Select Committee on Health Written Evidence


Evidence submitted by the Royal College of Psychiatrists (EPR 25)

SUMMARY

  1.  The Royal College of Psychiatrists recognises the potential benefits that can accrue through improved information management and communication from the use of information technology as the basis for the patient's health record. It has the potential to provide better patient information, improved cost efficiency and more reliable information for quality control and health services planning. Nevertheless the developments of the Electronic Record transgress the traditional boundaries of the individual patients' direct relationship with a healthcare professional and creates "a new risk scenario which calls for new additional safeguards as counterbalance" (Article 29 Data Protection Working Party, 2007).

  2.  Where sharing of information outside the healthcare team is anticipated, including any proposed uplift of information to the summary care record, patients' express consent should be sought.

  3  Concerning information sharing for direct patient care, it will be important that those who need to know receive appropriate and accurate information and that clinicians, reflecting the wishes of their patients, retain control of the flows of this information. Dissemination of information should be as limited as possible, consistent with, among other things, the maintenance of a safe situation.

  4.  The use of patient identifiable information for secondary uses, including research, should be based on patient consent unless there is justification under Section 60.

  5.  The particular concerns and needs of specific groups of patients should be recognised. Mental health issues, where stigma continues to attach, must be recognised as one of several areas where patient information is of a particularly sensitive nature. Patients with mental health needs therefore may have understandable anxieties about the sharing of personal identifiable information for purposes and for distributions they have neither known of nor consented to. Four particular groups require specific consideration:

    —  Patients who are suspicious or paranoid.

    —  Patients within the criminal justice system (or with histories of the same).

    —  Patients with particular privacy needs (for example high public profile, witness protected).

    —  Patients with impaired decision making capacity.

BACKGROUND

  6.  We understand that the NHS Care Record Service (NCRS), being delivered by NHS Connecting for Health, is central to the National Programme for IT for England. It consists of several linked national and local applications to be delivered over the next few years as a network of patient records. The key elements of the NCRS are:

    —  the Summary Care Record (SCR) consisting of essential elements of a person's care records;

    —  the Detailed Care Record consisting of the person's care record for that organisation and elements of all care records relating to that person in other organisations.

  7.  The vehicle for information sharing will be the Summary Care Record. Significantly the report of the Ministerial Taskforce on the NHS SCR states "initially it (SCR) will contain a small but important dataset of current medications and allergies and adverse reactions which will be uplifted from GP systems, initially as text and subsequently in coded form. Over time the content will increase, subject to consent, to include a more complete dataset from GPs and also information from detailed records held by other providers of care for example hospitals and community services".

  8.  The College welcomes the Task Force's commitment to the highest levels of IT security.

CONSENTING ARRANGEMENTS

  9.  The Taskforce states "before the Summary Care Record is implemented in a geographical area, a public information programme will be carried out to explain to the public how it works... and how... members of the public... can limit the sharing of their information through the Summary Care Record". The Taskforce recognised clear difference of view between both the BMA and the Ethics Committee of RCGP on the one hand and the Department of Health, its advisors and many Royal Colleges on the other over issues of consent. The College has concerns regarding the ethical and possibly the legal justification for the placing of patient information on the Summary Care Record based solely on an information campaign and inferred consent in the absence of dissent (opt-out).

  10.  The College welcomes the following recommendations from the Task Group with respect to the foregoing:

    —  An Advisory Group of stakeholders drawn from patient, clinical and management interests is created to oversee the future development of the NHS Summary Care Record and to advise on its use.

    —  Patients must know what range of information is in the Summary Care Record and who will see it, and this process must continue throughout the development of the Summary Care Record. Once sealed envelopes are available patients will have far more control over who will see their information. The Summary Care Record will become more valuable over time as, with consent, its content becomes more complete. The Care Record Guarantee sets out how the NHS uses patient information and how it is protected.

  11.  It is our understanding that the initial arrangements for uplifting information from GP records to form the SCR (or spine) some diagnoses will not be uploaded. These include mental health, sexual health and some infections. The College is concerned that prescription information specific to a disease category, such as HIV medication or antipsychotic medication, will be included.

  12.  As patients present to their General Practitioner they will have the opportunity to check their SCR and to consent (or not) to their sensitive information being added to the Summary Care Record. The College position is that these arrangements must be rigorously upheld in order to ensure public and professional confidence and protect patient's privacy rights.

PATIENT INFORMATION ACQUIRED WITHIN SPECIALIST/SECONDARY CARE SERVICES INCLUDING MENTAL HEALTH SERVICES

  13.  The College has sought clarification on the proposed development of the SCR in relation to secondary care services with Mr Harry Cayton, Chair, Ministerial Task Force on the Summary Care Record. He has given a clear indication that the default position will be that not only can patients request not to have a Summary Care Record or that their Summary Care Record is not shared outside the organisation which created it, but can also request that some parts of their clinical information is not sent to their Summary Care Record. Later in the programme Sealed Envelopes will be available which will allow patients to "seal away" some of the information in their Summary Care Record so that it is only accessible with their express permission although the rest of the SCR may be available.

