Protecting the confidentiality of service user information

A Law Centre (NI) response

November 2007

1.  Introduction

1.1  Law Centre (NI) is a public interest law non-governmental organisation.  We work to promote social justice and provide specialist legal services to advice organisations and disadvantaged individuals through our advice line and our casework services from our two regional offices in Northern Ireland.  It provides a specialist legal service (advice, representation, training, information and policy comment) in five areas of law: immigration, social security, community care, mental health and employment.

1.2  The work of Health and Social Care staff is of particular relevance to our mental health and community care services.  The community care legal representation service deals with personal and support services for a range of people including those who are elderly, ill, disabled, incapacitated and carers.  Our community care advice line operates from both our offices and our community care legal representation service provides training for trusts and social services.  The mental health legal representation service offers legal representation for issues around admission to hospital for assessment, capacity, treatment, discharge delay, community services and other mental health related legal issues.

1.3 Our services are provided to almost 500 member agencies.  Members include local Citizen Advice Bureaux, independent advice agencies, local solicitors, trade unions, social services, probation offices, constituency associations of local political parties, libraries and other civic organisations. 

1.4  We welcome the opportunity to respond to this consultation document.  We have made some general comments in response and address some of the questions which were posed for consultation.

2. General Comments

2.1 We support the development of the Code of Practice on Protecting the Confidentiality of Service User Information to improve the ways in which Health and Social Care (HSC) bodies handle service users’ personal information.   We welcome the provision of one consistent approach across HSC bodies for staff dealing with service user information.

2.2 We welcome further information regarding how the Code will be disseminated to health and social care staff and whether the guidance will be publicly available or whether only HSC bodies will receive it.  We would recommend that the Code be accessible to the wider population.  If publicly available we trust that the final document will be available in various formats and that translations into minority languages will also be available.

2.3  An effective Code of Practice should also have clear review mechanisms in place and provide access to independent advocacy services to assist complainants in any complaints process if the Code is not appropriately applied by HSC staff.  Aspects of the current system in Northern Ireland do not meet these criteria and we hope that the proposed changes will remedy this defect.

2.4 We support a rights-based approach to health services in Northern Ireland.  Under a rights-based approach to health, human rights should be used as a framework for health development and the human rights implications of any health policy, programme or legislation should be assessed and addressed prior to implementation.  We note the references within the Code to both the rights of service users and the obligations these rights place upon HSC staff.  The inclusion of appendices on the European Convention of Human Rights and the Human Rights Act as part of the Code are also welcome. 

3.  Specific Questions

Q1 Is the Code about the correct length (too long/too short)?  If not, what should be included/left out?

3.1 The Code is very detailed and relies heavily on the use of appendices to include relevant additional information.  The wording of the Code is somewhat technical in places and often repetitive.  Consideration should be given to the general lay out of the Code as it is not in an easy to read format.  The inclusion of a definitions section and clarification of the difference between ‘ethical’ and ‘legal’ obligations and principles may prove useful.  Consideration should also be given to the inclusion of an Executive Summary to provide a clear and concise outline of the contents of the Code. 

Q2 Does the Code address the right range of issues?  If not, what else would you like to see explicitly addressed?

3.2 The Code addresses a good range of issues and certainly covers the main areas of concern regarding protecting the confidentiality of service user information.  Naturally it is difficult to cover all eventualities within a Code of this nature we recommend, therefore, that the Code also refer to the availability of training on the issue to ensure that the Code is effectively used by HSC staff.

3.3  We welcome further information regarding how the Code will be launched and what measures will be taken in advance of the release of the Code to ensure that HSC staff are aware and prepared to meet the obligations within the Code.  The Code places a large degree of responsibility on HSC staff to assess and carry out the required procedure.  Consideration needs to be given to the allocation of resources for specific training on dealing with protecting confidentiality. 

Q3  Are there any paragraphs which you thought needed greater explanation or clarification? 

3.4 The paragraphs within the Code which refer to advocacy in one form or another should include a definition of advocate and further explanation of the role and purpose of an advocate.  We welcome the recognition in the Code that in some circumstances it will be appropriate to consult with a legal representative, parent/guardian, carers or advocate.   Access to support can often help a service user present his or her opinion effectively and advocacy services are an important way of enabling people to make informed choices. 

3.5 HSC staff should also be encouraged to recommend the use of an advocate and advocacy services should be available to all service users if required.   We recommend the Code provide more detail on the issue of patient advocacy and the importance of ensuring that a patient has an independent advocate to protect his/her interests.  Evidence establishes that the provision of an advocate increases a person’s ability to participate in their care and treatment and this will enhance their access to information and better informed decision-making. 

