likely to disagree with changes and indicated feeling less likely to attend than those aged 17–24 years old. Under-17s also indicated feeling less likely to attend than those 17–24 years old. There was an association between disagreeing with changes and feeling less likely to attend in all respondents, but this was stronger in the under-17 s (75% vs 30%; p=0.0002) and those 25-plus (81% vs 45%; p=<0.0001); 79% of under-17 s rated confidentiality as very important. Rating confidentiality as very important was associated with wanting additional confidentiality (74% vs 53%; p=<0.0001), and feeling less likely to attend without it (84% vs 42%; p=<0.0001). Of those who felt less likely to attend, confidentiality was rated very important by 84% with only 1% answering not important.
This national service-user survey received responses from over 4000 individuals. Over 60% supported keeping additional confidentiality and anonymity for STI services, and indicated they would feel less likely to attend if this was removed. Two-thirds rated confidentiality as very important with only 10% rating it as not important. These findings are consistent with previous smaller surveys, which showed that confidentiality is the most valued aspect of care in sexual health services.3 ,7 ,8
The strength of this survey is that it was conducted in 51 STI clinics throughout all regions of England, and had over 4000 respondents, so the results are generalisable throughout England. There are a number of weaknesses as it had to be organised rapidly so the results could be used to inform the STI legislation review. Hence, we do not know the clinics’ survey response rates, or if the responders were representative of attendees in general, as clinics were not asked to collect these data. This may have introduced bias with those with the strongest opinions about confidentiality being more likely to complete the questionnaire. After the surveys had been distributed, feedback identified that the wording of Q1 was unclear to some participants, but any misinterpretation of Q1 will have underestimated the number supporting additional confidentiality rather than overestimating it.9 Dividing the ages into under 25 years and 25-plus years is standard, but the use of under-17 s is unconventional. We wanted to identify responses from young people as they often have specific views about confidentiality.3 The number of under-16 s attending STI clinics in England is small, so under-17 was chosen, but we still had a relatively small number which limits statistical interpretation.
Females viewed confidentiality as more important than males. Of those disagreeing with changing confidentiality, men felt more likely to continue to attend than women. The reasons for this are unknown, but possibly, alternative services are unfamiliar, or less acceptable, to men. These gender differences have not been reported before. 79% of under-17 s viewed confidentiality as very important in keeping with other studies in young people.3 Interestingly, those 25-plus were more likely to want additional confidentiality than those in the age group of 17–24 years. Those aged 17–24 may have recently participated in the National Chlamydia Screening Programme, much of which is delivered in community settings.10 This may have normalised STI testing and reduced concern about confidentiality. However, our findings indicate that confidentiality is important to most people irrespective of age. Many people choose STI services because of the additional confidentiality, so it is not surprising that those rating confidentiality as very important were more likely to want additional confidentiality and reported feeling less likely to attend without it. Indeed, of those reporting feeling less likely to attend only 1% regarded confidentiality as not important.
The UK comprises four nations and legislation varies between them. The STD Directions2 have never applied to Scotland, instead NHS Scotland has the National Sexual Health System, a secure national electronic patient record designed specifically for sexual health services. It offers complete anonymity but also the option for clinical information sharing between health boards with patient's consent. Wales and Northern Ireland have their own Codes of Practice on confidentiality in health and social care but both these refer to the STD Directions2 regarding confidentiality in STI clinics.
As an established practice in STI clinics since 1917, these results give clear support from service-users for maintaining additional confidentiality and anonymity. The outcome of the legislation on STIs review is that the Department of Health and the Health and Social Care Information Centre are to publish a new statutory Code of Practice on sharing patient identifiable information, which health care providers will legally have to follow. This will now include confidentiality in sexual health and will therefore ensure the continuation of additional confidentiality and anonymity in sexual health services, thereby reaffirming the recognition of its importance to service users.
The authors would like to thank all the patients and staff from the clinics who participated in the survey and Dr Alan Tang, Chair of the BASHH Clinical Governance Committee, and Neil Balmer, from Munro & Foster, who assisted in collecting the data from the clinics.
Contributors JDW conceived the study. JDCR and JAW produced the questionnaires. HP produced the database. HP and JDW analysed the data. All authors contributed to writing the paper. HP and JDW are the guarantors for the study.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.