  14.  The College welcomes the establishment by the Care Record Development Board of a working group to explore the ethical issues surrounding the secondary uses of patient information.

THE COLLEGE'S POSITION ON PROTECTION, USES AND DISCLOSURE OF PATIENT IDENTIFIABLE INFORMATION

  15.  The College's guidance on confidentiality and information (Royal College of Psychiatrists 2006) provides guidance to its members relevant for all systems and media, including electronic patient records, Summary Care Records and Detailed Care Records.

PRINCIPLES

  16.  Psychiatrists must not disclose any clinical information about a patient to others, without that patient's consent. However, the Duty of Confidentiality also exists within a wider social context in which doctors have other moral and legal obligations, which may need to be balanced with their Duty of Confidentiality.

  17.  Although patient identifiable information is generally held under ethical and legal obligations of confidentiality, it is widely recognised that there are three categories of exception to the Duty of Confidence, and thus three categories of circumstance where the Duty of Confidentiality can be waived, namely:

    —  Where the individual to whom the information relates has consented;

    —  Where there is a legal compulsion or other legal basis to disclose otherwise confidential information, either by virtue of statutory law, or by order of the court;

    —  Where, in the opinion of the clinician, the duty to the public overrides the Duty of Confidentiality.

KEEPING PATIENTS INFORMED

  18.  Patients must be informed of both the primary uses (for their healthcare) and secondary uses (healthcare purposes not directly related to their care) of their healthcare information. They must also be informed of the choices surrounding such uses and whether they can opt out. Patients should also be informed about decisions to share information outside the NHS and the reasons why this is necessary. Explicit consent to such disclosure must be sought, and the outcome of the discussion recorded.

USES OF INFORMATION FOR DIRECT CLINICAL CARE

  19.  Where patients have been informed of the use and the sharing of their information, and the choice that they may have, then express consent is not usually required for the extent of the information sharing needed to provide healthcare. This guidance refers to the usual sharing within the patient's healthcare team.

SECONDARY USES

  20.  Many current uses of confidential patient information do not directly contribute to or support the healthcare that a particular patient receives, but instead provide more general benefits, such as patient groups as a whole. It cannot be assumed that patients seeking treatment are content for their information to be used in these ways. Patients are owed a Duty of Confidentiality and have the right to object to the use or sharing of confidential information that identifies them. Patients need to be made aware of this right. Efforts to gain consent are required. Alternatively approaches that do not rely on confidential and identifiable information should be adopted, for example anonymisation of information. Where patients object to specific secondary uses their refusal should be respected.

CONCLUSION

  21.  Based on the College Guidelines, a key principle informing all uses of the Electronic Patient Record is patient control of their information. In order to safeguard privacy patients must be given control over their records. Where sharing of information outside the healthcare team is anticipated, including any proposed uplift of information to the summary care record, patients' express consent must be sought. This is essential to upholding the dignity and rights of our patients, for maintaining their trust and confidence and is part of our duty of care. Concerning information sharing for direct patient care, it will be important that those who need to know receive appropriate and accurate information and that clinicians, reflecting the wishes of their patients, retain control of the flows of this information. Dissemination of information should be as limited as possible, consistent with, among other things, the maintenance of a safe situation. The use of patient identifiable information for secondary uses, including research, should be based on patient consent unless there is justification under Section 60.

  22.  While the foregoing applies to all patients, the particular concerns and needs of specific groups of patients should be recognised. Mental health issues, where stigma continues to attach, must be recognised as one of several areas where patient information is of a particularly sensitive nature. Patients with mental health needs therefore may have understandable anxieties about the sharing of personal identifiable information for purposes and for distributions they have neither known of nor consented to. Four particular groups require specific consideration:

    —  Patients who are suspicious or paranoid.

    —  Patients within the criminal justice system (or with histories of the same).

    —  Patients with particular privacy needs (for example high public profile, witness protected).

    —  Patients with impaired decision making capacity.

  23.  It will be important that such patients are not further disadvantaged as a consequence of any blanket rules regarding the Electronic Patient Record.

  24.  The College would welcome an opportunity to discuss these issues with the Committee.

Professor R J McClelland

Chair, Confidentiality Advisory Committee

12 March 2007

Prepared for the Royal College of Psychiatrists by its Advisory Committee on Confidentiality

ACKNOWLEDGEMENT AND REFERENCES

  The Confidentiality Sub-Committee gratefully acknowledged the advice of the Ethics Committee of the Royal College of General Practitioners.

      Article 29 Data Protection Working Party (2007), working document on the processing of personal data relating to health in electronic health records.

      Royal College of Psychiatrists (2006) Confidentiality and Information Sharing. Council Report 133.





 
previous page contents next page

House of Commons home page Parliament home page House of Lords home page search page enquiries index

© Parliamentary copyright 2007
Prepared 25 April 2007