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Faculty of Public Health Of the Royal Colleges of Physicians of the United Kingdom Working to improve the public’s health
UK Faculty of Public Health briefing statement on the Health and Social Care Information Centre Consultation on the Code of practice on confidential information About the UK Faculty of Public Health The UK Faculty of Public Health (FPH) is committed to improving and protecting people’s mental and physical health and wellbeing. Our vision is for better health for all, where people are able to achieve their fullest potential for a healthy fulfilling life, through a fair and equitable society. We work to promote understanding and drive improvements in public health policy and practice. As the leading professional body for public health specialists in the UK, our members are trained to the highest possible standards of public health competence and practice – as set by FPH. With our 3,300 members, based in the UK and internationally, we work to develop knowledge, understanding and promote excellence in the field of public health. For more than 40 years we have been at the forefront of developing and expanding the public health workforce and profession. If you can help us develop a short case study which demonstrates good practice in information handling, please provide your contact details below: The UK Faculty of Public Health would welcome the opportunity to develop a short case study which demonstrates good practice in information handling. Do you have any further comments or feedback on the draft code of practice? It is challenging to strike a balance between making the optimal use of data and ensuring the best protection for the people whose data are being analysed. In general, this document comes across on the side of being negative about use of data. It is unclear to what extent the document applies to HSCIC itself and to what extent it also applies to others who use data it holds. It is unclear why children’s social services are excluded. It does not appear to cover cross boundary flows with other countries of the UK or collaboration with other countries. 1. As far as research uses are concerned, this information would have to be supplied to get funding. It is unclear how HSCIC will be in a position to provide further assessment or assess the protocols of non-research applicants, especially those obtaining data to do analyses for commercial gain. 2. The points about transcription are unclear, especially given the use of scanned letters in the NHS. It should be clarified whether the activity related to information standards is new of the extent to which it is a continuation of work previously done by the Information Standards Board. 3. This section underestimates the extent to which members of the public and organisations to which they belong want information. Will information be available about the demographic characteristics of people who opt out, in order to adjust analyses for this. This will be important in areas with high opt out rates. 4 St Andrews Place London NW1 4LB Tel: 020 7935 0243 Fax: 020 7224 6973 Email:
[email protected] Website: www.fph.org.uk Registered Charity No: 263894
4. Training of staff is important, but surely there should be some stipulation about supervision by professionals with professional codes of conduct such as health professionals and statisticians. While it is important to minimise the burden of data collection, especially by avoiding duplication, this should be balanced by the public good to be derived from the information. The comments about linkage are very negative, especially given that this is a major way of adding value to data and reducing the burden of data collection. 5. As in Section 1, these aspects will be covered in funding applications for research and in ethics and Section 251 applications where required. It is unclear how HSCIC will assess this for other data users, especially those producing analyses for commercial gain. Longitudinal analyses are not mentioned. 6. In discussing anonymisation, it would be useful to cross-reference to ONS’ documents on disclosure control and also the rules for the use of its Virtual Microdata Laboratory and aim for some compatibility. We support greater use of the National Statistics Code of Practice for publication of data rather than simply producing them as management information. It is difficult for research users to comply with the Code of Practice because of their reliance on the practices of the academic journal industry. There is no mention of commercial organisations whose analyses are made available only to those who pay for them. 7. In research use, it is expected that data are retained in case the findings are challenged. If the researchers are expected to delete their work at the end of the project, this is not possible. Facilities should be available for archiving datasets and analyses within HSCIC, so that they can be released if further analysis is required to respond to queries or challenges.
4 St Andrews Place London NW1 4LB Tel: 020 7935 0243 Fax: 020 7224 6973 Email:
[email protected] Website: www.fph.org.uk Registered Charity No: 263894
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