Resource index: Data

All:

Approvals

• General Register Office for Scotland: NHSCR - How to apply

  How to apply for data from NHSCR.

• NHS IC Medical Research Information Service: Data Depot

  MRIS two way electronic file exchange system (login required).

• NHS Information Centre: Medical Research Information Service

  The Medical Research Information Service provides health information to support medical researchers.

• NRES: Ethical Review of Databases

  Specific guidance on the ethical review of research databases.

• NRES: Research Databases

  NRES general guidance on applying for ethical review for the establishment of a research database.

• Office for National Statistics - How to become an Approved Researcher

  ONS guidance on how to become an approved researcher.

• Privacy Advisory Committee for Scotland

  Web site on PAC remit, application process and Information Statistics Division.

• Privacy Advisory Committee for Scotland application form

  Link to PAC application form.

Audit

• Information Commissioner's Office Guidance on Data Protection Audits

  For all organisations holding identifiable personal data.

Confidentiality

• BMJ article: Confidentiality of personal health information used for research

  MRC Consent and Confidentiality group BMJ article by Dipak Kalra, Renate Gertz, Peter Singleton, Hazel M Inskip, BMJ 2006;333:196-198 (22 July). BMJ.com Extra: Tips for managing confidentiality.

• Confidentiality: NHS code of practice

  Department of Health guidance on patient information confidentiality issues.

• Confidentiality: NHS code of practice supplementary guidance

  Department of Health supplementary guidance on public interest disclosures.

• MRC Ethics Series: Personal Information in Medical Research

  PDF page 30 - Section 5: Safeguarding Confidentiality.

• MRC Ethics Series: Personal Information in Medical Research

  PDF page 32 - Section 5.3: Data Security.

• NHS Information Governance Toolkit

  NHS standards, applicable for all organisations holding identifiable data.

• NIGB Section 251 security arrangements: System Level Security Policy template

  Applications to use section 251 must complete a System Level Security Policy to provide proof of suitable security arrangements.

• Templates for confidentiality letters and agreements (doc)

  Three templates developed by the Confidentiality working group of the MRC Consent and Confidentiality project.

  Confidentiality agreements templates (56KB)

Consent (Data)

• BMA Confidentiality and disclosure of health information tool kit

  Guidance on confidentiality relating to children, adults who lack capacity and the deceased as well as the secondary uses of information.

• BMJ article: Consent for the use of personal medical data in research

  MRC Consent and Confidentiality group BMJ article by Peter Singleton and Michael Wadsworth, BMJ 2006;333:255-258 (29 July).

• Connecting for Health: CRDB secondary uses report

  Report of the Care Record Development Board Working Group on the Secondary Uses of Patient Information.

• MRC Ethics Series: Personal Information in Medical Research

  PDF page 16 - Section 3: covers the complex legal environment surrounding consent.

• MRC Ethics Series: Personal Information in Medical Research

  PDF page 38 - Section 8: Information and consent forms.

• MRC Ethics Series: Personal Information in Medical Research

  PDF page 42 - Annex 3: The Data Protection Act 1998.

• MRC Guidance: Consent for Consent (doc)

  Draft MRC guidance offering recommendations and drawing together existing guidance on accessing identifiable patient information without consent.

  MRC draft guidance Consent for Consent (54KB)

• PIAG leaflet: Information about patients

  Information about patients: An introduction to the Patient Information Advisory Group for health professionals and researchers.

Consent and Confidentiality (Data)

• BMJ article: Balancing potential risks and benefits of using confidential data

  MRC Consent and Confidentiality group BMJ article by Christina Davies, Rory Collins, et al, BMJ 2006;333:349-351 (12 August).

• Connecting for Health: Contact details

  Initial enquiry point for access to NHS IT networks.

• Information Commissioner’s Office Guidance

  For organisations that hold identifiable data.

• MRC Ethics Series: Personal Information in Medical Research

  PDF page 12 - Section 2: Principles for working with identifiable personal information.

• NHS IC Medical Research Information Service: Application flowchart

  Flowchart to help you with the process of applying to MRIS.

• NIGB - Ethics & Confidentiality Committee Applications

  Guidance for applications to the NIGB's Ethics & Confidentiality Committee who are responsible for providing section 251 approval to set aside the common law duty of confidentiality.

• NIGB - National Information Governance Board

  The National Information Governance Board for Health and Social Care (NIGB) is responsible for Section 251 of the NHS Act 2006 in England and Wales; and reviews applications for use of identifiable data where consent is not practicable.

Data

• Academy of Medical Sciences: Personal data for public good: using health information in medical research

  The Academy of Medical Sciences report looking at the use of patient information in medical research.

• Academy of Medical Sciences: Report of Legal Symposium

  Report of the legal symposium on ‘Personal data for public good: using health information in medical research.’

• Code of Practice to protect service user confidentiality (Northern Ireland)

  Code of Practice to protect service user confidentiality (Northern Ireland).

• General Register Office for Scotland: NHSCR Enquiries

  NHSCR enquiry contact details.

• HESonline

  Hospital Episode Statistics (HES) is the national statistical data warehouse for England of the care provided by NHS hospitals and for NHS hospital patients treated elsewhere. HES is the data source for a wide range of healthcare analysis for the NHS, government and many other organisations and individuals.

• Information Commissioner's Office: ICO register

  ICO public register of Data controllers.

• MRC Information Security Policy

  MRC Information Security Policy.

• NHS Connecting for Health

  Department of Health Informatics Directorate.

• NHS IC Medical Research Information Service: Contact

  Contact details for MRIS.

• NHS IC: Patient Consent Forms

  NHS Information Centre recommended participant information form wording.

• NHS Information Security Management: NHS Code of Practice

  NHS Information Security Management: NHS Code of Practice.

• Statistics and Registration Service Act 2007

  Statistics and Registration Service Act 2007.

Data Sharing

• MRC Ethics Series: Personal Information in Medical Research

  PDF page 36 - Section 7.2: Re-use of data by third parties.

• MRC Ethics Series: Personal Information in Medical Research

  PDF page 36 - Section 7: Storage and re-use of research data.

• Ministry of Justice: Data Sharing Review

  Link to the Data Sharing Report and recommendations by Richard Thomas and Mark Walport.

Information to participants

• Information Commissioner's Office Checklist

  For organisations handling access requests.

• MRC Ethics Series: Personal Information in Medical Research

  PDF page 34 - Section 6: Safeguarding other interests of the individual.

Public/Patient Involvement

• INVOLVE leaflet: Public involvement in research grant applications

  INVOLVE guidelines for researchers interested in public involvement in preparing grant applications.

• INVOLVE website

  INVOLVE promotes public involvement in NHS, public health and social care research, and provide useful advice on how to involve members of the public in research activities.

• PIAG leaflet: User Involvement

  PIAG guide outlining what user involvement in research is, its importance, the methods and what is appropriate for individual studies.

Risk Management and Monitoring

• MRC Guidance: Health and Safety A Practical Guide for Research Involving the Public

  An MRC publication giving advice about how to reduce the potential risks to research staff and the public.

• MRC Guidance: Risk Management in Public Health Research (doc)

  MRC guidance tool, outlining potential risks and strategies for managing and monitoring such risks (developed for MRC units, also applicable to others).

  MRC Guidance Risk management in public health research (114KB)