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BASHH patient survey on changes to the confidentiality laws: the importance of phrasing and order of survey questions
  1. Cara Saxon,
  2. Ashish Sukthankar
  1. Manchester Centre for Sexual Health, Central Manchester University Hospitals NHS Foundation Trust, Manchester, UK
  1. Correspondence to Dr Cara Saxon, Manchester Centre for Sexual Health, Central Manchester University Hospitals NHS Foundation Trust, The Hathersage Centre, 280 Upper Brook St, Manchester M13 0FH, UK; carajsaxon{at}gmail.com

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Sexual health (SH) and HIV services in England and Wales have separate legislation (National Health Service (NHS) VD Regulations 1974 and STD Directions 20001 ,2) to allow patients greater anonymity when accessing care. Following the Health and Social Care Act of 2012, the Department of Health is updating the laws around confidentiality and wishes to repeal the Regulations and Directions so that the same laws apply for all NHS patients. British Association of Sexual Health and HIV (BASHH) is opposed to these changes and carried out a survey to garner patient opinion. Our clinic participated in this survey.

The survey form explained the current laws, proposed changes and their potential impact on care. Patients then answered three questions in the following order:

  1. Do you agree with the suggestion that the specific law covering SH clinics should be replaced by the general rules on confidentiality within the NHS?

  2. Would losing the specific law covering confidentiality in SH clinics make you less likely to attend a SH clinic?

  3. How important was confidentiality to you in choosing to come to a SH clinic today?

The results of the national survey can be found on page 354. While compiling local data, we were surprised by the number of patients ‘agreeing’ with the proposed change—55% (59/108). Furthermore, 42% (25/59) of patients ‘agreeing’ with the change felt they would be less likely to attend a SH clinic and 59% (35/59) rated confidentiality as ‘very important’. These findings seemed inconsistent with each other and led us to doubt patients’ understanding of the first question.

We repeated the survey locally using a restructured and amended questionnaire:

  1. How important was confidentiality to you in choosing to come to a SH clinic today?

  2. Would losing the specific law covering confidentiality in SH clinics make you less likely to attend a SH clinic?

  3. Do you agree with the suggestion that the specific law covering confidentiality in SH clinics should be dropped?

In the amended survey, 66% (81/123) rated confidentiality ‘very important’, 59% (72/123) would be less likely to attend a SH clinic and 80% (99/123) did not agree with the proposed changes. These results are strikingly different supporting our suspicion that patients were misunderstanding the first question. The quality of any survey output is critically determined by both the wording and order of questions asked. Sir Appleby demonstrates this rather humorously in an episode of BBC Two's Yes Prime Minister in 1986.3 ,4

BASHH, and we, believe that any updates to the Regulations and Directions should allow services to maintain separate clinical systems and records in order to preserve the anonymity valued by our patients. It was hoped that the patient survey would support this opinion; however, we are concerned the results will underestimate the proportion of patients who do not agree with the proposed changes.

Acknowledgments

We would like to acknowledge Helen Parker, Jonathan DC Ross, John A White and Janet D Wilson (on behalf of the British Association for Sexual Health and HIV) who designed and conducted the national survey on behalf of BASHH, please see page 354 for the full results.

References

Footnotes

  • Contributors AS generated the idea and initiated the alternative survey. CS analysed the survey results and wrote the first and final drafts of the letter. AS contributed to the revisions of the letter.

  • Competing interests None.

  • Provenance and peer review Not commissioned; internally peer reviewed.

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