How we did it
We looked at the information already being used by NHS boards, information produced by the Scottish Executive Directorate of Health and Wellbeing, and information produced elsewhere in the UK. We drafted three alternative patient information leaflets using different levels of detail. We also consulted on a leaflet on confidentiality produced by the Scottish Executive.
We commissioned an experienced researcher to conduct 16 focus groups including four with members of the general public, and eight with people who either might have particular concerns about confidentiality, or were likely to be better informed than most members of the public. These eight groups were with:
- Cancer patients
- Arthritis patients
- Mental health service users
- Older people
- Staff from voluntary sector patient groups
- Health council staff
- Gay men
Four groups were also arranged with NHS staff working in different settings.
We asked participants to prioritise the information which should be contained in the leaflet.
The most important issues were:
- Who has access to personal health information and why
- What data protection rights exist
- What safeguards there are for protecting information.
As this was the first leaflet produced by HRIS, it was important to get the level of detail, style of language and design right. Participants told us that they wanted:
- easy, simple language
- a short leaflet
- reasonably large font size
- small chunks of information
- question and answer format
- examples to illustrate
- bullet points
- how to get more information
- how to complain if confidentiality is breached
- an explanation as to why the leaflet is being produced
- no jargon
We decided that after the initial consultation we would redraft the information and send it out with a structured questionnaire to all those who were willing to comment among those who had taken part in the initial focus groups. Four additional focus groups were also undertaken at this stage, two with members of the public, one with a patient group, and one with staff and members of a local health council. More detailed questions were asked about font size, design, use of bullet points, layout and so on. At this stage in the consultation 95% of those who completed the questionnaire found the language easy to understand.
The leaflet was then checked for legal accuracy.
Page last edited: 07 October 2009