Department for Health, Social Services & Public Safety (DHSSPS)
Tuesday, 7 October, 2014

These comments were submitted on behalf of the Federation of the Royal Colleges of Physicians of the UK.

Government policy places a strong emphasis on the need to share relevant personal information across organisational and professional boundaries in order to ensure effective co-ordination and integration of public services. Equal emphasis is placed on the security and confidentiality of personal information in this process.

The Health and Social Care Sector (HSC) may currently share personal information as long as the identity of the individual remains protected. The sharing of information has proven essential in the development and delivery of services and the undertaking of research.

However the current arrangements have limitations and in other jurisdictions (including England and Wales) legislation is already in place to allow for the sharing of user identifiable information for secondary use1 in limited or specific circumstances that can be controlled. This provision has been shown to improve patient care through such things as the ability to plan, commission and manage services whilst still complying with the safeguards in place to protect how personal information is used.

In this consultation document the Department of Health, Social Services and Public Safety sought views on a proposal to introduce primary legislation which would extend the use of service user identifiable information, to include sharing for secondary use in controlled circumstances. This proposal applies to the processing of both health and social care information.

Under the proposals anyone applying to make use of HSC data will be required to demonstrate to an advisory group that the use of service user identifiable information is absolutely essential to the successful outcome of their work; that similar results could not be obtained by using anonymised or pseudonymised service user information; and that it is either impossible or impracticable to gain consent from every individual whose data may be used. Where research is involved, ethical approval will also be required.

Based on the experience in other areas, adopting this approach would allow delivery of significant benefits in the HSC. Areas that could benefit include the management of health and social care services; improved public health monitoring; accurate anddetailed disease registries; and the effective monitoring of infectious diseases.

The primary legislation would allow information to be shared within the HSC family to better inform a range of health and social care services and would enhance the collaborative, professional approach to the management and commissioning of these services.

Sharing information about the care service users receive helps the understanding of the health needs of everyone and the quality of the treatment and care provided. It would assist research by supporting studies that identify patterns in diseases, responses to different treatments, and the effectiveness of different services. This could lead to economic benefits through improving the overall health of the population of Northern Ireland. The opportunities created within research could also bring further economic benefits through increased opportunities for job creation within this sector.

In delivering the benefits outlined we will ensure there are robust safeguards in place which prevent inappropriate sharing of personal information.

This consultation was aimed at all stakeholders with an interest in the processing of HSC service user information including: members of the public; community and voluntary groups; health and social care service providers; commissioners; and academia.

Federation of the Royal Colleges of Physicians of the United Kingdom Department of Health Social Services and Public Safety

Caring for you and your information - Consultation on proposals to use health and social care service user identifiable information in controlled circumstances

The Federation of Royal Colleges of Physicians of the UK (the Federation) is pleased to respond to the Department’s consultation on proposals to use health and social care service user identifiable information in controlled circumstances.

Introduction

Q1. Do you agree with the proposal to bring forward legislation to enable the Department to regulate the use of service user information for secondary purposes?
Yes.  The Federation strongly supports the proposals to increase the secondary use of confidential data, with appropriate safeguards.  Much of what is proposed would bring Northern Ireland into line with what happens in other parts of the UK.  

Q2. Do you agree that the Department should make provision in the legislation for the establishment of an advisory group to consider applications for the use of service user identifiable information?

YesThe proposals for an advisory group to oversee this process are a sensible way to provide reassurance for the public.  However, the advisory group needs to be able to process requests in a timely manner (ideally within a few weeks) to ensure that data are current and therefore meaningful and relevant to current services.  We think it is reasonable for the advisory group to require those seeking access to data to demonstrate that their purposes could not be served with anonymised or pseudonymised data.

Q3. Do you have any other comments on these proposals?

There are benefits to this in terms of research and public health as has already been recognised, but there are also significant benefits in terms of national clinical audits and confidential enquiries. 

There are added benefits for Northern Ireland in that social care data are included which will help especially in dealing with chronic conditions and conditions affecting elderly people.

The secondary use of data in these circumstances can support: 

  • Individual clinicians and clinical teams to understand the quality of care they deliver, to benchmark their results against national performance and hence to identify areas for improvement
  • Local health and social care providers to understand performance at that level against national benchmarks; and
  • Health and social care policy makers to understand the impact of policy changes.

There are particular benefits in being able to link data across care pathways (eg between primary and secondary care or secondary and social care) and this requires individual patient identifier to be retained until such linkage can be undertaken.

Previous experience with consent models (ie requiring individual patient consent to any secondary use of healthcare data) has been disappointing.  For logistical and practical reasons, it is only possible to achieve individual patient consent in about 10% of instances, which is too low a yield to give meaningful data about services.  This would be in keeping with experience of others across the UK.

We recognise that there is public concern about appropriate use of confidential data, the need to have necessary data security and the need to build strong safeguards into any proposals.

Q4. Is there another model which we should consider?

NoThe model proposed for NI has essentially been trialled in England and Wales for some years now and, if working satisfactorily, we see no reason to propose another model.

Q5. Do you agree with the conclusions reached by the Department in the preliminary Equality and Human Rights screening?

Yes.  No further comment.

Q6 Do you agree with the Department’s Privacy Impact Assessment that any adverse impact on privacy is mitigated by the benefits to society, the safeguards already in place and the further controls proposed?

Yes.  With the appropriate safeguards in place the benefits of introducing this piece of legislation outweighs the risks.

Q7. Do you have any views on the conclusions reached by the Department to screen out from further assessment the implications of the proposals in respect of:-

(a) economic impacts; (b) social impacts; (c) rural impacts; (d) environmental impacts; (e) victims; (f) community safety; and (g) others?

No specific comments.

 

Further Comments

Please use the box below to insert any further comments, recommendations or suggestions you would like to make in relation to this proposed legislation.

No specific comments.