3.6 The issue of capacity should be better highlighted within the Code rather than included as a sub heading in Chapter 3.  Further we would recommend that the information relating to capacity be termed in positive language rather than the negative ‘lack of capacity’ as used within the draft Code.  The Code should make clear that there must be an initial presumption of capacity.

3.7 Ensuring the correct approach is all the more critical in a situation where a person’s decision-making is impaired by their mental disorder and when their health, welfare or safety or the safety of others may be jeopardised by a refusal to consent to treatment which would be of benefit to them. In such situations, it is generally accepted that it can sometimes be right for society to override the individual’s right to self-determination, for their benefit. Clearly, it is important that an individual’s rights are only overridden in specific well-defined circumstances and under the controls put in place by legislation and greater mention should be made of these issues within the Code.

Q4 Is the distinction between the 3 main purposes for considering uses or disclosures clear and useful?  If not, what different approach would be clearer or more useful?

3.8  The distinction between the 3 main purposes for considering uses or disclosures is reasonably clear within the Code.  While we appreciate the issues of consent and capacity, which affect these main purposes, are complex and dependent on a variety of factors, the section relating to consent is very wordy and repetitive and would benefit from simplification to ensure that this important issue is clearly conveyed to HSC staff. 

Q5  Is it clear when implied consent is sufficient and express consent necessary for the use and disclosure of service user information?  If not, how could this be clarified?

3.9 It is not clear from the current draft of the Code when implied consent is sufficient and express consent necessary for the use of disclosure of service user information.  Further clarification on the distinction between implied and express consent is vital to ensure that the correct decision regarding any disclosure of service user information is made by HSC staff.  The distinction could be clarified by the inclusion of a definition of each type of consent within a definitions section as stated in paragraph 3.1.  Consideration should also be given to the drafting of a set of criteria for HSC staff to follow in order to determine which category of consent should apply. 

3.10 Generally within the Code we believe there is insufficient explanation of the importance of capacity and the need for a service user to consent to the disclosure or use of confidential information.  Consideration of these issues is timely given we are aware that the Law Commission is undertaking preparatory work on the possible introduction of new capacity legislation to bring Northern Ireland into line with the rest of the UK. 

3.11 We agree that capacity legislation should be underpinned by the principle that every adult should be assumed to be capable of making his/her own decisions unless proved otherwise.  The focus and principle of capacity legislation must be centred on working to ensure that every individual is supported and encouraged to make his/her own decisions and to achieve capacity. 

3.12 Legislation already in place in Great Britain namely, the Mental Capacity Act 2005 (MCA) and the Adults with Incapacity (Scotland) Act 2000, aims to protect the rights of people whose mental capacity is in doubt and legislate who is entitled to make decisions on behalf of an individual who is deemed to lack capacity.  The introduction of some form of capacity-based legislation in Northern Ireland is necessary to ensure greater legal protection for those with temporary or permanent impaired decision-making.  Naturally the Code will need to be revised and updated depending on the outcomes of any legislative changes within Northern Ireland.  We would recommend that the Code ensure that consent and capacity are prominent. 

Q6  Is the ethical and legal basis for secondary uses clear?  If not, how could this be clarified?

3.13 Notwithstanding our comments above, the ethical and legal basis for secondary uses is reasonably clear within the Code. 

Q7  Is the ethical and legal basis for making disclosures in the public interest clear?  If not, how could this be clarified?

3.14 The legal and ethical basis for making disclosures in the public interest is clear in the Code.  We would urge for caution however, in the implementation of this purpose and a second and expert opinion should always be sought before any disclosure of information is made in these circumstances.  Disclosures of this nature must be stringently monitored, carefully considered and must follow a standard procedure.

Q8 Are the “Examples of Confidentiality Decision in Practice” useful?  If not, can you suggest any other examples?

3.15 The scenarios are helpful but would be more useful if included within the body of the Code alongside further explanation of the issues they pertain to rather than within a separate appendix.  This will ensure that the practical examples are viewed alongside the detail which may aid HSC staff in understanding the principles contained within the Code.  The examples would also benefit from more decisive explanations under the term ‘discussion’ as they are somewhat vague and open ended as currently drafted. 

Q9 Are there situations which you encounter in your work which you feel that the Code does not offer guidance in handling?  If so, please describe.

3.16 No

Q10  Do you have any suggestions as to further guidance on confidentiality or privacy to which reference should be made?

3.17  Reference could be made to the recent General Medical Council work and consultation on Consent: patients and doctors making decisions together.  The issue of consent is a major theme within the draft Code and the GMC work includes various references to confidentiality and privacy. 

Q11  Do you have any further comments on the Code of Practice?

3.18 See general comments at paragraph 2 above.

4.  Conclusion

4.1  Law Centre (NI) welcomes the opportunity to respond to this consultation document.  If there is any further way in which we could contribute to this process we would welcome the opportunity to do so.